1 00:00:05,040 --> 00:00:07,520 >>WELCOME. 2 00:00:07,520 --> 00:00:10,520 THANK YOU FOR JOINING US TODAY. 3 00:00:10,520 --> 00:00:13,680 I KNOW THAT YOU HAVE VERY BUSY 4 00:00:13,680 --> 00:00:15,400 LIVES AND THAT YOU HAVE MANY 5 00:00:15,400 --> 00:00:17,320 DEMANDS ON YOUR PRECIOUS TIME 6 00:00:17,320 --> 00:00:18,720 AND WE REALLY APPRECIATE THAT 7 00:00:18,720 --> 00:00:20,120 YOU ARE CHOOSING TO SPEND THE 8 00:00:20,120 --> 00:00:22,240 NEXT TWO DAYS WITH US TALKING 9 00:00:22,240 --> 00:00:25,080 ABOUT THIS IMPORTANT TOPIC. 10 00:00:25,080 --> 00:00:27,240 MY NAME IS THERESA CRUZ AND I 11 00:00:27,240 --> 00:00:28,520 HAVE THE PLEASURE OF BEING THE 12 00:00:28,520 --> 00:00:30,360 DIRECTOR OF THE NATIONAL CENTER 13 00:00:30,360 --> 00:00:32,840 FOR MEDICAL REHABILITATION 14 00:00:32,840 --> 00:00:33,960 RESEARCH. 15 00:00:33,960 --> 00:00:35,840 WHICH IS LOCATED WITHIN THE 16 00:00:35,840 --> 00:00:38,640 EUNICE KENNEDY SCHRIBER NATIONAL 17 00:00:38,640 --> 00:00:41,160 INSTITUTE OF CHILD HEALTH AND 18 00:00:41,160 --> 00:00:41,680 HUMAN DEVELOPMENT. 19 00:00:41,680 --> 00:00:44,800 AND NCMRR IS THE HOST OF THIS 20 00:00:44,800 --> 00:00:45,280 CONFERENCE. 21 00:00:45,280 --> 00:00:47,000 MY VISUAL DESCRIPTION IS THAT I 22 00:00:47,000 --> 00:00:50,520 AM A MIDDLE-AGED WHITE WOMAN 23 00:00:50,520 --> 00:00:53,680 WITH CHIN-LENGTH BROWN HAIR AND 24 00:00:53,680 --> 00:00:54,840 BLUE EYES. 25 00:00:54,840 --> 00:00:55,840 I'M WEARING MY FAVORITE GREEN 26 00:00:55,840 --> 00:00:59,480 SHIRT AND I HAVE A BLUE ZOOM 27 00:00:59,480 --> 00:00:59,760 BACKGROUND. 28 00:00:59,760 --> 00:01:01,880 I WOULD ENCOURAGE THAT THE 29 00:01:01,880 --> 00:01:03,720 SPEAKERS TODAY AND TOMORROW 30 00:01:03,720 --> 00:01:06,280 PROVIDE A VISUAL DESCRIPTION 31 00:01:06,280 --> 00:01:07,880 BEFORE SPEAKING TO ACCOMMODATE 32 00:01:07,880 --> 00:01:18,400 THOSE WITH VISUAL IMPAIRMENTS. 33 00:01:21,040 --> 00:01:22,520 I'M GOING TO START OFF WITH 34 00:01:22,520 --> 00:01:23,720 HOUSEKEEPING AND ACCESSIBILITY 35 00:01:23,720 --> 00:01:24,480 FEATURES. 36 00:01:24,480 --> 00:01:25,680 THIS MEETING IS BEING RECORDED. 37 00:01:25,680 --> 00:01:28,640 YOU WILL BE ABLE TO WATCH THE 38 00:01:28,640 --> 00:01:30,120 RECORDING ON THE NIH VIDEO CAST 39 00:01:30,120 --> 00:01:30,760 WEBSITE. 40 00:01:30,760 --> 00:01:33,680 WE ASK THAT YOU PLEASE KEEP YOUR 41 00:01:33,680 --> 00:01:36,400 CAMERA AND MIC OFF WHEN NOT 42 00:01:36,400 --> 00:01:38,080 SPEAKING. 43 00:01:38,080 --> 00:01:41,320 IF YOU NEED TECHNICAL 44 00:01:41,320 --> 00:01:42,840 ASSISTANCE, PLEASE USE THE CHAT 45 00:01:42,840 --> 00:01:46,720 TO NOT CONTACT OUR LOGISTICS 46 00:01:46,720 --> 00:01:47,040 CONTRACTORS. 47 00:01:47,040 --> 00:01:48,400 IF APPROXIMATE YOU AREN'T ABLE 48 00:01:48,400 --> 00:01:50,840 TO ACCESS THE CHAT, PLEASE SEND 49 00:01:50,840 --> 00:01:52,320 AN E-MAIL WITH TECH SUPPORT IN 50 00:01:52,320 --> 00:02:02,680 THE SUBJECT LINE TO 51 00:02:11,120 --> 00:02:17,720 SSTARKE@INFINITYCONFERENCES COM 52 00:02:17,720 --> 00:02:22,920 COM. 53 00:02:22,920 --> 00:02:25,720 THERE ARE ASL INTERPRETERS AND 54 00:02:25,720 --> 00:02:27,160 REAL-TIME CAPTIONING AVAILABLE 55 00:02:27,160 --> 00:02:28,240 THROUGHOUT THE CONFERENCE. 56 00:02:28,240 --> 00:02:31,120 IN ORDER TO ACCESS THE 57 00:02:31,120 --> 00:02:33,480 CAPTIONING, PLEASE CLICK ON THE 58 00:02:33,480 --> 00:02:34,160 CLOSED CAPTION ICON. 59 00:02:34,160 --> 00:02:38,800 YOU CAN ADJUST THE SIZE OF THE 60 00:02:38,800 --> 00:02:40,720 CAPTIONS WITH THE UP CARAT AND 61 00:02:40,720 --> 00:02:46,560 THE BLUE DOT ON THE SLIDE. 62 00:02:46,560 --> 00:02:48,040 AND WE DO WANT THIS CONFERENCE 63 00:02:48,040 --> 00:02:50,440 TO BE A DIALOGUE. 64 00:02:50,440 --> 00:02:53,800 SO WE HAVE PLANNED TIME FOR Q&A 65 00:02:53,800 --> 00:02:54,080 THROUGHOUT. 66 00:02:54,080 --> 00:02:56,720 WE ASK THAT YOU PLEASE PUT YOUR 67 00:02:56,720 --> 00:02:59,480 QUESTIONS IN THE Q&A BUTTON AT 68 00:02:59,480 --> 00:03:04,280 THE BOTTOM OF YOUR ZOOM SCREEN 69 00:03:04,280 --> 00:03:05,200 AND THE NIH STAFF WILL RECEIVE 70 00:03:05,200 --> 00:03:06,800 THOSE QUESTIONS AND MODERATE THE 71 00:03:06,800 --> 00:03:17,160 DISCUSSIONS. 72 00:03:17,160 --> 00:03:18,960 SO BEFORE MOVING ON WITH THE 73 00:03:18,960 --> 00:03:20,600 PROGRAM, I WOULD LIKE US TO TAKE 74 00:03:20,600 --> 00:03:23,120 A BRIEF MOMENT OF SILENCE TO 75 00:03:23,120 --> 00:03:24,880 REFLECT ON THOSE IN THE 76 00:03:24,880 --> 00:03:26,040 DISABILITY COMMUNITY WHO ARE NO 77 00:03:26,040 --> 00:03:28,440 LONGER WITH US. 78 00:03:28,440 --> 00:03:30,880 PARTICULARLY THOSE WHO HAVE 79 00:03:30,880 --> 00:03:32,280 WORKED TO CHAMPION DISABILITY 80 00:03:32,280 --> 00:03:33,960 RIGHTS AND ADVOCATED FOR THE I 81 00:03:33,960 --> 00:03:39,200 AM CONCLUSIINCLUSION OF DISABILE 82 00:03:39,200 --> 00:03:41,040 IN SCIENTIFIC PROFESSIONS OR 83 00:03:41,040 --> 00:03:41,520 RESEARCH. 84 00:03:41,520 --> 00:03:42,760 LET US PAUSE TO REMEMBER THEIR 85 00:03:42,760 --> 00:03:47,200 LIVES AND CONTRIBUTIONS TO OUR 86 00:03:47,200 --> 00:03:57,320 WORK. 87 00:04:00,440 --> 00:04:01,040 >>Theresa Cruz: THANK YOU. 88 00:04:01,040 --> 00:04:03,200 I WANT TO THANK THE PLANNING 89 00:04:03,200 --> 00:04:04,960 COMMITTEE, WHO CAME FROM ACROSS 90 00:04:04,960 --> 00:04:06,960 MULTIPLE INSTITUTES NOT, CENTERS 91 00:04:06,960 --> 00:04:10,320 AND OFFICES AT NIH TO PUT 92 00:04:10,320 --> 00:04:11,520 TOGETHER THIS WORKSHOP. 93 00:04:11,520 --> 00:04:12,920 MANY OF WHOM YOU WILL MEET OVER 94 00:04:12,920 --> 00:04:15,200 THE COURSE OF THE CONFERENCE. 95 00:04:15,200 --> 00:04:17,440 I'D ALSO LIKE TO THANK OUR 96 00:04:17,440 --> 00:04:21,320 EXTERNAL CHAIRS, KATIE MCDONALD 97 00:04:21,320 --> 00:04:23,080 AND SHERRI WHO HELPED SHAPE THE 98 00:04:23,080 --> 00:04:23,320 AGENDA. 99 00:04:23,320 --> 00:04:25,360 I HAVE A SPECIAL THANKS FOR THE 100 00:04:25,360 --> 00:04:28,560 NIH OFFICE OF THE BEHAVIORAL AND 101 00:04:28,560 --> 00:04:29,640 SOCIAL SCIENCE FOR THEIR 102 00:04:29,640 --> 00:04:30,840 FINANCIAL CONTRIBUTION TO THE 103 00:04:30,840 --> 00:04:32,640 EVENT AND A HUGE THANKS TO THE 104 00:04:32,640 --> 00:04:34,800 LOGISTICS TEAM THAT IS WORKING 105 00:04:34,800 --> 00:04:41,800 BEHIND THE SCENES TO MAKE THIS 106 00:04:41,800 --> 00:04:42,520 CONFERENCE HAPPEN. 107 00:04:42,520 --> 00:04:47,360 IN RECENT YEARS, BIOMEDICAL AND 108 00:04:47,360 --> 00:04:49,280 BEHAVIORAL RESEARCH AT NIH HAS 109 00:04:49,280 --> 00:04:51,040 COME TO ACKNOWLEDGE MANY 110 00:04:51,040 --> 00:04:53,000 STEREOTYPES, ASSUMPTIONS OR 111 00:04:53,000 --> 00:04:54,840 OTHERRISMS INFLUENCED THE WORK 112 00:04:54,840 --> 00:04:56,280 THAT WE DO. 113 00:04:56,280 --> 00:04:57,880 THE QUESTIONS THAT WE ASK, THE 114 00:04:57,880 --> 00:04:59,920 STUDIES THAT WE CONDUCT, THE 115 00:04:59,920 --> 00:05:03,440 PARTICIPANTS WE ENGAGE WITH AND 116 00:05:03,440 --> 00:05:05,160 THE PEOPLE WE HIRE AND PROMOTE. 117 00:05:05,160 --> 00:05:06,920 THIS IS PART OF AN EVENT TO 118 00:05:06,920 --> 00:05:08,240 INCLUDE PEOPLE WITH DISABILITIES 119 00:05:08,240 --> 00:05:10,560 AND THE BARRIERS THEY EXPERIENCE 120 00:05:10,560 --> 00:05:13,200 IN THAT LARGER CONVERSATION OF 121 00:05:13,200 --> 00:05:16,080 INCLUSION AND EQUITY. 122 00:05:16,080 --> 00:05:18,120 I'VE DONE A LITTLE INTERVIEWING 123 00:05:18,120 --> 00:05:21,960 AND I BELIEVE THAT THIS IS NIH'S 124 00:05:21,960 --> 00:05:23,560 FIRST CONFERENCE ON ABLEISM. 125 00:05:23,560 --> 00:05:25,560 I DON'T KNOW ABOUT YOU, BUT THE 126 00:05:25,560 --> 00:05:27,760 FIRST TIME I DO SOMETHING, IT'S 127 00:05:27,760 --> 00:05:30,440 NEVER QUITE AS GOOD AS I WANT IT 128 00:05:30,440 --> 00:05:31,320 TO BE. 129 00:05:31,320 --> 00:05:35,160 THE PLANNING COMMITTEE HAS 130 00:05:35,160 --> 00:05:36,360 STRIVEN FOR IN CONCLUSIVE TEE 131 00:05:36,360 --> 00:05:37,800 AND DIVERSITY OF PERSPECTIVES 132 00:05:37,800 --> 00:05:39,440 BUT THERE ARE AREAS THAT WE HAVE 133 00:05:39,440 --> 00:05:40,320 MISSED. 134 00:05:40,320 --> 00:05:42,680 THE DISABILITY COMMUNITY IS WIDE 135 00:05:42,680 --> 00:05:44,840 AND VARIED AND WE MAY NOT BE 136 00:05:44,840 --> 00:05:46,640 REPRESENTING ALL THE VIEWS AND 137 00:05:46,640 --> 00:05:50,920 PERSPECTIVES OF THOSE DEVRIES 138 00:05:50,920 --> 00:05:51,200 COMMUNITIES. 139 00:05:51,200 --> 00:05:52,160 WITH THE ADMISSION OF THAT SHORT 140 00:05:52,160 --> 00:05:54,400 COMING IN ADVANCE, I WELCOME 141 00:05:54,400 --> 00:05:55,760 YOUR FEEDBACK ABOUT THE AREAS WE 142 00:05:55,760 --> 00:06:04,200 NEED TO EXPLORE FURTHER AND AND 143 00:06:04,200 --> 00:06:06,400 WHAT NEEDS TO BE ADVANCED. 144 00:06:06,400 --> 00:06:08,240 JUST BECAUSE THIS IS NIH'S FIRST 145 00:06:08,240 --> 00:06:09,240 WORKSHOP ON THE TOPIC. 146 00:06:09,240 --> 00:06:11,720 I DO NOT MEAN TO IMPLY THE 147 00:06:11,720 --> 00:06:15,800 CONCEPT OF ABLEISM O THE MOVEMET 148 00:06:15,800 --> 00:06:17,120 FOR DISABILITY JUSTICE IS NEW. 149 00:06:17,120 --> 00:06:19,200 THIS IS A LONGSTANDING FIGHT FOR 150 00:06:19,200 --> 00:06:23,760 CIVIL RIGHTS BY THE DISABILITY 151 00:06:23,760 --> 00:06:25,040 COMMUNITY. 152 00:06:25,040 --> 00:06:26,320 CULMINATING REALLY IN THE 153 00:06:26,320 --> 00:06:28,960 PASSAGE OF THE REHABILITATION 154 00:06:28,960 --> 00:06:30,960 ACT OF 1973. 155 00:06:30,960 --> 00:06:33,560 WE'RE CELEBRATING 50 YEARS OF 156 00:06:33,560 --> 00:06:36,720 THE REHAB ACT WHICH PROHIBITS 157 00:06:36,720 --> 00:06:39,800 DISCRIMINATION ON THE BASIS OF 158 00:06:39,800 --> 00:06:40,720 DISABILITY AND PROGRAMS 159 00:06:40,720 --> 00:06:42,880 CONDUCTED BY FEDERAL AGENCIES, 160 00:06:42,880 --> 00:06:45,120 AND FEDERAL EMPLOYMENT, AND THE 161 00:06:45,120 --> 00:06:48,440 EMPLOYMENT PRACTICES OF FEDERAL 162 00:06:48,440 --> 00:06:49,120 CONTRACTORS. 163 00:06:49,120 --> 00:06:51,160 GIVEN THIS LANDMARK LEGISLATION, 164 00:06:51,160 --> 00:06:53,880 AND THE LEGISLATION THAT HAVE 165 00:06:53,880 --> 00:06:54,680 FOLLOWED, LIKE THE AMERICAN'S 166 00:06:54,680 --> 00:06:57,360 WITH DISABILITIES ACT, EVEN WITH 167 00:06:57,360 --> 00:06:58,800 THEM, WE KNOW THAT THERE'S MORE 168 00:06:58,800 --> 00:07:01,760 WORK THAT NEEDS TO BE DONE. 169 00:07:01,760 --> 00:07:03,200 JUST PART OF THE REASON WE'RE 170 00:07:03,200 --> 00:07:06,200 HAVING THIS CONFERENCE. 171 00:07:06,200 --> 00:07:09,440 IT'S MY HOPE THAT THIS WORKSHOP 172 00:07:09,440 --> 00:07:11,880 ELEVATES THE CONVERSATION AT NIH 173 00:07:11,880 --> 00:07:15,160 ABOUT ABLEISM AND PROVIDES A 174 00:07:15,160 --> 00:07:17,680 PLATFORM TO HEAR THE WORK BY OUR 175 00:07:17,680 --> 00:07:18,680 SPEAKERS. 176 00:07:18,680 --> 00:07:20,440 TO BRIEFLY GO OVER THE AGENDA, 177 00:07:20,440 --> 00:07:23,080 WE HAVE FOUR SESSIONS OVER TWO 178 00:07:23,080 --> 00:07:23,280 DAYS. 179 00:07:23,280 --> 00:07:26,680 TODAY WE'LL HEAR A KEYNOTE FROM 180 00:07:26,680 --> 00:07:28,000 BONNIE SWENOR WHO WILL GIVE US A 181 00:07:28,000 --> 00:07:29,000 CALL TO ACTION. 182 00:07:29,000 --> 00:07:32,320 FOLLOWED BY SESSION 1 WHERE THE 183 00:07:32,320 --> 00:07:34,120 SPEAKERS WILL DEFINABLISM AND 184 00:07:34,120 --> 00:07:36,560 DESCRIBE HOW IT MANIFESTS IN 185 00:07:36,560 --> 00:07:41,080 RESEARCH AND HEALTHCARE. 186 00:07:41,080 --> 00:07:43,760 IN SESSION 2 HOW ABLEISM 187 00:07:43,760 --> 00:07:44,800 DISABILITIES AND HEALTH 188 00:07:44,800 --> 00:07:46,680 DISPARITIES AND WE WILL WRAP-UP 189 00:07:46,680 --> 00:07:50,040 WITH A PANEL OF EXPERTS. 190 00:07:50,040 --> 00:07:53,120 PEOPLE WITH LIVED EXPERIENCE WHO 191 00:07:53,120 --> 00:07:55,360 ARE ENGAGING IN BIOMEDICAL 192 00:07:55,360 --> 00:07:56,600 RESEARCH TO MAKE THAT RESEARCH 193 00:07:56,600 --> 00:08:00,000 MORE IMPACTFUL TO PEOPLE WITH 194 00:08:00,000 --> 00:08:01,080 DISABILITIES. 195 00:08:01,080 --> 00:08:02,760 TOMORROW, WE'LL START AT 10:30, 196 00:08:02,760 --> 00:08:07,600 SO HALF AN HOUR EARLIER WITH AN 197 00:08:07,600 --> 00:08:11,200 INTERVIEW WITH DISABILITY 198 00:08:11,200 --> 00:08:14,160 ADVOCATE GAELYNN LEA AND A 199 00:08:14,160 --> 00:08:16,400 KEYNOTE AND THE NEXT SESSION 200 00:08:16,400 --> 00:08:20,440 WILL BE ON TRAINING AND CAREER 201 00:08:20,440 --> 00:08:22,080 DEVELOPMENTS FOCUSING ON 202 00:08:22,080 --> 00:08:23,840 EDUCATING CLINICIANS ABOUT 203 00:08:23,840 --> 00:08:25,480 DISABILITY AS WELL AS HOW 204 00:08:25,480 --> 00:08:27,000 RESEARCHERS AND CLINICIANS WITH 205 00:08:27,000 --> 00:08:28,440 DISABILITY NAVIGATE THEIR 206 00:08:28,440 --> 00:08:29,280 CAREERS. 207 00:08:29,280 --> 00:08:31,520 AND WE'LL HAVE PRESENTATIONS 208 00:08:31,520 --> 00:08:33,480 ABOUT THINGS WE CAN BE DOING 209 00:08:33,480 --> 00:08:36,080 RIGHT NOW TO BE MORE INCLUSIVE 210 00:08:36,080 --> 00:08:37,680 WITH OUR WORK. 211 00:08:37,680 --> 00:08:39,920 AND THEN FINALLY, I'M VERY 212 00:08:39,920 --> 00:08:47,360 PLEASED THAT LISA IEZZONI THAT 213 00:08:47,360 --> 00:08:50,240 WILL BE A TRIBUTE TO JUDY HUMAN. 214 00:08:50,240 --> 00:08:51,720 MANY OF YOU KNOW OF JUDY. 215 00:08:51,720 --> 00:08:53,480 SHE WAS AN INTERNATIONALLY 216 00:08:53,480 --> 00:08:54,720 CELEBRATED CIVIL RIGHTS ADVOCATE 217 00:08:54,720 --> 00:08:57,840 FOR THE DISABILITY COMMUNITY. 218 00:08:57,840 --> 00:08:58,720 SOMETIMES REFERRED TO AS THE 219 00:08:58,720 --> 00:09:00,840 MOTHER OF THE DISABILITY RIGHTS 220 00:09:00,840 --> 00:09:01,120 MOVEMENT. 221 00:09:01,120 --> 00:09:03,840 AND UNFORTUNATELY SHE PASSED 222 00:09:03,840 --> 00:09:05,720 AWAY IN MARCH. 223 00:09:05,720 --> 00:09:07,880 BEFORE I INTRODUCE OUR KEYNOTE 224 00:09:07,880 --> 00:09:10,520 SPEAKER, I WOULD LIKE TO MAKE A 225 00:09:10,520 --> 00:09:16,320 REQUEST ABOUT LANGUAGE. 226 00:09:16,320 --> 00:09:18,120 LANGUAGE IS AROUND IDENTITY IS 227 00:09:18,120 --> 00:09:19,600 PERSONAL. 228 00:09:19,600 --> 00:09:20,480 SPEAKERS AND AUDIENCE MEMBERS 229 00:09:20,480 --> 00:09:22,400 WILL HAVE THEIR OWN PERSONAL 230 00:09:22,400 --> 00:09:23,120 PREFERENCES. 231 00:09:23,120 --> 00:09:25,120 IN THIS CONFERENCE WE WERE USE 232 00:09:25,120 --> 00:09:27,880 THE TERM "PERSON WITH A 233 00:09:27,880 --> 00:09:30,320 DISABILITY," AS WELL AS" 234 00:09:30,320 --> 00:09:32,040 DISABLED PERSON" BECAUSE THAT'S 235 00:09:32,040 --> 00:09:33,240 HOW PEOPLE HAVE SELF-IDENTIFIED 236 00:09:33,240 --> 00:09:34,520 USING BOTH OF THOSE TERMS. 237 00:09:34,520 --> 00:09:36,920 IS ASK THAT WE ARE CIVIL, THAT 238 00:09:36,920 --> 00:09:39,480 WE HAVE A SAFE ENVIRONMENT FOR 239 00:09:39,480 --> 00:09:40,880 PEOPLE TO SHARE DIFFERENCES OF 240 00:09:40,880 --> 00:09:43,000 OPINION ARE INEVITABLE BUT THEY 241 00:09:43,000 --> 00:09:47,360 CAN BE EXPRESSED RESPECTFULLY. 242 00:09:47,360 --> 00:09:51,440 WITH ALL THAT, IT IS MY ABSOLUTE 243 00:09:51,440 --> 00:09:54,400 PLEASURE TO INTRODUCE BONNIE 244 00:09:54,400 --> 00:09:56,400 SWENOR, Dr. SWENOR IS AN 245 00:09:56,400 --> 00:09:58,280 ASSOCIATE PROFESSOR AT JOHNS 246 00:09:58,280 --> 00:09:59,800 HOPKINS SCHOOL OF NURSING, 247 00:09:59,800 --> 00:10:00,880 MEDICINE, AND PUBLIC-HEALTH AND 248 00:10:00,880 --> 00:10:03,120 ONE OF THE FOUNDER AND DIRECTOR 249 00:10:03,120 --> 00:10:04,680 OF JOHNS HOPKINS DISABILITY 250 00:10:04,680 --> 00:10:06,440 HEALTH RESEARCH CENTER WHICH 251 00:10:06,440 --> 00:10:09,640 AIMS TO SHIFT THE PARADIGM FROM 252 00:10:09,640 --> 00:10:11,280 LIVING WITH A DISABILITY TO 253 00:10:11,280 --> 00:10:13,320 THRIVING WITH A DISABILITY. 254 00:10:13,320 --> 00:10:15,080 MOTIVATED BY HER PERSONAL 255 00:10:15,080 --> 00:10:17,120 EXPERIENCES WITH VISUAL 256 00:10:17,120 --> 00:10:19,720 DISABILITIES, HER WORK TAKES A 257 00:10:19,720 --> 00:10:21,280 DATA-DRIVEN APPROACH TO 258 00:10:21,280 --> 00:10:22,320 ADVANCING HEALTH EQUITY FOR 259 00:10:22,320 --> 00:10:25,000 PEOPLE WITH DISABILITIES AND 260 00:10:25,000 --> 00:10:26,800 PROMOTING DISABILITY INCLUSION 261 00:10:26,800 --> 00:10:30,800 AND HIGHER EDUCATION, STEM, 262 00:10:30,800 --> 00:10:36,360 PUBLIC-HEALTH, AND RESEARCH. 263 00:10:36,360 --> 00:10:36,880 -- STEMM. 264 00:10:36,880 --> 00:10:39,560 TAKE IT AWAY, BONNIE. 265 00:10:39,560 --> 00:10:40,480 >>Bonnielin Swenor: THANK YOU 266 00:10:40,480 --> 00:10:44,840 FOR THAT WONDERFUL INTRODUCTION 267 00:10:44,840 --> 00:10:46,680 AND DESCRIPTION OF THE 268 00:10:46,680 --> 00:10:49,280 CONFERENCE, THERESA. 269 00:10:49,280 --> 00:10:52,040 I'M BONNIELIN SWENOR AND MY 270 00:10:52,040 --> 00:10:54,320 VISUAL DESCRIPTION IS I AM A 271 00:10:54,320 --> 00:10:57,960 MIDDLE-AGED WHITE WOMAN WITH 272 00:10:57,960 --> 00:10:58,680 SHOULDER-LENGTH BLOND HAIR 273 00:10:58,680 --> 00:10:59,920 SITTING IN MY OFFICE IN 274 00:10:59,920 --> 00:11:00,160 BALTIMORE. 275 00:11:00,160 --> 00:11:04,840 I WANT TO FIRST SAY, THANK YOU 276 00:11:04,840 --> 00:11:06,000 TO EVERYONE WHO ORGANIZED THIS 277 00:11:06,000 --> 00:11:07,440 IMPORTANT CONVERSATION AND 278 00:11:07,440 --> 00:11:08,520 CONFERENCE AND NIH FOR HOSTING 279 00:11:08,520 --> 00:11:11,240 THIS INAUGURAL DISCUSSION ON 280 00:11:11,240 --> 00:11:14,440 ABLEISM AND TO ECHO Dr. CRUZ'S 281 00:11:14,440 --> 00:11:16,360 SENTIMENT, HOPEFULLY NOT TO BE 282 00:11:16,360 --> 00:11:17,080 THE LAST. 283 00:11:17,080 --> 00:11:24,440 I ALSO TO EXTEND MY GRATITUDE TO 284 00:11:24,440 --> 00:11:25,840 MY PANELISTS ABOUT ABLEISM, 285 00:11:25,840 --> 00:11:27,840 DISABILITY AND INCLUSION, 286 00:11:27,840 --> 00:11:28,440 ACCESSIBILITY. 287 00:11:28,440 --> 00:11:30,160 I'M SO GRATEFUL FOR ALL OF THEIR 288 00:11:30,160 --> 00:11:31,560 WORK AND SO MANY OTHERS WHO ARE 289 00:11:31,560 --> 00:11:33,560 DEDICATED TO MAKING PROGRESS FOR 290 00:11:33,560 --> 00:11:35,720 OUR DISABILITY COMMUNITY. 291 00:11:35,720 --> 00:11:38,760 I AM TRULY HONORED TO BE OPENING 292 00:11:38,760 --> 00:11:40,000 THIS DISCUSSION AND FOR THOSE OF 293 00:11:40,000 --> 00:11:42,400 YOU WHO KNOW ME, IT'S NO 294 00:11:42,400 --> 00:11:47,920 SURPRISE WITH A CALL TO ACTION. 295 00:11:47,920 --> 00:11:49,680 I WANT TO START BY ASKING YOU 296 00:11:49,680 --> 00:11:51,800 ALL TO THINK ABOUT DISABILITY. 297 00:11:51,800 --> 00:11:56,000 TO THINK ABOUT THAT WORD, HOW 298 00:11:56,000 --> 00:11:56,720 YOU DEFINE IT. 299 00:11:56,720 --> 00:11:59,280 WHAT THAT WORD MEANS TO YOU. 300 00:11:59,280 --> 00:12:01,840 AND IF THAT WORD BRINGS ABOUT 301 00:12:01,840 --> 00:12:05,680 FEELINGS THAT ARE POSITIVE, 302 00:12:05,680 --> 00:12:08,400 NEGATIVE, OR EVEN NEUTRAL. 303 00:12:08,400 --> 00:12:10,600 WHILE YOU ARE THINKING ABOUT 304 00:12:10,600 --> 00:12:12,880 THAT, THINK ABOUT WHO ARE THE 305 00:12:12,880 --> 00:12:16,080 EXPERTS IN DISABILITY. 306 00:12:16,080 --> 00:12:21,520 DOCTORS, NURSES, RESEARCHERS, 307 00:12:21,520 --> 00:12:24,080 REHABILITATION EXPERTS, 308 00:12:24,080 --> 00:12:24,880 CAREGIVERS. 309 00:12:24,880 --> 00:12:27,080 WHO HAVE WE HISTORICALLY GONE TO 310 00:12:27,080 --> 00:12:31,160 FOR EXPERTISE ON PEOPLE WITH 311 00:12:31,160 --> 00:12:31,600 DISABILITIES? 312 00:12:31,600 --> 00:12:33,880 AND WHILE YOU ARE THINKING ABOUT 313 00:12:33,880 --> 00:12:37,280 THAT, ASK YOURSELF IF YOU 314 00:12:37,280 --> 00:12:37,880 IMAGINE THOSE INDIVIDUALS DO 315 00:12:37,880 --> 00:12:39,960 THEY THEMSELVES HAVE 316 00:12:39,960 --> 00:12:40,800 DISABILITIES? 317 00:12:40,800 --> 00:12:44,240 AND IF NOT, WHY NOT. 318 00:12:44,240 --> 00:12:46,320 SO I ASKED THESE QUESTIONS AT 319 00:12:46,320 --> 00:12:48,280 THE START TO CHALLENGE LONG 320 00:12:48,280 --> 00:12:50,080 HEALTH STEREOTYPES ABOUT 321 00:12:50,080 --> 00:12:51,640 DISABILITY IN RESEARCH IN 322 00:12:51,640 --> 00:12:53,880 MEDICINE AND ACROSS SOCIETY AND 323 00:12:53,880 --> 00:12:58,000 DURING THIS CONFERENCE, 324 00:12:58,000 --> 00:12:59,240 ANTIQUATED VIEWS OF DISABILITY 325 00:12:59,240 --> 00:13:00,680 WILL BE CHALLENGED. 326 00:13:00,680 --> 00:13:02,120 FOR SOME THIS IS UNCOMFORTABLE 327 00:13:02,120 --> 00:13:03,600 AND NEW AND FOR OTHERS THIS WILL 328 00:13:03,600 --> 00:13:05,720 SEEM LONG OVERDUE. 329 00:13:05,720 --> 00:13:06,560 REGARDLESS OF WHERE YOU ARE IN 330 00:13:06,560 --> 00:13:08,920 THAT JOURNEY, I HOPE YOU COME TO 331 00:13:08,920 --> 00:13:10,760 THIS CONVERSATION READY TO FIND 332 00:13:10,760 --> 00:13:12,840 NEW WAYS TO SUPPORT EQUITY AND 333 00:13:12,840 --> 00:13:15,200 JUSTICE FOR ALL OF US. 334 00:13:15,200 --> 00:13:23,440 FOR EVERYONE IN SOCIETY. 335 00:13:23,440 --> 00:13:25,320 AS Dr. CRUZ INDICATED THE TERM 336 00:13:25,320 --> 00:13:27,280 ABLEISM IS NOT A ANY ONE. 337 00:13:27,280 --> 00:13:32,720 BUT IT'S OFTEN NEW TO MANY. 338 00:13:32,720 --> 00:13:34,240 THE FOLLOWING SESSION WILL 339 00:13:34,240 --> 00:13:37,640 DISCUSS THIS CONCEPT DEEPLY, 340 00:13:37,640 --> 00:13:39,720 WHICH THANKFULLY HAS GOTTEN MORE 341 00:13:39,720 --> 00:13:40,440 ATTENTION. 342 00:13:40,440 --> 00:13:41,360 A RECENT "WASHINGTON POST" 343 00:13:41,360 --> 00:13:42,720 ARTICLE THAT DESCRIBED ABLEISM 344 00:13:42,720 --> 00:13:44,240 AS BEING ROOTED IN THE 345 00:13:44,240 --> 00:13:46,000 ASSUMPTION THAT NON DISABLED 346 00:13:46,000 --> 00:13:48,480 PEOPLE ARE THE IDEAL. 347 00:13:48,480 --> 00:13:53,120 IT'S A GREAT ARTICLE AND IT HAD 348 00:13:53,120 --> 00:13:54,120 A QUIZ ASSOCIATED IN IT. 349 00:13:54,120 --> 00:13:55,480 FOR ANYONE INTERESTED, I SUGGEST 350 00:13:55,480 --> 00:13:57,920 YOU NAVIGATE TO IT. 351 00:13:57,920 --> 00:13:59,840 BUT THIS DEFINITION, THAT NON 352 00:13:59,840 --> 00:14:02,240 DISABLED PEOPLE ARE THE IDEAL, 353 00:14:02,240 --> 00:14:05,040 REALLY OUTLINES HOW ABLEISM 354 00:14:05,040 --> 00:14:09,160 SHAPES AND UNDERLIES OUR VIEWS 355 00:14:09,160 --> 00:14:10,120 OF HEALTH. 356 00:14:10,120 --> 00:14:11,680 IT'S SUCH A DEEPLY EMBEDDED 357 00:14:11,680 --> 00:14:13,600 CONCEPT ACROSS SOCIETY, 358 00:14:13,600 --> 00:14:15,000 ESPECIALLY IN MEDICINE, 359 00:14:15,000 --> 00:14:16,800 PUBLIC-HEALTH AND BIOMEDICAL 360 00:14:16,800 --> 00:14:17,480 RESEARCH. 361 00:14:17,480 --> 00:14:21,840 AND IT'S ONE THAT WE HAVEN'T 362 00:14:21,840 --> 00:14:28,960 CHALLENGED ENOUGH. 363 00:14:28,960 --> 00:14:30,440 ABLEISM IS EVERYWHERE. 364 00:14:30,440 --> 00:14:32,640 IT'S INSTITUTIONALIZED AND 365 00:14:32,640 --> 00:14:34,080 STRUCTURAL IN OUR BELIEVING AND 366 00:14:34,080 --> 00:14:38,440 ENVIRONMENTS AND IT CAN BE 367 00:14:38,440 --> 00:14:39,400 INTERNALIZED. 368 00:14:39,400 --> 00:14:40,760 EVEN WITHIN DISABLED PEOPLE. 369 00:14:40,760 --> 00:14:42,160 ON THE SLIDE, I'M SHOWING AN 370 00:14:42,160 --> 00:14:45,240 IMAGE OF AN ESCALATOR AT A D.C. 371 00:14:45,240 --> 00:14:47,000 METRO STOP IS WHERE MY OWN 372 00:14:47,000 --> 00:14:49,720 PERSONAL JOURNEY WITH DISABILITY 373 00:14:49,720 --> 00:14:50,840 BEGAN ALMOST 20 YEARS AGO. 374 00:14:50,840 --> 00:14:52,240 THIS WAS THE EXPECT SPOT WHERE I 375 00:14:52,240 --> 00:14:54,240 HAD A SUDDEN LOSS OF VISION THAT 376 00:14:54,240 --> 00:14:56,840 LED TO A DIAGNOSIS AND CONTINUED 377 00:14:56,840 --> 00:15:03,160 VISION LOSS OVER THAT TIME. 378 00:15:03,160 --> 00:15:06,160 BACK THEN, ALL I KNEW ABOUT 379 00:15:06,160 --> 00:15:09,480 DISABILITY IS WHAT SOCIETY 380 00:15:09,480 --> 00:15:09,880 TAUGHT ME. 381 00:15:09,880 --> 00:15:11,240 IT WAS BAD AND LIFE WAS OVER. 382 00:15:11,240 --> 00:15:12,880 I NEEDED TO BE ASHAMED AND GIVE 383 00:15:12,880 --> 00:15:13,040 UP. 384 00:15:13,040 --> 00:15:14,920 I SHOULD STOP PURSUING MY GOALS 385 00:15:14,920 --> 00:15:17,640 OF BEING A RESEARCHER. 386 00:15:17,640 --> 00:15:19,400 AT THAT MOMENT, I HAD JUST 387 00:15:19,400 --> 00:15:22,440 APPLIED TO GRADUATE SCHOOL. 388 00:15:22,440 --> 00:15:23,920 THESE WERE THE TYPES OF MESSAGES 389 00:15:23,920 --> 00:15:25,160 THAT I WAS RECEIVING DIRECTLY 390 00:15:25,160 --> 00:15:27,560 FROM FRIENDS AND FAMILY AND 391 00:15:27,560 --> 00:15:28,520 INDIRECTLY, THROUGH THE 392 00:15:28,520 --> 00:15:30,440 EXCLUSION OF THIS INACCESSIBLE 393 00:15:30,440 --> 00:15:32,240 WORLD AND THE LACK OF 394 00:15:32,240 --> 00:15:33,640 REPRESENTATION OF PEOPLE LIKE ME 395 00:15:33,640 --> 00:15:36,440 IN SCIENCE AND RESEARCH. 396 00:15:36,440 --> 00:15:38,960 I BATTLE ABLEISM EVERY SINGLE 397 00:15:38,960 --> 00:15:40,680 DAY AND HAVE SINCE THEN. 398 00:15:40,680 --> 00:15:44,440 SO DO SO MANY PEOPLE WITHIN THE 399 00:15:44,440 --> 00:15:45,040 DISABILITY COMMUNITY. 400 00:15:45,040 --> 00:15:47,200 I PERSONALLY BATTLE IT WITHIN 401 00:15:47,200 --> 00:15:48,120 MYSELF. 402 00:15:48,120 --> 00:15:50,600 I STILL FIGHT AGAINST THE DEEPLY 403 00:15:50,600 --> 00:15:52,000 INGRAINED NEGATIVE VIEWS OF 404 00:15:52,000 --> 00:15:53,840 DISABILITY THAT I'VE 405 00:15:53,840 --> 00:15:54,880 INTERNALIZED AND SOMETIMES BRING 406 00:15:54,880 --> 00:15:56,640 ME FEELINGS OF SHAME. 407 00:15:56,640 --> 00:15:59,280 I BATTLE ABLEISM IN MY CAREER AS 408 00:15:59,280 --> 00:16:04,040 A RESEARCH ECOSYSTEM, EXCLUDES 409 00:16:04,040 --> 00:16:05,520 DISABLED PEOPLE AT EVERY LEVEL. 410 00:16:05,520 --> 00:16:07,200 I BATTLE ABLEISM IN SOCIETY 411 00:16:07,200 --> 00:16:10,320 THROUGH MY WORK AND MY ADVOCACY 412 00:16:10,320 --> 00:16:12,360 AS MANY DO, WHICH IS MY CHOICE, 413 00:16:12,360 --> 00:16:20,800 BUT IS ALSO AN ACT OF SURVIVAL. 414 00:16:20,800 --> 00:16:22,720 BECAUSE DISABILITY IS SO COMMON, 415 00:16:22,720 --> 00:16:25,040 ABLEISM MUST BE CONSIDERED A 416 00:16:25,040 --> 00:16:27,000 FORMIDABLE THREAT TO EQUITY, TO 417 00:16:27,000 --> 00:16:28,120 RESEARCH, TO MEDICINE, FOR EVERY 418 00:16:28,120 --> 00:16:32,600 ONE OF US. 419 00:16:32,600 --> 00:16:34,760 ONE OF FOUR AMERICAN ADULTS OR 420 00:16:34,760 --> 00:16:35,720 67 MILLION PEOPLE HAVE A 421 00:16:35,720 --> 00:16:36,520 DISABILITY. 422 00:16:36,520 --> 00:16:37,800 THIS MEANS THAT THE WAYS IN 423 00:16:37,800 --> 00:16:39,760 WHICH WE STUDY CARE FOR AND 424 00:16:39,760 --> 00:16:41,800 INCLUDE DISABLED PEOPLE MATTERS. 425 00:16:41,800 --> 00:16:43,840 AND IMPACTS A LARGE PERCENTAGE 426 00:16:43,840 --> 00:16:49,920 OF OUR POPULATION. 427 00:16:49,920 --> 00:16:51,800 NIH'S FOCUS IS ON ADVANCING 428 00:16:51,800 --> 00:16:54,280 HEALTH AND HEALTH EQUITY. 429 00:16:54,280 --> 00:16:57,720 TO DO THAT, ABLEISM MUST BE PART 430 00:16:57,720 --> 00:16:59,920 OF ALL OF THOSE EFFORTS. 431 00:16:59,920 --> 00:17:02,040 AS ABLEISM IS A ROOT CAUSE OF 432 00:17:02,040 --> 00:17:03,040 THE HEALTH INEQUITIES FOR 433 00:17:03,040 --> 00:17:04,920 DISABLED PEOPLE, AND DISABLED 434 00:17:04,920 --> 00:17:06,480 PEOPLE ARE THE LARGEST MINORITY 435 00:17:06,480 --> 00:17:12,240 GROUP IN THE UNITED STATES. 436 00:17:12,240 --> 00:17:14,040 ON THIS SLIDE, I'M SHOWING 437 00:17:14,040 --> 00:17:16,720 EVIDENCE OF THOSE HEALTH 438 00:17:16,720 --> 00:17:18,440 DISPARITIES AND INEQUITIES THAT 439 00:17:18,440 --> 00:17:19,240 DISABLED PEOPLE FACE. 440 00:17:19,240 --> 00:17:21,600 THIS IS WORK FROM GLORIA CRON 441 00:17:21,600 --> 00:17:24,040 AND HER COLLEAGUES ON A LANDMARK 442 00:17:24,040 --> 00:17:26,720 PAPER THAT HELPED FRAME PEOPLE 443 00:17:26,720 --> 00:17:30,920 WITH DISABILITIES AS A HEALTH 444 00:17:30,920 --> 00:17:33,800 DISPROPORTIDIS PARTATION POPULA. 445 00:17:33,800 --> 00:17:34,800 IT'S RESULT THAT'S SHOW PEOPLE 446 00:17:34,800 --> 00:17:37,120 WITH DISABILITIES HAVE A HIGHER 447 00:17:37,120 --> 00:17:39,480 PERCENTAGE OF SMOKERS, PEOPLE 448 00:17:39,480 --> 00:17:41,160 NOT ENGAGING IN PHYSICAL 449 00:17:41,160 --> 00:17:43,480 ACTIVITY, OF CARDIOVASCULAR 450 00:17:43,480 --> 00:17:47,400 DISEASE, OR OBESE. 451 00:17:47,400 --> 00:17:48,720 THAT ARE HIGHER PERCENTAGE OF 452 00:17:48,720 --> 00:17:50,640 PEOPLE WITH DISABILITIES ARE NOT 453 00:17:50,640 --> 00:17:51,920 RECEIVING THE MEDICAL CARE THAT 454 00:17:51,920 --> 00:17:54,560 THEY NEED DUE TO COST AND A 455 00:17:54,560 --> 00:17:56,120 HIGHER PERCENTAGE OF WOMEN WITH 456 00:17:56,120 --> 00:17:57,800 DISABILITIES ARE NOT UP-TO-DATE 457 00:17:57,800 --> 00:18:00,880 WITH MR. MAMMOGRAMS AND THEIR 458 00:18:00,880 --> 00:18:04,760 PAP TESTS. 459 00:18:04,760 --> 00:18:05,880 BUT ADDITIONALLY, WE MUST 460 00:18:05,880 --> 00:18:07,840 CONSIDER HOW FACTORS LIKE SOCIAL 461 00:18:07,840 --> 00:18:09,760 DETERMINANTS OF HEALTH IMPACT 462 00:18:09,760 --> 00:18:11,080 THE HEALTH -- ACCESS TO 463 00:18:11,080 --> 00:18:12,360 HEALTHCARE AND HEALTH EQUITY OF 464 00:18:12,360 --> 00:18:13,280 DISABLED PEOPLE. 465 00:18:13,280 --> 00:18:15,080 THIS SLIDE I'M SHOWING ANOTHER 466 00:18:15,080 --> 00:18:17,400 BAR GRAPH FROM RECENT DATA FROM 467 00:18:17,400 --> 00:18:18,920 MY CENTER, INDICATING A HIGHER 468 00:18:18,920 --> 00:18:20,200 PERCENTAGE OF PEOPLE WITH 469 00:18:20,200 --> 00:18:21,400 DISABILITIES HAVE LESS THAN A 470 00:18:21,400 --> 00:18:23,360 HIGH SCHOOL EDUCATION, HAVE A 471 00:18:23,360 --> 00:18:24,720 LOW HOUSEHOLD INCOME, WHICH IS 472 00:18:24,720 --> 00:18:26,640 LESS THAN $25,000 PER YEAR IN 473 00:18:26,640 --> 00:18:30,920 THIS ANALYSIS, AND ARE 474 00:18:30,920 --> 00:18:32,560 UNEMPLOYED. 475 00:18:32,560 --> 00:18:34,880 IT'S ALSO CRITICAL TO NOT 476 00:18:34,880 --> 00:18:39,320 EXAMINE DISABILITY IN A VACUUM. 477 00:18:39,320 --> 00:18:39,920 DISABILITY INEQUITIES OPERATING 478 00:18:39,920 --> 00:18:45,160 THROUGH AN INTERSECTIONALITY 479 00:18:45,160 --> 00:18:48,920 APPROACH RECOGNIZES THAT THERE'S 480 00:18:48,920 --> 00:18:56,840 A MA MAG N MAG INDICATION OF PED 481 00:18:56,840 --> 00:18:59,160 I'M SHOWING DATA FOR PEOPLE WITH 482 00:18:59,160 --> 00:19:00,720 DISABILITIES FROM RACIAL AND 483 00:19:00,720 --> 00:19:02,960 ETHNIC MINORITIES GROUPS AS THEY 484 00:19:02,960 --> 00:19:04,480 HAVE THE HIGHEST PERCENTAGE OF 485 00:19:04,480 --> 00:19:07,800 DISABILITY IN COMPOUNDING 486 00:19:07,800 --> 00:19:08,080 INEQUITIES. 487 00:19:08,080 --> 00:19:09,320 PEOPLE WITH DISABILITIES WHO ARE 488 00:19:09,320 --> 00:19:12,320 BLACK AND HISPANIC, HAVE A 489 00:19:12,320 --> 00:19:14,880 HIGHER PERCENTAGE OF HAVING A 490 00:19:14,880 --> 00:19:17,160 HIGH SCHOOL EDUCATION, OF LESS 491 00:19:17,160 --> 00:19:19,200 THAN HIGH SCHOOL, HAVE A LOW 492 00:19:19,200 --> 00:19:21,080 HOUSEHOLD INCOME, AND A HIGHER 493 00:19:21,080 --> 00:19:31,240 PERCENTAGE OF BEING UNEMPLOYED. 494 00:19:31,240 --> 00:19:33,560 AT ITS CORE ABLEISM HAS A 495 00:19:33,560 --> 00:19:36,560 UNDERLYING HIERARCHY TO HUMAN 496 00:19:36,560 --> 00:19:36,800 HEALTH. 497 00:19:36,800 --> 00:19:39,240 THAT SOCIETY A SCIENCE. 498 00:19:39,240 --> 00:19:41,400 THIS HIERARCHY IS WHERE NON 499 00:19:41,400 --> 00:19:43,720 DISABLED PEOPLE HOLD MORE 500 00:19:43,720 --> 00:19:44,320 SOCIETAL VALUE. 501 00:19:44,320 --> 00:19:47,200 IT IS SHOCKING HOW THAT VIEW HAS 502 00:19:47,200 --> 00:19:49,280 GONE UNCHECKED FOR SO LONG AND 503 00:19:49,280 --> 00:19:50,800 STILL GRIPS SO MUCH OF CLINICAL 504 00:19:50,800 --> 00:19:52,600 RESEARCH AND MEDICINE. 505 00:19:52,600 --> 00:19:54,840 IT STILL SHAPES THE WORK WE DO, 506 00:19:54,840 --> 00:19:58,200 THE MEASURES WE DEVELOP, AND THE 507 00:19:58,200 --> 00:20:02,680 OUTCOMES THAT WE VALUE. 508 00:20:02,680 --> 00:20:04,440 ON THIS SLIDE, I'M SHOWING A 509 00:20:04,440 --> 00:20:06,920 PREVIEW OF SOME WORK FROM THE 510 00:20:06,920 --> 00:20:11,880 AMAZING LISA IEZZONI WHO WILL 511 00:20:11,880 --> 00:20:12,880 WRAP-UP THIS CONFERENCE. 512 00:20:12,880 --> 00:20:14,760 THIS IS A GRAPHIC DEVELOPED BY 513 00:20:14,760 --> 00:20:16,880 ANOTHER COLLEAGUE, Dr. CARA 514 00:20:16,880 --> 00:20:19,440 ERRORS AND HER TEAM SUMMARIZING 515 00:20:19,440 --> 00:20:21,680 LISA'S WORK. 516 00:20:21,680 --> 00:20:24,200 THIS INDICATES THAT 82% OF 517 00:20:24,200 --> 00:20:25,120 PHYSICIANS BELIEVE THAT PEOPLE 518 00:20:25,120 --> 00:20:27,160 WITH DISABILITIES HAVE A WORSE 519 00:20:27,160 --> 00:20:29,520 QUALITY OF LIFE. 520 00:20:29,520 --> 00:20:40,040 ONLY 40% OF PHYSICIANS AND Dr. 521 00:20:40,800 --> 00:20:42,880 IEZZONI'S SURVEY AND ONLY 56% 522 00:20:42,880 --> 00:20:44,480 STRONGLY AGREED THAT THEY WOULD 523 00:20:44,480 --> 00:20:47,440 WELCOME DISABLED PATIENTS INTO 524 00:20:47,440 --> 00:20:48,520 THIS PRACTICE. 525 00:20:48,520 --> 00:20:51,160 I WANT TO PAUSE HERE BECAUSE I 526 00:20:51,160 --> 00:20:53,720 KNOW THE IDEA THAT PEOPLE WITH 527 00:20:53,720 --> 00:20:54,920 DISABILITIES HAVING A WORSE 528 00:20:54,920 --> 00:20:56,560 QUALITY OF LIFE SOMETIMES JUST 529 00:20:56,560 --> 00:21:01,040 MEANS A MOMENT OF REFLECTION. 530 00:21:01,040 --> 00:21:05,400 THAT HAS BEEN A VIEW THAT HAS 531 00:21:05,400 --> 00:21:05,960 GONE UNCHECKED AND SOMETIMES 532 00:21:05,960 --> 00:21:08,320 WHEN I SAY THAT, PEOPLE THINK, 533 00:21:08,320 --> 00:21:11,240 WELL, OF COURSE, THEY'RE 534 00:21:11,240 --> 00:21:11,840 DISABLED. 535 00:21:11,840 --> 00:21:14,280 BUT THAT IS THE EXACT CONCEPT 536 00:21:14,280 --> 00:21:16,680 THAT THIS CONFERENCE IS GOING TO 537 00:21:16,680 --> 00:21:20,880 CHALLENGE AND DISCUSS. 538 00:21:20,880 --> 00:21:23,120 THAT IDEA IS NOT HELD BY MANY 539 00:21:23,120 --> 00:21:24,560 PEOPLE WITH DISABILITIES AND WE 540 00:21:24,560 --> 00:21:35,080 NEED TO CRITICALLY EXAMINE IT. 541 00:21:36,880 --> 00:21:39,080 AND THE WAYS IT PLAYS OUT IN 542 00:21:39,080 --> 00:21:41,560 HEALTHCARE AND DRIVES INEQUITIES 543 00:21:41,560 --> 00:21:44,720 IS IMPORTANT TO UNDERSTAND AND 544 00:21:44,720 --> 00:21:45,840 ADDRESS. 545 00:21:45,840 --> 00:21:50,280 ON THIS SLIDE IS MORE ELEVATION 546 00:21:50,280 --> 00:21:53,200 OF Dr. IEZZONI'S WORK. 547 00:21:53,200 --> 00:21:54,880 HER WORK WAS WRITTEN UP IN A 548 00:21:54,880 --> 00:21:55,880 "NEW YORK TIMES" ARTICLE AND I'M 549 00:21:55,880 --> 00:21:58,840 SHOWING AN IMAGE OF THAT AND 550 00:21:58,840 --> 00:22:00,960 LISA AND COLLEAGUES HAD SOME 551 00:22:00,960 --> 00:22:02,440 ADDITIONAL QUALITATIVE RESEARCH 552 00:22:02,440 --> 00:22:03,960 THAT WENT ALONG WITH THAT 553 00:22:03,960 --> 00:22:07,400 QUANTITIVE WORK I JUST 554 00:22:07,400 --> 00:22:11,760 DESCRIBED. 555 00:22:11,760 --> 00:22:22,640 AND NO AN -- THEY SAID GO TO AN 556 00:22:23,280 --> 00:22:24,440 ELEVATOR, CATTLE PROCESSING 557 00:22:24,440 --> 00:22:26,160 PLANT OR A ZOO TO BE WEIGHED. 558 00:22:26,160 --> 00:22:28,440 A ZOO TO BE WEIGHED. 559 00:22:28,440 --> 00:22:31,000 IT'S A PROFOUND TO THINK ABOUT 560 00:22:31,000 --> 00:22:33,840 THAT AS BEING A REQUEST TO 561 00:22:33,840 --> 00:22:35,680 OBTAIN WHICH IS A CRITICAL 562 00:22:35,680 --> 00:22:37,360 ASSESSMENT MEASUREMENT OBTAINED 563 00:22:37,360 --> 00:22:41,360 IN ALMOST EVERY HEALTHCARE 564 00:22:41,360 --> 00:22:44,360 VISIT. 565 00:22:44,360 --> 00:22:46,400 ABLEISM, GOES DEEPER THAN JUST 566 00:22:46,400 --> 00:22:48,000 THE RESEARCH AND THE CARE 567 00:22:48,000 --> 00:22:50,440 PROVIDED TO PEOPLE WITH 568 00:22:50,440 --> 00:22:50,760 DISABILITIES. 569 00:22:50,760 --> 00:22:54,920 IT IMPACTS THE TEAMS DOING THE 570 00:22:54,920 --> 00:22:56,960 WORK. 571 00:22:56,960 --> 00:23:01,480 AND THESE THINGS OF COURSE ARE 572 00:23:01,480 --> 00:23:02,880 INTER LOCKED. 573 00:23:02,880 --> 00:23:05,040 ALTHOUGH, MORE THAN ONE AND FOUR 574 00:23:05,040 --> 00:23:06,400 AMERICAN ADULTS HAVE THE 575 00:23:06,400 --> 00:23:07,080 DISABILITY, PEOPLE WITH 576 00:23:07,080 --> 00:23:08,160 DISABILITIES ARE DRASTICALLY 577 00:23:08,160 --> 00:23:09,960 UNDER REPRESENTED IN MEDICINE 578 00:23:09,960 --> 00:23:11,440 AND IN RESEARCH. 579 00:23:11,440 --> 00:23:12,720 AND I HOPE THAN THIS CONFERENCE 580 00:23:12,720 --> 00:23:15,240 WILL HELP ELEVATE THAT AND START 581 00:23:15,240 --> 00:23:19,880 TO DO WORK TO CHANGE THAT. 582 00:23:19,880 --> 00:23:23,240 NEXT SLIDE. 583 00:23:23,240 --> 00:23:27,440 I'M SHOW A BAR GRAPH OF THE 584 00:23:27,440 --> 00:23:28,640 INCLUSION OF PEOPLE WITH 585 00:23:28,640 --> 00:23:29,720 DISABILITIES ACROSS HIGHER 586 00:23:29,720 --> 00:23:33,880 EDUCATION AND ACADEMIA AND STEMM 587 00:23:33,880 --> 00:23:34,080 CAREERS. 588 00:23:34,080 --> 00:23:37,600 IT'S SHOWING THAT 19% OF 589 00:23:37,600 --> 00:23:39,160 UNDERGRADUATE STUDENTS IN STEMM 590 00:23:39,160 --> 00:23:40,440 FOCUSED AREAS REPORT HAVING A 591 00:23:40,440 --> 00:23:42,920 DISABILITY ONLY 9% OF DOCTORAL 592 00:23:42,920 --> 00:23:46,760 STUDENTS DROPS TO 8% OF POSTDOCS 593 00:23:46,760 --> 00:23:48,960 AND 8% ASSISTANT PROFESSOR. 594 00:23:48,960 --> 00:23:51,960 THERE'S AN INCREASE OF THE 595 00:23:51,960 --> 00:23:53,640 PERCENTAGE OF ASSOCIATE AND FULL 596 00:23:53,640 --> 00:23:57,680 PROFESSORS WITH DISABILITIES AT 597 00:23:57,680 --> 00:24:00,640 10% AND AND A DECLINE TO 8% OF 598 00:24:00,640 --> 00:24:03,080 LEADERS IN ACADEMIC SPACES, 599 00:24:03,080 --> 00:24:03,840 DEANS, CHAIRS, DEPARTMENT 600 00:24:03,840 --> 00:24:06,240 DIRECTORS, PRESIDENTS, PROVOSTS 601 00:24:06,240 --> 00:24:09,640 AND CHANCELLOR SO THIS SLIDE 602 00:24:09,640 --> 00:24:12,840 SHOWS A UNDER REPRESENTATION OF 603 00:24:12,840 --> 00:24:14,640 THE 27% OF PEOPLE WITH 604 00:24:14,640 --> 00:24:15,720 DISABILITIES, ADULTS WITH 605 00:24:15,720 --> 00:24:17,800 DISABILITIES IN THE UNITED 606 00:24:17,800 --> 00:24:18,680 STATES. 607 00:24:18,680 --> 00:24:19,880 IT ALSO SHOWS THAT THERE'S AN 608 00:24:19,880 --> 00:24:22,960 UNDER REPRESENTATION ACROSS THE 609 00:24:22,960 --> 00:24:25,400 PATHWAY OF STEM TRAINING. 610 00:24:25,400 --> 00:24:27,720 AND OF STEM LEADERSHIP AND 611 00:24:27,720 --> 00:24:32,640 ACADEMIC SPACES. 612 00:24:32,640 --> 00:24:33,960 ON THIS SLIDE, I'M SHOWING THE 613 00:24:33,960 --> 00:24:37,640 AMAZING WORK OF MY FRIEND AND 614 00:24:37,640 --> 00:24:39,000 COLLEAGUE LISA MEEKS FROM THE 615 00:24:39,000 --> 00:24:40,280 UNIVERSITY OF MICHIGAN. 616 00:24:40,280 --> 00:24:41,560 SHE DEDICATED HER CAREER TO 617 00:24:41,560 --> 00:24:42,920 UNDERSTANDING AND ELEVATING THE 618 00:24:42,920 --> 00:24:44,560 GAPS AND MEDICAL TRAINING FOR 619 00:24:44,560 --> 00:24:47,240 STUDENTS IN LEARNERS WITH 620 00:24:47,240 --> 00:24:47,560 DISABILITIES. 621 00:24:47,560 --> 00:24:49,080 AND THIS WORK IT IS SHOWING THE 622 00:24:49,080 --> 00:24:50,720 PERCENTAGE OF MEDICAL STUDENTS 623 00:24:50,720 --> 00:24:52,760 REPORTING DISABILITIES HAS 624 00:24:52,760 --> 00:24:57,320 INCREASED FROM 2.7% IN 2016 TO 625 00:24:57,320 --> 00:25:00,920 4.6% IN 2019 BUT THAT IS STILL 626 00:25:00,920 --> 00:25:05,640 REMAINS ABYSMALLY LOW. 627 00:25:05,640 --> 00:25:08,600 THIS IS ALSO WORK FROM Dr. 628 00:25:08,600 --> 00:25:09,480 MEEKS' TEAM. 629 00:25:09,480 --> 00:25:14,080 SHOWING THE PERCENTAGE OF 630 00:25:14,080 --> 00:25:15,320 CURRENTLY PRACTICING PHYSICIANS 631 00:25:15,320 --> 00:25:16,640 WHO REPORT HAVING A DISABILITY, 632 00:25:16,640 --> 00:25:18,920 WHICH IS ONLY 3%. 633 00:25:18,920 --> 00:25:24,600 BASED ON A NATIONAL SURVEY. 634 00:25:24,600 --> 00:25:27,240 AND LISA AND I TEAMED UP 635 00:25:27,240 --> 00:25:29,360 TOGETHER TO EXAMINE THE 636 00:25:29,360 --> 00:25:33,160 REPRESENTATION OF PEOPLE WITH 637 00:25:33,160 --> 00:25:36,200 DISABILITIES IN THE BIOMEDICAL 638 00:25:36,200 --> 00:25:36,640 WORKFORCE. 639 00:25:36,640 --> 00:25:43,280 WE DID THIS BY USING DATA ON THE 640 00:25:43,280 --> 00:25:44,520 REPRESENTATION OF NIH PRINCIPAL 641 00:25:44,520 --> 00:25:45,320 INVESTIGATORS WHO REPORTED 642 00:25:45,320 --> 00:25:48,080 HAVING A DISABILITY OVER THE 643 00:25:48,080 --> 00:25:51,080 DECADE FROM 2008 TO 2018. 644 00:25:51,080 --> 00:25:54,400 AND WHAT ARE DATA SHOWED IS THAT 645 00:25:54,400 --> 00:25:56,200 PERCENTAGE OF P.I.s WITH 646 00:25:56,200 --> 00:26:00,320 DISABILITIES PRINCIPAL 647 00:26:00,320 --> 00:26:02,160 INVESTIGATORS, DECLINED FROM 648 00:26:02,160 --> 00:26:06,480 1.9% TO 1 TRACTOR-TRAILER 2% 649 00:26:06,480 --> 00:26:07,840 OVER THAT TIME. 650 00:26:07,840 --> 00:26:10,120 THAT PERCENTAGE, LESS THAN 2% IS 651 00:26:10,120 --> 00:26:13,640 AGAIN ABYSMALLY LOAD COMPARED TO 652 00:26:13,640 --> 00:26:18,480 THE POPULATION PREVALENCE OF 653 00:26:18,480 --> 00:26:19,400 27%. 654 00:26:19,400 --> 00:26:22,240 THERE IS A RECENT UPDATE ON THIS 655 00:26:22,240 --> 00:26:23,840 DATA USING A VERY SIMILAR 656 00:26:23,840 --> 00:26:28,080 APPROACH AND ANALYSIS IN A BLOG 657 00:26:28,080 --> 00:26:30,720 FROM MIKE LAUER FROM THE NIH. 658 00:26:30,720 --> 00:26:32,920 THIS EXTENDED THE PERIOD OF 659 00:26:32,920 --> 00:26:37,000 EXAMINATION OF THE DATA FROM 660 00:26:37,000 --> 00:26:41,160 2008 TO 2022 AND THE PERCENTAGE 661 00:26:41,160 --> 00:26:42,320 PIs SELF-REPORT NORTH 662 00:26:42,320 --> 00:26:46,000 DISABILITY DECREASED FROM 2% TO 663 00:26:46,000 --> 00:26:47,440 1.3% IN 2022. 664 00:26:47,440 --> 00:26:53,880 THOSE RESULTS HELD ALL THE WAY 665 00:26:53,880 --> 00:26:57,320 THROUGH 2022. 666 00:26:57,320 --> 00:26:58,560 ADDITIONALLY, IT'S IMPORTANT TO 667 00:26:58,560 --> 00:26:59,560 UNDERSTAND THE UNDER 668 00:26:59,560 --> 00:27:00,720 REPRESENTTATION OF PEOPLE WITH 669 00:27:00,720 --> 00:27:01,560 DISABILITIES IN OPPORTUNITIES 670 00:27:01,560 --> 00:27:07,520 FOR FUNDING BEYOND PRIMARY 671 00:27:07,520 --> 00:27:11,440 GRAPHS SUCH AS DIVERSITY STANELE 672 00:27:11,440 --> 00:27:12,000 SUPPLEMENTS. 673 00:27:12,000 --> 00:27:14,760 THIS IS DATA SHOWING THAT OVER 674 00:27:14,760 --> 00:27:18,080 1,000 APPLICANTS ON DIVERSITY 675 00:27:18,080 --> 00:27:19,920 SUPPLEMENTS, 1,100, ONLY 34 WERE 676 00:27:19,920 --> 00:27:22,080 FROM PEOPLE WITH DISABILITIES. 677 00:27:22,080 --> 00:27:25,560 LESS THAN 3%. 678 00:27:25,560 --> 00:27:28,080 NOW THESE DIVERSITY SUPPLEMENTS 679 00:27:28,080 --> 00:27:30,320 ARE OPPORTUNITIES TO INCLUDE 680 00:27:30,320 --> 00:27:33,000 DISABLED RESEARCHERS IN NIH 681 00:27:33,000 --> 00:27:34,120 FUNDED RESEARCH. 682 00:27:34,120 --> 00:27:37,960 BUT CERTAINLY THEY'RE NOT BEING 683 00:27:37,960 --> 00:27:39,840 UTILIZED. 684 00:27:39,840 --> 00:27:40,600 ADDITIONALLY, THERE WAS DATA 685 00:27:40,600 --> 00:27:42,960 FROM AN NIH WORKPLACE CLIMATE 686 00:27:42,960 --> 00:27:46,960 AND HARASSMENT SURVEY RELEASED 687 00:27:46,960 --> 00:27:48,120 IN 2020 INDICATING THAT 30% OF 688 00:27:48,120 --> 00:27:49,600 PEOPLE WITH DISABILITIES WORKING 689 00:27:49,600 --> 00:27:51,840 AT THE NIH REPORTED SEXUAL 690 00:27:51,840 --> 00:27:54,840 HARASSMENT IN THE PAST YEAR. 691 00:27:54,840 --> 00:27:56,360 NOW SEXUAL HARASSMENT IS NOT 692 00:27:56,360 --> 00:27:59,680 SOMETHING OFTEN ASSOCIATED WITH 693 00:27:59,680 --> 00:28:02,760 DISABILITIES, BUT PEOPLE WITH 694 00:28:02,760 --> 00:28:05,280 DISABILITIES FACE ALL TYPES OF 695 00:28:05,280 --> 00:28:06,920 HARASSMENT AND BARRIERS AND 696 00:28:06,920 --> 00:28:12,480 SEXUAL HARASSMENT, IS ONE OF 697 00:28:12,480 --> 00:28:16,720 THOSE ISSUES. 698 00:28:16,720 --> 00:28:18,040 WE ARE AT A MOMENT OF CHANGE. 699 00:28:18,040 --> 00:28:23,040 I SHARE ALL THAT DATA, NOT TO 700 00:28:23,040 --> 00:28:25,320 PROVIDE A HUGE DOSE OF 701 00:28:25,320 --> 00:28:27,240 NEGATIVITY, BUT INSTEAD A DOSE 702 00:28:27,240 --> 00:28:28,320 OF REALITY. 703 00:28:28,320 --> 00:28:31,200 AND AT THIS MOMENT, I THINK WE 704 00:28:31,200 --> 00:28:35,240 ALL HAVE AN INFLECTION POINT TO 705 00:28:35,240 --> 00:28:35,880 RESPONDED TO. 706 00:28:35,880 --> 00:28:39,560 WE HAVE A ONCE IN A GENERATION 707 00:28:39,560 --> 00:28:41,840 OPPORTUNITY. 708 00:28:41,840 --> 00:28:47,280 RECENTLY,RERECENTLY WE PUBLISHEA 709 00:28:47,280 --> 00:28:47,640 COMMENTARY. 710 00:28:47,640 --> 00:28:49,280 IT WAS LED BY Dr. KENNEDY AND 711 00:28:49,280 --> 00:28:52,720 WE WROTE THE LATE BOBBIE SILVER 712 00:28:52,720 --> 00:28:53,920 STEEN, A LIFELONG DISABILITY 713 00:28:53,920 --> 00:28:57,440 ACTIVIST AND EXCEPTIONAL 714 00:28:57,440 --> 00:28:58,480 POLITICAL STRATEGIST DESCRIBED 715 00:28:58,480 --> 00:29:01,280 E.O., EXECUTIVE ORDER 13985 AND 716 00:29:01,280 --> 00:29:03,960 THE CURRENT NIH DEIA DIVERSITY, 717 00:29:03,960 --> 00:29:06,400 EQUITY AND INCLUSION AND 718 00:29:06,400 --> 00:29:08,360 ACCESSIBILITY EFFORTS, AS A ONCE 719 00:29:08,360 --> 00:29:11,000 IN A GENERATION OPPORTUNITY. 720 00:29:11,000 --> 00:29:13,360 TO REFORM FEDERAL RESEARCH 721 00:29:13,360 --> 00:29:15,120 POLICY AND PROGRAMMING ON 722 00:29:15,120 --> 00:29:15,440 DISABILITIES. 723 00:29:15,440 --> 00:29:20,000 WE ALL HAVE A CHANCE AT MAKING 724 00:29:20,000 --> 00:29:20,880 CHANGE. 725 00:29:20,880 --> 00:29:22,520 THOSE EXECUTIVE ORDERS I JUST 726 00:29:22,520 --> 00:29:24,000 DESCRIBED I'M OUTLINING ON THIS 727 00:29:24,000 --> 00:29:24,760 SLIDE. 728 00:29:24,760 --> 00:29:26,400 THE FIRST, IS ADVANCING RACIAL 729 00:29:26,400 --> 00:29:28,200 EQUITY AND SUPPORT FOR 730 00:29:28,200 --> 00:29:29,400 UNDERSERVED COMMUNITIES THROUGH 731 00:29:29,400 --> 00:29:30,520 THE FEDERAL GOVERNMENT. 732 00:29:30,520 --> 00:29:32,120 THIS EXECUTIVE ORDER WAS SIGNED 733 00:29:32,120 --> 00:29:34,840 ON THE FIRST DAY OF PRESIDENT 734 00:29:34,840 --> 00:29:38,040 JOE BIDEN'S TERM AND PROVIDES AN 735 00:29:38,040 --> 00:29:39,240 OPPORTUNITY TO MAKE CHANGE FOR 736 00:29:39,240 --> 00:29:41,080 THE DISABILITY COMMUNITY AS WELL 737 00:29:41,080 --> 00:29:43,080 AS MANY OTHER COMMUNITIES FACING 738 00:29:43,080 --> 00:29:47,240 OPPRESSION BY LEVERAGING THE 739 00:29:47,240 --> 00:29:48,560 FEDERAL GOVERNMENT TO DRIVE 740 00:29:48,560 --> 00:29:49,720 SOCIAL CHANGE. 741 00:29:49,720 --> 00:29:50,800 ADDITIONALLY, THE EXECUTIVE 742 00:29:50,800 --> 00:29:52,840 ORDER DIVERSITY EQUITY AND 743 00:29:52,840 --> 00:29:54,960 INCLUSION AND ACCESSIBILITY IN 744 00:29:54,960 --> 00:29:57,640 THE FEDERAL WORKFORCE MAKES IT 745 00:29:57,640 --> 00:29:59,320 CLEAR THAT ACCESSIBILITY AND 746 00:29:59,320 --> 00:30:02,520 PEOPLE WITH DISABILITIES SHOULD 747 00:30:02,520 --> 00:30:05,840 BE PART OF ALL DIVERSITY, EQUITY 748 00:30:05,840 --> 00:30:10,800 AND INCLUSION. 749 00:30:10,800 --> 00:30:15,680 SO RELATED TO THAT FACT, THE NIH 750 00:30:15,680 --> 00:30:18,440 CREATED A WORKING GROUP ON 751 00:30:18,440 --> 00:30:18,920 DIVERSITY, SUBGROUP ON 752 00:30:18,920 --> 00:30:20,640 INDIVIDUALS WITH DISABILITIES 753 00:30:20,640 --> 00:30:22,440 ABOUT 18 MONTHS AGO. 754 00:30:22,440 --> 00:30:26,560 THIS WAS A WORKING GROUP 755 00:30:26,560 --> 00:30:27,960 DEVELOPED UNDER THE NIH ACD 756 00:30:27,960 --> 00:30:29,640 WHICH STANDS FOR THE ADVISORY 757 00:30:29,640 --> 00:30:32,600 COMMITTEE TO THE DIRECTOR. 758 00:30:32,600 --> 00:30:34,240 I WAS GRATEFUL TO CO-CHAIR 24 759 00:30:34,240 --> 00:30:37,640 COMMITTEE WITH LISA AND STEVE 760 00:30:37,640 --> 00:30:37,840 BARNETT. 761 00:30:37,840 --> 00:30:41,640 ON THE SLIDE I'M LISTING ARE 762 00:30:41,640 --> 00:30:42,840 COMMITTEE MEMBERS, WHICH 763 00:30:42,840 --> 00:30:46,200 INCLUDED KIM ANDERSON, THERESA 764 00:30:46,200 --> 00:30:52,320 CRUZ, ALBERTO, JEAN HALL, SUSAN 765 00:30:52,320 --> 00:30:56,160 HALFERCAMP, KATHLEEN MANKEEPSKI, 766 00:30:56,160 --> 00:30:59,960 DAVID RICE, AND PHILLIP ZAZOF. 767 00:30:59,960 --> 00:31:01,680 THIS WAS WAS AN AMAZING 768 00:31:01,680 --> 00:31:03,240 COMMITTEE AND WE MET JUST OVER A 769 00:31:03,240 --> 00:31:09,320 PERIOD OF A YEAR TO DEVELOP 770 00:31:09,320 --> 00:31:11,680 RECOMMENDATIONS AROUND 771 00:31:11,680 --> 00:31:13,040 INCREASING THE INCLUSION OF 772 00:31:13,040 --> 00:31:15,880 PEOPLE WITH DISABILITIES IN THE 773 00:31:15,880 --> 00:31:18,000 BIOMEDICAL WORKFORCE AS OUR 774 00:31:18,000 --> 00:31:19,720 PRIMARY CALL WHICH WE EXTENDED 775 00:31:19,720 --> 00:31:21,280 TO INCLUDING PEOPLE WITH 776 00:31:21,280 --> 00:31:24,280 DISABILITIES IN RESEARCH. 777 00:31:24,280 --> 00:31:33,000 I WANT TO GIVE THANKS TO THE 778 00:31:33,000 --> 00:31:34,920 COSWD OFFICE AND Dr. MURRAY 779 00:31:34,920 --> 00:31:39,600 BERNARD AND HER TEAM WHO WORKED 780 00:31:39,600 --> 00:31:41,600 CLOSELY WITH US IN THE WORK OF 781 00:31:41,600 --> 00:31:42,840 THIS COMMITTEE AND DEVELOPING 782 00:31:42,840 --> 00:31:46,400 OUR RECOMMENDATIONS. 783 00:31:46,400 --> 00:31:46,920 NEXT SLIDE. 784 00:31:46,920 --> 00:31:48,760 I WANT TO JUST QUICKLY REVIEW 785 00:31:48,760 --> 00:31:51,240 OUR RECOMMENDATIONS WHICH TRULY 786 00:31:51,240 --> 00:31:52,680 ARE REMARKABLE AND WE BELIEVE 787 00:31:52,680 --> 00:31:56,040 ARE A LANDMARK OPPORTUNITY FOR 788 00:31:56,040 --> 00:31:57,920 CHANGE. 789 00:31:57,920 --> 00:32:00,920 OUR RECOMMENDATIONS SPAN FIVE 790 00:32:00,920 --> 00:32:01,680 AREAS. 791 00:32:01,680 --> 00:32:03,960 THEY INCLUDE OF RECOMMENDATIONS 792 00:32:03,960 --> 00:32:05,960 AROUND ANTI ABLEISM 793 00:32:05,960 --> 00:32:07,840 COMMUNICATION AND POLICIES AND 794 00:32:07,840 --> 00:32:09,400 COORDINATION OF EFFORTS AROUND 795 00:32:09,400 --> 00:32:12,920 AREAS OF DISABILITIES, FOCUS ON 796 00:32:12,920 --> 00:32:13,880 DISABILITY INCLUSION, DISABILITY 797 00:32:13,880 --> 00:32:17,200 EQUITY RESEARCH, AND 798 00:32:17,200 --> 00:32:17,760 ACCOUNTABILITY. 799 00:32:17,760 --> 00:32:19,040 NOW I WANT TO JUST CAUSE PEER 800 00:32:19,040 --> 00:32:20,680 AND MAKE SURE THAT OUR 801 00:32:20,680 --> 00:32:21,600 RECOMMENDATIONS AND OUR REPORT 802 00:32:21,600 --> 00:32:23,240 HAVE BEEN RELEASED. 803 00:32:23,240 --> 00:32:25,080 WERE RELEASED LAST DECEMBER AND 804 00:32:25,080 --> 00:32:29,760 WERE ENDORSED BY THE NIH ACD AND 805 00:32:29,760 --> 00:32:31,880 THEY'RE BEING CONSIDERED BY AN 806 00:32:31,880 --> 00:32:34,320 NIH LEADERSHIP OF WHAT AND HOW 807 00:32:34,320 --> 00:32:41,360 AND ADOPT OF THOSE NEXT SLIDE. 808 00:32:41,360 --> 00:32:43,480 THE RECOMMENDATIONS UNDER ANTI 809 00:32:43,480 --> 00:32:45,000 ABLEISM, COMMUNICATION AND 810 00:32:45,000 --> 00:32:46,880 POLICIES WE MADE A REQUEST TO 811 00:32:46,880 --> 00:32:48,720 UPDATE THE MISSION STATEMENT OF 812 00:32:48,720 --> 00:32:50,480 THE NIH THROUGH MOVE THE 813 00:32:50,480 --> 00:32:52,640 COMPONENT OF REDUCING 814 00:32:52,640 --> 00:32:52,960 DISABILITY. 815 00:32:52,960 --> 00:32:54,520 WE VIEWED THIS AS AN OPPORTUNITY 816 00:32:54,520 --> 00:32:58,520 TO MAKE A STATEMENT AND AROUND 817 00:32:58,520 --> 00:33:02,480 SETTING A TONE OF MAKING THE NIH 818 00:33:02,480 --> 00:33:05,720 MORE DISABILITY INCLUSIVE. 819 00:33:05,720 --> 00:33:08,080 THE CONCEPT OF REDUCING 820 00:33:08,080 --> 00:33:09,320 DISABILITY IS NOT ONE WELL 821 00:33:09,320 --> 00:33:10,760 APPRECIATED WITHIN THE 822 00:33:10,760 --> 00:33:11,640 DISABILITY COMMUNITY AND 823 00:33:11,640 --> 00:33:14,840 PROMOTES AN IDEA THAT DISABILITY 824 00:33:14,840 --> 00:33:16,440 IS NEGATIVE AND SHOULD BE 825 00:33:16,440 --> 00:33:17,280 ELIMINATED. 826 00:33:17,280 --> 00:33:18,640 WE ALSO MADE SUGGESTIONS AROUND 827 00:33:18,640 --> 00:33:20,640 REVIEWING POLICIES, CULTURES AND 828 00:33:20,640 --> 00:33:21,560 STRUCTURES THAT PROMOTE 829 00:33:21,560 --> 00:33:25,640 DISABILITY AND INCLUSION ACROSS 830 00:33:25,640 --> 00:33:27,440 THE NIH. 831 00:33:27,440 --> 00:33:29,280 OUR RECOMMENDATIONS MADE 832 00:33:29,280 --> 00:33:30,480 SUGGESTIONS AROUND COORDINATED 833 00:33:30,480 --> 00:33:32,080 EFFORTS SUCH AS ESTABLISHING AN 834 00:33:32,080 --> 00:33:34,200 NIH OFFICE OF DISABILITY 835 00:33:34,200 --> 00:33:36,080 RESEARCH THAT WOULD SPAN THE NIH 836 00:33:36,080 --> 00:33:38,560 TO SUPPORT THIS TYPE OF 837 00:33:38,560 --> 00:33:40,720 COORDINATION OF RESEARCH FOCUSED 838 00:33:40,720 --> 00:33:42,840 ON DISABILITY AND EFFORTS 839 00:33:42,840 --> 00:33:45,240 RELATED TO DISABILITY INCLUSION 840 00:33:45,240 --> 00:33:48,000 AND TO DEVELOP EFFORTS TO COMBAT 841 00:33:48,000 --> 00:33:50,600 STRUCTURAL ABLEISM INSIDE AND 842 00:33:50,600 --> 00:33:52,960 OUTSIDE THE NIH INCLUDING IN 843 00:33:52,960 --> 00:34:00,120 FUNDED RESEARCH INSTITUTIONS. 844 00:34:00,120 --> 00:34:03,240 WE HAD A FOCUS BY ESTABLISHING A 845 00:34:03,240 --> 00:34:05,240 NIH DISABILITY EQUITY AND ACCESS 846 00:34:05,240 --> 00:34:06,560 COORDINATING COMMITTEE AND TO 847 00:34:06,560 --> 00:34:09,080 FIND WAYS TO IMPROVE THE 848 00:34:09,080 --> 00:34:11,240 INCLUSION OF DISABLED PEOPLE IN 849 00:34:11,240 --> 00:34:13,360 NIH EFFORTS INCLUDING PEOPLE IN 850 00:34:13,360 --> 00:34:15,760 RESEARCH AS WELL AS OUTSIDE OF 851 00:34:15,760 --> 00:34:16,200 RESEARCH. 852 00:34:16,200 --> 00:34:18,200 TO ENSURE THE PERSPECTIVE OF THE 853 00:34:18,200 --> 00:34:20,960 DISABILITY COMMUNITY ARE PART OF 854 00:34:20,960 --> 00:34:23,040 NIH DECISION-MAKING. 855 00:34:23,040 --> 00:34:23,800 NEXT SLIDE. 856 00:34:23,800 --> 00:34:25,760 WE ALSO HAD A FOCUS ON 857 00:34:25,760 --> 00:34:27,000 DISABILITY EQUITY AND HOW 858 00:34:27,000 --> 00:34:28,800 RESEARCH CAN PROMOTE THAT. 859 00:34:28,800 --> 00:34:30,920 THERE'S AN IMPORTANT FOCUS ON 860 00:34:30,920 --> 00:34:33,600 PROVIDING THE DESIGNATION OF NOT 861 00:34:33,600 --> 00:34:35,840 A HEALTH DISPARITY POPULATION TO 862 00:34:35,840 --> 00:34:38,080 PEOPLE WITH DISABILITIES. 863 00:34:38,080 --> 00:34:40,480 THIS DESIGNATION IS CRITICAL FOR 864 00:34:40,480 --> 00:34:42,320 PROVIDING THE FUNDING NEEDED TO 865 00:34:42,320 --> 00:34:44,320 ADDRESS THE HEALTH DISPARITIES 866 00:34:44,320 --> 00:34:47,920 THAT WE KNOW EXIST THAT THERE'S 867 00:34:47,920 --> 00:34:49,000 MOUNTAINS OF EVIDENCE BEHIND. 868 00:34:49,000 --> 00:34:52,040 WITHOUT THIS DESIGNATION, WE 869 00:34:52,040 --> 00:34:54,760 REEL ARE AT A STAND STILL FROM 870 00:34:54,760 --> 00:34:56,720 FUNDING OPPORTUNITIES TO MOVE 871 00:34:56,720 --> 00:34:58,280 FORWARD HEALTH EQUITY FOR PEOPLE 872 00:34:58,280 --> 00:35:00,240 WITH DISABILITIES. 873 00:35:00,240 --> 00:35:02,880 WE ALSO MADE RECOMMENDATIONS 874 00:35:02,880 --> 00:35:04,080 AROUND INCREASING FUNDING FOR 875 00:35:04,080 --> 00:35:07,040 RESEARCH FOCUSED ON DISABILITY 876 00:35:07,040 --> 00:35:09,800 EQUITY PROMOTING DISABILITY 877 00:35:09,800 --> 00:35:11,880 COLLECTION AND INCLUDING MORE 878 00:35:11,880 --> 00:35:15,240 DISABLED PEOPLE IN RESEARCH 879 00:35:15,240 --> 00:35:16,400 STUDIES. 880 00:35:16,400 --> 00:35:18,920 AND AS IMPORTANT COMPONENT, WE 881 00:35:18,920 --> 00:35:22,920 INCLUDE AID FOCUS O ON 882 00:35:22,920 --> 00:35:23,560 ACCOUNTABILITY. 883 00:35:23,560 --> 00:35:26,160 THERE'S RECOMMENDATIONS TO HAVE 884 00:35:26,160 --> 00:35:29,120 CONTINUOUS AND TRANSPARENT 885 00:35:29,120 --> 00:35:30,840 PRACTICES OF PUBLIC SHARING OF 886 00:35:30,840 --> 00:35:32,200 ACCESSIBLE DATA ON THE 887 00:35:32,200 --> 00:35:35,680 RECOMMENDATIONS THAT WERE BEING 888 00:35:35,680 --> 00:35:36,040 MADE. 889 00:35:36,040 --> 00:35:41,000 THIS IS THROUGH A BELIEF THAT 890 00:35:41,000 --> 00:35:42,320 THROUGH INFORMATION SHARING WITH 891 00:35:42,320 --> 00:35:44,480 THE PUBLIC THAT THE PRACTICES 892 00:35:44,480 --> 00:35:46,560 WOULD CONTINUE AND IMPROVE OVER 893 00:35:46,560 --> 00:35:47,400 TIME. 894 00:35:47,400 --> 00:35:48,520 PROVIDING AN OPPORTUNITY FOR THE 895 00:35:48,520 --> 00:35:49,720 COMMUNITY TO CONTINUE TO WORK 896 00:35:49,720 --> 00:35:54,920 TOGETHER WITH THE NIH TO MAKE 897 00:35:54,920 --> 00:35:56,160 CHANGED. 898 00:35:56,160 --> 00:35:59,560 I AM GRATEFUL THAT MANY OF THESE 899 00:35:59,560 --> 00:36:00,840 RECOMMENDATIONS HAVE BEEN 900 00:36:00,840 --> 00:36:06,320 REFLECTED AND THE LATEST 901 00:36:06,320 --> 00:36:08,320 NIH-DEIA STRATEGIC PLAN JUST 902 00:36:08,320 --> 00:36:11,240 RECENTLY RELEASED FROM THE COSWD 903 00:36:11,240 --> 00:36:12,640 OFFICE. 904 00:36:12,640 --> 00:36:14,280 IT CERTAINLY IS A REMARKABLE 905 00:36:14,280 --> 00:36:17,720 MOMENT FOR MANY OF US IN THE 906 00:36:17,720 --> 00:36:18,880 DISABILITY COMMUNITY, WHO ARE ON 907 00:36:18,880 --> 00:36:20,080 THIS COMMITTEES AND WHO HAVE 908 00:36:20,080 --> 00:36:22,320 BEEN DOING THIS WORK. 909 00:36:22,320 --> 00:36:24,560 AS Dr. CRUZ OPENED THIS 910 00:36:24,560 --> 00:36:26,720 CONFERENCE WITH, THE CERTAINLY 911 00:36:26,720 --> 00:36:30,040 HAS BEEN A LONG TIME COMING AND 912 00:36:30,040 --> 00:36:32,440 I HAVE TO EXPRESS MY DEEPEST 913 00:36:32,440 --> 00:36:33,760 GRATITUDE TO EVERYONE INVOLVED 914 00:36:33,760 --> 00:36:35,600 IN THIS EFFORT ON THIS COMMITTEE 915 00:36:35,600 --> 00:36:37,360 AND WHO DID THE WORK TO GET TO 916 00:36:37,360 --> 00:36:39,040 US WHERE WE ARE TODAY. 917 00:36:39,040 --> 00:36:41,520 CERTAINLY THE WORK IS STILL NOT 918 00:36:41,520 --> 00:36:42,200 OVER. 919 00:36:42,200 --> 00:36:46,080 THIS CERTAINLY FEELS LIKE AN 920 00:36:46,080 --> 00:36:48,600 INFLECTION POINT. 921 00:36:48,600 --> 00:36:49,920 THE CALL TO ACTION IS WHERE I 922 00:36:49,920 --> 00:36:51,760 WANT TO END. 923 00:36:51,760 --> 00:36:56,000 I WANT EVERYONE IN THIS AUDIENCE 924 00:36:56,000 --> 00:36:59,120 TODAY TO CONSIDER WAYS THAT WE 925 00:36:59,120 --> 00:37:01,120 CAN BRING A LENS OF ANTI ABLEISM 926 00:37:01,120 --> 00:37:03,520 TO MEDICAL RESEARCH, BIOMEDICAL 927 00:37:03,520 --> 00:37:04,280 RESEARCH. 928 00:37:04,280 --> 00:37:05,880 WE CERTAINLY ALL HAVE A ROLE TO 929 00:37:05,880 --> 00:37:07,320 PLAY AND A RESPONSIBILITY. 930 00:37:07,320 --> 00:37:08,840 WHETHER YOU ARE IN THE 931 00:37:08,840 --> 00:37:09,640 DISABILITY COMMUNITY OR NOT, 932 00:37:09,640 --> 00:37:11,280 WHETHER YOU THINK YOU ARE DOING 933 00:37:11,280 --> 00:37:15,800 DISABILITY RESEARCH OR NOT. 934 00:37:15,800 --> 00:37:16,600 IT'S ALSO IMPORTANT WE 935 00:37:16,600 --> 00:37:17,840 PARTICIPATE IN EFFORTS TO 936 00:37:17,840 --> 00:37:19,840 ADVANCE DISABILITY CAN EQUITY. 937 00:37:19,840 --> 00:37:21,840 ABLEISM IS A FORMIDABLE THREAT 938 00:37:21,840 --> 00:37:23,520 TO HEALTH EQUITY AND DIVERSITY 939 00:37:23,520 --> 00:37:26,280 AND UNLESS WE TACKLE ABLEISM, WE 940 00:37:26,280 --> 00:37:33,680 WILL NEVER GET TO THOSE GOALS. 941 00:37:33,680 --> 00:37:35,040 WE MUST INCLUDE DISABLED PEOPLE 942 00:37:35,040 --> 00:37:38,520 IN OUR EFFORTS. 943 00:37:38,520 --> 00:37:42,240 PEOPLE ARE PART OF OUR 944 00:37:42,240 --> 00:37:44,960 COMMUNITIES AND GENDER IDENTITY 945 00:37:44,960 --> 00:37:47,880 AND FAR BEYOND AND ALL ISSUES, 946 00:37:47,880 --> 00:37:49,440 ARE DISABILITY ISSUES THERE'S NO 947 00:37:49,440 --> 00:37:52,160 SUCH THING AS SPECIAL 948 00:37:52,160 --> 00:37:56,280 DISABILITIES ISSUES ALONE. 949 00:37:56,280 --> 00:37:58,880 CLIMATE CHANGE, GENOMICS, CANCER 950 00:37:58,880 --> 00:38:03,160 TREATMENT, ALL ARE DISABILITY 951 00:38:03,160 --> 00:38:03,680 ISSUES. 952 00:38:03,680 --> 00:38:05,840 IT'S ALSO IMPORTANT TO NOT WAIT 953 00:38:05,840 --> 00:38:09,600 TO TAKE ACTION. 954 00:38:09,600 --> 00:38:11,240 SUCCESS COMES FROM WHEN WE 955 00:38:11,240 --> 00:38:14,880 APPROACH THIS WORK WITH HUMILITY 956 00:38:14,880 --> 00:38:16,760 AND A GROWTH MIND SET WE'RE ALL 957 00:38:16,760 --> 00:38:19,600 LEARNING AND WE'RE ALL 958 00:38:19,600 --> 00:38:20,440 PROCESSING AND UNDERSTANDING 959 00:38:20,440 --> 00:38:22,120 THIS IS A JOURNEY AND THERE'S 960 00:38:22,120 --> 00:38:23,400 REALLY NEVER GOING TO BE AN END 961 00:38:23,400 --> 00:38:25,120 TO THIS WORK AND IT'S A PRACTICE 962 00:38:25,120 --> 00:38:28,440 WE MUST ALL DO EVERY DAY. 963 00:38:28,440 --> 00:38:31,800 AND WITH THAT, WE'LL MOVE OVER 964 00:38:31,800 --> 00:38:37,360 TO QUESTIONS AND THANK YOU 965 00:38:37,360 --> 00:38:41,640 EVERYONE FOR ATTENDING. 966 00:38:41,640 --> 00:38:43,640 >>THANK YOU SO MUCH, BONNIE. 967 00:38:43,640 --> 00:38:50,920 CAN I GET ON THE SCREEN. 968 00:38:50,920 --> 00:38:56,360 >>Theresa Cruz: THERE WE GO. 969 00:38:56,360 --> 00:38:57,240 THANK YOU. 970 00:38:57,240 --> 00:39:00,800 THAT WAS FABULOUS. 971 00:39:00,800 --> 00:39:05,360 WE HAVE FIVE OR SIX MINUTES FOR 972 00:39:05,360 --> 00:39:06,480 QUESTIONS AND THERE'S A LOT OF 973 00:39:06,480 --> 00:39:10,560 CHATTER IN THE Q&A. 974 00:39:10,560 --> 00:39:12,920 YOU HAVE BEEN VERY OPEN ABOUT 975 00:39:12,920 --> 00:39:20,360 YOUR OWN DISABILITIES STATUS. 976 00:39:20,360 --> 00:39:22,160 THERE ARE QUESTIONS ABOUT HOW 977 00:39:22,160 --> 00:39:25,800 PEOPLE CAN DISCLOSE IN A SAFE 978 00:39:25,800 --> 00:39:29,040 AND SUPPORTIVE WAY OR NOT 979 00:39:29,040 --> 00:39:30,160 DISCLOSE AS THEY SO CHOSE. 980 00:39:30,160 --> 00:39:32,720 COULD YOU TALK A LITTLE BIT 981 00:39:32,720 --> 00:39:34,840 ABOUT YOUR PERSPECTIVE ON 982 00:39:34,840 --> 00:39:36,840 DISCLOSURE OF A DISABILITY? 983 00:39:36,840 --> 00:39:40,880 > 984 00:39:40,880 --> 00:39:41,520 >>Bonnielin Swenor: YEAH, SURE. 985 00:39:41,520 --> 00:39:42,360 THIS IS SOMETIMES A TOUGH 986 00:39:42,360 --> 00:39:43,840 QUESTION, RIGHT, FOR FOLKS. 987 00:39:43,840 --> 00:39:50,360 AND I JUST WANT TO START BY 988 00:39:50,360 --> 00:39:51,520 SAYING I DON'T THINK EVERYONE IS 989 00:39:51,520 --> 00:39:53,880 IN A PLACE TO FEEL SAFE TO 990 00:39:53,880 --> 00:39:54,960 DISCLOSE AND THAT'S 991 00:39:54,960 --> 00:39:57,280 UNFORTUNATELY ABOUT THE REALITY 992 00:39:57,280 --> 00:40:00,560 OF THE WORLD TODAY, THAT I HOPE 993 00:40:00,560 --> 00:40:01,080 CAN CHANGE. 994 00:40:01,080 --> 00:40:05,320 I AM GRATEFUL ENOUGH TO BE IN A 995 00:40:05,320 --> 00:40:10,600 SPACE WHERE I CAN DISCLOSE AND 996 00:40:10,600 --> 00:40:12,200 IT WAS AND HAS BEEN AN EVOLUTION 997 00:40:12,200 --> 00:40:13,040 OVER TIME FOR ME. 998 00:40:13,040 --> 00:40:15,280 I WASN'T OUT ABOUT MY DISABILITY 999 00:40:15,280 --> 00:40:18,680 WHEN I COULD HIDE IT BETTER AND 1000 00:40:18,680 --> 00:40:19,880 FOR FEAR THAT PEOPLE WOULD NOT 1001 00:40:19,880 --> 00:40:23,680 WANT TO WORK WITH ME. 1002 00:40:23,680 --> 00:40:26,200 TO BE HONEST THAT FEAR CAME TRUE 1003 00:40:26,200 --> 00:40:27,800 AND THERE WERE NEEM HAVE AND 1004 00:40:27,800 --> 00:40:30,000 STILL ARE REFUSED TO WORK WITH 1005 00:40:30,000 --> 00:40:32,960 ME BECAUSE THEY KNEW MY VISION 1006 00:40:32,960 --> 00:40:37,040 LOSS, MY VISUAL DISABILITY AS 1007 00:40:37,040 --> 00:40:38,480 A -- THEY VIEW IT AS A PROBLEM 1008 00:40:38,480 --> 00:40:40,160 TO THE DATA SCIENCE TYPE OF WORK 1009 00:40:40,160 --> 00:40:40,640 I DO. 1010 00:40:40,640 --> 00:40:42,440 THAT'S TOUGH, YOU KNOW. 1011 00:40:42,440 --> 00:40:46,480 THAT'S HARD AND UNFORTUNATELY A 1012 00:40:46,480 --> 00:40:46,960 REALITY. 1013 00:40:46,960 --> 00:40:51,120 AGAIN, I HAVE A WONDERFUL SYSTEM 1014 00:40:51,120 --> 00:40:52,920 OF MENTORS AND COLLEAGUES AND 1015 00:40:52,920 --> 00:40:56,320 FRIENDS AND FAMILY THAT GIVE ME 1016 00:40:56,320 --> 00:41:00,560 THE STRENGTH TO STILL BE OKAY 1017 00:41:00,560 --> 00:41:01,600 AND MOVE FORWARD. 1018 00:41:01,600 --> 00:41:03,200 I'M ALSO GOTTEN TO A PLACE WHERE 1019 00:41:03,200 --> 00:41:06,520 I REALLY WANT CHANGE. 1020 00:41:06,520 --> 00:41:09,000 I THINK THAT AS MORE PEOPLE COME 1021 00:41:09,000 --> 00:41:13,720 OUT ABOUT THEIR DISABILITY, I 1022 00:41:13,720 --> 00:41:16,720 HAVE SEEN THE IMPACT OF THAT. 1023 00:41:16,720 --> 00:41:21,080 HOW POWERFUL THAT IS AND HOW 1024 00:41:21,080 --> 00:41:25,680 IMPORTANT THAT IS IN CREATING A 1025 00:41:25,680 --> 00:41:27,840 SPACE OF MORE WELCOMING 1026 00:41:27,840 --> 00:41:29,520 ENVIRONMENT TO BE DISABLED. 1027 00:41:29,520 --> 00:41:32,600 THERE'S THIS RIPPLE EFFECT THAT 1028 00:41:32,600 --> 00:41:36,280 HAPPENS. 1029 00:41:36,280 --> 00:41:38,000 AND SO, THAT HAS COMPELLED ME TO 1030 00:41:38,000 --> 00:41:39,840 SPEAK ABOUT MY DISABILITY MORE 1031 00:41:39,840 --> 00:41:42,480 BECAUSE I JUST SO DESPERATELY 1032 00:41:42,480 --> 00:41:47,600 WANT THIS SYSTEM TO CHANGE. 1033 00:41:47,600 --> 00:41:49,880 >>Theresa Cruz: THANK YOU, 1034 00:41:49,880 --> 00:41:50,400 BONNIE. 1035 00:41:50,400 --> 00:41:52,680 THERE ARE QUITE A FEW QUESTIONS 1036 00:41:52,680 --> 00:41:54,080 ABOUT WHETHER NIH INCLUDED 1037 00:41:54,080 --> 00:41:56,280 PEOPLE WITH DISABILITIES IN THE 1038 00:41:56,280 --> 00:41:58,920 PLANNING OF THIS CONFERENCE. 1039 00:41:58,920 --> 00:42:01,920 AND I WILL ANSWER THAT AND SAY, 1040 00:42:01,920 --> 00:42:02,240 YES. 1041 00:42:02,240 --> 00:42:03,600 AS BONNIE MENTIONED, NOT 1042 00:42:03,600 --> 00:42:07,840 EVERYBODY IS IN A PLACE WHERE 1043 00:42:07,840 --> 00:42:08,760 DISCLOSURE IS SAFE. 1044 00:42:08,760 --> 00:42:10,400 SO I WILL SAY THAT WE TOOK IT 1045 00:42:10,400 --> 00:42:13,480 VERY SERIOUSLY, IF PEOPLE WANT 1046 00:42:13,480 --> 00:42:15,520 TO DISCLOSE THEIR DISABILITIES, 1047 00:42:15,520 --> 00:42:21,560 THEY ARE CERTAINLY ABLE TO BUT 1048 00:42:21,560 --> 00:42:23,000 WE ARE NOT GOING TO DO THAT FOR 1049 00:42:23,000 --> 00:42:23,440 THEM. 1050 00:42:23,440 --> 00:42:25,840 WE HOPE THE DIFFERENT DISABILITY 1051 00:42:25,840 --> 00:42:27,040 PERSPECTIVES AND BARRIERS ARE 1052 00:42:27,040 --> 00:42:28,480 EVIDENT THROUGHOUT THE COURSE OF 1053 00:42:28,480 --> 00:42:39,000 THIS WORKSHOP, BUT I WILL LEAVE 1054 00:42:41,280 --> 00:42:41,800 IT AT THAT. 1055 00:42:41,800 --> 00:42:42,880 >>Bonnielin Swenor: I WANT TO 1056 00:42:42,880 --> 00:42:43,560 MAKE A QUICK COMMENT. 1057 00:42:43,560 --> 00:42:46,120 I WANT TO BE REAL CLEAR ABOUT 1058 00:42:46,120 --> 00:42:48,600 THE UMBRELLA TERM OF DISABILITY. 1059 00:42:48,600 --> 00:42:50,600 AND BEING INTENDED, WHEN I'M 1060 00:42:50,600 --> 00:42:51,920 USING IT AND I BELIEVE OUR 1061 00:42:51,920 --> 00:42:53,840 COMMITTEE IS USING IT AND WHEN 1062 00:42:53,840 --> 00:42:55,240 WE'RE USING IT IN THIS 1063 00:42:55,240 --> 00:43:00,720 CONFERENCE IS INCLUSIVE. 1064 00:43:00,720 --> 00:43:01,560 CAPITAL B BLINDS AND DEAF 1065 00:43:01,560 --> 00:43:03,680 COMMUNITY AND PEOPLE WITH 1066 00:43:03,680 --> 00:43:06,360 CHRONIC CONDITIONS. 1067 00:43:06,360 --> 00:43:08,320 IT'S A TERM THAT WE ARE USING IN 1068 00:43:08,320 --> 00:43:10,520 A WELCOME AND INCLUSIVE WAY AND 1069 00:43:10,520 --> 00:43:11,920 I JUST WANT TO MAKE THAT 1070 00:43:11,920 --> 00:43:12,640 STATEMENT. 1071 00:43:12,640 --> 00:43:17,600 I ALSO WANT TO SAY THAT YOU 1072 00:43:17,600 --> 00:43:23,960 KNOW, THE DISABILITY COMMUNITY 1073 00:43:23,960 --> 00:43:25,000 IS COMING TO THIS CONVERSATION 1074 00:43:25,000 --> 00:43:31,280 WITH A HISTORY OF HARM AND HURT 1075 00:43:31,280 --> 00:43:32,880 IN RESEARCH AND I AGREE AND 1076 00:43:32,880 --> 00:43:33,960 UNDERSTAND THAT. 1077 00:43:33,960 --> 00:43:36,880 AND WITH THAT, COMES, AS I ENDED 1078 00:43:36,880 --> 00:43:39,240 MY TALK WITH THE NEED FOR 1079 00:43:39,240 --> 00:43:42,360 HUMILITY AND HONEST DISCUSSION. 1080 00:43:42,360 --> 00:43:44,640 I WILL JUST SHARE IN OUR 1081 00:43:44,640 --> 00:43:46,760 COMMITTEE, I THINK WE HAD THIS 1082 00:43:46,760 --> 00:43:50,960 BEAUTIFUL, WONDERFUL FEELING OF 1083 00:43:50,960 --> 00:43:52,520 IN THE BEGINNING THERE WAS A LOT 1084 00:43:52,520 --> 00:43:55,920 OF THAT AND SKEPTICISM ALMOST, 1085 00:43:55,920 --> 00:43:57,600 RIGHT, OF THIS WORK. 1086 00:43:57,600 --> 00:44:01,520 BUT AT THE END, I WISH I COULD 1087 00:44:01,520 --> 00:44:04,360 SOMEHOW SHARE IT IN A SUCCINCT 1088 00:44:04,360 --> 00:44:04,880 WAY. 1089 00:44:04,880 --> 00:44:07,320 IT REALLY WAS AN AMAZING PERSON 1090 00:44:07,320 --> 00:44:10,640 EXPERIENCE WORKING WITH Dr. 1091 00:44:10,640 --> 00:44:13,720 BERNARD AND THE COSWD OFFICE, 1092 00:44:13,720 --> 00:44:20,000 REALLY FEELING LIKE THAT WE CAME 1093 00:44:20,000 --> 00:44:21,800 TO A PLACE OF TOGETHERNESS ON 1094 00:44:21,800 --> 00:44:23,400 THESE ISSUES AND CERTAINLY NOT 1095 00:44:23,400 --> 00:44:24,560 ERASING THE HARMS THAT HAVE BEEN 1096 00:44:24,560 --> 00:44:27,160 DONE AND HISTORICAL ISSUES BUT 1097 00:44:27,160 --> 00:44:29,640 FEELING SEEN AND HEARD AND 1098 00:44:29,640 --> 00:44:32,320 VALUED AND NEVER IN MY CAREER 1099 00:44:32,320 --> 00:44:36,440 DID I THINK WE WOULD BE THERE. 1100 00:44:36,440 --> 00:44:37,200 THERE'S CERTAINLY THERE'S A LOT 1101 00:44:37,200 --> 00:44:38,360 OF WORK TO BE DONE. 1102 00:44:38,360 --> 00:44:42,480 I WANT TO GIVE SOME HOPE TO THE 1103 00:44:42,480 --> 00:44:43,040 DISABILITY COMMUNITY AND YOU 1104 00:44:43,040 --> 00:44:44,480 KNOW, AGAIN, REALITY IS WE GOT A 1105 00:44:44,480 --> 00:44:48,920 LOT OF WORK TO DO AT THE NIH 1106 00:44:48,920 --> 00:44:50,760 BUT, I REALLY FEEL LIKE IT'S AN 1107 00:44:50,760 --> 00:44:55,080 IMPORTANT MOMENT OF CHANGE. 1108 00:44:55,080 --> 00:44:56,120 >>Theresa Cruz: THANK YOU. 1109 00:44:56,120 --> 00:44:59,200 WE ARE AT TIME SO I'LL SAY THANK 1110 00:44:59,200 --> 00:45:01,440 YOU ONCE AGAIN TO Dr. SWENOR 1111 00:45:01,440 --> 00:45:03,720 FOR THAT CALL TO ACTION, THAT 1112 00:45:03,720 --> 00:45:05,440 GREAT START FOR THIS CONFERENCE 1113 00:45:05,440 --> 00:45:07,640 AND I WOULD LIKE TO TURN IT OVER 1114 00:45:07,640 --> 00:45:15,560 TO MY COLLEAGUE, Dr. LINDA 1115 00:45:15,560 --> 00:45:18,560 BAMBRICK A PROGRAM DIRECTOR AND 1116 00:45:18,560 --> 00:45:21,320 STROKE TO LEAD OUR FIRST SESSION 1117 00:45:21,320 --> 00:45:24,960 ON WHAT IS ABLEISM? 1118 00:45:24,960 --> 00:45:27,000 >>THANK YOU, SERIES A AND YOU 1119 00:45:27,000 --> 00:45:29,360 KNOW, AGAIN, REALLY TERRIFIC 1120 00:45:29,360 --> 00:45:31,480 KICKOFF WONDERFUL START TO THE 1121 00:45:31,480 --> 00:45:33,800 WORKSHOP AND YEAH, WELCOME TO 1122 00:45:33,800 --> 00:45:36,320 SESSION 1 ON WHAT IS ABLEISM. 1123 00:45:36,320 --> 00:45:39,240 IN ADDITION TO MY JOB 1124 00:45:39,240 --> 00:45:40,960 DESCRIPTION, WHICH THERESA 1125 00:45:40,960 --> 00:45:44,480 OFFERED, MY VISUAL DESCRIPTION 1126 00:45:44,480 --> 00:45:47,200 IS I'M MIDDLE AGED BROWN-HAIR 1127 00:45:47,200 --> 00:45:48,360 WITH BLACK GLASSES. 1128 00:45:48,360 --> 00:45:50,880 AND IT IS MY VERY GREAT PLEASURE 1129 00:45:50,880 --> 00:45:53,920 THIS MORNING TO INTRODUCE Dr. 1130 00:45:53,920 --> 00:45:54,920 ERIN ANDREWS WHO WILL BE OUR 1131 00:45:54,920 --> 00:45:57,600 FIRST SPEAKER IN THIS SESSION. 1132 00:45:57,600 --> 00:45:58,800 Dr. ANDREWS IS A BOARD 1133 00:45:58,800 --> 00:46:00,760 CERTIFIED REHABILITATION NOT 1134 00:46:00,760 --> 00:46:01,320 PSYCHOLOGIST. 1135 00:46:01,320 --> 00:46:05,040 SHE'S AN ASSOCIATE A FILL EIGHT 1136 00:46:05,040 --> 00:46:06,680 CLINICAL PROFESSOR IN THE 1137 00:46:06,680 --> 00:46:09,440 DEPARTMENT OF PSYCHIATRY AND 1138 00:46:09,440 --> 00:46:10,440 BEHAVIORAL MEDICINE AT DAL 1139 00:46:10,440 --> 00:46:14,360 UNIVERSITSCHOOL AT THE UNIVERSIF 1140 00:46:14,360 --> 00:46:16,000 TEXAS AND AUSTIN. 1141 00:46:16,000 --> 00:46:17,240 HER AREAS OF INTEREST INCLUDE 1142 00:46:17,240 --> 00:46:20,280 DISABILITY IDENTITY, CULTURAL 1143 00:46:20,280 --> 00:46:21,680 COMPETENCE, DISABILITY 1144 00:46:21,680 --> 00:46:23,240 INCLUSION, IN PSYCHOLOGY 1145 00:46:23,240 --> 00:46:24,760 TRAINING, SEXUAL AND 1146 00:46:24,760 --> 00:46:25,480 REPRODUCTIVE RIGHTS SO PEOPLE 1147 00:46:25,480 --> 00:46:28,320 WITH DISABILITIES, DISABLED 1148 00:46:28,320 --> 00:46:30,320 PARENTING, AND REDUCING BIAS AND 1149 00:46:30,320 --> 00:46:31,600 DISABILITY AND LANGUAGE. 1150 00:46:31,600 --> 00:46:35,840 SHE'S THE AUTHOR OF "DIS ACT IS 1151 00:46:35,840 --> 00:46:37,320 DIVERSITY," DEVELOPING CULTURAL 1152 00:46:37,320 --> 00:46:39,800 COMPETENCE AND ERIN IS MARRIED 1153 00:46:39,800 --> 00:46:41,480 WITH TWO GROWN STEP CHILDREN AND 1154 00:46:41,480 --> 00:46:43,200 TWO SCHOOL-AGE CHILDREN AND THEY 1155 00:46:43,200 --> 00:46:47,400 ALL LIVE TOGETHER NEAR AUSTIN 1156 00:46:47,400 --> 00:46:48,120 EXTENSION TEXT. 1157 00:46:48,120 --> 00:46:51,240 SHE IS GOING TO TALK ABOUT 1158 00:46:51,240 --> 00:46:52,800 STRUCTURAL ABLEISM AND Dr. 1159 00:46:52,800 --> 00:46:59,360 ANDREWS, TURNING IT OVER TO YOU. 1160 00:46:59,360 --> 00:47:03,040 >>GREAT, THANK YOU. 1161 00:47:03,040 --> 00:47:05,560 ARE FOLKS ABLE TO HEAR ME OKAY? 1162 00:47:05,560 --> 00:47:07,200 >>YES, WE CAN HEAR YOU FINE. 1163 00:47:07,200 --> 00:47:11,560 >>I'M GOING TO SHARE MY OWN 1164 00:47:11,560 --> 00:47:14,840 SLIDES. 1165 00:47:14,840 --> 00:47:16,040 >>YES, I BELIEVE SO. 1166 00:47:16,040 --> 00:47:24,360 >>I WILL SHARE MY SCREEN NOW. 1167 00:47:24,360 --> 00:47:26,480 HOPEFULLY THOSE ARE SHOWING UP 1168 00:47:26,480 --> 00:47:29,840 NICELY ON THE SCREEN FOR US. 1169 00:47:29,840 --> 00:47:31,560 THANK YOU SO MUCH FOR IN 1170 00:47:31,560 --> 00:47:32,880 INVITING ME TO COME AND TALK 1171 00:47:32,880 --> 00:47:35,240 TODAY ABOUT THIS IMPORTANT 1172 00:47:35,240 --> 00:47:38,160 TOPIC. 1173 00:47:38,160 --> 00:47:40,640 TO ORIENT YOU TO MY VISUAL 1174 00:47:40,640 --> 00:47:43,160 DESCRIPTION I'M A BLOND-HAIRED 1175 00:47:43,160 --> 00:47:43,960 MIDDLE-AGED WOMAN. 1176 00:47:43,960 --> 00:47:45,800 MY HAIR IS SHOULDER LENGTH AND 1177 00:47:45,800 --> 00:47:49,280 I'M WEARING A PINK TOP AND I AM 1178 00:47:49,280 --> 00:47:51,240 WHITE AND I'M GOING TO BE 1179 00:47:51,240 --> 00:47:54,560 TALKING ABOUT ABLEISM TODAY AND 1180 00:47:54,560 --> 00:47:56,560 I'M CALLING THIS PRESENTATION 1181 00:47:56,560 --> 00:47:58,440 THE ICEBERG OF ABLEISM, TO GIVE 1182 00:47:58,440 --> 00:47:59,920 US A FRAMEWORK TO THINK ABOUT 1183 00:47:59,920 --> 00:48:00,960 IT. 1184 00:48:00,960 --> 00:48:05,600 FROM MICRO TO MACROAGGRESSIONS. 1185 00:48:05,600 --> 00:48:08,320 I DO WANT TO DISCLOSE MY 1186 00:48:08,320 --> 00:48:10,360 DISABILITY IS VERY IMPORTANT TO 1187 00:48:10,360 --> 00:48:11,360 ME. 1188 00:48:11,360 --> 00:48:14,560 I PROUDLY IDENTIFY AS A DISABLED 1189 00:48:14,560 --> 00:48:16,200 WOMAN IN THIS WORLD OF ZOOM, I 1190 00:48:16,200 --> 00:48:18,120 DO HAVE TO SELF-DISCLOSE I HAVE 1191 00:48:18,120 --> 00:48:20,400 A PHOTO OF ME ON THIS SLIDE IF 1192 00:48:20,400 --> 00:48:23,160 YOU WERE TO SEE ME IN-PERSON, 1193 00:48:23,160 --> 00:48:26,600 YOU MIGHT NOTICE THAT I AM A 1194 00:48:26,600 --> 00:48:28,640 TRIPLE AMPUTEE AND I USE AS 1195 00:48:28,640 --> 00:48:30,960 POWER WHEELCHAIR FOR MY 1196 00:48:30,960 --> 00:48:31,240 MOBILITY. 1197 00:48:31,240 --> 00:48:33,080 SO, OF COURSE I DO NOT AND 1198 00:48:33,080 --> 00:48:35,760 CANNOT SPEAK ON BEHALF OF THE 1199 00:48:35,760 --> 00:48:36,400 DISABILITY COMMUNITY, I AM 1200 00:48:36,400 --> 00:48:39,000 COMING FROM A PLACE OF HAVING 1201 00:48:39,000 --> 00:48:42,920 THE LIVED EXPERIENCE. 1202 00:48:42,920 --> 00:48:43,600 OKAY. 1203 00:48:43,600 --> 00:48:45,360 SO, ONE OF THE THINGS THAT I AM 1204 00:48:45,360 --> 00:48:47,000 MOST INTERESTED IN IS DISABILITY 1205 00:48:47,000 --> 00:48:50,280 AS A FORM OF DIVERSITY. 1206 00:48:50,280 --> 00:48:51,920 WHEN WE LOOK AT DEFINITIONS OF 1207 00:48:51,920 --> 00:48:53,640 DIVERSITY ACROSS OUR FIELDS, 1208 00:48:53,640 --> 00:48:55,960 WHETHER IT'S MEDICAL, OR 1209 00:48:55,960 --> 00:48:57,920 PSYCHOLOGICAL, OR SCIENTIFIC, WE 1210 00:48:57,920 --> 00:49:01,760 SEE THE DISABILITIES INCLUDED IN 1211 00:49:01,760 --> 00:49:04,720 MOST PROFESSIONAL DEFINITIONS OF 1212 00:49:04,720 --> 00:49:05,000 DIVERSITY. 1213 00:49:05,000 --> 00:49:07,440 BUT, RARELY IS DISABILITY 1214 00:49:07,440 --> 00:49:10,200 ACTUALLY TALKED ABOUT OR 1215 00:49:10,200 --> 00:49:11,680 ACTUALLY DISCUSSED IN THINGS 1216 00:49:11,680 --> 00:49:14,680 LIKE DIVERSITY, EQUITY AND 1217 00:49:14,680 --> 00:49:16,000 INCLUSION EFFORTS. 1218 00:49:16,000 --> 00:49:17,320 AND I BELIEVE THAT THE REASON 1219 00:49:17,320 --> 00:49:19,960 WHY THIS IS, IS BECAUSE WE TEND 1220 00:49:19,960 --> 00:49:22,560 TO VIEW DISABILITY THROUGH THE 1221 00:49:22,560 --> 00:49:24,040 MEDICAL MODEL, WHICH I'M GOING 1222 00:49:24,040 --> 00:49:26,640 TO TALK ABOUT, AND WE THINK OF 1223 00:49:26,640 --> 00:49:30,680 IT AS BEING AN INDIVIDUAL 1224 00:49:30,680 --> 00:49:32,000 QUOTE-UNQUOTE PROBLEM INSTEAD OF 1225 00:49:32,000 --> 00:49:34,760 THINKING ABOUT DISABILITY AS A 1226 00:49:34,760 --> 00:49:36,560 DIVERSE SOCIOPOLITICAL AND 1227 00:49:36,560 --> 00:49:40,080 CULTURAL IDENTITY. 1228 00:49:40,080 --> 00:49:42,320 SO, TOO OFTEN, WE SEE THAT WHEN 1229 00:49:42,320 --> 00:49:46,080 WE DO FOCUS ON DISABILITY, IT'S 1230 00:49:46,080 --> 00:49:48,480 RESTRICTED TO CERTAIN ISSUES 1231 00:49:48,480 --> 00:49:51,560 SUCH AS ARE WE COMPLIANT WITH 1232 00:49:51,560 --> 00:49:53,760 THE ADA BUT THAT MISSES THE MUCH 1233 00:49:53,760 --> 00:49:56,000 GREATER CULTURAL CONTEXT IN 1234 00:49:56,000 --> 00:49:59,360 WHICH DISABILITY OCCURS. 1235 00:49:59,360 --> 00:50:01,360 SO I SAID THAT WE OFTEN THINK 1236 00:50:01,360 --> 00:50:03,280 ABOUT DISABILITIES THROUGH THE 1237 00:50:03,280 --> 00:50:05,560 MEDICAL MODEL. 1238 00:50:05,560 --> 00:50:08,680 THIS HAPPENS EXTENSIVELY IN 1239 00:50:08,680 --> 00:50:10,760 MEDICAL SYSTEMS BECAUSE OF 1240 00:50:10,760 --> 00:50:13,280 COURSE THAT IS HOW MANY PEOPLE 1241 00:50:13,280 --> 00:50:15,000 WERE TRAINED IN ORIENTED INTO 1242 00:50:15,000 --> 00:50:16,680 THE FIELD OF MEDICINE. 1243 00:50:16,680 --> 00:50:19,760 THE MEDICAL MODEL EMERGED IN THE 1244 00:50:19,760 --> 00:50:22,520 EARLY 19th CENTURY AND THE 1245 00:50:22,520 --> 00:50:24,960 IDEAS THAT THE PROBLEMS IN THE 1246 00:50:24,960 --> 00:50:26,520 MEDICAL MODEL IS SEEN AS A 1247 00:50:26,520 --> 00:50:27,280 DISABILITY. 1248 00:50:27,280 --> 00:50:29,760 BECAUSE OF THAT, FOCUS TENDS TO 1249 00:50:29,760 --> 00:50:31,400 BE ON THE CURE. 1250 00:50:31,400 --> 00:50:34,880 AND THAT PLACES THE INDIVIDUAL 1251 00:50:34,880 --> 00:50:36,720 INTO THIS SPECIFIC ROLE. 1252 00:50:36,720 --> 00:50:39,000 THEY'RE EXCUSED FROM NORMAL 1253 00:50:39,000 --> 00:50:40,520 OBLIGATIONS FROM SOCIETY, SUCH 1254 00:50:40,520 --> 00:50:43,480 AS, FOR EXAMPLE, WORKING, BUT IN 1255 00:50:43,480 --> 00:50:45,600 RETURN THEY ARE EXPECTED TO 1256 00:50:45,600 --> 00:50:47,240 SUBMIT TO THE AUTHORITY OF 1257 00:50:47,240 --> 00:50:49,440 MEDICAL PROFESSIONALS. 1258 00:50:49,440 --> 00:50:50,960 AND WE HAVE SOME EXAMPLES OF 1259 00:50:50,960 --> 00:50:52,520 THAT IN OUR WORLD RIGHT NOW, 1260 00:50:52,520 --> 00:50:55,120 SUCH AS SOCIAL SECURITY SYSTEM. 1261 00:50:55,120 --> 00:50:57,240 I'M NOT EVEN DISABLED BY THEIR 1262 00:50:57,240 --> 00:50:59,800 DEFINITION BECAUSE I CAN WORK. 1263 00:50:59,800 --> 00:51:03,200 SO IT'S HEAVILY INFLUENCED OUR 1264 00:51:03,200 --> 00:51:05,400 PUBLIC POLICIES TODAY. 1265 00:51:05,400 --> 00:51:06,800 SO, WE HAVE THE REHABILITATION 1266 00:51:06,800 --> 00:51:08,200 MODEL WHICH IS AN OFF CHUTE OF 1267 00:51:08,200 --> 00:51:10,720 THE MEDICAL MODEL. 1268 00:51:10,720 --> 00:51:12,120 THIS REGARDS PEOPLE WITH 1269 00:51:12,120 --> 00:51:13,640 DISABILITIES AS NEEDING SERVICES 1270 00:51:13,640 --> 00:51:17,200 IN ORDER TO QUOTE-UNQUOTE 1271 00:51:17,200 --> 00:51:19,320 COMPENSCOMPENSATE FOR THEIR DIS. 1272 00:51:19,320 --> 00:51:25,400 THIS GAINED TRACTION FOLLOWING 1273 00:51:25,400 --> 00:51:26,960 WORLD WAR II BECAUSE SO MANY 1274 00:51:26,960 --> 00:51:28,840 VETERANS CAME BACK AND NEEDED 1275 00:51:28,840 --> 00:51:29,120 SERVICES. 1276 00:51:29,120 --> 00:51:30,480 THERE'S BEEN A LOT OF CRITICISMS 1277 00:51:30,480 --> 00:51:32,240 OF THESE MODELS. 1278 00:51:32,240 --> 00:51:34,520 SO WE KNOW THAT MEDICAL 1279 00:51:34,520 --> 00:51:35,560 INTERCEPTIONS CAN BE IMPORTANT 1280 00:51:35,560 --> 00:51:38,120 AND HELPFUL AND HAS A ROLE. 1281 00:51:38,120 --> 00:51:40,600 IT'S NOT REALLY THE APPROPRIATE 1282 00:51:40,600 --> 00:51:42,600 PLACE FOR DISABILITY POLICY. 1283 00:51:42,600 --> 00:51:45,040 MOST DISABILITIES WILL NEVER BE 1284 00:51:45,040 --> 00:51:47,120 CURED AND WE KNOW THAT DISABLED 1285 00:51:47,120 --> 00:51:48,760 PEOPLE ARE CAPE ABLE OF 1286 00:51:48,760 --> 00:51:51,160 PARTICIPATING IN SOCIETY AND 1287 00:51:51,160 --> 00:51:53,400 THAT BEING RELEGATED TO THE SICK 1288 00:51:53,400 --> 00:51:55,520 ROLE IS NOT ACCEPTABLE. 1289 00:51:55,520 --> 00:51:56,880 SO, REHABILITATION CAN BE 1290 00:51:56,880 --> 00:51:59,520 HELPFUL TOO, BUT IT MAY NOT BE 1291 00:51:59,520 --> 00:52:01,320 APPLICABLE ACROSS THE LIFESPAN 1292 00:52:01,320 --> 00:52:03,200 OR TO DIFFERENT TYPES OF 1293 00:52:03,200 --> 00:52:03,520 DISABILITIES. 1294 00:52:03,520 --> 00:52:06,640 AND OFTEN TIMES, THE SENSE OF 1295 00:52:06,640 --> 00:52:08,840 OVERCOMING OR COMPENSATING CAN 1296 00:52:08,840 --> 00:52:10,440 FEEL VERY PATRONIZING TO THOSE 1297 00:52:10,440 --> 00:52:13,720 OF US WITH DISABILITIES. 1298 00:52:13,720 --> 00:52:16,120 SO, NEXT WHAT WE SAW WAS THE 1299 00:52:16,120 --> 00:52:17,400 EMERGENCE OF THIS SOCIAL MODEL 1300 00:52:17,400 --> 00:52:19,440 AND THE SOCIAL MODEL DESCRIBES 1301 00:52:19,440 --> 00:52:22,480 DISABILITY AS A NEUTRAL, 1302 00:52:22,480 --> 00:52:24,040 CHARACTERISTIC AND THE PROBLEM 1303 00:52:24,040 --> 00:52:27,720 WAS NO LONGER VIEWED AS THE 1304 00:52:27,720 --> 00:52:30,080 INDIVIDUAL OR THEIR IMPAIRMENT 1305 00:52:30,080 --> 00:52:32,240 BUT RATHER THE SOCIAL MODEL ARE 1306 00:52:32,240 --> 00:52:34,720 THESE THAT DISABILITY IS A 1307 00:52:34,720 --> 00:52:36,720 SOCIAL CONSTRUCTION, RIGHT. 1308 00:52:36,720 --> 00:52:39,840 AND THE FOCUS BECAME, INSTEAD OF 1309 00:52:39,840 --> 00:52:42,160 ON THE INDIVIDUAL, ON EX TERNAL 1310 00:52:42,160 --> 00:52:44,520 BARRIERS, WHAT ARE THE PHYSICAL 1311 00:52:44,520 --> 00:52:46,400 OBSTACLES TO THIS PERSON BEING 1312 00:52:46,400 --> 00:52:47,760 ABLE TO PARTICIPATE FULLY? 1313 00:52:47,760 --> 00:52:50,000 WHAT ARE THE ATTITUDE NAL ISSUES 1314 00:52:50,000 --> 00:52:52,160 THAT ARE GETTING IN THE WAY OF 1315 00:52:52,160 --> 00:52:53,880 THIS PERSON GETTING EMPLOYED? 1316 00:52:53,880 --> 00:52:56,320 SO THE EMPHASIS WAS ON THESE 1317 00:52:56,320 --> 00:52:57,440 SOCIAL BARRIERS THAT WOULD GET 1318 00:52:57,440 --> 00:52:59,960 IN THE WAY OF PEOPLE WITH 1319 00:52:59,960 --> 00:53:01,280 DISABILITIES PARTICIPATING FULLY 1320 00:53:01,280 --> 00:53:02,920 IN SOCIETY. 1321 00:53:02,920 --> 00:53:05,360 THIS IS A GRAPHIC REPRESENTATION 1322 00:53:05,360 --> 00:53:06,920 OF THE SOCIAL MODEL OF 1323 00:53:06,920 --> 00:53:07,720 DISABILITIES. 1324 00:53:07,720 --> 00:53:11,200 ON THE LEFT SIDE, THERE IS THE 1325 00:53:11,200 --> 00:53:13,120 CLASSIC WHEELCHAIR SYMBOL 1326 00:53:13,120 --> 00:53:15,200 REPRESENTING A PERSON WITH AN 1327 00:53:15,200 --> 00:53:16,800 IMPAIRMENT OR CONDITION, AND 1328 00:53:16,800 --> 00:53:18,760 THEN, ON THE FAR-RIGHT SIDE, 1329 00:53:18,760 --> 00:53:20,520 THERE'S A PICTURE THAT 1330 00:53:20,520 --> 00:53:21,600 REPRESENTS THE ENVIRONMENT AND 1331 00:53:21,600 --> 00:53:23,600 IT HAS SOME BUILDINGS AND ROADS 1332 00:53:23,600 --> 00:53:25,480 AND REPRESENTS THE PHYSICAL 1333 00:53:25,480 --> 00:53:27,240 SOCIAL AND ECONOMIC AND 1334 00:53:27,240 --> 00:53:28,200 POLITICAL ENVIRONMENT. 1335 00:53:28,200 --> 00:53:29,840 AND THEN WHAT YOU SEE IN THE 1336 00:53:29,840 --> 00:53:35,800 MIDDLE, IS DISABILITY. 1337 00:53:35,800 --> 00:53:36,960 THIS INCLUDES EXCLUSION, 1338 00:53:36,960 --> 00:53:41,320 OPPRESSION, NEGLECT, AND STEREO 1339 00:53:41,320 --> 00:53:47,280 TYPING AND THERE ARE TWO ARROWS 1340 00:53:47,280 --> 00:53:50,960 THAT SHOWS HOW DISABILITY IS A 1341 00:53:50,960 --> 00:53:52,800 RESULT OF INTERACTION BETWEEN 1342 00:53:52,800 --> 00:53:54,400 THE INDIVIDUAL AND THE 1343 00:53:54,400 --> 00:53:54,920 ENVIRONMENT. 1344 00:53:54,920 --> 00:54:00,560 NOW TAKING THIS A STEP FURTHER, 1345 00:54:00,560 --> 00:54:02,440 DISABILITY IS A NATURAL 1346 00:54:02,440 --> 00:54:06,240 DIFFERENCE ON SPECTRUM OF 1347 00:54:06,240 --> 00:54:09,320 DIVERSITY AND IT'S NOT A 1348 00:54:09,320 --> 00:54:10,800 DEIVIENT AND RELATED TO THIS 1349 00:54:10,800 --> 00:54:12,680 FROM THE DIVERSITY MODEL WE 1350 00:54:12,680 --> 00:54:14,720 RECOGNIZE THAT A DISTINCT 1351 00:54:14,720 --> 00:54:18,160 CULTURAL AND SOCIOPOLITICAL 1352 00:54:18,160 --> 00:54:19,120 DISABILITY IDENTITY AND THE 1353 00:54:19,120 --> 00:54:23,040 DIVERSITY MODEL REJECTS THE IDEA 1354 00:54:23,040 --> 00:54:24,040 THAT PEOPLE WITH DISABILITIES 1355 00:54:24,040 --> 00:54:26,800 ARE LESSER OR DESK TIVE AND THE 1356 00:54:26,800 --> 00:54:27,880 CLEAR PROBLEMS FROM THE 1357 00:54:27,880 --> 00:54:30,320 DIVERSITY MODELS, IN THE LIVE 1358 00:54:30,320 --> 00:54:39,680 DISABILITY PEOPLE, IS ABLEISM. 1359 00:54:39,680 --> 00:54:40,960 PREJUDICIAL BEHAVIOR AND THIS IS 1360 00:54:40,960 --> 00:54:42,480 DECADES OF ACTIVISM IN RESPONSE 1361 00:54:42,480 --> 00:54:44,080 TO THE HISTORIC ALLO EXPRESSION 1362 00:54:44,080 --> 00:54:50,080 AND MARRIAG MARGINALIZATION OF E 1363 00:54:50,080 --> 00:54:50,960 ABILITY. 1364 00:54:50,960 --> 00:54:52,960 IT RECOGNIZES VALUE IN OUR 1365 00:54:52,960 --> 00:54:55,280 EXPERIENCES AND THE WAY IT 1366 00:54:55,280 --> 00:54:58,520 ENRICHED HUMANITY. 1367 00:54:58,520 --> 00:55:04,520 THIS SLIDE IS A SUMMARY OF FIVE 1368 00:55:04,520 --> 00:55:06,160 DIFFERENT MODELS OF DISABILITY 1369 00:55:06,160 --> 00:55:07,240 AND IT'S ANOTHER IMPORTANT ONE 1370 00:55:07,240 --> 00:55:09,120 AND SO I'M GOING TO KEEP MOVING 1371 00:55:09,120 --> 00:55:12,040 ON BECAUSE I DON'T HAVE TIME TO 1372 00:55:12,040 --> 00:55:13,040 COVER EVERYTHING. 1373 00:55:13,040 --> 00:55:16,520 I WANT TO TALK ABOUT ABLEISM AND 1374 00:55:16,520 --> 00:55:18,080 ATTITUDES TOWARDS DISABILITIES. 1375 00:55:18,080 --> 00:55:21,680 SO WHAT ARE WE MEANING WHEN WE 1376 00:55:21,680 --> 00:55:24,200 SAY ABLEISM. 1377 00:55:24,200 --> 00:55:25,880 IT'S PREJUDICE ABILITY ATTITUDES 1378 00:55:25,880 --> 00:55:27,240 AND IT'S STIGMA. 1379 00:55:27,240 --> 00:55:28,560 DISABILITY STIGMA. 1380 00:55:28,560 --> 00:55:30,560 IT'S ABOUT HARMFUL ATTITUDES 1381 00:55:30,560 --> 00:55:32,480 TOWARDS PEOPLE WITH DISABILITIES 1382 00:55:32,480 --> 00:55:37,600 AND I'M VERY CAREFUL IN SAYING 1383 00:55:37,600 --> 00:55:38,840 HARMFUL INSTEAD OF HATEFUL 1384 00:55:38,840 --> 00:55:40,400 BECAUSE SOME ABLEISM IS NOT 1385 00:55:40,400 --> 00:55:42,520 HATEFUL AND MAY BE WELL INTENDED 1386 00:55:42,520 --> 00:55:46,880 AND IT CAN STILL BE HARMFUL. 1387 00:55:46,880 --> 00:55:48,360 ABLEISM OPERATES SUDDENLY AND IT 1388 00:55:48,360 --> 00:55:50,880 CAN BE UNCONSCIOUS AND IT'S 1389 00:55:50,880 --> 00:55:53,680 ANNAL GIST TO RACISM, SEXISM, 1390 00:55:53,680 --> 00:55:55,760 OTHERRISMS THAT EFFECT OTHER 1391 00:55:55,760 --> 00:56:02,760 DIVERSE AND MARGINALIZED GROUPS. 1392 00:56:02,760 --> 00:56:04,520 IN CYTOLOGY WE DIFFERENTIATE 1393 00:56:04,520 --> 00:56:06,400 BETWEEN THOSE THAT ARE EXPLICIT 1394 00:56:06,400 --> 00:56:08,800 OR CONSCIOUSLY HELD AND 1395 00:56:08,800 --> 00:56:10,400 TYPICALLY WE ARE COMFORTABLE 1396 00:56:10,400 --> 00:56:12,960 EXPRESSING THOSE OUTWARDLY AND 1397 00:56:12,960 --> 00:56:14,280 FIRSTS IMPLICIT ATTITUDES. 1398 00:56:14,280 --> 00:56:15,840 WHICH ARE SOMETIMES NOT EVEN 1399 00:56:15,840 --> 00:56:17,680 KNOWN TO THE PERSON HOLDING THEM 1400 00:56:17,680 --> 00:56:22,440 AND THEY CAN EXIST 1401 00:56:22,440 --> 00:56:26,320 SUBCONSCIOUSLY AND AND THEY CAN 1402 00:56:26,320 --> 00:56:28,040 BE SUBTLE. 1403 00:56:28,040 --> 00:56:30,040 IMPLICIT BIASES CAN BE REDUCED 1404 00:56:30,040 --> 00:56:32,360 AND WE CAN ONLY REDUCE THEM IF 1405 00:56:32,360 --> 00:56:33,720 WE'RE ABLE TO RECOGNIZE THEM AND 1406 00:56:33,720 --> 00:56:35,160 LEARN HOW TO MANAGE THEM AND IN 1407 00:56:35,160 --> 00:56:41,280 ORDER TO CONTROL THE LIKELIHOOD 1408 00:56:41,280 --> 00:56:42,400 THEY WILL NEGATIVELY EFFECT THE 1409 00:56:42,400 --> 00:56:43,720 PEOPLE WHICH WE ARE WORKING FOR 1410 00:56:43,720 --> 00:56:44,960 OR SERVING. 1411 00:56:44,960 --> 00:56:47,840 AND SO, WHEN WE LOOK ATTITUDES, 1412 00:56:47,840 --> 00:56:49,120 WE OFTEN USE A MEASURE CALLED 1413 00:56:49,120 --> 00:56:50,800 THE IMPLICIT ASSOCIATION TEST 1414 00:56:50,800 --> 00:56:52,280 WHICH YOU MAY HAVE HEARD OF IT'S 1415 00:56:52,280 --> 00:56:53,440 AVAILABLE FOR FREE AND ANYBODY 1416 00:56:53,440 --> 00:56:57,480 CAN TAKE IT ON-LINE. 1417 00:56:57,480 --> 00:57:00,200 THEY HAVE MANY, MANY DIFFERENT 1418 00:57:00,200 --> 00:57:01,720 INCLUDING DISABILITIES AND WHEN 1419 00:57:01,720 --> 00:57:04,480 WE COMPARE THE RESEARCH ON 1420 00:57:04,480 --> 00:57:07,200 DISABILITY, TO THAT OF OTHER 1421 00:57:07,200 --> 00:57:10,560 TYPES OF MINORTIZIED GROUPS, WE 1422 00:57:10,560 --> 00:57:15,160 SEE THESE STUDENTS ARE ACTUALLY 1423 00:57:15,160 --> 00:57:18,000 THEY ARE THE NEGATIVE. 1424 00:57:18,000 --> 00:57:21,480 WHEN THEY TAKE THE IET WE SEE 1425 00:57:21,480 --> 00:57:26,480 LOWER EXPLICIT AND IMPLICIT 1426 00:57:26,480 --> 00:57:28,480 ATTITUDE AND SHOW A MAUD RAL 1427 00:57:28,480 --> 00:57:30,080 PREFERENCE FOR NON DISABLED 1428 00:57:30,080 --> 00:57:30,320 PEOPLE. 1429 00:57:30,320 --> 00:57:32,080 THAT'S INTERNALIZED ABLEISM. 1430 00:57:32,080 --> 00:57:33,640 FAMILY MEMBERS OF PEOPLE WITH 1431 00:57:33,640 --> 00:57:35,240 DISABILITIES HAVE LOWER EXPLICIT 1432 00:57:35,240 --> 00:57:38,840 OR OUTWARD BIAS, BUT THEY HAVE 1433 00:57:38,840 --> 00:57:41,120 THE SAME DEGREE OF IMPLICIT BIAS 1434 00:57:41,120 --> 00:57:42,560 AND IN GENERAL, WOMEN TEND TO 1435 00:57:42,560 --> 00:57:43,960 HAVE LESS BIAS TOWARDS PEOPLE 1436 00:57:43,960 --> 00:57:46,400 WITH DISABILITIES THAN MEN AND 1437 00:57:46,400 --> 00:57:48,160 HERE IS WHERE IT GETS REALLY 1438 00:57:48,160 --> 00:57:51,040 INTERESTING ESPECIALLY FROM A 1439 00:57:51,040 --> 00:57:52,040 SCIENTIFIC PERSPECTIVE. 1440 00:57:52,040 --> 00:57:54,320 AS OIR EDUCATION LEVEL 1441 00:57:54,320 --> 00:57:56,560 INCREASES, OUR EXPLICIT BIAS 1442 00:57:56,560 --> 00:57:58,720 DECREASES. 1443 00:57:58,720 --> 00:58:00,960 OUR IMPLICIT BIAS STARTS TO 1444 00:58:00,960 --> 00:58:01,360 RISE. 1445 00:58:01,360 --> 00:58:03,280 AND WHAT THAT TELLS US, THAT 1446 00:58:03,280 --> 00:58:04,920 HEALTHCARE PROVIDERS AND 1447 00:58:04,920 --> 00:58:06,960 RESEARCHERS, ARE GENERALLY NOT 1448 00:58:06,960 --> 00:58:12,560 AWARE OF THEIR OWN BIASES. 1449 00:58:12,560 --> 00:58:14,360 SO, WE CLASSIFY THIS GROUP OF 1450 00:58:14,360 --> 00:58:19,000 PEOPLE IN THE LITERATURE AS 1451 00:58:19,000 --> 00:58:21,080 AVERSIVE ABLEIST OR PEOPLE WITH 1452 00:58:21,080 --> 00:58:23,400 LOW EXPLICIT PREJUDICE AND HIGH 1453 00:58:23,400 --> 00:58:26,720 LEVELS OF IMPLICIT PREJUDICE. 1454 00:58:26,720 --> 00:58:27,840 I WANT TO POINT OUT THERE'S A 1455 00:58:27,840 --> 00:58:30,680 LOT OF DIFFERENCES UNDER THE 1456 00:58:30,680 --> 00:58:32,680 UMBRELLA TERM OF DISABILITY. 1457 00:58:32,680 --> 00:58:35,840 WE ARE EXTREMELY HETERO GENIUS 1458 00:58:35,840 --> 00:58:36,480 GROUP. 1459 00:58:36,480 --> 00:58:38,480 THERE ARE OBVIOUSLY MANY 1460 00:58:38,480 --> 00:58:40,720 DIFFERENT TYPES OF DISABILITIES 1461 00:58:40,720 --> 00:58:43,360 AND SO WHAT I HAVE DEVELOPED TO 1462 00:58:43,360 --> 00:58:45,760 THINK ABOUT ABLEISM, IS THIS 1463 00:58:45,760 --> 00:58:48,040 HIERARCHY OF STIGMA AND 1464 00:58:48,040 --> 00:58:52,120 BASICALLY I'VE TAKEN THE 1465 00:58:52,120 --> 00:58:55,920 LITERATURE AND HOW WE PRESSURE 1466 00:58:55,920 --> 00:58:57,680 ATTITUDES AND CREATE INSIDE 1467 00:58:57,680 --> 00:58:59,200 HIERARCHY WHERE YOU SEE ON THE 1468 00:58:59,200 --> 00:59:00,680 TOP, THAT PEOPLE WITH 1469 00:59:00,680 --> 00:59:02,480 DISABILITIES THAT ARE PHYSICAL, 1470 00:59:02,480 --> 00:59:05,600 CHRONIC ILLNESS, SO ON, THOSE 1471 00:59:05,600 --> 00:59:07,320 TEND TO BE THE LEAST 1472 00:59:07,320 --> 00:59:07,800 STIGMATIZED. 1473 00:59:07,800 --> 00:59:09,040 THEY'RE STILL A LOT OF ABLEISM 1474 00:59:09,040 --> 00:59:11,280 BUT WHEN YOU COMPARE IT TO 1475 00:59:11,280 --> 00:59:12,840 GROUPS LIKE YOU SEE AT BOTTOM OF 1476 00:59:12,840 --> 00:59:14,920 THE PYRAMID, PEOPLE WITH 1477 00:59:14,920 --> 00:59:19,560 PSYCHIATRIC DISABILITIES AND 1478 00:59:19,560 --> 00:59:21,040 INTELLECTUAL DISABILITIES ARE 1479 00:59:21,040 --> 00:59:22,560 MUCH, MUCH MORE STIGMATIZED 1480 00:59:22,560 --> 00:59:25,040 COMPARED TO THE PEOPLE WHO MIGHT 1481 00:59:25,040 --> 00:59:26,880 FALL AT TOP OF THIS PYRAMID. 1482 00:59:26,880 --> 00:59:28,520 OF COURSE THERE ARE EXCEPTION TO 1483 00:59:28,520 --> 00:59:29,280 THIS. 1484 00:59:29,280 --> 00:59:31,520 FOR ONE, THERE'S CERTAIN TYPES 1485 00:59:31,520 --> 00:59:35,240 OF DISABILITIES THAT ARE 1486 00:59:35,240 --> 00:59:36,040 EXTREMELY STIGMATIZING. 1487 00:59:36,040 --> 00:59:37,560 I'LL GIVE YOU AN EXAMPLE OF THE 1488 00:59:37,560 --> 00:59:39,280 PHYSICAL DISABILITY OF SOMEONE 1489 00:59:39,280 --> 00:59:41,440 WHO HAS A FACIAL ABNORMALITY. 1490 00:59:41,440 --> 00:59:43,680 THAT IS EXTREMELY STIGMATIZING. 1491 00:59:43,680 --> 00:59:45,560 IT MAY NOT BE VERY IMPAIRING BUT 1492 00:59:45,560 --> 00:59:47,560 IT'S VERY STIGMATIZING. 1493 00:59:47,560 --> 00:59:48,920 SO THAT FALL LOWER ON THE 1494 00:59:48,920 --> 00:59:49,520 PYRAMID. 1495 00:59:49,520 --> 00:59:52,080 SAME WITH THE CHRONIC ILLNESS OF 1496 00:59:52,080 --> 00:59:52,720 HIV/AIDS. 1497 00:59:52,720 --> 00:59:54,960 IT'S VERY, VERY STIGMATIZED. 1498 00:59:54,960 --> 00:59:56,800 THERE ARE ALSO DIFFERENCES 1499 00:59:56,800 --> 00:59:59,280 WITHIN THESE CATEGORIES SO, WE 1500 00:59:59,280 --> 01:00:02,400 HAVE AUTISM AND ADHD BOTH NEURO 1501 01:00:02,400 --> 01:00:03,840 DEVELOPMENTAL DISABILITIES AND 1502 01:00:03,840 --> 01:00:06,000 AUTISM IS A LOT MORE 1503 01:00:06,000 --> 01:00:06,280 STIGMATIZED. 1504 01:00:06,280 --> 01:00:08,320 SAME THING IN THE PSYCHIATRIC 1505 01:00:08,320 --> 01:00:09,880 CATEGORY AND ANXIETY DISORDERS 1506 01:00:09,880 --> 01:00:11,640 AND SCHIZOPHRENIA ARE BOTH 1507 01:00:11,640 --> 01:00:14,040 PSYCHIATRIC DISABILITIES AND 1508 01:00:14,040 --> 01:00:18,520 ANXIETY IS LESS STIGMATIZING. 1509 01:00:18,520 --> 01:00:20,600 THE OTHER THING I LIKE TO LOOK 1510 01:00:20,600 --> 01:00:22,880 AT IS HOW RELATIONSHIPS TO 1511 01:00:22,880 --> 01:00:24,440 DISABILITY EFFECT ABLEISM. 1512 01:00:24,440 --> 01:00:26,560 SO, IN THE MIDDLE CIRCLE HERE, I 1513 01:00:26,560 --> 01:00:29,040 HAVE THE RELATIONSHIPS THAT ARE 1514 01:00:29,040 --> 01:00:30,160 ESSENTIALLY NEUTRAL. 1515 01:00:30,160 --> 01:00:32,560 MEANING THEY'RE REALLY NOT 1516 01:00:32,560 --> 01:00:33,680 SIGNIFICANT AND DIFFERENCES AT 1517 01:00:33,680 --> 01:00:36,040 THE GROUP LEVEL IN TERMS OF 1518 01:00:36,040 --> 01:00:36,320 ATTITUDES. 1519 01:00:36,320 --> 01:00:38,440 SO YOU CAN BE A PEER, A 1520 01:00:38,440 --> 01:00:39,640 CO-WORKER OF A DISABILITY 1521 01:00:39,640 --> 01:00:41,440 PERSON, YOU CAN HAVE HAD MINIMAL 1522 01:00:41,440 --> 01:00:43,200 CONTACT WITH A DISABILITY 1523 01:00:43,200 --> 01:00:44,760 COMMUNITY, YOU COULD EVEN HAVE A 1524 01:00:44,760 --> 01:00:46,880 FAMILY MEMBER WITH A DISABILITY 1525 01:00:46,880 --> 01:00:48,960 AND THOSE ROLES ARE NOT 1526 01:00:48,960 --> 01:00:53,640 NECESSARILY GOING TO PREDICT 1527 01:00:53,640 --> 01:00:54,360 YOUR ATTITUDE TOWARDS 1528 01:00:54,360 --> 01:00:54,680 DISABILITY. 1529 01:00:54,680 --> 01:00:56,000 IF WE GO OVER TO THE LEFT SIDE 1530 01:00:56,000 --> 01:00:58,280 OF THE SLIDE, YOU HAVE 1531 01:00:58,280 --> 01:00:59,360 RELATIONSHIPS THAT ARE 1532 01:00:59,360 --> 01:01:01,040 ASSOCIATED WITH NEGATIVE 1533 01:01:01,040 --> 01:01:01,640 ATTITUDES. 1534 01:01:01,640 --> 01:01:03,160 AND THERE'S TWO WAYS THAT WE SEE 1535 01:01:03,160 --> 01:01:04,320 THIS IN THE RESEARCH. 1536 01:01:04,320 --> 01:01:07,160 ONE IS, PEOPLE WHO REPORT HAVING 1537 01:01:07,160 --> 01:01:09,200 HAD NEGATIVE CONTACT WITH THE 1538 01:01:09,200 --> 01:01:10,360 DISABILITY COMMUNITY. 1539 01:01:10,360 --> 01:01:12,840 IT MAKES SENSE AND NEGATIVE 1540 01:01:12,840 --> 01:01:13,880 CONTACT LEADS TO NEGATIVE 1541 01:01:13,880 --> 01:01:14,720 IMPRESSION AND STUDENTS. 1542 01:01:14,720 --> 01:01:16,960 THE OTHER ONE IS WHEN WE DO 1543 01:01:16,960 --> 01:01:20,080 RESEARCH WHERE WE ASK 1544 01:01:20,080 --> 01:01:21,280 PARTICIPANTS HOW YOU WOULD FEEL 1545 01:01:21,280 --> 01:01:24,040 TO CONSIDER SOMEONE WITH A 1546 01:01:24,040 --> 01:01:26,120 DISABILITY, AS A PERSPECTIVE 1547 01:01:26,120 --> 01:01:28,680 ROMANTIC PARTNER, ESSENTIAL 1548 01:01:28,680 --> 01:01:30,320 PARTNER, SOMEONE WITH WHO YOU 1549 01:01:30,320 --> 01:01:31,520 ARE VERY INTIMATE. 1550 01:01:31,520 --> 01:01:35,800 THIS I WI WILL IS ITS VERY NEGAE 1551 01:01:35,800 --> 01:01:36,400 ATTITUDES. 1552 01:01:36,400 --> 01:01:39,480 IF YOU LOOK OVER HERE ON THE 1553 01:01:39,480 --> 01:01:40,600 RIGHT SIDE, THESE ARE THE 1554 01:01:40,600 --> 01:01:43,120 RELATIONSHIPS ASSOCIATED WITH 1555 01:01:43,120 --> 01:01:44,800 POSITIVE ATTITUDES AND OR LESS 1556 01:01:44,800 --> 01:01:46,040 NOT BIAS. 1557 01:01:46,040 --> 01:01:48,200 AND THERE'S ONE KEY WORD HERE, 1558 01:01:48,200 --> 01:01:50,440 THE KEY WORD IS POWER. 1559 01:01:50,440 --> 01:01:51,840 IT'S THE PERSON WITH THE 1560 01:01:51,840 --> 01:01:53,400 DISABILITY IS YOUR SUPERVISOR, 1561 01:01:53,400 --> 01:01:57,200 THEY'RE YOUR BOSS, THEY'RE YOUR 1562 01:01:57,200 --> 01:01:58,720 PROFESSOR, THOSE NOT THINGS 1563 01:01:58,720 --> 01:02:01,680 ACTUALLY ARE ASSOCIATED WITH 1564 01:02:01,680 --> 01:02:05,840 IMPROVEMENTS IN BIAS TOWARDS 1565 01:02:05,840 --> 01:02:06,920 DISABILITY. 1566 01:02:06,920 --> 01:02:09,960 SO, TO GO BACK TO THE IDEA OF 1567 01:02:09,960 --> 01:02:14,400 THIS IDEA OF HIERARCHY WITHIN 1568 01:02:14,400 --> 01:02:15,600 DISABILITY, MOST STIGMATIZED 1569 01:02:15,600 --> 01:02:17,520 DISABILITIES ARE THOSE THAT ARE 1570 01:02:17,520 --> 01:02:19,560 HIGHLY VISIBLE AND THOSE THAT 1571 01:02:19,560 --> 01:02:21,600 INVOLVE MENTAL FUNCTIONING AND 1572 01:02:21,600 --> 01:02:24,160 THOSE FOR WHICH A PERSON IS SEEN 1573 01:02:24,160 --> 01:02:27,240 AS RESPONSIBLE AND THIS IS 1574 01:02:27,240 --> 01:02:28,680 IMPORTANT BECAUSE AS HUMAN 1575 01:02:28,680 --> 01:02:31,880 BEINGS WE HAVE A TENDENCY TO 1576 01:02:31,880 --> 01:02:34,120 BLAME PEOPLE FOR UP FAVORABLE 1577 01:02:34,120 --> 01:02:36,640 PERCEIVED UNFAVORABLE OUTCOMES 1578 01:02:36,640 --> 01:02:39,360 AND SOCIAL PSYCHOLOGY, WE CALL 1579 01:02:39,360 --> 01:02:40,800 THIS THE JUST WORLD FALLACY AND 1580 01:02:40,800 --> 01:02:44,120 IT'S THIS HUMAN DESIRE TO 1581 01:02:44,120 --> 01:02:45,880 PERCEIVE THE WORLD AS A FAIR AND 1582 01:02:45,880 --> 01:02:47,200 JUST PLACE. 1583 01:02:47,200 --> 01:02:50,440 AND SO DISABILITIES THAT ARE 1584 01:02:50,440 --> 01:02:52,840 PERCEIVED AS HAVING A MENTAL OR 1585 01:02:52,840 --> 01:02:54,920 BEHAVIORAL COMPONENT SUCH AS A 1586 01:02:54,920 --> 01:02:58,440 SUBSTANCE USE DISORDER ARE MORE 1587 01:02:58,440 --> 01:02:59,400 CONTROLLABLE AND THUS THE PERSON 1588 01:02:59,400 --> 01:03:01,680 IS SEEN AS MORE RESPONSIBLE AND 1589 01:03:01,680 --> 01:03:03,600 BLAMED WHEN COMPARED TO 1590 01:03:03,600 --> 01:03:05,280 DISABILITIES THAT ARE PERCEIVED 1591 01:03:05,280 --> 01:03:08,800 TO BE LESS CONTROLLABLE SUCH AS 1592 01:03:08,800 --> 01:03:11,120 PHYSICAL OR SENSORY 1593 01:03:11,120 --> 01:03:11,560 DISABILITIES. 1594 01:03:11,560 --> 01:03:13,400 SO I MENTIONED EARLIER THAT 1595 01:03:13,400 --> 01:03:15,480 ATTITUDES TOWARDS DISABILITIES 1596 01:03:15,480 --> 01:03:17,200 EXIST ON A CONTINUUM. 1597 01:03:17,200 --> 01:03:21,480 AND SO I DEVELOPED THIS 1598 01:03:21,480 --> 01:03:23,720 SENSATIONALIZED CONTINUUM TO 1599 01:03:23,720 --> 01:03:24,800 DESCRIBE WHAT TYPE OF ATTITUDES 1600 01:03:24,800 --> 01:03:26,000 WE TEND TO SEE. 1601 01:03:26,000 --> 01:03:28,480 ON THE LEFT SIDE, WE HAVE THE 1602 01:03:28,480 --> 01:03:30,520 INFERIOR STEREOTYPES. 1603 01:03:30,520 --> 01:03:31,680 THAT ARE NEGATIVE. 1604 01:03:31,680 --> 01:03:33,080 PEOPLE WITH DISABILITIES ARE PRO 1605 01:03:33,080 --> 01:03:38,680 TRADE AS DEPENDENT, VULNERABLE, 1606 01:03:38,680 --> 01:03:40,320 INCOMPETENT AND ON THE RIDE 1607 01:03:40,320 --> 01:03:42,840 SIDE, WE HAVE THE HERO END OF 1608 01:03:42,840 --> 01:03:44,640 THE SPECTRUM THAT'S THE OVERLY 1609 01:03:44,640 --> 01:03:45,800 POSITIVE STEREOTYPES WHERE 1610 01:03:45,800 --> 01:03:47,680 PEOPLE WITH DISABILITIES ARE 1611 01:03:47,680 --> 01:03:50,760 CHARACTERIZED AS INSPIRATIONAL, 1612 01:03:50,760 --> 01:03:53,080 COURAGEOUS AND SUPER HUMAN AND 1613 01:03:53,080 --> 01:03:56,280 THE PROBLEM HERE IS THAT THESE 1614 01:03:56,280 --> 01:04:00,760 EXTREME POSITIVE AND NEGATIVE 1615 01:04:00,760 --> 01:04:06,080 CAN BE DEHUMANIZING THUMANIZE TN 1616 01:04:06,080 --> 01:04:08,640 BE HARMFUL AND IT'S NOT THE ONLY 1617 01:04:08,640 --> 01:04:10,280 MINORTIZIED COMMUNITY THAT DEALS 1618 01:04:10,280 --> 01:04:11,400 WITH THE PROBLEM OF 1619 01:04:11,400 --> 01:04:15,600 QUOTE-UNQUOTE OVERLY POSITIVE 1620 01:04:15,600 --> 01:04:16,120 STEREOTYPES. 1621 01:04:16,120 --> 01:04:19,880 NOW, ONE WAY THAT YOU SHE PLAY Y 1622 01:04:19,880 --> 01:04:22,520 OUT IS THE CONCEPT THAT THE 1623 01:04:22,520 --> 01:04:26,160 DISABILITY COMMUNITY CALLS 1624 01:04:26,160 --> 01:04:27,320 INSPIRATION PORN. 1625 01:04:27,320 --> 01:04:31,120 IT'S MEANT TO BE A PROVOCATIVE 1626 01:04:31,120 --> 01:04:31,680 TERM. 1627 01:04:31,680 --> 01:04:33,120 WHAT ARE THESE OFTEN SEEN ON 1628 01:04:33,120 --> 01:04:35,040 SOCIAL MEDIA AND IN OTHER 1629 01:04:35,040 --> 01:04:37,960 PLACES, THEY'RE IMAGES OF 1630 01:04:37,960 --> 01:04:38,720 DISABILITY PEOPLE WITH 1631 01:04:38,720 --> 01:04:40,080 MOTIVATIONAL STATEMENTS ATTACHED 1632 01:04:40,080 --> 01:04:42,280 THAT IN THE WORDS OF THE LATE 1633 01:04:42,280 --> 01:04:45,080 GREAT STELLA YOUNG, HAVE THE 1634 01:04:45,080 --> 01:04:47,200 DUEL FUNCTION OF MAKING THE NON 1635 01:04:47,200 --> 01:04:50,600 DISABLED FEEL BETTER ABOUT 1636 01:04:50,600 --> 01:04:51,800 THEMSELVES WHILE SIMULTANEOUSLY 1637 01:04:51,800 --> 01:04:53,720 HOLDING THE AVERAGE DISABLED 1638 01:04:53,720 --> 01:04:56,720 PERSON TO AN IMPOSE BLEE HIGH 1639 01:04:56,720 --> 01:04:57,160 STANDARD. 1640 01:04:57,160 --> 01:04:59,360 I HAVE TWO EXAMPLES OF THIS ON 1641 01:04:59,360 --> 01:05:00,040 THE SLIDE. 1642 01:05:00,040 --> 01:05:02,400 ON THE TOP-RIGHT, YOU SEE 1643 01:05:02,400 --> 01:05:06,040 THERE'S AN AMPUTEE SURFER AND 1644 01:05:06,040 --> 01:05:08,280 THIS PICTURE IS ACCOMPANIED BY A 1645 01:05:08,280 --> 01:05:10,160 QUOTE FROM SCOTT HAMILTON, THAT 1646 01:05:10,160 --> 01:05:11,840 SAYS, THE ONLY DISABILITY IN 1647 01:05:11,840 --> 01:05:13,880 LIFE IS A BAD ATTITUDE. 1648 01:05:13,880 --> 01:05:17,360 THEN YOU GO DOWN TO THE LOWER 1649 01:05:17,360 --> 01:05:21,200 PICTURE, IS A PHOTO OF A CHILD 1650 01:05:21,200 --> 01:05:23,920 USING A MANUAL WHEELCHAIR WITH A 1651 01:05:23,920 --> 01:05:25,200 BASKETBALL ON THEIR LAP PLAYING 1652 01:05:25,200 --> 01:05:26,800 A GAME OF WHEELCHAIR BASKETBALL. 1653 01:05:26,800 --> 01:05:29,360 AND THE TEXT THAT ACCOMPANIES 1654 01:05:29,360 --> 01:05:32,480 THIS IMAGE SAYS, YOUR EXCUSE IS 1655 01:05:32,480 --> 01:05:32,720 INVALID. 1656 01:05:32,720 --> 01:05:33,800 AND YOU MAY NOTICE THAT I'VE 1657 01:05:33,800 --> 01:05:36,160 COVERED UP THE PEOPLE'S FACES. 1658 01:05:36,160 --> 01:05:38,600 THE REASON WHY I DO THAT BECAUSE 1659 01:05:38,600 --> 01:05:40,040 WHAT I FOUND, WHAT I'VE LEARNED 1660 01:05:40,040 --> 01:05:42,800 OVER TIME DOING THIS WORK, IS 1661 01:05:42,800 --> 01:05:46,880 THAT OFTEN THESE PICTURES ARE 1662 01:05:46,880 --> 01:05:48,080 TAKEN FROM SITES THAT PEOPLE 1663 01:05:48,080 --> 01:05:51,040 THOUGHT WERE PRIVATE, FROM THEIR 1664 01:05:51,040 --> 01:05:53,160 PROFILES, AND USED WITHOUT THEIR 1665 01:05:53,160 --> 01:05:56,640 CONCEPT, AND OFTEN EVEN WITHOUT 1666 01:05:56,640 --> 01:05:57,440 THEIR KNOWLEDGE. 1667 01:05:57,440 --> 01:06:01,360 SOME OTHER EXAMPLES OF THIS 1668 01:06:01,360 --> 01:06:05,160 INSPIRATION PORN, ARE CALLING 1669 01:06:05,160 --> 01:06:06,200 THEM INSPIRATIONAL FOR CARRYING 1670 01:06:06,200 --> 01:06:08,400 OUT DAILY TASKS AND PRAISING 1671 01:06:08,400 --> 01:06:10,160 THEM FOR QUOTE-UNQUOTE 1672 01:06:10,160 --> 01:06:11,920 OVERCOMING THEIR DISABILITIES 1673 01:06:11,920 --> 01:06:15,240 AND ANOTHER ONE WE SEE A LOT IS 1674 01:06:15,240 --> 01:06:17,640 KEEPING PRAISE ON NON DISABLED 1675 01:06:17,640 --> 01:06:21,400 PEOPLE FOR HELPING OR 1676 01:06:21,400 --> 01:06:22,000 DO-GOODING. 1677 01:06:22,000 --> 01:06:23,720 WITH SOMEONE WITH A DISABILITY. 1678 01:06:23,720 --> 01:06:25,400 SO, IN THIS EXAMPLE ON THE 1679 01:06:25,400 --> 01:06:33,080 RIGHT-HAND SIDE OF THE SLIDE, 1680 01:06:33,080 --> 01:06:34,640 THERE'S A YOUNG COUPLE GOING TO 1681 01:06:34,640 --> 01:06:34,840 PROM. 1682 01:06:34,840 --> 01:06:37,920 HE ASKED HER TO PROM EVEN IF HER 1683 01:06:37,920 --> 01:06:39,880 CONDITION. 1684 01:06:39,880 --> 01:06:41,080 LIKE AND HAIR EQUALS RESPECT. 1685 01:06:41,080 --> 01:06:42,800 SHE'S IN A POWER WHEELCHAIR AND 1686 01:06:42,800 --> 01:06:44,360 HE IS STANDING UP. 1687 01:06:44,360 --> 01:06:45,920 SO, I GUESS WE'RE IT TO ASSUME 1688 01:06:45,920 --> 01:06:48,840 HE IS NOT DISABLED. 1689 01:06:48,840 --> 01:06:51,240 THIS WHOLE IDEA IS LUDICROUS, 1690 01:06:51,240 --> 01:06:52,560 RIGHT, THAT WE DON'T KNOW THESE 1691 01:06:52,560 --> 01:06:54,040 PEOPLE FOR ALL WE KNOW, YOU 1692 01:06:54,040 --> 01:06:55,640 KNOW, SHE'S DOING HIM A FAVOR 1693 01:06:55,640 --> 01:06:58,480 TAKING HIM TO THE PROM. 1694 01:06:58,480 --> 01:07:01,080 AND ANOTHER AREA WHERE WE SEE 1695 01:07:01,080 --> 01:07:04,960 THIS AS NOT DISABLED PEOPLE IS 1696 01:07:04,960 --> 01:07:09,360 GOING INTO THE REHAB CLINIC OR 1697 01:07:09,360 --> 01:07:13,400 GOING INTO BUY DURABLE MEDICAL 1698 01:07:13,400 --> 01:07:13,680 EQUIPMENT. 1699 01:07:13,680 --> 01:07:20,360 WE HAVE SPINNATIONAL IMAGES INS. 1700 01:07:20,360 --> 01:07:23,440 THERE'S AN EXAMPLE OF A DIS 1701 01:07:23,440 --> 01:07:27,360 PERSON IN A WHEELCH WHEEL CLIMBA 1702 01:07:27,360 --> 01:07:28,440 MOUNTAIN OR ROCK CLIMBING. 1703 01:07:28,440 --> 01:07:30,000 THE AND MESSAGE THIS GIVES OFF 1704 01:07:30,000 --> 01:07:32,280 IS THAT DISABILITY IS A NEGATIVE 1705 01:07:32,280 --> 01:07:34,040 BARRIER IN LIFE THAT CAN 1706 01:07:34,040 --> 01:07:37,360 SUPPOSEDLY BE OVERCOME THROUGH 1707 01:07:37,360 --> 01:07:40,120 SPORTS AND A POSITIVE ATTITUDE. 1708 01:07:40,120 --> 01:07:42,920 AND, IF THIS DISABLED ATHLETE 1709 01:07:42,920 --> 01:07:44,600 CAN ACHIEVE SUCH A FEAT, ANY 1710 01:07:44,600 --> 01:07:45,880 DISABLE PERSON CAN. 1711 01:07:45,880 --> 01:07:48,800 IT'S THIS "YOU CAN" MIND SET 1712 01:07:48,800 --> 01:07:51,800 WHERE ACHIEVEMENT IS DICTATED BY 1713 01:07:51,800 --> 01:07:54,080 THE INDIVIDUAL'S LEVEL OF 1714 01:07:54,080 --> 01:07:55,040 EFFORT. 1715 01:07:55,040 --> 01:07:57,440 AND AGAIN, I WANT TO HIGHLIGHT A 1716 01:07:57,440 --> 01:07:59,000 QUOTE FROM STELLA YOUNG BECAUSE 1717 01:07:59,000 --> 01:08:02,400 SHE HAS SUCH A WONDERFUL WAY OF 1718 01:08:02,400 --> 01:08:04,480 RESPONDING TO THESE TYPES OF 1719 01:08:04,480 --> 01:08:06,640 IMAGES AND SHE SAID NO AMOUNT OF 1720 01:08:06,640 --> 01:08:09,040 SMILING AT A FLIGHT OF STAIRS 1721 01:08:09,040 --> 01:08:10,440 OVER TURNED IT INTO A RAMP. 1722 01:08:10,440 --> 01:08:12,360 AND I THINK THAT IS PROFOUND. 1723 01:08:12,360 --> 01:08:14,600 YOU CAN BE THE MOST LUCKY 1724 01:08:14,600 --> 01:08:15,960 DISABLED PERSON AND YOU ARE 1725 01:08:15,960 --> 01:08:18,720 STILL GOING TO BE LIVING IN A 1726 01:08:18,720 --> 01:08:19,720 WORLD THAT WAS NOT BUILT FOR 1727 01:08:19,720 --> 01:08:23,760 PEOPLE LIKE YOU. 1728 01:08:23,760 --> 01:08:25,600 I'M GOING TO MOVE IT A CLIP HERE 1729 01:08:25,600 --> 01:08:26,440 BECAUSE I KNOW WE'RE RUNNING OUT 1730 01:08:26,440 --> 01:08:27,240 OF TIME. 1731 01:08:27,240 --> 01:08:29,040 I WANT TO TALK ABOUT THIS 1732 01:08:29,040 --> 01:08:29,960 ICEBERG ANALOGY. 1733 01:08:29,960 --> 01:08:33,160 THE IDEA OF AN ICEBERG IS THAT 1734 01:08:33,160 --> 01:08:35,960 THEY ARE HUGE AND MOST OF THE 1735 01:08:35,960 --> 01:08:38,080 VERY DANGEROUS PARTS ARE UNDER 1736 01:08:38,080 --> 01:08:38,280 WATER. 1737 01:08:38,280 --> 01:08:41,240 SO, I ADAPTED THIS FROM THE WORK 1738 01:08:41,240 --> 01:08:44,760 OF COLLEAGUES WHO USED IT TO 1739 01:08:44,760 --> 01:08:46,040 TALK ABOUT RACISM BECAUSE I 1740 01:08:46,040 --> 01:08:48,200 THOUGHT IT WAS WONDERFULLY DONE. 1741 01:08:48,200 --> 01:08:49,320 THERE'S SOME ABLEISM THAT IS 1742 01:08:49,320 --> 01:08:50,560 ABOVE THE SURFACE HERE. 1743 01:08:50,560 --> 01:08:52,440 SO THERE'S A PICTURE OF AN 1744 01:08:52,440 --> 01:08:54,000 ICEBERG WITH A SMALL PORTION 1745 01:08:54,000 --> 01:08:56,600 ABOVE THE SURFACE AND THAT'S THE 1746 01:08:56,600 --> 01:08:57,800 INTERPERSONAL ABLEISM THAT 1747 01:08:57,800 --> 01:08:59,840 OCCURS BUT UNDER THE SURFACE, 1748 01:08:59,840 --> 01:09:01,760 THERE'S INDIVIDUAL AND INTERNAL 1749 01:09:01,760 --> 01:09:02,840 ABLEISM, INSTITUTIONAL, 1750 01:09:02,840 --> 01:09:06,160 STRUCTURAL AND SYSTEMIC ABLEISM. 1751 01:09:06,160 --> 01:09:09,160 SO, THE TOP PART ARE MICRO AND 1752 01:09:09,160 --> 01:09:10,960 CAN INCLUDE MICROAGGRESSIONS 1753 01:09:10,960 --> 01:09:16,800 WHERE IT'S THE BOTTOM PART ARE 1754 01:09:16,800 --> 01:09:19,960 THE MORE DEEPLY INGRAINED MACRO 1755 01:09:19,960 --> 01:09:21,280 AGGRESSIONS THAT OCCUR AT THE 1756 01:09:21,280 --> 01:09:21,960 SYSTEMIC LEVEL. 1757 01:09:21,960 --> 01:09:24,600 HOPEFULLY MANY OF YOU KNOW WHAT 1758 01:09:24,600 --> 01:09:25,080 MICROAGGRESSIONS ARE. 1759 01:09:25,080 --> 01:09:29,040 IF YOU DON'T, THESE ARE SUBTLE, 1760 01:09:29,040 --> 01:09:32,320 INDINDIRECT BEGINS PEOPLE WHO AE 1761 01:09:32,320 --> 01:09:34,240 PART OF MARGINALIZED 1762 01:09:34,240 --> 01:09:34,600 COMMUNITIES. 1763 01:09:34,600 --> 01:09:38,400 IT WAS ORIGINALLY IDENTIFIED TO 1764 01:09:38,400 --> 01:09:39,240 OCCUR WITH PEOPLE WHO WERE 1765 01:09:39,240 --> 01:09:41,840 MEMBERS OF MINORTIZIED RACIAL 1766 01:09:41,840 --> 01:09:42,480 IDENTITIES. 1767 01:09:42,480 --> 01:09:47,240 THESE ARE EVERY DAY OF SLIGHTS 1768 01:09:47,240 --> 01:09:49,600 AND INSULTS THAT CAN BE 1769 01:09:49,600 --> 01:09:50,920 OFFENSIVE AND SOMETIMES PEOPLE 1770 01:09:50,920 --> 01:09:52,560 ARE WELL INTENTIONED BUT THEY 1771 01:09:52,560 --> 01:09:55,200 DON'T REALIZE THAT WHAT THEY'RE 1772 01:09:55,200 --> 01:09:57,080 SAYING IS UPSETTING OR 1773 01:09:57,080 --> 01:09:57,360 OFFENSIVE. 1774 01:09:57,360 --> 01:09:58,800 WHAT THEY'RE SAYING OR DOING. 1775 01:09:58,800 --> 01:10:01,080 AND THESE MICROAGGRESSIONS CAN 1776 01:10:01,080 --> 01:10:03,000 REFLECT OUR INTEREST AND BIASES 1777 01:10:03,000 --> 01:10:05,320 THAT WE HOLD WHICH I MENTIONED 1778 01:10:05,320 --> 01:10:06,120 EARLIER. 1779 01:10:06,120 --> 01:10:07,960 SO, I DON'T HAVE A TON OF TIME 1780 01:10:07,960 --> 01:10:11,040 TO GO OVER EVERY MICRO 1781 01:10:11,040 --> 01:10:12,240 AGGRESSION BUT I WILL HIGHLIGHT 1782 01:10:12,240 --> 01:10:13,600 A COUPLE OF THEM. 1783 01:10:13,600 --> 01:10:15,800 ONE IS THE DENIAL OF PERSONAL 1784 01:10:15,800 --> 01:10:17,600 IDENTITY THAT PEOPLE WITH 1785 01:10:17,600 --> 01:10:18,760 DISABILITIES REPORT THAT THEY 1786 01:10:18,760 --> 01:10:21,640 GET THIS FEEDBACK, YOU KNOW, 1787 01:10:21,640 --> 01:10:23,160 THAT NOTHING MATTERS BUT THEIR 1788 01:10:23,160 --> 01:10:26,280 DISABILITY SO WHEN I WAS IN 1789 01:10:26,280 --> 01:10:28,120 CLINIC AND I HEARD ANNA TENDING 1790 01:10:28,120 --> 01:10:29,320 PHYSICIAN SAID I'M GOING TO SEE 1791 01:10:29,320 --> 01:10:31,200 THE F.B.I. IN ROOM 432. 1792 01:10:31,200 --> 01:10:32,240 THE F.B.I. 1793 01:10:32,240 --> 01:10:36,080 THE PERSON WAS BEING REFERRED TO 1794 01:10:36,080 --> 01:10:38,600 AS AN OBJECT RATHER THAN A 1795 01:10:38,600 --> 01:10:40,600 PERSON. 1796 01:10:40,600 --> 01:10:42,040 PEOPLE DENY THE DISABILITY 1797 01:10:42,040 --> 01:10:42,400 EXPERIENCE. 1798 01:10:42,400 --> 01:10:44,840 I DON'T THINK OF YOU AS 1799 01:10:44,840 --> 01:10:45,600 DISABLED. 1800 01:10:45,600 --> 01:10:47,160 MOST PEOPLE THINK THAT'S A 1801 01:10:47,160 --> 01:10:47,480 COMPLIMENT. 1802 01:10:47,480 --> 01:10:53,480 A LOT OF HELPLESSNESS OR 1803 01:10:53,480 --> 01:10:53,840 INFANTILIZATION. 1804 01:10:53,840 --> 01:10:56,120 A PROVIDER MOVING A CHAIR 1805 01:10:56,120 --> 01:10:56,920 WITHOUT ASKING YOU EVEN THOUGH 1806 01:10:56,920 --> 01:10:59,160 YOU PLAN TO TRANSFER. 1807 01:10:59,160 --> 01:11:03,800 OR SOMETIMES THERE'S A PROVIDER 1808 01:11:03,800 --> 01:11:06,800 WILL EXPECT THAT THE DISABILITY 1809 01:11:06,800 --> 01:11:08,520 SOMEHOW INFLUENCED ALL ASPECTS 1810 01:11:08,520 --> 01:11:11,040 OF A PERSON. 1811 01:11:11,040 --> 01:11:13,320 SO SOMETIMES YOU WILL BE A 1812 01:11:13,320 --> 01:11:15,080 PROVIDER SPEAKS VERY LOUDLY TO A 1813 01:11:15,080 --> 01:11:19,040 BLIND PATIENT. 1814 01:11:19,040 --> 01:11:20,280 THE SECONDARY GAIN BECAUSE 1815 01:11:20,280 --> 01:11:21,600 CREDIT GOES TO PEOPLE WHO WORK 1816 01:11:21,600 --> 01:11:23,240 IN THE DISABILITY FIELD. 1817 01:11:23,240 --> 01:11:24,680 YOU KNOW, THAT YOU ARE AMAZING, 1818 01:11:24,680 --> 01:11:27,400 YOU ARE DEDICATING YOUR LIFE TO 1819 01:11:27,400 --> 01:11:30,280 HELPING THESE POOR DISABLED 1820 01:11:30,280 --> 01:11:30,520 PEOPLE. 1821 01:11:30,520 --> 01:11:32,000 ANOTHER IS THE DESEXUALIZATION 1822 01:11:32,000 --> 01:11:33,160 THAT OCCURS. 1823 01:11:33,160 --> 01:11:35,160 WE OFTEN TIMES NEGLECT TO ASK 1824 01:11:35,160 --> 01:11:37,040 ABOUT SEXUAL AND REPRODUCTIVE 1825 01:11:37,040 --> 01:11:39,640 HEALTH AND ADDRESS THOSE ISSUES 1826 01:11:39,640 --> 01:11:42,240 WITH PEOPLE WITH DISABILITIES. 1827 01:11:42,240 --> 01:11:44,520 AND FINALLY THE SECOND CLASS 1828 01:11:44,520 --> 01:11:46,480 CITIZEN MICRO AGGRESSION IS WHEN 1829 01:11:46,480 --> 01:11:48,120 OUR RIGHT TO EQUALITY ARE 1830 01:11:48,120 --> 01:11:49,040 DENIED. 1831 01:11:49,040 --> 01:11:51,160 SO A VERY REAL EXAMPLE IS A 1832 01:11:51,160 --> 01:11:53,600 PATIENT WITH COVID-19 DENIED 1833 01:11:53,600 --> 01:11:54,760 TREATMENT BECAUSE DOCTORS DEEMED 1834 01:11:54,760 --> 01:11:57,680 HIS QUALITY OF LIFE WITH A BRAIN 1835 01:11:57,680 --> 01:12:00,720 AND SPINAL CORD INJURY AS QUOTE 1836 01:12:00,720 --> 01:12:01,880 NONEXISTENT. 1837 01:12:01,880 --> 01:12:04,360 SO WE HAVE INTERNALIZED ABLEISM 1838 01:12:04,360 --> 01:12:05,200 WHICH INVOLVES DISTANCING 1839 01:12:05,200 --> 01:12:07,240 OURSELVES FROM THE DISABILITY 1840 01:12:07,240 --> 01:12:09,600 COMMUNITY AND WE ALSO MAY 1841 01:12:09,600 --> 01:12:11,000 INTERNALIZE THAT DISABILITY 1842 01:12:11,000 --> 01:12:12,760 HIERARCHY SO FOR MYSELF AS 1843 01:12:12,760 --> 01:12:16,560 SOMEONE WITH A PHYSICAL 1844 01:12:16,560 --> 01:12:18,400 DISABILITY MIGHT SEPARATE MYSELF 1845 01:12:18,400 --> 01:12:19,640 WITH PEOPLE WITH DEVELOPMENTAL 1846 01:12:19,640 --> 01:12:20,840 DISABILITIES AND THINK I'M NOT 1847 01:12:20,840 --> 01:12:21,240 LIKE THAT. 1848 01:12:21,240 --> 01:12:22,520 IT CAUSES A LOT OF PROBLEMS. 1849 01:12:22,520 --> 01:12:24,360 IT MAKES IT DIFFICULT FOR US TO 1850 01:12:24,360 --> 01:12:27,600 FORM A DISABILITY COMMUNITY 1851 01:12:27,600 --> 01:12:28,680 CULTURE AND PREVENT THAT FROM 1852 01:12:28,680 --> 01:12:31,880 COMING TOGETHER TO ADVOCATE. 1853 01:12:31,880 --> 01:12:33,520 THE INTERPERSONAL ABLEISM IS 1854 01:12:33,520 --> 01:12:35,240 WHEN WE'RE INTERACTING WITH EACH 1855 01:12:35,240 --> 01:12:37,080 OTHER ON A ONE TO ONE BASIS AND 1856 01:12:37,080 --> 01:12:40,560 IT OCCURS WITHIN A RELATIONSHIP 1857 01:12:40,560 --> 01:12:42,760 SO THOSE MICROAGGRESSIONS HAPPEN 1858 01:12:42,760 --> 01:12:44,800 IN DAILY LIFE AND THEY HAPPEN IN 1859 01:12:44,800 --> 01:12:45,760 HEALTHCARE SETTINGS. 1860 01:12:45,760 --> 01:12:47,400 SOME EXAMPLES IS WE SEE CAN 1861 01:12:47,400 --> 01:12:50,920 TREAT PATIENTS DIFFERENTLY 1862 01:12:50,920 --> 01:12:53,280 BECAUSE OF THEIR DISABILITIES, 1863 01:12:53,280 --> 01:12:54,200 MAYBE THINK THINKING THAT 1864 01:12:54,200 --> 01:12:55,240 INCOMPETENT OR UNABLE TO MAKE 1865 01:12:55,240 --> 01:12:59,240 THEIR DECISIONS. 1866 01:12:59,240 --> 01:13:01,200 WE UNFAIRLY DISCOUNT WHAT PEOPLE 1867 01:13:01,200 --> 01:13:03,080 WITH DISABILITIES TELL US 1868 01:13:03,080 --> 01:13:04,680 BECAUSE OF OUR ASSUMPTIONS AND 1869 01:13:04,680 --> 01:13:06,640 WE GET UNDER CONFIDENT. 1870 01:13:06,640 --> 01:13:08,440 WE DON'T QUESTION OUR FIRST 1871 01:13:08,440 --> 01:13:09,880 INTUITION OR SEEK OUT SECOND 1872 01:13:09,880 --> 01:13:11,640 OPINIONS SO MUCH AND WE DON'T 1873 01:13:11,640 --> 01:13:12,760 REFLECT CRITICALLY SOMETIMES 1874 01:13:12,760 --> 01:13:13,680 ABOUT THE SOCIAL CONDITIONS AND 1875 01:13:13,680 --> 01:13:15,840 THE DETERMINANTS OF HEALTH 1876 01:13:15,840 --> 01:13:18,560 FOCUSING INSTEAD JUST ON THE 1877 01:13:18,560 --> 01:13:20,200 INDIVIDUAL PERSON WE'RE WORKING 1878 01:13:20,200 --> 01:13:20,600 WITH. 1879 01:13:20,600 --> 01:13:23,400 OTHER WAYS THIS CAN HAPPEN ARE 1880 01:13:23,400 --> 01:13:25,120 OVERLOOKING IMPORTANT SUBJECTS. 1881 01:13:25,120 --> 01:13:26,840 I SEE THIS ALL THE TIME WITH SEX 1882 01:13:26,840 --> 01:13:30,800 YOUAL TSEXUALITY AND PARENTING. 1883 01:13:30,800 --> 01:13:31,840 NO ONE TALKS TO THESE PEOPLE 1884 01:13:31,840 --> 01:13:32,440 ABOUT THESE THINGS. 1885 01:13:32,440 --> 01:13:34,480 IF YOU WANT TO BE SEXUALLY 1886 01:13:34,480 --> 01:13:36,000 ACTIVE OR BECOME A PARENT? 1887 01:13:36,000 --> 01:13:37,280 WHAT MIGHT THAT LOOK LOOK FOR 1888 01:13:37,280 --> 01:13:38,400 YOU. 1889 01:13:38,400 --> 01:13:41,920 SOMETIMES THERE CAN EVEN BE SOME 1890 01:13:41,920 --> 01:13:42,720 INTRUSIVE CURIOSITY ON THE PART 1891 01:13:42,720 --> 01:13:44,520 OF HEALTHCARE PROVIDERS WHERE 1892 01:13:44,520 --> 01:13:45,720 THEY'RE ASKING THINGS THEY MIGHT 1893 01:13:45,720 --> 01:13:47,160 LOOK TO KNOW BECAUSE THEY'RE 1894 01:13:47,160 --> 01:13:48,120 CURIOUS RATHER THAN THINGS THAT 1895 01:13:48,120 --> 01:13:51,200 HE ACTUALLY NEED TO KNOW. 1896 01:13:51,200 --> 01:13:53,800 AND INSTITUTIONAL ABLEISM IS 1897 01:13:53,800 --> 01:13:56,040 WHERE WE HAVE ABLEISM BAKED INTO 1898 01:13:56,040 --> 01:13:57,720 OUR ORGANIZATION POLICIES AND 1899 01:13:57,720 --> 01:13:59,840 PRACTICES AND SO WE SAW THIS 1900 01:13:59,840 --> 01:14:00,840 EVERYWHERE DURING THE LOCAL 1901 01:14:00,840 --> 01:14:03,080 CRISIS CARE POLICIES FROM 1902 01:14:03,080 --> 01:14:06,800 MEDICAL RATIONING IN COVID-19. 1903 01:14:06,800 --> 01:14:08,320 ORGAN TRANSPLANT CRITERIA IS 1904 01:14:08,320 --> 01:14:10,880 LIKE THIS AND THE PROCESS FOR 1905 01:14:10,880 --> 01:14:12,280 REQUESTING REASONABLE 1906 01:14:12,280 --> 01:14:14,880 ACCOMMODATIONS TYPICALLY 1907 01:14:14,880 --> 01:14:15,720 CONVOLUTED AND DIFFICULT. 1908 01:14:15,720 --> 01:14:20,360 NOW WE'RE GOING ON TO THE ON IC. 1909 01:14:20,360 --> 01:14:22,280 THIS IS ACROSS INSTITUTIONS 1910 01:14:22,280 --> 01:14:23,520 BAKED INTO OUR LAWS AND OUR 1911 01:14:23,520 --> 01:14:25,920 POLICIES AND THIS CREATES THESE 1912 01:14:25,920 --> 01:14:27,040 DISPARITIES AND OUTCOMES THAT WE 1913 01:14:27,040 --> 01:14:28,320 SEE ACROSS THE LITERATURE FOR 1914 01:14:28,320 --> 01:14:29,880 PEOPLE WITH DISABILITIES AND 1915 01:14:29,880 --> 01:14:31,640 THOSE STATE STANDARDS FOR 1916 01:14:31,640 --> 01:14:32,280 MEDICAL RATIONING. 1917 01:14:32,280 --> 01:14:34,680 AND OVER ALL LACK OF TRAINING 1918 01:14:34,680 --> 01:14:37,080 AMONG HEALTHCARE PROVIDERS. 1919 01:14:37,080 --> 01:14:38,080 DISCRIMINATORY OF PAY LAWS, 1920 01:14:38,080 --> 01:14:39,680 MARRIAGE LAWS, THAT DISCRIMINATE 1921 01:14:39,680 --> 01:14:40,760 AGAINST PEOPLE WITH 1922 01:14:40,760 --> 01:14:41,520 DISABILITIES. 1923 01:14:41,520 --> 01:14:43,080 LACK OF AFFORDABLE AND 1924 01:14:43,080 --> 01:14:44,280 ACCESSIBLE HOUSING. 1925 01:14:44,280 --> 01:14:47,040 AND FINALLY WE HAVE SYSTEMIC 1926 01:14:47,040 --> 01:14:47,280 ABLEISM. 1927 01:14:47,280 --> 01:14:50,880 WHICH EMPHASIZES ENTIRE SYSTEMS. 1928 01:14:50,880 --> 01:14:53,720 SO POLITICAL, LEGAL, 1929 01:14:53,720 --> 01:14:54,400 CRIMINAL-JUSTICE SYSTEM, 1930 01:14:54,400 --> 01:14:57,200 INCLUDING THE STRUCTURES THAT 1931 01:14:57,200 --> 01:14:58,560 UPHOLD THESE SYSTEMS. 1932 01:14:58,560 --> 01:15:04,360 THIS IS SERVICE I H DEEPLY EMBER 1933 01:15:04,360 --> 01:15:05,560 LIVES. 1934 01:15:05,560 --> 01:15:06,360 IT'S EVERYWHERE. 1935 01:15:06,360 --> 01:15:07,240 ESTABLISHED BELIEFS AND STUDENTS 1936 01:15:07,240 --> 01:15:12,560 THAT PRODUCE CONDO AND CONDONE D 1937 01:15:12,560 --> 01:15:13,040 UNFAIR TREATMENT. 1938 01:15:13,040 --> 01:15:15,760 THIS IS ON GOING AND HISTORICAL 1939 01:15:15,760 --> 01:15:19,040 INJUSTICES THAT HAVE OCCURRED 1940 01:15:19,040 --> 01:15:21,920 OVER TIME DISABLED POVERTY, 1941 01:15:21,920 --> 01:15:25,080 MORTALITY RATE AND MEDICAL 1942 01:15:25,080 --> 01:15:27,680 SYSTEM THAT ARE INTENDED TO MAKE 1943 01:15:27,680 --> 01:15:27,960 PROCESS. 1944 01:15:27,960 --> 01:15:29,040 I KNOW I'M AT TIME. 1945 01:15:29,040 --> 01:15:30,920 I HAVE A COUPLE OF REFERENCE 1946 01:15:30,920 --> 01:15:32,400 SLIDES AND SEE IF WE HAVE ANY 1947 01:15:32,400 --> 01:15:40,040 TIME FOR COMMENTS OR QUESTIONS. 1948 01:15:40,040 --> 01:15:44,840 >>THANK YOU SO MUCH. 1949 01:15:44,840 --> 01:15:45,640 THAT WAS AN AMAZING TALK. 1950 01:15:45,640 --> 01:15:48,040 YOU COVERED A LOT OF TERRITORY. 1951 01:15:48,040 --> 01:15:49,760 I DO WANT TO LET PEOPLE KNOW 1952 01:15:49,760 --> 01:15:51,480 THERE'S BEEN A FEW QUESTIONS 1953 01:15:51,480 --> 01:15:53,480 ABOUT THIS. 1954 01:15:53,480 --> 01:15:55,840 YES, THESE SLIDES WILL BE MADE 1955 01:15:55,840 --> 01:15:58,760 AVAILABLE TO EVERYONE AFTER THE 1956 01:15:58,760 --> 01:15:59,360 WORKSHOP. 1957 01:15:59,360 --> 01:16:00,480 AND BECAUSE MANY PEOPLE HAVE 1958 01:16:00,480 --> 01:16:01,880 BEEN SAYING THAT THEY THINK THIS 1959 01:16:01,880 --> 01:16:03,760 WOULD BE A REALLY TERRIFIC 1960 01:16:03,760 --> 01:16:04,840 RESOURCE FOR THEM TO USE AND 1961 01:16:04,840 --> 01:16:06,800 SOME OF THEIR CLASSES. 1962 01:16:06,800 --> 01:16:11,120 AND I'M GOING TO TRY AND BIN UP 1963 01:16:11,120 --> 01:16:16,040 A NUMBER OF DIFFERENT QUESTIONS 1964 01:16:16,040 --> 01:16:23,840 INTO ONE. 1965 01:16:23,840 --> 01:16:25,280 YOU'VE COMPLAINED A COMMUNITY OF 1966 01:16:25,280 --> 01:16:28,840 PEOPLE WITH A DIS ABILITY IS SO 1967 01:16:28,840 --> 01:16:30,120 VARIED. 1968 01:16:30,120 --> 01:16:31,480 AS MANY PEOPLE WITHOUT 1969 01:16:31,480 --> 01:16:32,240 DISABILITIES. 1970 01:16:32,240 --> 01:16:35,680 AND THAT VERY OFTEN, THERE'S AN 1971 01:16:35,680 --> 01:16:37,200 ATTEMPT TO KIND OF FLATTEN THEM 1972 01:16:37,200 --> 01:16:40,960 TO SIMPLIFY THEM AND MAKE THEM 1973 01:16:40,960 --> 01:16:46,040 ALL ABOUT JUST ONE THING AND SO 1974 01:16:46,040 --> 01:16:47,480 I WAS WONDERING IF YOU WOULD 1975 01:16:47,480 --> 01:16:50,040 HAVE JUST ANY ONE -- NOW I'M 1976 01:16:50,040 --> 01:16:53,240 SAYING JUST ANY ONE -- ANY TAKE 1977 01:16:53,240 --> 01:16:54,720 HOME MESSAGE FOR PEOPLE IF 1978 01:16:54,720 --> 01:16:56,360 THERE'S ONE THING THAT WE ALL 1979 01:16:56,360 --> 01:16:58,320 NEED TO KEEP IN MIND, SO THAT WE 1980 01:16:58,320 --> 01:17:00,560 CAN TRY AND AVOID BEING GUILTY 1981 01:17:00,560 --> 01:17:05,280 OF THAT FLATTENING, OF A COMPLEX 1982 01:17:05,280 --> 01:17:07,080 INDIVIDUAL INTO ONE 1983 01:17:07,080 --> 01:17:10,920 CHARACTERISTICS, WHAT WOULD THAT 1984 01:17:10,920 --> 01:17:12,840 BE? 1985 01:17:12,840 --> 01:17:15,320 THAT'S A GREAT QUESTION. 1986 01:17:15,320 --> 01:17:16,800 AND I THINK YOU KNOW, SOMETIMES 1987 01:17:16,800 --> 01:17:18,400 WHEN I PRESENT, I TELL PEOPLE 1988 01:17:18,400 --> 01:17:19,920 YOU KNOW, IF THERE'S ONE THING 1989 01:17:19,920 --> 01:17:24,880 THAT YOU WERE TO TAKEAWAY TODAY, 1990 01:17:24,880 --> 01:17:26,600 IS PLEASE RECOGNIZE THE WAYS 1991 01:17:26,600 --> 01:17:29,680 THAT ABLEISM IS EMBEDDED ACROSS 1992 01:17:29,680 --> 01:17:31,280 THE SYSTEMS AND INSTITUTIONS 1993 01:17:31,280 --> 01:17:33,640 BECAUSE WE MAKE THE MISTAKE, I 1994 01:17:33,640 --> 01:17:36,480 BELIEVE, WE OVER FOCUS ON THE 1995 01:17:36,480 --> 01:17:37,560 INDIVIDUAL PERSON AND 1996 01:17:37,560 --> 01:17:39,320 PSYCHOLOGY, I'M A PSYCHOLOGIST 1997 01:17:39,320 --> 01:17:40,720 AND THAT'S A BIG FRUSTRATION 1998 01:17:40,720 --> 01:17:42,200 THAT I HAVE WITH MY OWN FIELD IS 1999 01:17:42,200 --> 01:17:44,080 WE TEND TO FOCUS ON THE 2000 01:17:44,080 --> 01:17:45,760 PERSONALITIES AND THEIR COPING 2001 01:17:45,760 --> 01:17:46,800 SKILLS AND DIFFERENT THINGS AND 2002 01:17:46,800 --> 01:17:49,200 WE DON'T DO AS GOOD A JOB AS 2003 01:17:49,200 --> 01:17:51,120 FOCUSES ON WHAT'S THE FAMILY 2004 01:17:51,120 --> 01:17:53,560 DYNAMICS AND WHAT'S THE LIVING 2005 01:17:53,560 --> 01:17:53,840 SITUATION. 2006 01:17:53,840 --> 01:17:54,440 WHETHER OR NOT ARE THE ATTITUDES 2007 01:17:54,440 --> 01:17:55,720 AROUND THIS PERSON. 2008 01:17:55,720 --> 01:17:57,640 WHAT KIND OF NOT ABLEISM ARE 2009 01:17:57,640 --> 01:17:59,640 THEY EXPERIENCING? 2010 01:17:59,640 --> 01:18:03,280 SO, THAT'S MY KIND OF UNDERLYING 2011 01:18:03,280 --> 01:18:03,880 MESSAGES. 2012 01:18:03,880 --> 01:18:05,960 WHEN WE SEE PROBLEMS, DON'T BE 2013 01:18:05,960 --> 01:18:08,640 SO QUICK TO ATTRIBUTE IT TO THE 2014 01:18:08,640 --> 01:18:08,920 INDIVIDUAL. 2015 01:18:08,920 --> 01:18:12,320 LOOK AT THE ENVIRONMENT. 2016 01:18:12,320 --> 01:18:14,040 >>THANK YOU. 2017 01:18:14,040 --> 01:18:15,400 AND IN THE INTEREST OF TIME, I'M 2018 01:18:15,400 --> 01:18:18,680 GOING TO MOVE ON TO OUR NEXT 2019 01:18:18,680 --> 01:18:20,840 SPEAKER, BUT REALLY LOOKING 2020 01:18:20,840 --> 01:18:22,120 FORWARD TO HEARING YOUR INSIGHTS 2021 01:18:22,120 --> 01:18:25,360 OVER THE NEXT COUPLE OF DAYS AS 2022 01:18:25,360 --> 01:18:28,320 WELL. 2023 01:18:28,320 --> 01:18:29,400 >>THANK YOU. 2024 01:18:29,400 --> 01:18:32,920 >>OUR NEXT SPEAKER FOR TODAY IS 2025 01:18:32,920 --> 01:18:34,360 Dr. MEGAN MORRIS. 2026 01:18:34,360 --> 01:18:36,280 Dr. MORRIS IS AN ASSOCIATE 2027 01:18:36,280 --> 01:18:39,200 PROFESSOR IN THE DIVISION OF 2028 01:18:39,200 --> 01:18:40,360 GENERAL INTERNAL MEDICINE AT 2029 01:18:40,360 --> 01:18:42,920 UNIVERSITY OF COLORADO MEDICAL 2030 01:18:42,920 --> 01:18:43,720 CAMPUS. 2031 01:18:43,720 --> 01:18:45,480 SHE'S THE FOUNDER AND DIRECTOR 2032 01:18:45,480 --> 01:18:48,000 OF THE DISABILITY EQUITY 2033 01:18:48,000 --> 01:18:49,920 COLLABORATIVE AND HER RESEARCH 2034 01:18:49,920 --> 01:18:52,760 AIMS TO IDENTIFY AS WELL AS 2035 01:18:52,760 --> 01:18:54,800 ADDRESS THE MULTI-LEVEL 2036 01:18:54,800 --> 01:18:55,800 CONDITIONS THAT CONTRIBUTE TO 2037 01:18:55,800 --> 01:18:58,320 THE PROVISION OF EQUITABLE CARE 2038 01:18:58,320 --> 01:19:00,080 FOR PEOPLE WITH DISABILITIES. 2039 01:19:00,080 --> 01:19:03,240 AND SO THE TITLE OF HER TALK IS 2040 01:19:03,240 --> 01:19:05,240 "NAMING ABLEISM IN HEALTHCARE." 2041 01:19:05,240 --> 01:19:10,160 Dr. MORRIS -- 2042 01:19:10,160 --> 01:19:14,920 >> 2043 01:19:14,920 --> 01:19:16,480 >>GOOD MORNING. 2044 01:19:16,480 --> 01:19:20,720 THANK YOU FOR HAVING ME. 2045 01:19:20,720 --> 01:19:23,560 SO, THIS MORNING OR AFTERNOON, 2046 01:19:23,560 --> 01:19:25,760 WHERE EVER YOU ARE, I WOULD LIKE 2047 01:19:25,760 --> 01:19:27,600 TO START WITH A STORY. 2048 01:19:27,600 --> 01:19:29,520 WITH A CASE. 2049 01:19:29,520 --> 01:19:32,600 AND THIS IS MY FAMILY'S STORY. 2050 01:19:32,600 --> 01:19:36,360 THIS IS A PICTURE OF MY UNCLE 2051 01:19:36,360 --> 01:19:39,760 DAVID, WITH HIS PARENTS, MY 2052 01:19:39,760 --> 01:19:41,360 GRANDPARENTS AT DAVID'S 2053 01:19:41,360 --> 01:19:42,720 GRADUATION, HIGH SCHOOL 2054 01:19:42,720 --> 01:19:43,160 GRADUATION. 2055 01:19:43,160 --> 01:19:45,280 DAVID WOW BORN WITH A 2056 01:19:45,280 --> 01:19:46,600 DEVELOPMENTAL DISABILITY 2057 01:19:46,600 --> 01:19:48,040 INCLUDING INTRACTABLE SEIZURES. 2058 01:19:48,040 --> 01:19:49,720 DAVID WAS AN INCREDIBLY SOCIAL 2059 01:19:49,720 --> 01:19:51,080 GUY. 2060 01:19:51,080 --> 01:19:52,000 HE LOVED WALKING THE 2061 01:19:52,000 --> 01:19:54,440 NEIGHBORHOOD, CATCHING UP ON ALL 2062 01:19:54,440 --> 01:19:57,680 THE GOSSIP. 2063 01:19:57,680 --> 01:19:59,800 HE ENJOYED PLAYING GUARD GAMES 2064 01:19:59,800 --> 01:20:03,200 AND WATCHING RERUNS OF 1960s 2065 01:20:03,200 --> 01:20:03,440 SITCOMS. 2066 01:20:03,440 --> 01:20:05,800 AS DAVID GOT OLDER, HIS SEES 2067 01:20:05,800 --> 01:20:11,400 YOU'RSEIZURES INCREASED AND AS L 2068 01:20:11,400 --> 01:20:12,320 AS ILLNESSES. 2069 01:20:12,320 --> 01:20:15,720 ON DECEMBER 23rd OF 2016 HE 2070 01:20:15,720 --> 01:20:17,120 WAS ADMITTED TO THE LOCAL 2071 01:20:17,120 --> 01:20:19,600 HOSPITAL WITH ASPIRATION 2072 01:20:19,600 --> 01:20:20,680 PNEUMONIA WHICH LIKELY WAS A 2073 01:20:20,680 --> 01:20:22,880 RESULT OF A RECENT ASPIRATION 2074 01:20:22,880 --> 01:20:24,960 DURING A SEIZURE. 2075 01:20:24,960 --> 01:20:28,320 SO IN ADDITION TO HIS PNEUMONIA 2076 01:20:28,320 --> 01:20:30,120 EFFECT WEAK AND HAD SIGNIFICANT 2077 01:20:30,120 --> 01:20:32,080 DIFFICULTIES SWALLOWING. 2078 01:20:32,080 --> 01:20:36,400 THE MEDICAL TEAM TREATED DAVID'S 2079 01:20:36,400 --> 01:20:38,600 PNEUMONIA AND AFTER FOUR DAYS, 2080 01:20:38,600 --> 01:20:41,200 HE NO LONGER REQUIRED TREATMENT 2081 01:20:41,200 --> 01:20:43,240 FOR HIS PNEUMONIA. 2082 01:20:43,240 --> 01:20:44,960 AND WHILE HIS SWALLOWING 2083 01:20:44,960 --> 01:20:49,000 ABILITIES FIRE DEPARTMENT TO TOD 2084 01:20:49,000 --> 01:20:50,680 DIFFICULT SWALLOWING AND WAS 2085 01:20:50,680 --> 01:20:53,880 UNABLE TO SAFELY EAT OR DRINK BY 2086 01:20:53,880 --> 01:20:54,320 MOUTH. 2087 01:20:54,320 --> 01:20:56,440 THE TEAM WANTED TO DISCHARGE HIM 2088 01:20:56,440 --> 01:20:57,360 BACK TO WHERE HE WAS LIVING, 2089 01:20:57,360 --> 01:20:59,320 WHICH WAS A NURSING HOME, BUT 2090 01:20:59,320 --> 01:21:01,000 WASN'T SURE WHAT TO DO ABOUT 2091 01:21:01,000 --> 01:21:01,800 EATING AND DRINKING. 2092 01:21:01,800 --> 01:21:04,480 SO THEY TURNED TO US, HIS 2093 01:21:04,480 --> 01:21:07,200 FAMILY, PRIMARILY MY DAD AND I, 2094 01:21:07,200 --> 01:21:09,600 AND ASKED HOW WE WOULD LIKE TO 2095 01:21:09,600 --> 01:21:10,280 PROCEED. 2096 01:21:10,280 --> 01:21:13,320 AND MY DAD AND I DISCUSSED IT 2097 01:21:13,320 --> 01:21:15,320 AND WE THOUGHT A TUBE TO HIS 2098 01:21:15,320 --> 01:21:17,320 STOMACH WOULD BE TOO INVASIVE 2099 01:21:17,320 --> 01:21:21,200 AND NOT THE RIGHT DECISION FOR 2100 01:21:21,200 --> 01:21:22,360 DAVID. 2101 01:21:22,360 --> 01:21:26,200 DAVID HAD HAD PREVIOUSLY HAD AN 2102 01:21:26,200 --> 01:21:27,320 NG TUBE SO A FEEDING TUBE THAT 2103 01:21:27,320 --> 01:21:28,840 WENT FROM HIS NOSE AND STOMACH 2104 01:21:28,840 --> 01:21:30,800 AND HE TOLERATE THIS REALLY 2105 01:21:30,800 --> 01:21:31,000 WELL. 2106 01:21:31,000 --> 01:21:32,840 WE APPROACHED THE MEDICAL TEAM 2107 01:21:32,840 --> 01:21:34,640 AND SAID, WELL CAN WE DO A TRIAL 2108 01:21:34,640 --> 01:21:37,720 OF AN NG TUBE BECAUSE WE HOPED 2109 01:21:37,720 --> 01:21:40,080 THAT PERHAPS WITH A FEW MORE 2110 01:21:40,080 --> 01:21:42,320 DAYS THAT DAVID WOULD CONTINUE 2111 01:21:42,320 --> 01:21:45,200 TO IMPROVE WITH HIS STRENGTH AND 2112 01:21:45,200 --> 01:21:48,600 HIS SWALLOWING ABILITIES AND 2113 01:21:48,600 --> 01:21:49,680 TRANSITION INTO EATING AND 2114 01:21:49,680 --> 01:21:51,800 DRINKING INDEPENDENTLY. 2115 01:21:51,800 --> 01:21:53,640 AND THE TEAM PUSHED BACK ON US 2116 01:21:53,640 --> 01:21:56,880 AND THEY SAID, AN NG TUBE IS 2117 01:21:56,880 --> 01:21:58,680 REALLY UNCOMFORTABLE AND WE JUST 2118 01:21:58,680 --> 01:22:02,280 WON WANT TO PUT DAVID IN ANYMORE 2119 01:22:02,280 --> 01:22:02,960 DISCOMFORT. 2120 01:22:02,960 --> 01:22:05,320 AND WE PUSHED BACK AT THEM AND 2121 01:22:05,320 --> 01:22:07,680 SAID, WELL, DAVID HISTORICALLY 2122 01:22:07,680 --> 01:22:11,200 HAS HAD A REALLY HIGH PAIN 2123 01:22:11,200 --> 01:22:12,360 TOLERANCE. 2124 01:22:12,360 --> 01:22:15,680 AGAIN, HE HAS TOLERATE AN NG 2125 01:22:15,680 --> 01:22:20,200 TUBE BEFORE, REALLY WELL, AND 2126 01:22:20,200 --> 01:22:21,320 AGAIN, RECOVERED AFTER AN 2127 01:22:21,320 --> 01:22:24,160 ILLNESS WHERE HE REQUIRED THE NG 2128 01:22:24,160 --> 01:22:24,360 TUBE. 2129 01:22:24,360 --> 01:22:26,120 AND SO WE WEPT BACK AND FOURTH 2130 01:22:26,120 --> 01:22:27,840 AND WE THOUGHT WE REACHED A 2131 01:22:27,840 --> 01:22:29,480 CONCLUSION AND WE WENT HOME FOR 2132 01:22:29,480 --> 01:22:30,280 THE EVENING. 2133 01:22:30,280 --> 01:22:32,320 THE NEXT MORNING, AS WE WERE 2134 01:22:32,320 --> 01:22:34,000 PREPARING TO GO INTO SEE DAVID, 2135 01:22:34,000 --> 01:22:36,400 AT THE HOSPITAL, WE RECEIVED A 2136 01:22:36,400 --> 01:22:39,200 CALL THAT DAVID WAS DISCHARGED 2137 01:22:39,200 --> 01:22:40,680 HOME TO THE NURSING HOME. 2138 01:22:40,680 --> 01:22:42,480 WHICH THE NURSING HOME BY THE 2139 01:22:42,480 --> 01:22:45,640 WAY, SAID THEY WERE PERFECTLY 2140 01:22:45,640 --> 01:22:48,520 FINE WITH TAKING HIM WITH AN NG 2141 01:22:48,520 --> 01:22:51,520 TUBE AND MANAGING HIS NG TUBE 2142 01:22:51,520 --> 01:22:53,720 BUT HE WAS DISCHARGED WITHOUT AN 2143 01:22:53,720 --> 01:22:56,840 NG TUBE AND PUT ON A FULL DIET 2144 01:22:56,840 --> 01:22:58,040 WHICH MEANT THAT THEY WERE 2145 01:22:58,040 --> 01:23:01,040 FEEDING HIM AND GIVING HIM 2146 01:23:01,040 --> 01:23:02,040 LIQUID TO DRINK. 2147 01:23:02,040 --> 01:23:05,920 AS EXPECTED, WITHIN 24 HOURS, 2148 01:23:05,920 --> 01:23:08,360 DAVID HAD PNEUMONIA AGAIN. 2149 01:23:08,360 --> 01:23:12,200 AND THIS TIME, THE TEAM PRESSED 2150 01:23:12,200 --> 01:23:13,440 US FOR HOSPICE. 2151 01:23:13,440 --> 01:23:16,840 AND AFTER SOME DISCUSSION WE 2152 01:23:16,840 --> 01:23:19,800 DECIDED TO PROCEED WITH HOSPICE. 2153 01:23:19,800 --> 01:23:22,720 AFTER A FEW DAYS, I SAT WITH 2154 01:23:22,720 --> 01:23:27,200 DAVID FOR THE VERY LAST TIME 2155 01:23:27,200 --> 01:23:29,560 PROVIDE ORAL CARE AND SAYING 2156 01:23:29,560 --> 01:23:30,840 GOOD-BYE AND HE PASSED AWAY. 2157 01:23:30,840 --> 01:23:32,680 MY FAMILY AND I REALLY STRUGGLED 2158 01:23:32,680 --> 01:23:36,080 WITH WHAT HAD HAPPENED WITH 2159 01:23:36,080 --> 01:23:36,920 DAVID. 2160 01:23:36,920 --> 01:23:38,680 WE WERE HISS ADVOCATES AND WE 2161 01:23:38,680 --> 01:23:41,760 FELT LIKE PERHAPS WE HAD FAILED 2162 01:23:41,760 --> 01:23:43,600 HIM, BUT ALSO WE FELT LIKE THE 2163 01:23:43,600 --> 01:23:45,560 MEDICAL TEAM AND THE MEDICAL 2164 01:23:45,560 --> 01:23:46,800 SYSTEM HAD FAILED HIM. 2165 01:23:46,800 --> 01:23:48,760 AND THIS WAS NOT THE FIRST TIME. 2166 01:23:48,760 --> 01:23:51,360 THROUGHOUT DAVID'S ENTIRE LIFE, 2167 01:23:51,360 --> 01:23:55,160 HE HAD BEEN UNDER ESTIMATED, 2168 01:23:55,160 --> 01:23:57,960 AGAIN, IN SOCIETY, BUT ALSO 2169 01:23:57,960 --> 01:24:00,200 WITHIN THE MEDICAL FIELD. 2170 01:24:00,200 --> 01:24:03,280 HE WAS ALWAYS UNDERESTIMATED AND 2171 01:24:03,280 --> 01:24:07,200 ASSUMED HE WASN'T ABLE TO DO 2172 01:24:07,200 --> 01:24:09,160 THINGS AND THERE WAS ALWAYS 2173 01:24:09,160 --> 01:24:11,960 COMMENTS OF HOW WE SHOULD 2174 01:24:11,960 --> 01:24:12,680 PERHAPS DISCONTINUE CARE. 2175 01:24:12,680 --> 01:24:13,680 THIS WAS NOT THE FIRST TIME HE 2176 01:24:13,680 --> 01:24:19,000 HAD BEEN ON HOSPICE. 2177 01:24:19,000 --> 01:24:20,880 WHERE DID THESE ASSUMPTIONS AND 2178 01:24:20,880 --> 01:24:22,960 ATTITUDES COME FROM? 2179 01:24:22,960 --> 01:24:26,160 WHY DID DAVID EXPERIENCE THIS? 2180 01:24:26,160 --> 01:24:27,800 AND I BELIEVE THAT IT'S DUE TO 2181 01:24:27,800 --> 01:24:29,160 ABLEISM WHICH IS WHY WE'RE ALL 2182 01:24:29,160 --> 01:24:30,480 HERE TODAY. 2183 01:24:30,480 --> 01:24:34,480 AND I ALSO SHARE MY STORY WITH 2184 01:24:34,480 --> 01:24:35,960 YOU TODAY TO HIGHLIGHT THAT THIS 2185 01:24:35,960 --> 01:24:39,360 IS NOT A UNIQUE SITUATION. 2186 01:24:39,360 --> 01:24:43,520 I HAVE THE PRIVILEGE OF WRITING 2187 01:24:43,520 --> 01:24:46,080 DAVID'S STORY UP AND HAVING IT 2188 01:24:46,080 --> 01:24:47,640 PUBLISHED IN THE NEW ENGLAND 2189 01:24:47,640 --> 01:24:49,920 JOURNAL OF MEDICINE AND WITHIN 2190 01:24:49,920 --> 01:24:51,920 WEEKS AND MONTHS OF PUBLISHING 2191 01:24:51,920 --> 01:24:55,520 THIS PAPER, I RECEIVED HUNDREDS 2192 01:24:55,520 --> 01:24:59,160 OF E-MAILS FROM PEOPLE STATING 2193 01:24:59,160 --> 01:25:01,320 SIMILAR EXPERIENCES AS MY FAMILY 2194 01:25:01,320 --> 01:25:03,560 AND AS DAVID'S SO AGAIN, THIS IS 2195 01:25:03,560 --> 01:25:05,160 NOT A UNIQUE. 2196 01:25:05,160 --> 01:25:07,840 WE HAVE A WIDE BODY OF 2197 01:25:07,840 --> 01:25:08,760 LITERATURE DEMONSTRATING THE 2198 01:25:08,760 --> 01:25:10,160 DISPARITIES AND HEALTHCARE 2199 01:25:10,160 --> 01:25:11,120 OUTCOMES, EXPERIENCED BY PEOPLE 2200 01:25:11,120 --> 01:25:13,760 WITH DISABILITIES. 2201 01:25:13,760 --> 01:25:17,280 SO, AGAIN, IT'S BEEN NAMED AND 2202 01:25:17,280 --> 01:25:19,080 DESCRIBED HERE BUT AGAIN, JUST 2203 01:25:19,080 --> 01:25:20,640 WANT TO HIGHLIGHT ABLEISM, A 2204 01:25:20,640 --> 01:25:23,200 COMPLEX SYSTEM OF BELIEFS, 2205 01:25:23,200 --> 01:25:25,280 ATTITUDES, BEHAVIORS AND 2206 01:25:25,280 --> 01:25:29,040 POLICIES THAT EXCLUDE, DEN GREAT 2207 01:25:29,040 --> 01:25:31,520 AND HARM PEOPLE WITH 2208 01:25:31,520 --> 01:25:31,840 DISABILITIES. 2209 01:25:31,840 --> 01:25:34,240 AS Dr. ANDREWS MENTIONED, I 2210 01:25:34,240 --> 01:25:37,000 ALSO WANT TO HIGHLIGHT 2211 01:25:37,000 --> 01:25:39,480 INTERPERSONAL ABLEISM. 2212 01:25:39,480 --> 01:25:40,120 ARE INDIVIDUAL LEVEL ATTITUDES 2213 01:25:40,120 --> 01:25:43,200 AND BEHAVIOR THAT CREATE AND 2214 01:25:43,200 --> 01:25:45,160 PERPETUATE ABLEISM AND SECONDLY, 2215 01:25:45,160 --> 01:25:47,400 STRUCTURAL ABLEISM. 2216 01:25:47,400 --> 01:25:49,760 FOR THE LOSS POLICIES 2217 01:25:49,760 --> 01:25:51,600 INSTITUTIONAL PRACTICE AND 2218 01:25:51,600 --> 01:25:53,600 ENTRENCHED FORMS THAT CREATE AND 2219 01:25:53,600 --> 01:25:54,680 PERPETUATE ABLEISM AND I WOULD 2220 01:25:54,680 --> 01:25:57,720 LIKE TO PROPOSE THAT BOTH 2221 01:25:57,720 --> 01:25:59,040 INTERPERSONAL AND STRUCTURAL 2222 01:25:59,040 --> 01:26:00,560 ABLEISM IS RAMPANT AND HEALTH 2223 01:26:00,560 --> 01:26:03,240 YEAR AND CAN HAVE DEVASTATING 2224 01:26:03,240 --> 01:26:04,680 EFFECTS ON THE LIVES OF 2225 01:26:04,680 --> 01:26:11,240 INDIVIDUALS WITH DISABILITIES. 2226 01:26:11,240 --> 01:26:13,320 SO, INTERPERSONAL ABLEISM. 2227 01:26:13,320 --> 01:26:16,760 THERE'S A WIDE BODY OF 2228 01:26:16,760 --> 01:26:18,040 LITERATURE MAINLY QUALITATIVE 2229 01:26:18,040 --> 01:26:19,200 ACTIVITIES WITH PEOPLE WITH ALL 2230 01:26:19,200 --> 01:26:21,160 TYPES OF DISABILITIES THAT 2231 01:26:21,160 --> 01:26:23,200 DESCRIBES PEOPLE WITH 2232 01:26:23,200 --> 01:26:24,800 DISABILITIES REPORTING 2233 01:26:24,800 --> 01:26:26,760 EXPERIENCES WITH A WIDE RANGE OF 2234 01:26:26,760 --> 01:26:28,080 ABLEIST ATTITUDES AND BEHAVIORS 2235 01:26:28,080 --> 01:26:29,480 DURING THEIR INTERACTIONS WITH 2236 01:26:29,480 --> 01:26:33,280 THE HEALTHCARE TEAM. 2237 01:26:33,280 --> 01:26:35,200 THIS INCLUDES NEGATIVE AND 2238 01:26:35,200 --> 01:26:36,600 INAPPROPRIATE ASSUMPTIONS 2239 01:26:36,600 --> 01:26:37,960 ACCUSING BABY TALK WITH 2240 01:26:37,960 --> 01:26:42,160 DISABILITIESDISABILITY ADULTS WH 2241 01:26:42,160 --> 01:26:43,960 DISABILITIES AND HOW TO INTERACT 2242 01:26:43,960 --> 01:26:45,560 WITH PATIENTS WITH DISABILITIES. 2243 01:26:45,560 --> 01:26:47,440 ALSO TEAM MEMBERS ACTING FEARFUL 2244 01:26:47,440 --> 01:26:52,240 OR CONFUSED. 2245 01:26:52,240 --> 01:26:53,120 PATIENTS REPORT FEELING 2246 01:26:53,120 --> 01:26:55,320 DISREGARDED AND EXCLUDED FROM 2247 01:26:55,320 --> 01:26:56,080 CONVERSATIONS AND DECISION S 2248 01:26:56,080 --> 01:26:59,200 WITH THEIR CARE. 2249 01:26:59,200 --> 01:27:00,720 >>MEGAN, ARE YOU ADVANCING THE 2250 01:27:00,720 --> 01:27:02,920 SLIDES OR ARE WE? 2251 01:27:02,920 --> 01:27:05,720 WE ARE A COUPLE SLIDES BEHIND 2252 01:27:05,720 --> 01:27:06,040 YOU. 2253 01:27:06,040 --> 01:27:08,200 I AM ADVANCING THE SLIDES, I'M 2254 01:27:08,200 --> 01:27:08,720 SORRY. 2255 01:27:08,720 --> 01:27:11,440 YOU WANT TO BE ON SLIDE FIVE, 2256 01:27:11,440 --> 01:27:12,000 RIGHT? 2257 01:27:12,000 --> 01:27:13,360 I'M NOT SEEING THAT. 2258 01:27:13,360 --> 01:27:13,800 >>ALL RIGHT. 2259 01:27:13,800 --> 01:27:15,600 >>MEGAN, WE ARE ADVANCING YOUR 2260 01:27:15,600 --> 01:27:17,200 SLIDES FOR YOU SO JUST TELL US 2261 01:27:17,200 --> 01:27:25,040 NEXT SLIDE WHEN YOU ARE READY. 2262 01:27:25,040 --> 01:27:35,280 >>NEXT SLIDE. 2263 01:27:38,040 --> 01:27:40,280 THIS LITERATURE HAS BEEN 2264 01:27:40,280 --> 01:27:41,000 DISCUSSED PREVIOUSLY BUT I WANT 2265 01:27:41,000 --> 01:27:43,280 TO HIGHLIGHT IT AGAIN. 2266 01:27:43,280 --> 01:27:44,960 SO THE EXPERIENCES THAT AGAIN 2267 01:27:44,960 --> 01:27:49,200 ARE REPORTED IN THE QUALITATIVE 2268 01:27:49,200 --> 01:27:50,200 INTERVIEWS ARE NOT SURPRISING 2269 01:27:50,200 --> 01:27:52,240 GIVEN THE SURVEY SURPRISES WE 2270 01:27:52,240 --> 01:27:55,800 SEE OF HEALTHCARE PROFESSIONALS. 2271 01:27:55,800 --> 01:27:58,400 A STUDY THAT ANALYZED THE 2272 01:27:58,400 --> 01:28:01,040 RESULTS OF OVER 25,000 2273 01:28:01,040 --> 01:28:02,040 HEALTHCARE PROFESSIONALS LOOKING 2274 01:28:02,040 --> 01:28:04,280 AT THEIR DISABILITY IMPLICIT 2275 01:28:04,280 --> 01:28:08,120 ASSOCIATION TEST FOUND THAT 82% 2276 01:28:08,120 --> 01:28:09,720 HAD A PREFFENS FOR ABLE BODIED 2277 01:28:09,720 --> 01:28:13,240 INDIVIDUALS OVER INDIVIDUALS 2278 01:28:13,240 --> 01:28:19,760 WITH DISABILITIES. 2279 01:28:19,760 --> 01:28:24,680 ALSO, THE WORK OF Dr. IEZONNI 2280 01:28:24,680 --> 01:28:26,360 AND COLLEAGUES, THERE WAS A 2281 01:28:26,360 --> 01:28:28,800 STUDY AND ONLY 57% REPORTED 2282 01:28:28,800 --> 01:28:30,720 STRONGLY WELCOMING PEOPLE WITH 2283 01:28:30,720 --> 01:28:31,520 DISABILITIES INTO THEIR 2284 01:28:31,520 --> 01:28:32,960 PRACTICE. 2285 01:28:32,960 --> 01:28:34,680 ONLY 41% SUPPORTED FEELING VERY 2286 01:28:34,680 --> 01:28:35,880 CONFIDENT ABOUT PROVIDING THE 2287 01:28:35,880 --> 01:28:39,320 SAME QUALITY OF CARE AND THEN 2288 01:28:39,320 --> 01:28:42,520 FINALLY, 82% RATED THE QUALITY 2289 01:28:42,520 --> 01:28:44,360 OF LIFE WORSE FOR PEOPLE WITH 2290 01:28:44,360 --> 01:28:46,600 SIGNIFICANT DISABILITIES AS 2291 01:28:46,600 --> 01:28:47,920 COMPARED TO THOSE WITHOUT 2292 01:28:47,920 --> 01:28:49,560 DISABILITIES AND AGAIN, AS Dr. 2293 01:28:49,560 --> 01:28:51,360 SWENOR MENTIONED IN HER KEYNOTE, 2294 01:28:51,360 --> 01:28:55,000 THIS IS REALLY IMPORTANT BECAUSE 2295 01:28:55,000 --> 01:28:56,520 MANY STUDIES HAVE FOUND THAT 2296 01:28:56,520 --> 01:28:58,680 INDIVIDUALS WITH DISABILITIES 2297 01:28:58,680 --> 01:28:59,760 ACTUALLY REPORT SIMILAR LEVELS 2298 01:28:59,760 --> 01:29:01,560 OF QUALITY OF LIFE AS PEOPLE 2299 01:29:01,560 --> 01:29:08,720 WITHOUT DISABILITIES. 2300 01:29:08,720 --> 01:29:10,520 WE CONDUCTED A STUDY HERE AT THE 2301 01:29:10,520 --> 01:29:12,160 UNIVERSITY OF COLORADO WITH 2302 01:29:12,160 --> 01:29:12,880 MEDICAL STUDENTS. 2303 01:29:12,880 --> 01:29:15,760 WE GAVE THEM A DISABILITY 2304 01:29:15,760 --> 01:29:16,880 IMPLICIT ASSOCIATION TEST AND 2305 01:29:16,880 --> 01:29:20,640 FOUND THAT 85% REPORTED A 2306 01:29:20,640 --> 01:29:22,920 PREFERENCE FOR ABLE BODY 2307 01:29:22,920 --> 01:29:23,200 INDIVIDUALS. 2308 01:29:23,200 --> 01:29:25,760 SO AGAIN, VERY SIMILAR TO OUR 2309 01:29:25,760 --> 01:29:27,920 PRACTICING HEALTHCARE 2310 01:29:27,920 --> 01:29:28,720 PROFESSIONALS. 2311 01:29:28,720 --> 01:29:29,840 ONLY FIVE PERCENT REPORTED 2312 01:29:29,840 --> 01:29:32,440 FEELING VERY COMPETENT ABOUT 2313 01:29:32,440 --> 01:29:33,840 PROVIDING THE SAME QUALITY OF 2314 01:29:33,840 --> 01:29:35,640 CARE TO PATIENTS WITH 2315 01:29:35,640 --> 01:29:36,880 DISABILITIES AS THOSE WITHOUT 2316 01:29:36,880 --> 01:29:37,440 DISABILITIES. 2317 01:29:37,440 --> 01:29:40,880 AND THEN FINALLY, 71%, A LITTLE 2318 01:29:40,880 --> 01:29:42,360 BIT BETTER THAN OUR PRACTICING 2319 01:29:42,360 --> 01:29:44,480 CLINICIANS BUT 71% STILL A HIGH 2320 01:29:44,480 --> 01:29:48,360 RATE RATED THE QUALITY OF LIFE 2321 01:29:48,360 --> 01:29:50,920 WORSE AS INDIVIDUALS WITH 2322 01:29:50,920 --> 01:29:52,160 DISABILITIES AS COMPARED IT TO 2323 01:29:52,160 --> 01:29:57,040 THOSE WITHOUT DIS ABILITIES. 2324 01:29:57,040 --> 01:29:59,200 AND I WANT TO HIGHLIGHT WHAT 2325 01:29:59,200 --> 01:30:01,280 THESE ASSUMPTIONS ABOUT THE 2326 01:30:01,280 --> 01:30:06,640 QUALITY OF LIFE CAN MEAN AT APP 2327 01:30:06,640 --> 01:30:07,040 INDIVIDUAL LEVEL. 2328 01:30:07,040 --> 01:30:09,400 I WANT TO TELL THE STORY OF 2329 01:30:09,400 --> 01:30:09,960 Mr. MICHAEL HICKSON. 2330 01:30:09,960 --> 01:30:12,760 HE WAS A MAN WHO HAD A MASSIVE 2331 01:30:12,760 --> 01:30:15,760 BRAIN INJURY AS A RESULT OF A 2332 01:30:15,760 --> 01:30:16,440 CARDIAC ARREST. 2333 01:30:16,440 --> 01:30:18,440 HE WAS LIVING IN A NURSING HOME 2334 01:30:18,440 --> 01:30:19,880 AT THE START OF THE COVID-19 2335 01:30:19,880 --> 01:30:21,520 PANDEMIC AND LIKE MANY PEOPLE 2336 01:30:21,520 --> 01:30:25,840 LIVING IN NURSING HOMES, AT THE 2337 01:30:25,840 --> 01:30:28,400 START OF THE PANDEMIC, HE COP 2338 01:30:28,400 --> 01:30:29,760 TRACTED COVID-19. 2339 01:30:29,760 --> 01:30:32,120 HE WAS ADMITTED TO THE HOSPITAL 2340 01:30:32,120 --> 01:30:39,000 IN JUNE OF 2020, DUE TO 2341 01:30:39,000 --> 01:30:41,920 COMPLICATIONS RELATED TO HIS 2342 01:30:41,920 --> 01:30:42,640 COVID-19. 2343 01:30:42,640 --> 01:30:43,960 THE MEDICAL TEAM MADE THE 2344 01:30:43,960 --> 01:30:47,040 DECISION TO NOT TREAT MICHAEL 2345 01:30:47,040 --> 01:30:49,280 HICKSON FOR HIS COVID-19 2346 01:30:49,280 --> 01:30:50,480 SYMPTOMS AS WELL AS THEY MADE 2347 01:30:50,480 --> 01:30:53,400 THE DECISION TO WITHDRAW 2348 01:30:53,400 --> 01:30:55,720 NUTRITIONAL SUPPORT WHICH HE HAD 2349 01:30:55,720 --> 01:30:59,040 PRIOR TO COMING INTO THE 2350 01:30:59,040 --> 01:31:01,120 HOSPITAL. 2351 01:31:01,120 --> 01:31:02,480 Mr. HICKSON'S WIFE PUSHED BACK 2352 01:31:02,480 --> 01:31:06,520 ON THIS AND QUESTIONED THIS 2353 01:31:06,520 --> 01:31:07,120 DECISION. 2354 01:31:07,120 --> 01:31:08,520 WHAT SHE DID WAS AUDIO RECORDED 2355 01:31:08,520 --> 01:31:10,160 HER CONVERSATION WITH THE DOCTOR 2356 01:31:10,160 --> 01:31:15,240 ABOUT WHY THEY MADE THIS 2357 01:31:15,240 --> 01:31:15,480 DECISION. 2358 01:31:15,480 --> 01:31:18,080 IN THE RECORDING, THE PHYSICIAN 2359 01:31:18,080 --> 01:31:19,480 SAYS, CAUSE OF RIGHT NOW HIS 2360 01:31:19,480 --> 01:31:21,200 QUALITY OF LIFE, HE DOESN'T HAVE 2361 01:31:21,200 --> 01:31:24,080 MUCH OF ONE. 2362 01:31:24,080 --> 01:31:26,080 AND HIS WIFE RESPONDED, WHAT DO 2363 01:31:26,080 --> 01:31:26,560 YOU MEAN? 2364 01:31:26,560 --> 01:31:28,440 BECAUSE HE IS PARALYZED WITH A 2365 01:31:28,440 --> 01:31:29,520 BRAIN INJURY HE DOESN'T HAVE A 2366 01:31:29,520 --> 01:31:30,760 QUALITY OF LIFE? 2367 01:31:30,760 --> 01:31:35,520 AND THE PHYSICIAN SAYS, CORRECT. 2368 01:31:35,520 --> 01:31:38,120 Mr. HICKSON DIED SEVERAL DAYS 2369 01:31:38,120 --> 01:31:42,640 AFTER THIS RECORDING, THAT WAS 2370 01:31:42,640 --> 01:31:43,800 DONE AND AGAIN AND I BELIEVE 2371 01:31:43,800 --> 01:31:48,680 THAT THIS RECORDING DEMONSTRATES 2372 01:31:48,680 --> 01:31:52,040 THE AND THE FACT IS ON THE 2373 01:31:52,040 --> 01:31:53,040 MEDICAL DECISIONS THAT 2374 01:31:53,040 --> 01:31:54,040 HEALTHCARE TEAMS ARE MAKING FOR 2375 01:31:54,040 --> 01:31:56,680 PEOPLE WITH DISABILITIES. 2376 01:31:56,680 --> 01:31:59,560 AND I ALSO DON'T THINK THIS IS A 2377 01:31:59,560 --> 01:32:01,040 UNIQUE STORY. 2378 01:32:01,040 --> 01:32:02,520 BUT INTERPERSONAL ABLEISM DOES 2379 01:32:02,520 --> 01:32:04,160 NOT TELL THE FULL STORY. 2380 01:32:04,160 --> 01:32:06,760 I THINK IF WE WORK ON QUOTE 2381 01:32:06,760 --> 01:32:09,120 FIXING THE ATTITUDES OF OUR 2382 01:32:09,120 --> 01:32:11,840 HEALTHCARE TEAMS THIS WOULD NOT 2383 01:32:11,840 --> 01:32:12,560 ERADICATE ABLEISM. 2384 01:32:12,560 --> 01:32:14,400 WE NEED TO ADDRESS THE 2385 01:32:14,400 --> 01:32:22,680 STRUCTURAL ABLEISM. 2386 01:32:22,680 --> 01:32:24,840 THAT YOU ARE LAWS, POLICIES, 2387 01:32:24,840 --> 01:32:25,720 INSTITUTIONAL PRACTICES AND 2388 01:32:25,720 --> 01:32:28,040 NORMS THAT CREATE AND PERPETUATE 2389 01:32:28,040 --> 01:32:30,200 ABLEISM AND WHEN WE THINK ABOUT 2390 01:32:30,200 --> 01:32:32,080 ABLEISM, WE NEED TO GO BACK 2391 01:32:32,080 --> 01:32:34,600 THROUGH HISTORY AND A FIE THE 2392 01:32:34,600 --> 01:32:36,120 POTENTIAL HISTORICAL CONTEXT 2393 01:32:36,120 --> 01:32:38,520 THAT HAS LED TO OUR CURRENT 2394 01:32:38,520 --> 01:32:39,560 POLICY LAWS AND NORMS. 2395 01:32:39,560 --> 01:32:41,360 TODAY I'LL GIVE TWO EXAMPLES. 2396 01:32:41,360 --> 01:32:44,080 WHERE I SEE STRUCTURAL ABLEISM 2397 01:32:44,080 --> 01:32:46,360 THAT IS EMBEDDED IN OUR POLICY 2398 01:32:46,360 --> 01:32:50,200 SYSTEMS AND NORMS, WITHIN 2399 01:32:50,200 --> 01:32:53,400 HEALTHCARE. 2400 01:32:53,400 --> 01:32:54,200 PROBABLY THE MOST STRAIGHT 2401 01:32:54,200 --> 01:32:55,600 FORWARD EXAMPLE THAT WE CAN ALL 2402 01:32:55,600 --> 01:32:58,440 THINK ABOUT IS THE EUGENICS 2403 01:32:58,440 --> 01:33:02,440 MOVEMENT AND THE EARLY 20s 2404 01:33:02,440 --> 01:33:02,680 CENTURY. 2405 01:33:02,680 --> 01:33:07,880 SO THE EUGENICS WAS LED BY THE 2406 01:33:07,880 --> 01:33:09,520 FIELD OF MEDICINE AND A 2407 01:33:09,520 --> 01:33:10,720 DEMONSTRATION OF DEVALUING OF 2408 01:33:10,720 --> 01:33:12,120 PEOPLE WITH DISABILITY THIS IS 2409 01:33:12,120 --> 01:33:12,600 SOCIETY. 2410 01:33:12,600 --> 01:33:15,440 IT POSTULATED THERE WERE GOOD 2411 01:33:15,440 --> 01:33:17,840 GENES AND THESE GOOD GENES 2412 01:33:17,840 --> 01:33:20,040 SHOULD BE FOSTERED AND THAT BAD 2413 01:33:20,040 --> 01:33:22,640 GENES SHOULD BE ELIMINATED FROM 2414 01:33:22,640 --> 01:33:23,000 SOCIETY. 2415 01:33:23,000 --> 01:33:25,160 SO SOME OF THE MOST PROMINENT 2416 01:33:25,160 --> 01:33:27,360 MINDS IN HEALTHCARE AT THE TIME 2417 01:33:27,360 --> 01:33:29,960 SUCH AS THE MAYO BROTHERS WHO 2418 01:33:29,960 --> 01:33:31,760 STARTED THE MAYO CLINIC WERE 2419 01:33:31,760 --> 01:33:34,320 STRONG PROPONENTS OF EUGENICS 2420 01:33:34,320 --> 01:33:34,600 MOVEMENT. 2421 01:33:34,600 --> 01:33:36,600 ONE OF THE MOST INSIDIOUS TOOLS 2422 01:33:36,600 --> 01:33:39,320 USED BY THE EUGENICS MOVEMENT 2423 01:33:39,320 --> 01:33:40,480 WAS FORCED STERILIZATION OF 2424 01:33:40,480 --> 01:33:43,520 PEOPLE WITH DISABILITIES. 2425 01:33:43,520 --> 01:33:47,200 AND OTHERS THAT SOCIETY HAD 2426 01:33:47,200 --> 01:33:50,920 DEEMED CLINICAL UNDESIRABLE. 2427 01:33:50,920 --> 01:33:53,160 CARRIE BUCK WAS FORCIBLY 2428 01:33:53,160 --> 01:33:53,560 STERILIZED. 2429 01:33:53,560 --> 01:33:56,200 Ms. BUCK WAS A YOUNG WOMAN WHO 2430 01:33:56,200 --> 01:33:58,000 HAD GIVEN BIRTH FOLLOWING BEING 2431 01:33:58,000 --> 01:34:00,040 RAPED AND SHE WAS PLACED IN THE 2432 01:34:00,040 --> 01:34:03,840 INSTITUTION BY HER FOSTER 2433 01:34:03,840 --> 01:34:04,160 FAMILY. 2434 01:34:04,160 --> 01:34:08,280 THE STATE OF VIRGINIA WANTED TO 2435 01:34:08,280 --> 01:34:09,360 FORCIBLY STERILIZE CARRIE AND 2436 01:34:09,360 --> 01:34:12,760 CARRIE DID NOT WANT TO BE 2437 01:34:12,760 --> 01:34:13,080 STERILIZED. 2438 01:34:13,080 --> 01:34:14,200 HER CASE WENT TO THE SUPREME 2439 01:34:14,200 --> 01:34:16,920 COURT WHO RULED THE STATE COULD 2440 01:34:16,920 --> 01:34:19,520 PURSUE WITH STERILIZATION. 2441 01:34:19,520 --> 01:34:22,480 THE MOST FAMOUS QUOTE FROM THE 2442 01:34:22,480 --> 01:34:25,200 CASE WAS FROM JUSTICE OLIVER 2443 01:34:25,200 --> 01:34:29,720 WENDELL HOLMES WHO SAID THREE 2444 01:34:29,720 --> 01:34:41,120 GENERATION OGENERATIONS OF I IME 2445 01:34:42,280 --> 01:34:43,040 ENOUGH. 2446 01:34:43,040 --> 01:34:44,480 THERE WERE 60,000 MEN AND WOMEN 2447 01:34:44,480 --> 01:34:45,920 IN THE UNITED STATES WHO WERE 2448 01:34:45,920 --> 01:34:51,520 FORCIBLY STERILIZED. 2449 01:34:51,520 --> 01:34:53,320 AND WHILE STATE LEVEL 2450 01:34:53,320 --> 01:34:55,080 STERILIZATION LAWS WERE 2451 01:34:55,080 --> 01:34:57,120 PROGRESSIVELY OVER TURNED 2452 01:34:57,120 --> 01:34:58,560 THROUGHOUT 1970s, I BELIEVE 2453 01:34:58,560 --> 01:35:00,360 THE LEGACY OF DEVALUING THE 2454 01:35:00,360 --> 01:35:03,760 LIVES OF PERSONS WITH DISABILITY 2455 01:35:03,760 --> 01:35:08,560 AND BEING A PART OF OUR 2456 01:35:08,560 --> 01:35:09,920 INSTITUTIONAL AND GOVERNMENT AND 2457 01:35:09,920 --> 01:35:13,280 POLICY CONTINUOUS TO THAT. 2458 01:35:13,280 --> 01:35:15,520 SO, AS AN EXAMPLE, NEXT SLIDE, 2459 01:35:15,520 --> 01:35:17,280 WE HAVE OUR CRISIS STANDARDS OF 2460 01:35:17,280 --> 01:35:18,120 CARE. 2461 01:35:18,120 --> 01:35:20,400 AGAIN, DURING THE START OF THE 2462 01:35:20,400 --> 01:35:22,920 PANDEMIC, THE COVID-19 PANDEMIC, 2463 01:35:22,920 --> 01:35:24,920 STATES WERE REVIEWING THEIR 2464 01:35:24,920 --> 01:35:25,960 CRISIS STANDARDS OF CARE AND 2465 01:35:25,960 --> 01:35:28,160 EIGHT STATES WERE FOUND TO HAVE 2466 01:35:28,160 --> 01:35:29,560 PLANS THAT DEPRIORITIZE PEOPLE 2467 01:35:29,560 --> 01:35:31,600 WITH DISABILITIES. 2468 01:35:31,600 --> 01:35:35,680 THESE PLANS, FOR EXAMPLE, 2469 01:35:35,680 --> 01:35:36,720 INFRASTRUCTURED HOSPITALS TO 2470 01:35:36,720 --> 01:35:37,400 CONSIDER BASELINE FUNCTIONING 2471 01:35:37,400 --> 01:35:39,240 STATUS IN CRISIS STANDARDS OF 2472 01:35:39,240 --> 01:35:46,600 CARE DECISIONS AS WELL AS NOT 2473 01:35:46,600 --> 01:35:48,960 OFFERING VENTILATION SUPPORT AND 2474 01:35:48,960 --> 01:35:53,000 DEMENTIA OR DRAMATIC BRAIN 2475 01:35:53,000 --> 01:35:55,720 INJURIES AND THESE PLANS WERE 2476 01:35:55,720 --> 01:35:56,640 DETERMINED BY THE DEPARTMENT OF 2477 01:35:56,640 --> 01:35:58,200 HUMAN SERVICES TO BE IN 2478 01:35:58,200 --> 01:36:01,520 VIOLATION OF AMERICANS WITH 2479 01:36:01,520 --> 01:36:02,040 DISABILITIES ACT. 2480 01:36:02,040 --> 01:36:04,320 BECAUSE THEY DISCRIMINATED 2481 01:36:04,320 --> 01:36:06,920 AGAINST PEOPLE WITH DISABILITY. 2482 01:36:06,920 --> 01:36:09,360 AND WHILE THESE PLANS WERE 2483 01:36:09,360 --> 01:36:13,640 ADAPTED, VERY LIKELY THEY 2484 01:36:13,640 --> 01:36:19,040 EMBEDDED NORMS IN HEALTHCARE 2485 01:36:19,040 --> 01:36:19,560 INFLUENCE INDIVIDUAL LEVEL 2486 01:36:19,560 --> 01:36:20,200 DECISIONS IN CARE FOR PEOPLE 2487 01:36:20,200 --> 01:36:22,880 WITH DISABILITIES SUCH AS 2488 01:36:22,880 --> 01:36:27,280 DECISIONS LIKE THE TEAM MADE IN 2489 01:36:27,280 --> 01:36:30,560 MICHAEL HICKSON'S CASE. 2490 01:36:30,560 --> 01:36:32,080 I'M GIVING MY SECOND EXAMPLE 2491 01:36:32,080 --> 01:36:33,720 WHICH ARE DISABILITY BENEFITS. 2492 01:36:33,720 --> 01:36:35,520 FEDERAL DISABILITY BENEFITS. 2493 01:36:35,520 --> 01:36:37,280 WHICH THEY ARE VERY CRITICAL AND 2494 01:36:37,280 --> 01:36:41,160 IMPORTANT FOR MANY PEOPLE WITH 2495 01:36:41,160 --> 01:36:43,720 DISABILITIES. 2496 01:36:43,720 --> 01:36:46,280 I WOULD LIKE TO REFER YOUR 2497 01:36:46,280 --> 01:36:47,480 ATTENTION TO HERE I HAVE A 2498 01:36:47,480 --> 01:36:49,000 CHECKLIST FROM THE WEBSITE ON 2499 01:36:49,000 --> 01:36:52,000 HOW TO APPLY FOR DISABILITY 2500 01:36:52,000 --> 01:36:53,120 BENEFITS. 2501 01:36:53,120 --> 01:36:55,400 AND THE NUMBER ONE ITEM IN THAT 2502 01:36:55,400 --> 01:36:58,480 CHECKLIST IS TO PROVIDE YOUR 2503 01:36:58,480 --> 01:37:01,920 MEDICAL RECORDS STATING AND 2504 01:37:01,920 --> 01:37:03,720 VERIFYING THAT YOU HAVE A 2505 01:37:03,720 --> 01:37:04,680 DISABILITY. 2506 01:37:04,680 --> 01:37:08,440 SO HOW MIGHT THESE APPLYING FOR 2507 01:37:08,440 --> 01:37:10,400 THESE BENEFITS REINFORCE ABLEIST 2508 01:37:10,400 --> 01:37:14,000 ATTITUDES AND PRACTICES AND 2509 01:37:14,000 --> 01:37:16,120 HEALTHCARE? 2510 01:37:16,120 --> 01:37:17,560 FIRST, I BELIEVE IT REINFORCES 2511 01:37:17,560 --> 01:37:19,200 THE MEDICAL MODEL. 2512 01:37:19,200 --> 01:37:21,760 AS Dr. ANDREWS MENTIONED THE 2513 01:37:21,760 --> 01:37:24,560 MEDICAL MODEL POSTULATE THAT 2514 01:37:24,560 --> 01:37:26,720 DISABILITY IS A RESULT OF AN 2515 01:37:26,720 --> 01:37:28,680 IMPAIRMENT THAT OCCURS AT A 2516 01:37:28,680 --> 01:37:30,080 INDIVIDUAL LEVEL AND TO 2517 01:37:30,080 --> 01:37:32,400 QUOTE-UNQUOTE ADDRESS DISABILITY 2518 01:37:32,400 --> 01:37:34,920 YOU NEED TO HAVE A CURE OF THE 2519 01:37:34,920 --> 01:37:35,480 INDIVIDUAL. 2520 01:37:35,480 --> 01:37:37,120 SECOND, I BELIEVE IT PUTS 2521 01:37:37,120 --> 01:37:39,720 MEDICAL PROVIDERS IN THE 2522 01:37:39,720 --> 01:37:41,280 POSITION OF HELPING TO DETERMINE 2523 01:37:41,280 --> 01:37:44,120 WHO QUALIFIES OR WHO IS 2524 01:37:44,120 --> 01:37:45,360 QUOTE-UNQUOTE WORTHY OF 2525 01:37:45,360 --> 01:37:47,360 DISABILITY BENEFITS. 2526 01:37:47,360 --> 01:37:51,600 I HAVE THIS PLAY OUT IN EVERY 2527 01:37:51,600 --> 01:37:52,040 DAY. 2528 01:37:52,040 --> 01:37:54,440 AS A DISABILITY RESEARCHER WHO 2529 01:37:54,440 --> 01:37:55,200 STUDIED HEALTHCARE DISPARITIES 2530 01:37:55,200 --> 01:37:57,160 FOR THE PAST DECADE, ONE OF THE 2531 01:37:57,160 --> 01:38:00,640 MOST COMMON RESPONSES I DID WHEN 2532 01:38:00,640 --> 01:38:01,720 I TALKED WITH SOMEONE IN 2533 01:38:01,720 --> 01:38:05,280 MEDICINE ABOUT THE RESEARCH I DO 2534 01:38:05,280 --> 01:38:07,400 IS THEY WILL REPLY, NEXT SLIDE, 2535 01:38:07,400 --> 01:38:10,760 AS REALLY GREAT WORK AND EXCEPT 2536 01:38:10,760 --> 01:38:14,640 FOR ALL OF THOSE RESPONDING TO 2537 01:38:14,640 --> 01:38:19,760 THE BELIE BELIEF THAT MANY WITHA 2538 01:38:19,760 --> 01:38:21,200 LOTS ARE FAKING THEIR 2539 01:38:21,200 --> 01:38:23,720 DISABILITIES TO RECEIVE 2540 01:38:23,720 --> 01:38:24,800 BENEFITS. 2541 01:38:24,800 --> 01:38:27,560 AND SO HOW DOES THIS, AGAIN, 2542 01:38:27,560 --> 01:38:30,680 PLAY OUT IN EVERYDAY HEALTHCARE? 2543 01:38:30,680 --> 01:38:33,840 I BELIEVE THAT WHEN 2544 01:38:33,840 --> 01:38:35,480 ORGANIZATIONS ARE RELUCTANT OR 2545 01:38:35,480 --> 01:38:37,680 CONSIDERED THAT PEOPLE WITH 2546 01:38:37,680 --> 01:38:38,360 DISABILITIES MIGHT BE TRYING TO 2547 01:38:38,360 --> 01:38:41,200 QUOTE SCAM THE SYSTEM FOR 2548 01:38:41,200 --> 01:38:43,960 BENEFITS, HEALTH SYSTEMS WILL BE 2549 01:38:43,960 --> 01:38:45,920 RELUCTANT TO AND LESS INCLINED 2550 01:38:45,920 --> 01:38:47,840 TO INVEST IN ENSURE THEIR 2551 01:38:47,840 --> 01:38:49,560 HEALTHCARE ORGANIZATIONS ARE 2552 01:38:49,560 --> 01:38:50,800 ACCESSIBLE. 2553 01:38:50,800 --> 01:38:51,720 FOR EXAMPLE, SEVERAL MONTHS AGO 2554 01:38:51,720 --> 01:38:53,760 I TALKED WITH THE DIRECTOR OF A 2555 01:38:53,760 --> 01:38:54,840 PRIMARY CARE CLINIC ABOUT THE 2556 01:38:54,840 --> 01:38:56,120 NEED FOR DOCUMENTING 2557 01:38:56,120 --> 01:38:57,640 DISABILITIES STATUS AND SHE 2558 01:38:57,640 --> 01:38:59,200 SAID, AND PROVIDING 2559 01:38:59,200 --> 01:39:00,800 ACCOMMODATIONS AND SHE SAID, WE 2560 01:39:00,800 --> 01:39:02,440 CAN'T DO THAT BECAUSE EVERYONE 2561 01:39:02,440 --> 01:39:06,040 IN THEIR MOTHER WITH LOW BACK 2562 01:39:06,040 --> 01:39:07,680 PAIN WOULD REPORT A DISABILITY. 2563 01:39:07,680 --> 01:39:09,080 WE CAN'T PROVIDE ACCOMMODATIONS 2564 01:39:09,080 --> 01:39:11,280 NOT KNOWING THAT IT'S ACTUALLY 2565 01:39:11,280 --> 01:39:15,760 LEGALLY REQUIRED TO PROVIDE 2566 01:39:15,760 --> 01:39:20,040 ACCOMMODATIONS. 2567 01:39:20,040 --> 01:39:21,440 HEALTH AIR IS INACCESSIBLE FOR 2568 01:39:21,440 --> 01:39:22,960 PEOPLE WITH DISABILITY AND 2569 01:39:22,960 --> 01:39:24,320 RESEARCH HAS DEMONSTRATED OVER 2570 01:39:24,320 --> 01:39:26,960 AND OVER THERE'S A LACK OF 2571 01:39:26,960 --> 01:39:32,720 REASONABLE MODIFICATIONS AND 2572 01:39:32,720 --> 01:39:34,760 POLICIES AND PROCEDURES AND 2573 01:39:34,760 --> 01:39:36,440 ACCESSIBILITY FACILITIES AND 2574 01:39:36,440 --> 01:39:40,720 EQUIPMENT SUCH AS WHEELCHAIR 2575 01:39:40,720 --> 01:39:41,360 ACCESSIBLE SCALES AND THERE'S A 2576 01:39:41,360 --> 01:39:44,680 LACK OF EFFECTIVE COMMUNICATION. 2577 01:39:44,680 --> 01:39:45,960 IN HEALTHCARE EXPERIENCE WITH 2578 01:39:45,960 --> 01:39:54,000 PEOPLE BY DISABILITIES. 2579 01:39:54,000 --> 01:39:56,360 SO I WANT TO LEAVE US ON A MORE 2580 01:39:56,360 --> 01:39:57,560 POSITIVE NOTE. 2581 01:39:57,560 --> 01:40:02,080 HOW DO WE MOVE FORWARD? 2582 01:40:02,080 --> 01:40:04,320 SO, BEFORE I GET TO A FEW FIRST 2583 01:40:04,320 --> 01:40:07,240 STEPS, I BELIEVE, THAT WE CAN 2584 01:40:07,240 --> 01:40:09,640 MOVE FORWARD IN ADDRESSING AND 2585 01:40:09,640 --> 01:40:10,400 DISMANTLING ABLEISM AND 2586 01:40:10,400 --> 01:40:11,640 HEALTHCARE, I WANT TO CALL OUT 2587 01:40:11,640 --> 01:40:13,760 OF FIELD OF MEDICINE TODAY DUE 2588 01:40:13,760 --> 01:40:15,640 TO THE PROMINENCE OF MEDICAL 2589 01:40:15,640 --> 01:40:18,280 MODEL OF DISABILITY IN OUR 2590 01:40:18,280 --> 01:40:19,680 SOCIETY, I BELIEVE THAT MEDICINE 2591 01:40:19,680 --> 01:40:22,080 HAS THE POWER AND THE 2592 01:40:22,080 --> 01:40:22,840 RESPONSIBILITY TO BEGIN THE 2593 01:40:22,840 --> 01:40:25,000 PROCESS OF DISRUPTING AND 2594 01:40:25,000 --> 01:40:29,800 DISMANTLING ABLEISM IN SOCIETY. 2595 01:40:29,800 --> 01:40:32,400 SO WHAT ARE THREE THINGS 2596 01:40:32,400 --> 01:40:34,600 HEALTH-CARE SYSTEM CAN DO TODAY? 2597 01:40:34,600 --> 01:40:36,080 ONE, IT'S ALREADY BEEN MENTIONED 2598 01:40:36,080 --> 01:40:37,160 TODAY AND RECOGNIZE THAT PEOPLE 2599 01:40:37,160 --> 01:40:39,640 WITH DIS A LOTS ARE A POPULATION 2600 01:40:39,640 --> 01:40:42,480 WHO EXPERIENCE STIGMA, 2601 01:40:42,480 --> 01:40:43,920 MARGINALIZATION AND DISPARITIES. 2602 01:40:43,920 --> 01:40:45,440 TWO, INCLUDE PEOPLE WITH 2603 01:40:45,440 --> 01:40:46,440 DISABILITIES AND DIVERSITY 2604 01:40:46,440 --> 01:40:49,520 EQUITY AND INCLUSION EFFORTS AND 2605 01:40:49,520 --> 01:40:51,280 THREE, IMPROVE THE DATA ON 2606 01:40:51,280 --> 01:40:53,080 PERSONS WITH DISABILITIES. 2607 01:40:53,080 --> 01:40:54,160 AND I SPENT A LITTLE BIT OF TIME 2608 01:40:54,160 --> 01:40:58,760 ON THIS LAST POINT. 2609 01:40:58,760 --> 01:41:00,880 WE CAN'T IMPROVE WHAT WE CAN'T 2610 01:41:00,880 --> 01:41:01,120 MEASURE. 2611 01:41:01,120 --> 01:41:03,960 WE NEED IMPROVED DATA AT THE 2612 01:41:03,960 --> 01:41:05,280 PUBLIC-HEALTH LEVEL SO WE CAN 2613 01:41:05,280 --> 01:41:07,960 TRACK QUALITY OF HEALTH AND 2614 01:41:07,960 --> 01:41:09,480 HEALTHCARE, MONITOR TRENDS AT A 2615 01:41:09,480 --> 01:41:11,200 POPULATION LEVEL AND MAKE 2616 01:41:11,200 --> 01:41:12,600 INFORMED POLICY CHANGES. 2617 01:41:12,600 --> 01:41:14,840 AND AT A HEALTH-CARE SYSTEM 2618 01:41:14,840 --> 01:41:16,760 LEVEL, WE NEED TO BE DOCUMENTING 2619 01:41:16,760 --> 01:41:19,040 DISABILITIES STATUS IN THE 2620 01:41:19,040 --> 01:41:21,120 ELECTRONIC HEALTH RECORDS SO 2621 01:41:21,120 --> 01:41:22,000 THAT WE CAN AGAIN, TRACK THE 2622 01:41:22,000 --> 01:41:24,720 QUALITY OF HEALTH AND HEALTHCARE 2623 01:41:24,720 --> 01:41:27,320 OUTCOMES AND ORGANIZATION LEVEL 2624 01:41:27,320 --> 01:41:28,960 AND EYE FIVE WHERE THESE 2625 01:41:28,960 --> 01:41:30,280 DISPARITIES EXIST, DEVELOP AND 2626 01:41:30,280 --> 01:41:31,320 IMPLEMENT INTERVENTIONS AND 2627 01:41:31,320 --> 01:41:32,920 MEASURE THE EFFECTS OF THOSE 2628 01:41:32,920 --> 01:41:35,200 INTERVENTIONS AND IMPROVING 2629 01:41:35,200 --> 01:41:36,800 ACCESS TO QUALITY CARE FOR 2630 01:41:36,800 --> 01:41:38,440 PEOPLE WITH DISABILITIES AND 2631 01:41:38,440 --> 01:41:40,960 FINALLY, WE NEED IMPROVED 2632 01:41:40,960 --> 01:41:42,040 COLLECTION OF DISABILITY STATUS 2633 01:41:42,040 --> 01:41:44,000 SO WE CAN IDENTIFY WHICH 2634 01:41:44,000 --> 01:41:45,920 PATIENTS HAVE DISABILITIES SO WE 2635 01:41:45,920 --> 01:41:50,000 CAN PROVIDE THEM ACCOMMODATIONS 2636 01:41:50,000 --> 01:41:52,000 THAT HEALTH SYSTEMS ARE ALREADY 2637 01:41:52,000 --> 01:41:59,440 FEDERALLY REQUIRED TO PROVIDE. 2638 01:41:59,440 --> 01:42:01,920 SO WE'VE DONE A SERIES OF 2639 01:42:01,920 --> 01:42:03,160 STUDIES IN THIS TOPIC AND I 2640 01:42:03,160 --> 01:42:04,200 WOULD LIKE TO SHARE A LITTLE BIT 2641 01:42:04,200 --> 01:42:06,920 OF THAT LITERATURE. 2642 01:42:06,920 --> 01:42:08,240 FIRST OFF, WE HAVE DONE MULTIPLE 2643 01:42:08,240 --> 01:42:09,440 STUDIES AND FOUND THAT PATIENTS 2644 01:42:09,440 --> 01:42:13,360 ARE REALLY GENERALLY SUPPORTIVE 2645 01:42:13,360 --> 01:42:14,560 OF BEING ASKED ABOUT THEIR 2646 01:42:14,560 --> 01:42:17,120 DISABILITY STATUS AND HAVING IT 2647 01:42:17,120 --> 01:42:19,240 RECORDED IN THEIR ELECTRONIC 2648 01:42:19,240 --> 01:42:20,240 HEALTH RECORDS. 2649 01:42:20,240 --> 01:42:22,040 WHEN WE TALK TO HEALTHCARE 2650 01:42:22,040 --> 01:42:24,280 SYSTEMS, THEY OFTEN QUESTION 2651 01:42:24,280 --> 01:42:27,320 ABOUT WHETHER IT'S LEGAL TO ASK 2652 01:42:27,320 --> 01:42:28,640 PATIENTS ABOUT THEIR 2653 01:42:28,640 --> 01:42:30,040 ACCOMMODATION NEEDS AND I CAN 2654 01:42:30,040 --> 01:42:31,920 ASSURE YOU IT'S LEGAL AND NOT 2655 01:42:31,920 --> 01:42:33,600 ONLY IS IT LEGAL, IT'S THAT 2656 01:42:33,600 --> 01:42:36,000 THERE ARE SOME FEDERAL POLICIES 2657 01:42:36,000 --> 01:42:38,480 AND LAWS DEPENDING ON HOW YOU 2658 01:42:38,480 --> 01:42:42,920 INTERPRET, SOME OF THE SECTION 2659 01:42:42,920 --> 01:42:44,440 1357 AND 4302 OF THE AFFORDABLE 2660 01:42:44,440 --> 01:42:45,960 CARE ACT STATING HEALTHCARE 2661 01:42:45,960 --> 01:42:49,000 ORGANIZATIONS NEED TO DOCUMENT 2662 01:42:49,000 --> 01:42:50,200 PATIENTS DISABILITY STATUS. 2663 01:42:50,200 --> 01:42:51,560 WE'VE CONDUCTED RESEARCH WITH A 2664 01:42:51,560 --> 01:42:53,480 WIDE RANGE OF STAKEHOLDERS AND 2665 01:42:53,480 --> 01:42:55,040 FOUND THAT DOCUMENTING 2666 01:42:55,040 --> 01:42:56,760 DISABILITIES STATUS HAS BEEN 2667 01:42:56,760 --> 01:43:00,480 IDENTIFIED AS A TOP RESEARCH AND 2668 01:43:00,480 --> 01:43:01,560 POLICY PRIORITY. 2669 01:43:01,560 --> 01:43:03,480 DESPITE ALL OF THIS EVIDENCE, 2670 01:43:03,480 --> 01:43:05,280 HEALTH SYSTEMS TODAY ARE 2671 01:43:05,280 --> 01:43:08,160 STRUGGLING HOW TO IMPLEMENT 2672 01:43:08,160 --> 01:43:09,600 INFLECTION OF DISABILITY STATUS. 2673 01:43:09,600 --> 01:43:11,520 WE CONDUCTED INTERVIEWS WITH 2674 01:43:11,520 --> 01:43:12,840 SYSTEMS TO UNDERSTAND WHAT ARE 2675 01:43:12,840 --> 01:43:16,480 THE BARRIERS TO IMPLEMENTING 2676 01:43:16,480 --> 01:43:17,760 SYSTEMATIC COLLECTION OF PATIENT 2677 01:43:17,760 --> 01:43:18,680 DISABILITY STATUS. 2678 01:43:18,680 --> 01:43:20,400 ONE OF THOSE BARRIERS IS THE 2679 01:43:20,400 --> 01:43:22,800 LACK OF FEDERAL POLICY AND 2680 01:43:22,800 --> 01:43:27,200 DIRECTION ON HOW BEST TO DO 2681 01:43:27,200 --> 01:43:33,360 THIS. 2682 01:43:33,360 --> 01:43:35,080 THANKFULLY, WE HAVE SOME RECENT 2683 01:43:35,080 --> 01:43:35,680 POLICY CHANGES. 2684 01:43:35,680 --> 01:43:38,280 THE OFFICE FOR THE NATIONAL 2685 01:43:38,280 --> 01:43:39,080 COORDINATOR FOR HEALTH 2686 01:43:39,080 --> 01:43:40,280 INFORMATION TECHNOLOGY, THE 2687 01:43:40,280 --> 01:43:43,880 FEDERAL BODY THAT OVERSEES 2688 01:43:43,880 --> 01:43:47,200 ELECTRONIC HEALTH RECORDS IN OUR 2689 01:43:47,200 --> 01:43:48,720 COUNTRY, LAST SUMMER, JULY OF 2690 01:43:48,720 --> 01:43:50,480 2022, RELEASED THEIR KNEW 2691 01:43:50,480 --> 01:43:52,720 STANDARDS FOR INTEROPERABILITY 2692 01:43:52,720 --> 01:43:55,440 AND IN THIS, THEY REPORTED AND 2693 01:43:55,440 --> 01:43:57,040 INCLUDED YOU CAN SEE IT DOWN AT 2694 01:43:57,040 --> 01:43:58,920 BOTTOM OF THE SLIDES, CIRCLED IN 2695 01:43:58,920 --> 01:44:02,080 RED, A STANDARDIZED DISABILITY 2696 01:44:02,080 --> 01:44:03,040 STATUS DATA ELEMENT AND AGAIN 2697 01:44:03,040 --> 01:44:06,760 THIS IS REALLY IMPORTANT BECAUSE 2698 01:44:06,760 --> 01:44:09,960 WE HAVE SEEN THAT ELECTRONIC 2699 01:44:09,960 --> 01:44:11,640 HEALTH RECORD VENDERS ARE 2700 01:44:11,640 --> 01:44:13,920 PUTTING INTO THE BASE MODEL OF 2701 01:44:13,920 --> 01:44:19,080 ALL OF THEIR EHRS AND ALL OF 2702 01:44:19,080 --> 01:44:22,000 THEIR CUSTOMERS THE DISABILITY 2703 01:44:22,000 --> 01:44:22,520 DATA ELEMENT. 2704 01:44:22,520 --> 01:44:25,560 THIS IS IMPORTANT FIRST STEP. 2705 01:44:25,560 --> 01:44:26,960 IT'S STILL ON HEALTHCARE 2706 01:44:26,960 --> 01:44:28,800 ORGANIZATIONS TO UTILIZE THAT 2707 01:44:28,800 --> 01:44:30,400 FIELD AND COLLECT PATIENTS' 2708 01:44:30,400 --> 01:44:35,200 DISABILITY STATUS AND USE THAT 2709 01:44:35,200 --> 01:44:41,160 INFORMATION MEANINGFULLY. 2710 01:44:41,160 --> 01:44:42,720 TO ADDRESS THIS CONCERN AND NEXT 2711 01:44:42,720 --> 01:44:44,840 STEP IS THE ABILITY 2712 01:44:44,840 --> 01:44:46,040 COLLABORATIVE AND HAD A GROUP 2713 01:44:46,040 --> 01:44:47,680 TOGETHER WE HAVE A WORKING GROUP 2714 01:44:47,680 --> 01:44:51,200 WITH NATIONAL STAKEHOLDERS FROM 2715 01:44:51,200 --> 01:44:54,160 POLICYMAKERS, PATIENTS, PAYERS, 2716 01:44:54,160 --> 01:44:57,440 RESEARCHERS I COULD GO ON AND ON 2717 01:44:57,440 --> 01:44:59,560 AND EHR COLLECTORS WHO WORK 2718 01:44:59,560 --> 01:45:02,400 TOGETHER TO REVIEW THE EVIDENCE 2719 01:45:02,400 --> 01:45:03,600 AND REVIEW WHAT IS CURRENTLY 2720 01:45:03,600 --> 01:45:05,400 HAPPENING IN PRACTICE AND 2721 01:45:05,400 --> 01:45:06,800 PUTTING TOGETHER AN 2722 01:45:06,800 --> 01:45:08,200 IMPLEMENTATION GUIDE FOR 2723 01:45:08,200 --> 01:45:09,760 HOSPITALS AND HEALTH SYSTEMS TO 2724 01:45:09,760 --> 01:45:13,040 START TODAY TO DOCUMENT 2725 01:45:13,040 --> 01:45:14,560 DISABILITY STATUS IN THE 2726 01:45:14,560 --> 01:45:15,840 ELECTRONIC HEALTH RECORD. 2727 01:45:15,840 --> 01:45:20,480 AND I WANT TO HIGHLIGHT THIS 2728 01:45:20,480 --> 01:45:21,280 IMPLEMENTATION GUIDE BECAUSE I 2729 01:45:21,280 --> 01:45:23,440 BELIEVE IT'S AN IMPORTANT FIRST 2730 01:45:23,440 --> 01:45:25,920 STEP IN AN IMPORTANT STEP IN 2731 01:45:25,920 --> 01:45:27,520 EXAMPLES OF HOW STAKEHOLDERS CAN 2732 01:45:27,520 --> 01:45:30,720 COME TOGETHER AND MANY WORK TO 2733 01:45:30,720 --> 01:45:32,520 DEVELOP SOLUTIONS TO CHANGE 2734 01:45:32,520 --> 01:45:34,320 HEALTHCARE TODAY, TO BEGIN TO 2735 01:45:34,320 --> 01:45:37,400 ADDRESS ABLEISM AND DISPARITIES 2736 01:45:37,400 --> 01:45:38,880 IN CARE TODAY FOR INDIVIDUALS 2737 01:45:38,880 --> 01:45:41,240 WITH DISABILITIES. 2738 01:45:41,240 --> 01:45:44,440 AND BY ALL OF US, I BELIEVE 2739 01:45:44,440 --> 01:45:46,480 COLLECTIVELY NAMING ABLEISM AND 2740 01:45:46,480 --> 01:45:47,840 CALLING OUT THE FIELD OF 2741 01:45:47,840 --> 01:45:50,200 MEDICINE AND ITS ROLE IN 2742 01:45:50,200 --> 01:45:51,200 INTERPERSONAL AND STRUCTURAL 2743 01:45:51,200 --> 01:45:53,120 ABLEISM, WE CAN SEE CONCRETE 2744 01:45:53,120 --> 01:45:55,640 CHANGES TOWARDS ENSURING A MORE 2745 01:45:55,640 --> 01:45:57,120 EQUITABLE HEALTHCARE SYSTEMS AND 2746 01:45:57,120 --> 01:45:58,720 ULTIMATELY SOCIETY FOR PEOPLE 2747 01:45:58,720 --> 01:46:03,960 LIVING WITH DISABILITIES. 2748 01:46:03,960 --> 01:46:04,920 THANK YOU. 2749 01:46:04,920 --> 01:46:05,960 >>AT THIS Dr. MORRIS. 2750 01:46:05,960 --> 01:46:09,120 THAT WAS A TERRIFIC TALK AND 2751 01:46:09,120 --> 01:46:11,400 ESPECIALLY THE WAY THAT YOU 2752 01:46:11,400 --> 01:46:15,040 UNPACKED A LOT OF THE ELEMENTS 2753 01:46:15,040 --> 01:46:18,720 THAT PLAY INTO YOUR TRACKING 2754 01:46:18,720 --> 01:46:21,880 DISABILITY, BECAUSE THAT -- I 2755 01:46:21,880 --> 01:46:23,560 THINK YOU MADE A GOOD CASE HOW 2756 01:46:23,560 --> 01:46:25,160 THIS IS CRITICAL INFORMATION. 2757 01:46:25,160 --> 01:46:28,320 I DO WANT TO REMIND PEOPLE THAT 2758 01:46:28,320 --> 01:46:29,840 YES, YOU WILL BE GETTING THE 2759 01:46:29,840 --> 01:46:31,720 SLIDES AND THAT WILL INCLUDES A 2760 01:46:31,720 --> 01:46:35,240 LINK TO THE IMPLEMENTATION 2761 01:46:35,240 --> 01:46:35,600 GUIDE. 2762 01:46:35,600 --> 01:46:36,760 WE HAVE QUESTIONS ABOUT THAT. 2763 01:46:36,760 --> 01:46:37,880 THERE WERE A LOT OF NOT 2764 01:46:37,880 --> 01:46:40,360 QUESTIONS SO MUCH BUT COMMENTS 2765 01:46:40,360 --> 01:46:42,200 IN THE QUESTION AND ANSWER 2766 01:46:42,200 --> 01:46:43,600 EARLIER IN YOUR TALK, PEOPLE 2767 01:46:43,600 --> 01:46:45,160 WERE COMING IN WITH ADDITIONAL 2768 01:46:45,160 --> 01:46:47,400 EXAMPLES FROM THEIR EXPERIENCE 2769 01:46:47,400 --> 01:46:50,960 ON THE HUGE IMPACT THAT 2770 01:46:50,960 --> 01:46:53,320 ASSUMPTIONS, MEDICAL PERSONNEL 2771 01:46:53,320 --> 01:46:55,160 HAVE MADE ABOUT QUALITY OF 2772 01:46:55,160 --> 01:46:57,560 LIFEEL, THE IMPACT OF THOSE 2773 01:46:57,560 --> 01:46:59,200 ASSUMPTIONS HAVE MADE ON 2774 01:46:59,200 --> 01:47:00,280 PEOPLE'S MEDICAL CARE SO IT 2775 01:47:00,280 --> 01:47:02,400 REALLY IS A LIFE-OR-DEATH 2776 01:47:02,400 --> 01:47:02,760 QUESTION. 2777 01:47:02,760 --> 01:47:06,320 IN THE INTEREST OF TIME, I AM 2778 01:47:06,320 --> 01:47:09,800 GOING TO MOVE US ONTO THE BREAK. 2779 01:47:09,800 --> 01:47:11,360 REALLY WANT TO THANK Dr. 2780 01:47:11,360 --> 01:47:14,440 EDWARDS AND Dr. MORRIS, AGAIN, 2781 01:47:14,440 --> 01:47:17,640 FOR GETTING THIS WORKSHOP OFF TO 2782 01:47:17,640 --> 01:47:19,400 A EXCELLENT START AND A GREAT 2783 01:47:19,400 --> 01:47:19,800 MORNING. 2784 01:47:19,800 --> 01:47:22,200 I HAVE BEEN ASKED TO REMIND 2785 01:47:22,200 --> 01:47:23,520 EVERYONE TO PLEASE STAY 2786 01:47:23,520 --> 01:47:23,800 CONNECTED. 2787 01:47:23,800 --> 01:47:25,680 EVEN AS YOU MOVE AWAY FOR THE 2788 01:47:25,680 --> 01:47:26,320 BREAK. 2789 01:47:26,320 --> 01:47:27,920 AND THEN WE WILL SEE YOU ALL 2790 01:47:27,920 --> 01:47:30,800 BACK HERE AT 1:30 P.M. 2791 01:47:30,800 --> 01:47:35,560 THANK YOU, VERY MUCH. 2792 01:47:35,560 --> 01:47:37,280 >>WELCOME BACK 2793 01:47:37,280 --> 01:47:38,400 EVERYONE, I HOPE YOU HAD A NICE 2794 01:47:38,400 --> 01:47:38,960 BREAK. 2795 01:47:38,960 --> 01:47:42,400 I'M ADAM POLITIS AND I'M THE 2796 01:47:42,400 --> 01:47:43,400 ASSISTANT DIRECTOR OF THE 2797 01:47:43,400 --> 01:47:44,760 DEPOSIT TEE AND I WILL MODERATE 2798 01:47:44,760 --> 01:47:47,400 OUR SECOND SESSION ON DIS ACT 2799 01:47:47,400 --> 01:47:48,800 AND HEALTH DISPARITIES RESEARCH. 2800 01:47:48,800 --> 01:47:50,360 AS A DISABLED PERSON I'M 2801 01:47:50,360 --> 01:47:51,840 THRILLED THAT WE AT NIH ARE 2802 01:47:51,840 --> 01:47:52,800 HOLDING THIS WORKSHOP AND YOU 2803 01:47:52,800 --> 01:47:58,480 ARE HERE TODAY TO PRECIPITATION. 2804 01:47:58,480 --> 01:48:01,440 I'M WHITE WITH SHORT BROWN HAIR, 2805 01:48:01,440 --> 01:48:03,080 DARK GRAY SUIT JACKET AND BLUE 2806 01:48:03,080 --> 01:48:04,840 BLUE GLASSES. 2807 01:48:04,840 --> 01:48:08,400 THIS AFTERNOON HE HAVE WE HAVE 2808 01:48:08,400 --> 01:48:09,720 THREE EX SPEAKERS. 2809 01:48:09,720 --> 01:48:12,640 OUR FIRST IS Dr. JEAN HILL. 2810 01:48:12,640 --> 01:48:15,000 Dr. HALL IS THE DIRECTOR OF 2811 01:48:15,000 --> 01:48:16,960 THE TEENS UT FOR HEALTH AND 2812 01:48:16,960 --> 01:48:18,200 DISABILITY POLICY STUDIES AND 2813 01:48:18,200 --> 01:48:19,400 RESEARCH ON INDEPENDENT LIVING 2814 01:48:19,400 --> 01:48:21,240 AT THE UNIVERSITY OF KANSAS HER 2815 01:48:21,240 --> 01:48:23,960 RESEARCH EXAMS THE DISABILITIES, 2816 01:48:23,960 --> 01:48:25,120 HEALTH, EMPLOYMENT, AND 2817 01:48:25,120 --> 01:48:26,360 COMMUNITY PARTICIPATION. 2818 01:48:26,360 --> 01:48:28,120 IN ADDITION TO LEADING THE 2819 01:48:28,120 --> 01:48:29,880 PROJECT ADMINISTERING THE 2820 01:48:29,880 --> 01:48:33,520 NATIONAL SURVEY ON HEALTH AND 2821 01:48:33,520 --> 01:48:34,400 DISABILITY, SHE DISTRICTS 2822 01:48:34,400 --> 01:48:35,920 FEDERAL AND STATE POLITICS WITH 2823 01:48:35,920 --> 01:48:37,240 HEALTH, EMPLOYMENT AND COMMUNITY 2824 01:48:37,240 --> 01:48:38,520 PARTICIPATION WITH PEOPLE WITH 2825 01:48:38,520 --> 01:48:39,840 DISABILITIES, A PRIORITY IS TO 2826 01:48:39,840 --> 01:48:41,120 GIVE VOICE TO PEOPLE WITH 2827 01:48:41,120 --> 01:48:42,040 DISABILITY AND THEIR EXPERIENCES 2828 01:48:42,040 --> 01:48:43,360 WITH ACCESSING HEALTHCARE. 2829 01:48:43,360 --> 01:48:46,440 AND LIVING IN THEIR COMMUNITIES. 2830 01:48:46,440 --> 01:48:47,880 Dr. HALL IS NOT ABLE TO BE 2831 01:48:47,880 --> 01:48:53,560 WITH US BUT PRE-RECORDED HER 2832 01:48:53,560 --> 01:48:56,200 PRESENTATION. 2833 01:48:56,200 --> 01:49:01,040 LET'S ALL ENJOY Dr. HALL'S 2834 01:49:01,040 --> 01:49:06,040 PRESENTATION. 2835 01:49:06,040 --> 01:49:06,560 HELLO, EVERYONE. 2836 01:49:06,560 --> 01:49:07,760 THANK YOU FOR BEING HERE TODAY 2837 01:49:07,760 --> 01:49:09,280 TO LEARN ABOUT THE IMPORTANT 2838 01:49:09,280 --> 01:49:11,200 TOPIC OF ABLEISM IN MEDICINE. 2839 01:49:11,200 --> 01:49:13,080 I WISH I COULD BE WITH YOU THERE 2840 01:49:13,080 --> 01:49:14,400 IN-PERSON, BUT PLEASE E-MAIL IF 2841 01:49:14,400 --> 01:49:15,440 YOU HAVE ANY QUESTIONS THAT 2842 01:49:15,440 --> 01:49:16,480 AREN'T ANSWERED BY OTHER 2843 01:49:16,480 --> 01:49:17,280 SPEAKERS. 2844 01:49:17,280 --> 01:49:21,400 MY E-MAIL IS BELOW. 2845 01:49:21,400 --> 01:49:22,960 MY NAME IS JEAN HALL I'M THE 2846 01:49:22,960 --> 01:49:23,920 DIRECTOR OF THE INSTITUTE FOR 2847 01:49:23,920 --> 01:49:25,800 HEALTH AND DISABILITY POLICY 2848 01:49:25,800 --> 01:49:27,440 STUDIES AT UNIVERSITY OF KANSAS. 2849 01:49:27,440 --> 01:49:29,120 I'M A WHITE WOMAN WITH 2850 01:49:29,120 --> 01:49:31,080 LIGHT-BROWN HAIR, WEARING BLUE 2851 01:49:31,080 --> 01:49:32,960 GLASSES AND A BLUE SWEATER AND I 2852 01:49:32,960 --> 01:49:34,800 SELF-IDENTIFY AS A PERSON WITH A 2853 01:49:34,800 --> 01:49:35,400 DISABILITY. 2854 01:49:35,400 --> 01:49:37,600 I'M GOING TO TALK TO YOU TODAY 2855 01:49:37,600 --> 01:49:38,560 ABOUT HEALTH PISS TAR TEASE 2856 01:49:38,560 --> 01:49:39,320 AMONG PEOPLE WITH DISABILITIES 2857 01:49:39,320 --> 01:49:41,080 AND I'M LOOKING BENEATH THE 2858 01:49:41,080 --> 01:49:42,280 SURFACE AND LOOKING AT THE ROLE 2859 01:49:42,280 --> 01:49:48,120 OF ABLEISM IN THESE DISPARITIES. 2860 01:49:48,120 --> 01:49:51,560 SO THIS IS THE BIG PICTURE. 2861 01:49:51,560 --> 01:49:54,360 THIS IS A GRAPHIC AND IT FIRST 2862 01:49:54,360 --> 01:50:03,600 SHOWS THAT MORE THAN PEOPLE WITH 2863 01:50:03,600 --> 01:50:04,640 DISABILITIES HAVE THE SAME 2864 01:50:04,640 --> 01:50:05,680 GENERAL HEALTHCARE NEEDS AS 2865 01:50:05,680 --> 01:50:06,960 ANYONE ELSE BUT THEY'RE TWO 2866 01:50:06,960 --> 01:50:08,240 TIMES MORE LIKELY TO FIND 2867 01:50:08,240 --> 01:50:10,040 HEALTHCARE PROVIDER SKILLS AND 2868 01:50:10,040 --> 01:50:12,160 FACILITIES INADEQUATE AND THEY 2869 01:50:12,160 --> 01:50:13,920 ARE THREE TIMES TO BE DENIED 2870 01:50:13,920 --> 01:50:14,880 HEALTHCARE AND THAT HAPPENS EVEN 2871 01:50:14,880 --> 01:50:16,560 IN THE UNITED STATES AND WE'LL 2872 01:50:16,560 --> 01:50:18,520 HEAR MORE ABOUT THAT. 2873 01:50:18,520 --> 01:50:20,120 THEY ARE FOUR TIMES TO BE LIKELY 2874 01:50:20,120 --> 01:50:21,760 TO BE TREATED BAD' IN THE 2875 01:50:21,760 --> 01:50:22,520 HEALTH-CARE SYSTEM. 2876 01:50:22,520 --> 01:50:23,440 OVER ALL, ABOUT HALF OF PEOPLE 2877 01:50:23,440 --> 01:50:25,360 WITH DISABILITIES CANNOT AFFORD 2878 01:50:25,360 --> 01:50:27,120 HEALTHCARE AT ALL. 2879 01:50:27,120 --> 01:50:31,080 AND THEY ARE 50% MORE LIKELY TO 2880 01:50:31,080 --> 01:50:35,400 SUFFER CATASTROPHIC HEALTH 2881 01:50:35,400 --> 01:50:36,640 EXPENDITURES PUSHING THEM AND 2882 01:50:36,640 --> 01:50:40,280 THEIR FAMILIES INTO A LIFE OF 2883 01:50:40,280 --> 01:50:41,960 POVERTY. 2884 01:50:41,960 --> 01:50:43,320 SO REHABILITATION AND ASSISTED 2885 01:50:43,320 --> 01:50:44,480 DEVICE HELP PEOPLE WITH 2886 01:50:44,480 --> 01:50:45,960 DISABILITIES TO BE INDEPENDENT 2887 01:50:45,960 --> 01:50:48,920 AND GLOBALLY 970 MILLION PEOPLE 2888 01:50:48,920 --> 01:50:51,320 NEED GLASSES OR LOW VISION AIDS. 2889 01:50:51,320 --> 01:50:53,840 75 MILLION PEOPLE NEED A 2890 01:50:53,840 --> 01:50:56,080 WHEELCHAIR BUT 5% TO 15% HAVE 2891 01:50:56,080 --> 01:50:56,920 ACCESS TO ONE. 2892 01:50:56,920 --> 01:50:57,880 EVEN IN THE UNITED STATES, 2893 01:50:57,880 --> 01:50:59,240 PEOPLE WITH DISABILITIES WHO 2894 01:50:59,240 --> 01:51:00,800 NEED A WHEELCHAIR HAVE TROUBLE 2895 01:51:00,800 --> 01:51:02,840 ACCESSING THEM OR ACCESSING ONES 2896 01:51:02,840 --> 01:51:05,080 THAT NEED THEIR NEEDS. 2897 01:51:05,080 --> 01:51:07,800 PARTICULARLY CHILDREN WHO 2898 01:51:07,800 --> 01:51:09,320 OUTGROW WHEELED CHAIRS. 2899 01:51:09,320 --> 01:51:10,800 466 PEOPLE HAVE DISABLING 2900 01:51:10,800 --> 01:51:12,440 HEARING LOSS AND PRODUCTION OF 2901 01:51:12,440 --> 01:51:13,960 HEARING AIDS ONLY MEETS 10% OF 2902 01:51:13,960 --> 01:51:16,240 GLOBAL NEED AND 3% OF NEED IN 2903 01:51:16,240 --> 01:51:18,880 DEVELOPING COUNTRY. 2904 01:51:18,880 --> 01:51:20,720 TO MAKING ALL HEALTHCARE 2905 01:51:20,720 --> 01:51:21,960 SERVICES ACCESSIBLE TO PEOPLE 2906 01:51:21,960 --> 01:51:23,480 WITH DISABILITIES IS ACHIEVABLE 2907 01:51:23,480 --> 01:51:25,440 AND IT WOULD REDUCE THESE 2908 01:51:25,440 --> 01:51:26,640 UNACCEPTABLE HEALTH DISPARITIES 2909 01:51:26,640 --> 01:51:28,560 THAT WE'LL TALK ABOUT. 2910 01:51:28,560 --> 01:51:30,480 SOME OF THE WAYS THAT WE CAN DO 2911 01:51:30,480 --> 01:51:32,560 THAT WOULD BE FROM A PHYSICAL 2912 01:51:32,560 --> 01:51:34,760 BARRIERS TO HEALTH FACILITIES, 2913 01:51:34,760 --> 01:51:35,520 INFORMATION AND EQUIPMENT. 2914 01:51:35,520 --> 01:51:37,280 MAKE HEALTHCARE MORE AFFORDABLE, 2915 01:51:37,280 --> 01:51:39,320 TRAIN ALL HEALTHCARE WORKERS AND 2916 01:51:39,320 --> 01:51:42,040 DISABILITY ISSUES AND INCLUDING 2917 01:51:42,040 --> 01:51:43,400 DISABILITY RIGHTS. 2918 01:51:43,400 --> 01:51:46,040 INVEST IN CIRCUMSTANCES SUCH AS 2919 01:51:46,040 --> 01:51:46,440 REHABILITATION. 2920 01:51:46,440 --> 01:51:48,040 I'D LIKE TO PAUSE THERE FOR A 2921 01:51:48,040 --> 01:51:48,560 MINUTE, EVEN WHEN HEALTH 2922 01:51:48,560 --> 01:51:50,000 INSURANCE IN THIS COUNTRY DOES 2923 01:51:50,000 --> 01:51:53,360 PAY FOR REHABILITATION, IT 2924 01:51:53,360 --> 01:51:54,600 FAVORS REHABILITATION THAT 2925 01:51:54,600 --> 01:51:55,840 RESTORES FUNCTION LIKE AFTER AN 2926 01:51:55,840 --> 01:51:58,400 ACCIDENT OR AN ILLNESS, OVARY 2927 01:51:58,400 --> 01:52:00,760 HABITATION THAT MAINTAINS 2928 01:52:00,760 --> 01:52:03,320 FUNCTION FOR A PERSON WITH 2929 01:52:03,320 --> 01:52:05,320 PARALYSIS WHO NEEDS THERAPY TO 2930 01:52:05,320 --> 01:52:15,560 PREVENT SPASTICITY AND RATHER 2931 01:52:15,560 --> 01:52:16,800 THAN MAINTAINING THE FUNCTION 2932 01:52:16,800 --> 01:52:18,000 THAT PEOPLE WITH DISABILITIES 2933 01:52:18,000 --> 01:52:18,440 NEED. 2934 01:52:18,440 --> 01:52:19,760 THERE'S A TASTE OF ABILITYISM IN 2935 01:52:19,760 --> 01:52:20,960 OUR INSURANCE SYSTEM AND WE'LL 2936 01:52:20,960 --> 01:52:27,840 TALK MORE ABOUT THAT. 2937 01:52:27,840 --> 01:52:29,880 IN THE UNITED STATES, 61 MILLION 2938 01:52:29,880 --> 01:52:31,160 ADULTS LIVE WITH A DISABILITY 2939 01:52:31,160 --> 01:52:33,360 WHICH IS MORE THAN 1/4 2940 01:52:33,360 --> 01:52:34,480 INDIVIDUALS OR ADULTS WHO LIVE 2941 01:52:34,480 --> 01:52:36,400 IN THIS COUNTRY WITH A 2942 01:52:36,400 --> 01:52:36,720 DISABILITY. 2943 01:52:36,720 --> 01:52:38,080 MOST ASSUREDLY, YOU KNOW SOMEONE 2944 01:52:38,080 --> 01:52:40,560 WITH A DISABILITY. 2945 01:52:40,560 --> 01:52:43,240 AT 26% OF THE POPULATION, PEOPLE 2946 01:52:43,240 --> 01:52:45,400 WITH DISABILITIES ARE THE SINGLE 2947 01:52:45,400 --> 01:52:47,040 LARGEST MINORITY GROUP IN OUR 2948 01:52:47,040 --> 01:52:48,440 COUNTRY AND THEY'RE THE ONLY 2949 01:52:48,440 --> 01:52:49,800 MINORITY GROUP THAT ANY PERSON 2950 01:52:49,800 --> 01:52:51,800 CAN JOIN AT ANY TIME SO ANY 2951 01:52:51,800 --> 01:52:54,200 PERSON CAN BECOME A PERSON WITH 2952 01:52:54,200 --> 01:52:55,800 A DISABILITY DUE TO AN ACCIDENT 2953 01:52:55,800 --> 01:52:57,440 AND ILLNESS AND SOMETHING ELSE 2954 01:52:57,440 --> 01:53:00,320 AND IT'S NOT JUST OTHER PEOPLE. 2955 01:53:00,320 --> 01:53:03,800 NEXT SLIDE, PLEASE. 2956 01:53:03,800 --> 01:53:05,320 SO, IF YOU TAKE NOTHING ELSE 2957 01:53:05,320 --> 01:53:06,360 AWAY FROM OUR PRESENTATION 2958 01:53:06,360 --> 01:53:08,800 TODAY, OTHER THAN THIS NEXT 2959 01:53:08,800 --> 01:53:10,200 STATEMENT, I WILL BE HAPPY JUST 2960 01:53:10,200 --> 01:53:11,760 BECAUSE A PERSON HAS A 2961 01:53:11,760 --> 01:53:13,160 DISABILITY, DOES NOT MEAN THAT 2962 01:53:13,160 --> 01:53:14,640 THEY ARE IN POOR HEALTH. 2963 01:53:14,640 --> 01:53:18,080 IF YOU'VE SEEN A PARALYMPICS, 2964 01:53:18,080 --> 01:53:19,440 YOU'VE SEEN WORLD-CLASS ATHLETES 2965 01:53:19,440 --> 01:53:21,320 WHO IN TOP-PEAK PHYSICAL 2966 01:53:21,320 --> 01:53:23,000 CONDITION. 2967 01:53:23,000 --> 01:53:24,640 SO, HAVING POOR HEALTH HAS 2968 01:53:24,640 --> 01:53:26,440 NOTHING TO DO WITH HAVING A 2969 01:53:26,440 --> 01:53:28,120 DISABILITY, IT HAS TO DO WITH 2970 01:53:28,120 --> 01:53:30,680 ALL THE OTHER FACTORS RELATED TO 2971 01:53:30,680 --> 01:53:32,080 GETTING HEALTHCARE FOR PEOPLE. 2972 01:53:32,080 --> 01:53:33,360 HEALTH DISPARITIES ARE LARGE IN 2973 01:53:33,360 --> 01:53:34,680 THIS GROUP. 2974 01:53:34,680 --> 01:53:36,120 THIS TABLE COMPARES AMERICANS 2975 01:53:36,120 --> 01:53:37,920 WITH DISABILITIES TO AMERICANS 2976 01:53:37,920 --> 01:53:40,600 WITHOUT DISABILITIES ON A 2977 01:53:40,600 --> 01:53:41,680 VARIETY OF MEASURES AND I WANT 2978 01:53:41,680 --> 01:53:42,760 TO POINT OUT DATA IF THIS TABLE 2979 01:53:42,760 --> 01:53:44,880 COMES FROM THE CDC, DISABILITY 2980 01:53:44,880 --> 01:53:46,480 AND HEALTH DATA SYSTEM AND 2981 01:53:46,480 --> 01:53:48,920 THERE'S A LINK TO THAT DATA 2982 01:53:48,920 --> 01:53:50,160 SYSTEM AT BOTTOM OF THE SLIDE 2983 01:53:50,160 --> 01:53:52,640 AND THIS IS A REALLY COOL 2984 01:53:52,640 --> 01:53:54,520 DASHBOARD WHERE YOU CAN ACCESS 2985 01:53:54,520 --> 01:53:55,840 DATA ON HEALTH DISPARITIES FOR 2986 01:53:55,840 --> 01:53:57,680 PEOPLE WITH DISABILITIES AND 2987 01:53:57,680 --> 01:53:59,400 USING A VARIETY OF DEMOGRAPHICS 2988 01:53:59,400 --> 01:54:01,240 AND OR LOOKING AT THE STATE 2989 01:54:01,240 --> 01:54:03,240 LEVEL AND WE'RE JUST, IF YOU 2990 01:54:03,240 --> 01:54:04,440 EXPLORED IT, IT GIVES YOU A GOOD 2991 01:54:04,440 --> 01:54:06,320 IDEA OF THESE DISPARITIES. 2992 01:54:06,320 --> 01:54:08,320 SO, THIS TABLE WE SEE THAT 2993 01:54:08,320 --> 01:54:10,280 AMERICANS WITH DISABILITIES ARE 2994 01:54:10,280 --> 01:54:14,240 ABOUT FIVE TIMES MORE LIKELY 2995 01:54:14,240 --> 01:54:15,920 THAN AMERICANS WITHOUT 2996 01:54:15,920 --> 01:54:17,520 DISABILITY TO REPORT FAIR OR 2997 01:54:17,520 --> 01:54:20,160 POOR HEALTH AND SIX TIMES MORE 2998 01:54:20,160 --> 01:54:21,960 LIKELY TO REPORT 14 OR MORE 2999 01:54:21,960 --> 01:54:23,600 PHYSICALLY UNHEALTHY DAYS IN THE 3000 01:54:23,600 --> 01:54:25,200 LAST 30 DAYS AND THEY'RE ABOUT 3001 01:54:25,200 --> 01:54:27,040 FOUR TIMES MORE LIKELY TO REPORT 3002 01:54:27,040 --> 01:54:29,360 14 OR MOR MENTALLY UNHEALTHY 3003 01:54:29,360 --> 01:54:36,080 DAYS IN THE PAST 30 DAYS. 3004 01:54:36,080 --> 01:54:37,840 THIS LOOKS AT DISEASE PREVALENCE 3005 01:54:37,840 --> 01:54:40,400 COMPARED TO THOSE WITHOUT. 3006 01:54:40,400 --> 01:54:42,280 IN EVERY CATEGORY AMERICANS WITH 3007 01:54:42,280 --> 01:54:43,080 DISABILITIES HAVE HIGHER RATES 3008 01:54:43,080 --> 01:54:45,800 OF THESE CONDITIONS. 3009 01:54:45,800 --> 01:54:46,840 AMERICANS WITH DISABILITIES ARE 3010 01:54:46,840 --> 01:54:48,600 FIVE TIMES MORE LIKELY TO REPORT 3011 01:54:48,600 --> 01:54:50,000 HAVING HAD I STROKE AND THREE 3012 01:54:50,000 --> 01:54:51,320 TIMES MORE LIKELY TO REPORT 3013 01:54:51,320 --> 01:54:53,960 HEART DISEASE, ALMOST TWICE AS 3014 01:54:53,960 --> 01:54:56,720 LIKELY OBESITY OR HYPERTENSION. 3015 01:54:56,720 --> 01:54:58,520 TWICE AS LIKELY TO REPORT ASTHMA 3016 01:54:58,520 --> 01:55:00,600 OR DIABETES. 3017 01:55:00,600 --> 01:55:02,120 THREE TIMES MORE LIKELY TO 3018 01:55:02,120 --> 01:55:03,760 REPORT HAVING DEPRESSION AND 3019 01:55:03,760 --> 01:55:06,440 MORE THAN TWICE AS LIKELY TO 3020 01:55:06,440 --> 01:55:06,880 SMOKE. 3021 01:55:06,880 --> 01:55:07,720 I CHOSE THESE CONDITIONS AGAIN 3022 01:55:07,720 --> 01:55:09,080 FROM THE DISABILITY AND HEALTH 3023 01:55:09,080 --> 01:55:10,400 DATA SYSTEM BECAUSE THESE ARE 3024 01:55:10,400 --> 01:55:12,280 CONDITIONS THAT ARE LARGELY 3025 01:55:12,280 --> 01:55:14,200 PREVENTABLE WITH GOOD ACCESS TO 3026 01:55:14,200 --> 01:55:15,480 PREVENTATIVE CARE. 3027 01:55:15,480 --> 01:55:16,200 UNFORTUNATELY, MANY PEOPLE DON'T 3028 01:55:16,200 --> 01:55:18,080 HAVE THAT ACCESS AND MANY PEOPLE 3029 01:55:18,080 --> 01:55:19,720 ON DISABILITIES DON'T HAVE THAT 3030 01:55:19,720 --> 01:55:20,760 ACCESS. 3031 01:55:20,760 --> 01:55:22,120 AND I ALSO THREW IN THE SMOKING 3032 01:55:22,120 --> 01:55:24,280 PIECE BECAUSE RESEARCH HAS SHOWN 3033 01:55:24,280 --> 01:55:28,480 THAT PHYSICIANS ARE LESS ASK 3034 01:55:28,480 --> 01:55:30,880 PEOPLE WITH DISABILITIES WHETHER 3035 01:55:30,880 --> 01:55:33,480 THEY SMOKE AND LESS LIKELY TO 3036 01:55:33,480 --> 01:55:36,040 RECOMMEND STOP SMOKING THAN 3037 01:55:36,040 --> 01:55:43,760 PATIENTS WITHOUT DISABILITIES. 3038 01:55:43,760 --> 01:55:44,960 SO WHAT ARE SOME OF THOSE 3039 01:55:44,960 --> 01:55:46,080 BARRIERS OF HEALTH. 3040 01:55:46,080 --> 01:55:47,520 THERE ARE BARRIERS FOR EVERYONE 3041 01:55:47,520 --> 01:55:48,840 TO HEALTHCARE AND ONE WAY OR 3042 01:55:48,840 --> 01:55:50,480 ANOTHER BUT THERE ARE ADDITIONAL 3043 01:55:50,480 --> 01:55:52,400 BARRIERS OF EXPERIENCE BY PEOPLE 3044 01:55:52,400 --> 01:55:53,000 WITH DISABILITIES. 3045 01:55:53,000 --> 01:55:55,120 THEY CAN BE CATEGORIZED INTO 3046 01:55:55,120 --> 01:55:57,280 THREE BROAD GROUPS. 3047 01:55:57,280 --> 01:56:00,200 ENVIRONMENTAL, PROGRAMMATIC AND 3048 01:56:00,200 --> 01:56:00,560 ATTITUDE NAL. 3049 01:56:00,560 --> 01:56:02,120 ENVIRONMENTAL BARRIERS ARE LACK 3050 01:56:02,120 --> 01:56:03,840 OF FACILITIES THAT MEET 3051 01:56:03,840 --> 01:56:04,840 ACCESSIBILITY GUIDELINES AND 3052 01:56:04,840 --> 01:56:06,320 THIS IS NOT COMPLICATED STUFF 3053 01:56:06,320 --> 01:56:09,920 IT'S NOT ROCKET SCIENCE AND FOR 3054 01:56:09,920 --> 01:56:12,000 EXAMPLE, MANY EXAM ROOMS DON'T 3055 01:56:12,000 --> 01:56:13,480 HAVE A SET OF ROLL ON CALLS FOR 3056 01:56:13,480 --> 01:56:15,520 SOMEONE WHO USES A WHEELCHAIR OR 3057 01:56:15,520 --> 01:56:19,080 SOMEONE WHO USES A WALK TORE GET 3058 01:56:19,080 --> 01:56:21,000 ON TO BE WEIGHED. 3059 01:56:21,000 --> 01:56:24,160 EXAM TABLES ARE ANOTHER BIG 3060 01:56:24,160 --> 01:56:24,400 PROBLEM. 3061 01:56:24,400 --> 01:56:26,480 MY MOTHER AND LATER STAGES OF 3062 01:56:26,480 --> 01:56:28,920 HER LIFE USED A WALKER AND SHE 3063 01:56:28,920 --> 01:56:30,520 HAD BALANCE ISSUES AND JUST 3064 01:56:30,520 --> 01:56:32,080 TAKING THAT ONE BIG STEP TO GET 3065 01:56:32,080 --> 01:56:33,840 ONTO THE EXAM TABLE WAS 3066 01:56:33,840 --> 01:56:35,640 DIFFICULT FOR HER AND THE EXAM 3067 01:56:35,640 --> 01:56:37,240 TABLE WAS SO NARROW SHE WAS 3068 01:56:37,240 --> 01:56:39,280 SCARED SHE WAS GOING TO FALL 3069 01:56:39,280 --> 01:56:40,000 OFF. 3070 01:56:40,000 --> 01:56:41,520 MAKING EQUIPMENT MORE ACCESSIBLE 3071 01:56:41,520 --> 01:56:42,800 TO PEOPLE WITH DISABILITIES, 3072 01:56:42,800 --> 01:56:44,960 WOULD REALLY HELP THEM ACCESS 3073 01:56:44,960 --> 01:56:46,200 THE CARE THEY NEED. 3074 01:56:46,200 --> 01:56:48,440 LACK OF AFFORDABLE AND 3075 01:56:48,440 --> 01:56:49,600 ACCESSIBLE TRANSPORTATION IS A 3076 01:56:49,600 --> 01:56:51,600 HUGE ISSUE FOR PEOPLE WITH 3077 01:56:51,600 --> 01:56:52,800 DISABILITIES. 3078 01:56:52,800 --> 01:56:58,560 IT REFLECTS TH PACKED THEY EXPET 3079 01:56:58,560 --> 01:57:06,440 EVERYONE TOTHE FACT EVERYONESHO. 3080 01:57:06,440 --> 01:57:07,960 WE'LL TALK MORE ABOUT THAT. 3081 01:57:07,960 --> 01:57:09,880 LACK OF KNOWLEDGEABLE 3082 01:57:09,880 --> 01:57:11,480 PROFESSIONALS IS ANOTHER 3083 01:57:11,480 --> 01:57:11,720 BARRIER. 3084 01:57:11,720 --> 01:57:13,000 LACK OF FINANCIAL RESOURCES 3085 01:57:13,000 --> 01:57:14,080 AGAIN IS HUGE. 3086 01:57:14,080 --> 01:57:15,720 PEOPLE WITH DISABILITIES HAVE 3087 01:57:15,720 --> 01:57:17,520 HEALTHCARE COSTS THAT AVERAGE 3088 01:57:17,520 --> 01:57:19,160 FOUR TO SEVEN TIMES THAT OF 3089 01:57:19,160 --> 01:57:23,200 PEOPLE WITHOUT DISABILITIES. 3090 01:57:23,200 --> 01:57:24,080 PROBLEMATICALLY, LACK OF 3091 01:57:24,080 --> 01:57:25,920 SUFFICIENT APPOINTMENT TIMES TO 3092 01:57:25,920 --> 01:57:28,160 ACCOMMODATE PATIENTS WITH SPEECH 3093 01:57:28,160 --> 01:57:30,960 LIMITATIONS IS AN ISSUE. 3094 01:57:30,960 --> 01:57:38,200 AND YOU'LL USE MY MOM. 3095 01:57:38,200 --> 01:57:40,320 SHE HAD A PROFOUND HEARING LOSS 3096 01:57:40,320 --> 01:57:43,080 AND DOCTORS HAD TO SPEAK LOUDLY 3097 01:57:43,080 --> 01:57:45,160 AND SLOWLY AND IT WAS LONGER 3098 01:57:45,160 --> 01:57:48,200 APPOINTMENTS FOR HER AND 3099 01:57:48,200 --> 01:57:49,320 PHYSICIAN ALSO SEE AS MANY 3100 01:57:49,320 --> 01:57:51,360 PATIENTS IN A PARTICULAR DAY BUT 3101 01:57:51,360 --> 01:57:52,440 THE REALITY IS THIS NEEDS TO 3102 01:57:52,440 --> 01:57:54,080 ACCOMMODATE THE NEEDS OF ALL 3103 01:57:54,080 --> 01:57:55,080 PATIENTS AND IF IT'S GOING TO 3104 01:57:55,080 --> 01:57:56,320 TAKE EXTRA TIME WE NEED TO FIND 3105 01:57:56,320 --> 01:58:01,840 A WAY TO DO THAT. 3106 01:58:01,840 --> 01:58:03,120 ANOTHER HUGE SYSTEMS. 3107 01:58:03,120 --> 01:58:04,760 SO OFTEN NOW THE ONLY WAY TO 3108 01:58:04,760 --> 01:58:08,280 ACCESS YOUR DOCTORS AND YOUR 3109 01:58:08,280 --> 01:58:09,840 DOCTOR STAFF, THROUGH THE 3110 01:58:09,840 --> 01:58:11,720 PATIENT PORTAL AND IF IT'S NOT 3111 01:58:11,720 --> 01:58:12,960 ACCESSIBLE AND THE PEOPLE WITH 3112 01:58:12,960 --> 01:58:17,560 DISABILITY DISABILITIES WHO USES 3113 01:58:17,560 --> 01:58:18,360 A CREAN READER. 3114 01:58:18,360 --> 01:58:19,280 THEY DON'T HAVE THE CAPACITY TO 3115 01:58:19,280 --> 01:58:21,600 ASK FOR A REFILL AND SCHEDULE AN 3116 01:58:21,600 --> 01:58:24,400 APPOINTMENT EASILY AND TO 3117 01:58:24,400 --> 01:58:28,440 FOLLOW-UP ON LAB RESULTS AND 3118 01:58:28,440 --> 01:58:35,000 THINGS LIKE THAT SO THESE 3119 01:58:35,000 --> 01:58:36,280 ON-LINE SYSTEMS ARE NOT 3120 01:58:36,280 --> 01:58:38,320 ACCESSIBLE AND LACK OF HEALTH 3121 01:58:38,320 --> 01:58:40,120 INFORMATION AND FORMATS AND USE 3122 01:58:40,120 --> 01:58:42,000 MY MOM ONE LAST TIME AND SHE 3123 01:58:42,000 --> 01:58:44,640 ALSO HAD MACULAR DEGENERATION 3124 01:58:44,640 --> 01:58:48,760 AND I WAS WITH HER WHEN SHE WAS 3125 01:58:48,760 --> 01:58:49,880 SEE A RETINA SPECIALIST AND HE 3126 01:58:49,880 --> 01:58:52,400 DID THE EXAM AND HE WAS TALK TO 3127 01:58:52,400 --> 01:58:54,640 GO HER AFTERWARDS AND HE TOLD 3128 01:58:54,640 --> 01:58:56,840 HER THAT HER DEGENERATION 3129 01:58:56,840 --> 01:59:00,240 PROGRESSED AND SHE WAS LEGALLY 3130 01:59:00,240 --> 01:59:02,920 BLIND AND HE HANDED HER A BRUSH 3131 01:59:02,920 --> 01:59:07,080 ERROR WRITTEN IN 10 POINT FONT 3132 01:59:07,080 --> 01:59:09,600 AND WHICH THE IRONY WAS JUST 3133 01:59:09,600 --> 01:59:10,880 ALMOST LAUGHABLE AND THAT HE 3134 01:59:10,880 --> 01:59:12,920 EXPECTED HER TO SOMEHOW 3135 01:59:12,920 --> 01:59:14,480 MAGICALLY IN HER LEGAL BLINDNESS 3136 01:59:14,480 --> 01:59:18,120 TO BE ABLE TO READ THIS SMALL 3137 01:59:18,120 --> 01:59:19,560 PRINT PRO SURE ABOUT HER 3138 01:59:19,560 --> 01:59:23,440 CONDITION AND SO, REALLY, MAKING 3139 01:59:23,440 --> 01:59:24,480 INFORMATION ACCESSIBLE AND 3140 01:59:24,480 --> 01:59:26,160 PEOPLE WITH DISABILITIES IN A 3141 01:59:26,160 --> 01:59:27,360 FORMATS IS ESSENTIAL IF THEY'RE 3142 01:59:27,360 --> 01:59:29,840 GOING TO BE ABLE TO IMAGINE AGE 3143 01:59:29,840 --> 01:59:32,440 THEIR HEALTH LIAR EVERYONE ELSE. 3144 01:59:32,440 --> 01:59:34,360 MOST IMPORTANTLY THERE ARE 3145 01:59:34,360 --> 01:59:35,160 ATTITUDE NAL BARRIERS TO HELP 3146 01:59:35,160 --> 01:59:37,240 FOR PEOPLE WITH DISABILITIES. 3147 01:59:37,240 --> 01:59:38,840 AND WHAP UNDERSTAND LIES THAT IS 3148 01:59:38,840 --> 01:59:40,560 THAT THERE'S A BELIEVE THAT 3149 01:59:40,560 --> 01:59:42,280 PEOPLE WITH DISABILITIES CANNOT 3150 01:59:42,280 --> 01:59:43,800 BE HEALTHY OR THAT THEY LIVE 3151 01:59:43,800 --> 01:59:45,360 LIFE OF SUCH LOW QUALITY THAT 3152 01:59:45,360 --> 01:59:48,120 HEALTH IS LESS IMPORTANT. 3153 01:59:48,120 --> 01:59:48,960 AND I KNOW NO ONE THINKS THEY 3154 01:59:48,960 --> 01:59:51,560 FEEL THAT WAY. 3155 01:59:51,560 --> 01:59:53,720 BUT WE SAW THIS SO CLEARLY 3156 01:59:53,720 --> 01:59:54,800 DURING THE PANDEMIC AND I WANT 3157 01:59:54,800 --> 01:59:56,160 TO SHOW YOU SOME EXAMPLES. 3158 01:59:56,160 --> 02:00:02,840 SO THE NEXT SLIDE, PLEASE, THESE 3159 02:00:02,840 --> 02:00:05,440 ARE ALL HEADLINES FROM REPUTABLE 3160 02:00:05,440 --> 02:00:15,960 NATIONAL MEDIA SOURCES THAT THEY 3161 02:00:18,000 --> 02:00:22,960 FILE A IN THE COVID-19 PANDEMIC 3162 02:00:22,960 --> 02:00:26,480 AND PEOPLE MAY BE DENIED LIFE 3163 02:00:26,480 --> 02:00:28,240 SAVING CARE UNDER THESE PLANS 3164 02:00:28,240 --> 02:00:31,000 AND THIS ONE SAYS OREGON 3165 02:00:31,000 --> 02:00:34,640 HOSPITALS DIDN'T HAVE SHORTAGES 3166 02:00:34,640 --> 02:00:36,880 WERE WERE IT'S A IMPORTANT 3167 02:00:36,880 --> 02:00:40,040 QUESTION AND I THINK PEOPLE ARE 3168 02:00:40,040 --> 02:00:41,080 WAITING FOR ANSWERS TO THAT 3169 02:00:41,080 --> 02:00:43,160 QUESTION AND I DON'T THINK THERE 3170 02:00:43,160 --> 02:00:44,120 ARE ANY. 3171 02:00:44,120 --> 02:00:45,680 THE LAST HEADLINE SAYS NATIONAL 3172 02:00:45,680 --> 02:00:51,120 COUNCIL ON DISABILITY. 3173 02:00:51,120 --> 02:00:53,280 MICHAEL HICKSON WAS A HUSBAND 3174 02:00:53,280 --> 02:00:54,240 AND FATHER OF FIVE AND HE LIVED 3175 02:00:54,240 --> 02:00:55,880 IN TEXAS AND WENT TO THE 3176 02:00:55,880 --> 02:00:58,120 HOSPITAL FOR A COVID-19 3177 02:00:58,120 --> 02:00:59,960 INFECTION AND AT SOME POINT, THE 3178 02:00:59,960 --> 02:01:01,760 DOCTOR DECIDED THAT THEY WOULD 3179 02:01:01,760 --> 02:01:04,240 NO LONGER TREAT HIS INFECTION 3180 02:01:04,240 --> 02:01:07,520 AND THEY DECIDED TO PUT HIM INTO 3181 02:01:07,520 --> 02:01:10,560 HOSPICE CARE AGAINST THE 3182 02:01:10,560 --> 02:01:11,880 EXPRESSED DESIRES OF HIS LIFE 3183 02:01:11,880 --> 02:01:14,560 WHO ASKED HE CONTINUE TO BE 3184 02:01:14,560 --> 02:01:17,640 CARED FOR AND TREATED FOR HIS 3185 02:01:17,640 --> 02:01:18,720 COVID-19 INFECTION. 3186 02:01:18,720 --> 02:01:20,680 HE DID DIE LEAVING BEHIND HIS 3187 02:01:20,680 --> 02:01:31,080 WIFE AND FIVE CHILDREN. 3188 02:01:31,080 --> 02:01:33,240 NEXT SLIDE, PLEASE. 3189 02:01:33,240 --> 02:01:34,800 SO, THE SLIDE JUST LISTED SOME 3190 02:01:34,800 --> 02:01:36,080 OF THE PANDEMIC RELATED 3191 02:01:36,080 --> 02:01:37,640 DISPARITIES FOR PEOPLE WITH 3192 02:01:37,640 --> 02:01:38,440 DISABILITIES. 3193 02:01:38,440 --> 02:01:40,080 PEOPLE WITH DISABILITIES AS WE 3194 02:01:40,080 --> 02:01:41,840 SAW IN THIS HEADLINE WERE REAGED 3195 02:01:41,840 --> 02:01:45,080 OUT OF HEALTHCARE ON THE BASIS 3196 02:01:45,080 --> 02:01:48,240 OF DISCRIMINATORY ALGORITHMS AND 3197 02:01:48,240 --> 02:01:49,880 HAVING LENT LATERS CON IF TASE 3198 02:01:49,880 --> 02:01:52,640 ITPHYSICAL INDICATED. 3199 02:01:52,640 --> 02:01:54,480 IF A PERSON WHO USED A PERSONAL 3200 02:01:54,480 --> 02:01:55,960 VENTILATOR WENT TO THE HOSPITAL 3201 02:01:55,960 --> 02:01:58,080 FOR COVID TREATMENT, THAT THEIR 3202 02:01:58,080 --> 02:01:59,520 PERSONAL VENTILATOR COULD BE 3203 02:01:59,520 --> 02:02:00,880 CONFISCATED FROM THEM AND USED 3204 02:02:00,880 --> 02:02:02,560 FOR TREATMENT OF SOMEONE WHO WAS 3205 02:02:02,560 --> 02:02:05,800 MORE WORTHY OF IT, AN ABLE 3206 02:02:05,800 --> 02:02:06,440 BODIED PERSON. 3207 02:02:06,440 --> 02:02:08,040 PEOPLE WITH DISABILITIES ARE 3208 02:02:08,040 --> 02:02:10,360 OFTEN NOT PRIORITIZED FOR EARLY 3209 02:02:10,360 --> 02:02:11,440 VACCINES THOUGH THEY WERE AT 3210 02:02:11,440 --> 02:02:13,800 HIGH-RISK FOR INFECTION IN 3211 02:02:13,800 --> 02:02:14,520 DEATH. 3212 02:02:14,520 --> 02:02:16,080 PEOPLE WHO USE ATTENDED CARE IN 3213 02:02:16,080 --> 02:02:20,040 THEIR HOMES W HOME WERE UNABLE D 3214 02:02:20,040 --> 02:02:21,560 WORKERS SO PEOPLE WHO RELY ON 3215 02:02:21,560 --> 02:02:22,840 WORKERS TO HELP THEM WITH 3216 02:02:22,840 --> 02:02:25,240 ACTIVITIES OF DAILY LIVING LIKE 3217 02:02:25,240 --> 02:02:27,000 BATHING AND EATING COULD NOT GET 3218 02:02:27,000 --> 02:02:29,080 WORKERS TO COME INTO THEIR HOMES 3219 02:02:29,080 --> 02:02:30,680 BECAUSE OF THE FEAR THEY MIGHT 3220 02:02:30,680 --> 02:02:32,840 GET THE VIRUS. 3221 02:02:32,840 --> 02:02:34,320 SO, BECAUSE THOSE WORKERS WERE 3222 02:02:34,320 --> 02:02:35,720 NOT PRIORITIZED FOR VACCINES 3223 02:02:35,720 --> 02:02:36,920 THEY DIDN'T REPORT TO WORK AND 3224 02:02:36,920 --> 02:02:38,200 PEOPLE WITH DISABILITIES AND 3225 02:02:38,200 --> 02:02:39,960 MANY CASES WERE LEFT LYING IN 3226 02:02:39,960 --> 02:02:41,960 THEIR BEDS, SOMETIMES IN THEIR 3227 02:02:41,960 --> 02:02:43,760 OWN EXCREMENT WITHOUT FOOD OR 3228 02:02:43,760 --> 02:02:44,760 WATER BECAUSE THEIR WORKERS 3229 02:02:44,760 --> 02:02:45,960 WOULDN'T SHOW UP. 3230 02:02:45,960 --> 02:02:49,200 IT WAS AWFUL. 3231 02:02:49,200 --> 02:02:51,200 RELATE TO THAT WEB SITES FOR 3232 02:02:51,200 --> 02:02:52,280 SCHEDULING VACCINES WERE 3233 02:02:52,280 --> 02:02:53,560 INACCESSIBLE AND MANY PEOPLE 3234 02:02:53,560 --> 02:02:55,000 WITH DISABILITIES DON'T HAVE 3235 02:02:55,000 --> 02:02:56,960 INTERNET ACCESS ANYWAY. 3236 02:02:56,960 --> 02:02:59,440 THERE WAS A STUDY THAT SHOWED 3237 02:02:59,440 --> 02:03:00,680 EVERY VACCINE SITE IN THE 3238 02:03:00,680 --> 02:03:02,480 COUNTRY WAS INACCESSIBLE FOR 3239 02:03:02,480 --> 02:03:03,920 PEOPLE WHO WERE BLIND AND IF YOU 3240 02:03:03,920 --> 02:03:06,840 DON'T HAVE INTERNET ACCESS, 3241 02:03:06,840 --> 02:03:08,440 THAT'S THE ONLY WAY YOU COULD 3242 02:03:08,440 --> 02:03:09,680 SCHEDULE A VACCINE APPOINTMENT 3243 02:03:09,680 --> 02:03:11,560 IT WAS PROBLEMATIC. 3244 02:03:11,560 --> 02:03:12,360 DESPITE LAWS TO SUPPORT 3245 02:03:12,360 --> 02:03:14,240 COMMUNITY LIVING FOR PEOPLE WITH 3246 02:03:14,240 --> 02:03:16,080 DISABILITIES, MANY ARE FORCED 3247 02:03:16,080 --> 02:03:18,600 INTO CONGREGATE CARE WITH DEATH 3248 02:03:18,600 --> 02:03:19,360 RATES WERE HIGH. 3249 02:03:19,360 --> 02:03:22,000 PEOPLE IN NURSING HOMES 3250 02:03:22,000 --> 02:03:23,240 EXPERIENCED TERRIBLE COVID 3251 02:03:23,240 --> 02:03:25,720 OUTCOMES AND INFECTION RATES AND 3252 02:03:25,720 --> 02:03:25,960 DEATHS. 3253 02:03:25,960 --> 02:03:27,520 BUT I DON'T THINK A LOT OF 3254 02:03:27,520 --> 02:03:28,800 PEOPLE ONLY APPRECIATE THAT MANY 3255 02:03:28,800 --> 02:03:30,120 OF THE PEOPLE LIVING IN THOSE 3256 02:03:30,120 --> 02:03:32,640 NURSING HOMES ARE CONGREGATE 3257 02:03:32,640 --> 02:03:34,880 SETTINGS ARE YOUNGER PEOPLE WITH 3258 02:03:34,880 --> 02:03:35,560 DISABILITIES SO THEY WERE 3259 02:03:35,560 --> 02:03:39,800 AFFECTED AS THE OLDER POPULATION 3260 02:03:39,800 --> 02:03:42,880 WAS. 3261 02:03:42,880 --> 02:03:44,240 SO GETTING BACK TO BROADER 3262 02:03:44,240 --> 02:03:45,400 HEALTH DISPARITIES WITH PEOPLE 3263 02:03:45,400 --> 02:03:47,720 WITH DISABILITIES NOT DURING THE 3264 02:03:47,720 --> 02:03:49,600 PANDEMIC. 3265 02:03:49,600 --> 02:03:51,600 THERE ARE MANY THINGS TO LOOK 3266 02:03:51,600 --> 02:03:51,960 AT. 3267 02:03:51,960 --> 02:03:54,080 THIS IS DATA FROM THE NATIONAL 3268 02:03:54,080 --> 02:03:55,760 HEALTH INTERVIEW SURVEY AND THE 3269 02:03:55,760 --> 02:03:58,920 RESPECT OR SURVEILLANCE SYSTEM, 3270 02:03:58,920 --> 02:04:00,040 THE NATIONAL CRIME AND 3271 02:04:00,040 --> 02:04:01,240 VICTIMIZATION SERVICE AND THE 3272 02:04:01,240 --> 02:04:02,600 HOUSE OF DISABILITY AND 3273 02:04:02,600 --> 02:04:03,240 EMPLOYMENT POLICY. 3274 02:04:03,240 --> 02:04:05,040 THE FIRST IS DO NOT GET NEEDED 3275 02:04:05,040 --> 02:04:07,160 MEDICAL CARE DUE TO COST AND 3276 02:04:07,160 --> 02:04:08,280 PEOPLE WITH DISABILITIES ARE 3277 02:04:08,280 --> 02:04:09,800 THREE TIMES MORE LIKELY TO NOT 3278 02:04:09,800 --> 02:04:11,760 GET NEEDED MEDICAL CARE DUE TO 3279 02:04:11,760 --> 02:04:13,800 COST IN THIS COUNTRY. 3280 02:04:13,800 --> 02:04:15,920 WOMEN WHO ARE CURRENT WITH THEIR 3281 02:04:15,920 --> 02:04:19,160 MAMMOGRAMS OR WOMEN CURRENT WITH 3282 02:04:19,160 --> 02:04:20,960 THEIR PAP TEST, WOMEN WITH 3283 02:04:20,960 --> 02:04:21,920 DISABILITIES LAG BEHIND ON BOTH 3284 02:04:21,920 --> 02:04:23,240 OF THOSE MEASURES COMPARED TO 3285 02:04:23,240 --> 02:04:24,280 WOMEN WITHOUT DISABILITIES. 3286 02:04:24,280 --> 02:04:26,400 PART OF THAT CAN BE 3287 02:04:26,400 --> 02:04:28,200 TRANSPORTATION, BUT PART OF IT 3288 02:04:28,200 --> 02:04:30,080 CAN BE THAT EQUIPMENT IS NOT 3289 02:04:30,080 --> 02:04:32,440 ACCESSIBLE TO THEM AND ANY OF 3290 02:04:32,440 --> 02:04:34,440 YOU HAVE HAD TO GET A MAMMOGRAM, 3291 02:04:34,440 --> 02:04:36,160 YOU HAVE TO STAND UP AND PUT 3292 02:04:36,160 --> 02:04:39,920 YOUR ARMS AROUND THE MAMMOGRAM 3293 02:04:39,920 --> 02:04:41,480 MACHINE AND IF YOU USE A 3294 02:04:41,480 --> 02:04:42,560 WHEELCHAIR OR WHATEVER REASON 3295 02:04:42,560 --> 02:04:45,640 CANNOT STAND UP AND FOR WHATEVER 3296 02:04:45,640 --> 02:04:46,320 REASON NOT WRAP YOUR HANDS 3297 02:04:46,320 --> 02:04:47,760 AROUND THE MACHINE, YOU MAY NOT 3298 02:04:47,760 --> 02:04:50,600 NOT ABLE TO GET A GOOD 3299 02:04:50,600 --> 02:04:50,880 MAMMOGRAM. 3300 02:04:50,880 --> 02:04:52,280 SIMILARLY WITH THE A PAP TEST, 3301 02:04:52,280 --> 02:04:54,960 IF IF YOU CAN'T ACCESS THE EXAM 3302 02:04:54,960 --> 02:04:59,920 TABLE OR THE EQUIPMENT THAT YOU 3303 02:04:59,920 --> 02:05:00,920 OTHERS FOR A PAP TEST YOU MAY 3304 02:05:00,920 --> 02:05:03,440 NOT GET A PAP TEST. 3305 02:05:03,440 --> 02:05:04,200 THE NEXT LINE IS SHOWS PEOPLE 3306 02:05:04,200 --> 02:05:05,640 WITH DISABILITIES ARE ABOUT FOUR 3307 02:05:05,640 --> 02:05:06,840 TIMES MORE LIKELY TO BE VICTIMS 3308 02:05:06,840 --> 02:05:09,000 OF VIOLENT CRIMES WHICH PROBABLY 3309 02:05:09,000 --> 02:05:10,440 RESULTS IN MORE PHYSICAL HEALTH 3310 02:05:10,440 --> 02:05:13,320 NEEDS AND PROBABLY MORE MENTAL 3311 02:05:13,320 --> 02:05:13,920 HEALTH NEEDS THAN FOR PEOPLE 3312 02:05:13,920 --> 02:05:24,320 WITHOUT DISABILITIES. 3313 02:05:26,560 --> 02:05:28,080 THIS IS BEING ABLE TO ACCESS 3314 02:05:28,080 --> 02:05:30,040 MEDICAL PROFESSIONALS THAT WAY. 3315 02:05:30,040 --> 02:05:32,960 BUT ALSO DURING THE PANDEMIC, 3316 02:05:32,960 --> 02:05:36,120 TELEHEALTH WAS A REALLY POPULAR 3317 02:05:36,120 --> 02:05:38,040 WAY TO GET HEALTH SERVICES 3318 02:05:38,040 --> 02:05:39,680 WITHOUT RISKING WAITING IN A 3319 02:05:39,680 --> 02:05:41,400 DOCTOR'S OFFICE AND THAT WAS 3320 02:05:41,400 --> 02:05:43,240 GREAT AND I CAN'T SAY ENOUGH 3321 02:05:43,240 --> 02:05:44,920 GOOD THINGS ABOUT HOW MUCH 3322 02:05:44,920 --> 02:05:46,680 TELEHEALTH HELPED PEOPLE WITH 3323 02:05:46,680 --> 02:05:47,360 DISABILITIES ACCESS HEALTHCARE 3324 02:05:47,360 --> 02:05:48,760 IN A WAY THEY HADN'T BEEN ABLE 3325 02:05:48,760 --> 02:05:50,480 TO IN THE PAST, BECAUSE 3326 02:05:50,480 --> 02:05:51,880 TRANSPORTATION IS A BARRIER FOR 3327 02:05:51,880 --> 02:05:53,840 THEM AND HOWEVER, A LOT OF 3328 02:05:53,840 --> 02:05:55,520 PEOPLE WITH DISABILITIES ARE NOT 3329 02:05:55,520 --> 02:05:58,720 ABLE TO TAKE ADVANTAGE OF 3330 02:05:58,720 --> 02:05:59,520 TELEHEALTH OPPORTUNITIES BECAUSE 3331 02:05:59,520 --> 02:06:00,360 THEY DON'T HAVE HOME INTERNET. 3332 02:06:00,360 --> 02:06:02,320 SO WE NEED TO MAKE SURE THAT 3333 02:06:02,320 --> 02:06:05,280 TELEHEALTH IS AVAILABLE NOT ONLY 3334 02:06:05,280 --> 02:06:06,720 OVER THE INTERNET AND WE NEED TO 3335 02:06:06,720 --> 02:06:08,520 BE AWARE OF WAYS TO INCREASE 3336 02:06:08,520 --> 02:06:10,040 ACCESS TO HOME INTERNET OR 3337 02:06:10,040 --> 02:06:12,800 PEOPLE WITH DISABILITIES. 3338 02:06:12,800 --> 02:06:15,000 THE NEXT LINE IS ABOUT ADULT 3339 02:06:15,000 --> 02:06:15,600 EMPLOYMENT AND EMPLOYMENT FOR 3340 02:06:15,600 --> 02:06:17,440 PEOPLE WITH DISABILITIES IN THIS 3341 02:06:17,440 --> 02:06:19,080 COUNTRY HAS ALWAYS BEEN BAD. 3342 02:06:19,080 --> 02:06:20,680 IT'S ALWAYS BEEN LOW. 3343 02:06:20,680 --> 02:06:22,760 YOU CAN SEE THE HUGE DISPARITY 3344 02:06:22,760 --> 02:06:23,760 OF 50 PERCENTAGE POINT BETWEEN 3345 02:06:23,760 --> 02:06:27,400 PEOPLE WITH AND WITHOUT 3346 02:06:27,400 --> 02:06:27,720 DISABILITIES. 3347 02:06:27,720 --> 02:06:29,000 YOU KNOW, EMPLOYMENT IS SUCH AN 3348 02:06:29,000 --> 02:06:30,680 IMPORTANT PART OF SOCIAL 3349 02:06:30,680 --> 02:06:31,480 PARTICIPANTS IN OUR COUNTRY AND 3350 02:06:31,480 --> 02:06:32,760 PEOPLE WITH DISABILITIES DON'T 3351 02:06:32,760 --> 02:06:34,640 HAVE THE SAME OPPORTUNITIES FOR 3352 02:06:34,640 --> 02:06:36,800 THAT BUT ALSO, EMPLOYMENT IS A 3353 02:06:36,800 --> 02:06:38,960 VERY IMPORTANT GATEWAY TO HEALTH 3354 02:06:38,960 --> 02:06:41,880 INSURANCINSURANCE IN OUR COUNTR. 3355 02:06:41,880 --> 02:06:43,400 PEOPLE WHO ARE NOT EMPLOYED 3356 02:06:43,400 --> 02:06:46,120 DON'T HAVE ACCESS TO 3357 02:06:46,120 --> 02:06:46,800 EMPLOYER-BASED HEALTH INSURANCE 3358 02:06:46,800 --> 02:06:48,280 WHICH IS THE DESIRED KIND OF 3359 02:06:48,280 --> 02:06:49,440 INSURANCE TO HAVE IN OUR 3360 02:06:49,440 --> 02:06:50,040 COUNTRY. 3361 02:06:50,040 --> 02:06:52,000 FOR MANY PEOPLE WITH 3362 02:06:52,000 --> 02:06:53,280 DISABILITIES, THEIR LACK OF A 3363 02:06:53,280 --> 02:06:55,800 JOB LOW INCOME FORCES THEM ON TO 3364 02:06:55,800 --> 02:06:57,080 MEDICAID AND MEDICAID CAN BE 3365 02:06:57,080 --> 02:06:58,040 GOODS INSURANCE BUT THERE ARE 3366 02:06:58,040 --> 02:06:59,520 PROBLEMS WITH IT THAT WE'LL TALK 3367 02:06:59,520 --> 02:07:01,280 ABOUT AND SOME PEOPLE WITH 3368 02:07:01,280 --> 02:07:04,280 DISABILITIES NEED MEDICATION AND 3369 02:07:04,280 --> 02:07:05,720 MEDICAID COVERS HOME COMMUNITY 3370 02:07:05,720 --> 02:07:15,480 BASED SERVICES AND AND THE 3371 02:07:15,480 --> 02:07:16,680 PROBLEM IS, SOMETIMES PEOPLE 3372 02:07:16,680 --> 02:07:18,400 WITH DISABILITIES ARE LOCKED 3373 02:07:18,400 --> 02:07:19,840 INTO MEDICAID AND NOT WORKING 3374 02:07:19,840 --> 02:07:21,680 LOCKED INTO POVERTY IN ORDER TO 3375 02:07:21,680 --> 02:07:23,480 BE ABLE TO ACCESS THE HEALTHCARE 3376 02:07:23,480 --> 02:07:25,000 THAT THEY NEED AND WE'LL TALK A 3377 02:07:25,000 --> 02:07:26,080 LITTLE BIT ABOUT THAT. 3378 02:07:26,080 --> 02:07:28,560 AND FINALLY, YOU KNOW, WITH THAT 3379 02:07:28,560 --> 02:07:30,200 LOW EMPLOYMENT RATE IT'S NOT 3380 02:07:30,200 --> 02:07:31,520 SURPRISING THAT PEOPLE WITH 3381 02:07:31,520 --> 02:07:32,360 DISABILITIES ARE ABOUT THREE 3382 02:07:32,360 --> 02:07:34,920 TIMES MORE LIKELY TO HAVE 3383 02:07:34,920 --> 02:07:36,160 FAMILIES THAT LIVE BELOW THE 3384 02:07:36,160 --> 02:07:46,240 FEDERAL POVERTY LEVEL. 3385 02:07:46,240 --> 02:07:49,000 NEXT SLIDE, PLEASE. 3386 02:07:49,000 --> 02:07:50,480 I'M GOING TO SHIFT GEARS AND 3387 02:07:50,480 --> 02:07:51,600 MOVE AWAY AND TALK A LITTLE BIT 3388 02:07:51,600 --> 02:07:56,400 ABOUT PERSONAL EXPERIENCES AND 3389 02:07:56,400 --> 02:07:58,520 THESE ARE QUOTES FROM KANCARE. 3390 02:07:58,520 --> 02:08:00,840 IT'S THE NAME FOR OUR KANSAS 3391 02:08:00,840 --> 02:08:01,400 MEDICARE PROGRAM. 3392 02:08:01,400 --> 02:08:04,520 IT HAS THREE MANAGED CARE 3393 02:08:04,520 --> 02:08:05,440 ORGANIZATIONS AND THESE QUOTES 3394 02:08:05,440 --> 02:08:06,320 ARE ABOUT TRANSPORTATION. 3395 02:08:06,320 --> 02:08:09,720 THE FEDERAL GOVERNMENT REQUIRES 3396 02:08:09,720 --> 02:08:12,000 STATE MEDICATE PROGRAMS FOR NON 3397 02:08:12,000 --> 02:08:13,320 MEDICAL TRANSPORTATION TO 3398 02:08:13,320 --> 02:08:15,120 MEDICAID AND TO BE ABLE TO 3399 02:08:15,120 --> 02:08:16,720 ACCESS THEIR HEALTH APPOINTMENTS 3400 02:08:16,720 --> 02:08:18,120 AND THESE ARE QUOTES ABOUT 3401 02:08:18,120 --> 02:08:19,520 PEOPLE'S EXPERIENCES TRYING TO 3402 02:08:19,520 --> 02:08:21,720 USE THAT NON EMERGENCY MEDICAL 3403 02:08:21,720 --> 02:08:22,680 TRANSPORTATION. 3404 02:08:22,680 --> 02:08:24,200 SO THE FIRST QUOTE SAYS, WHEN I 3405 02:08:24,200 --> 02:08:26,000 COULD USE IT THEY RAN LATE A 3406 02:08:26,000 --> 02:08:26,640 LOT. 3407 02:08:26,640 --> 02:08:27,480 I DON'T USE IT. 3408 02:08:27,480 --> 02:08:28,840 I CAN'T USE IT BECAUSE THEY 3409 02:08:28,840 --> 02:08:30,720 CHANGED THEIR POLICIES AND THEY 3410 02:08:30,720 --> 02:08:32,200 ONLY ALLOW ONE ADULT AND ONE KID 3411 02:08:32,200 --> 02:08:33,880 IN A TAXI. 3412 02:08:33,880 --> 02:08:36,080 I HAVE TWO YOUNGER KIDS ONE WITH 3413 02:08:36,080 --> 02:08:36,760 AUTISM. 3414 02:08:36,760 --> 02:08:38,280 I CAN'T LEAVE THEM HOME ALONE. 3415 02:08:38,280 --> 02:08:40,400 THE NEXT QUOTE SAYS, THE 3416 02:08:40,400 --> 02:08:41,400 TRANSPORTATION PEOPLE DON'T 3417 02:08:41,400 --> 02:08:44,200 TRANSFER ME CORRECTLY AND I'VE 3418 02:08:44,200 --> 02:08:44,520 GOTTEN HURT. 3419 02:08:44,520 --> 02:08:46,120 SO HERE IS THE IRONY OF A PERSON 3420 02:08:46,120 --> 02:08:47,440 WITH A DISABILITY TRYING TO GET 3421 02:08:47,440 --> 02:08:48,800 TO THE DOCTOR AND JUST TO 3422 02:08:48,800 --> 02:08:51,400 PROCESS OF GETTING A HAS 3423 02:08:51,400 --> 02:08:57,880 RESULTED IN AN INJURY FOR THEM 3424 02:08:57,880 --> 02:08:59,280 MY DOCTOR CHANGED MY APPOINTMENT 3425 02:08:59,280 --> 02:09:01,160 TIME BUT THE ORGANIZATION WON'T 3426 02:09:01,160 --> 02:09:02,160 CHANGE THE PICK UP TIME BECAUSE 3427 02:09:02,160 --> 02:09:06,640 IT'S NOT THREE DAYS NOTICE. 3428 02:09:06,640 --> 02:09:08,960 I WANT TO SHOW BARRIERS TO 3429 02:09:08,960 --> 02:09:09,520 TRANSPORTATION WHEN 3430 02:09:09,520 --> 02:09:11,760 TRANSPORTATION IS PROVIDED BY 3431 02:09:11,760 --> 02:09:13,360 MEDICAID AND ALSO BECAUSE WE 3432 02:09:13,360 --> 02:09:15,160 OFTEN HEAR WE AS RESEARCHER HEAR 3433 02:09:15,160 --> 02:09:17,080 FROM MEDICAL PROVIDERS THAT THEY 3434 02:09:17,080 --> 02:09:19,960 DON'T LIKE TO HAVE PATIENTS WITH 3435 02:09:19,960 --> 02:09:20,960 DISABILITIES BECAUSE OH THEY'RE 3436 02:09:20,960 --> 02:09:23,720 ALWAYS LATE FOR THEIR 3437 02:09:23,720 --> 02:09:24,760 APPOINTMENTS OR THEY DON'T SHOW 3438 02:09:24,760 --> 02:09:27,600 UP, THEY JUST BLOW OFF THEIR 3439 02:09:27,600 --> 02:09:28,080 APPOINTMENT. 3440 02:09:28,080 --> 02:09:30,280 THAT IS A PIECE OF ABLEISM THAT 3441 02:09:30,280 --> 02:09:31,160 I WANT PEOPLE TO ADDRESS IN 3442 02:09:31,160 --> 02:09:33,800 THEIR OWN HEADS AND THEY REALIZE 3443 02:09:33,800 --> 02:09:35,600 THERE'S A REAL SYSTEM I CAN 3444 02:09:35,600 --> 02:09:36,520 REASONS WHY THAT'S HAPPENING AND 3445 02:09:36,520 --> 02:09:38,000 RATHER THAN GETTING MAD AT THE 3446 02:09:38,000 --> 02:09:39,280 PERSON WITH A DISABILITY WHO IS 3447 02:09:39,280 --> 02:09:40,800 TRYING THEIR BEST TO GET TO THE 3448 02:09:40,800 --> 02:09:42,720 DOCTOR MAYBE TRY TO CHANGE THE 3449 02:09:42,720 --> 02:09:46,720 SYSTEM THAT'S CREATING THOSE 3450 02:09:46,720 --> 02:09:56,880 BARRIERS. 3451 02:09:57,560 --> 02:10:02,040 THESE QUOTES AND FIRST PERSON 3452 02:10:02,040 --> 02:10:04,160 SAYS, THEY WILL NOT PAY FOR A 3453 02:10:04,160 --> 02:10:05,400 CONCENTRATOR THAT I NEED TO GO 3454 02:10:05,400 --> 02:10:06,120 TO FOR FOLKS. 3455 02:10:06,120 --> 02:10:08,440 I NEED TO GET EXERCISE TO 3456 02:10:08,440 --> 02:10:08,840 CONTROL MY DIABETES. 3457 02:10:08,840 --> 02:10:10,800 HERE IS A PERSON WHO KNEW THEY 3458 02:10:10,800 --> 02:10:12,600 NEEDED TO EXERCISE TO GET THEIR 3459 02:10:12,600 --> 02:10:14,320 DIABETES UNDERSTAND CONTROL AND 3460 02:10:14,320 --> 02:10:15,880 THEY WANT TODAY DO THAT AND THEY 3461 02:10:15,880 --> 02:10:17,680 APPROACHED MEDICAID AND MEDICAID 3462 02:10:17,680 --> 02:10:18,680 WOULDN'T PROVIDE THE EQUIPMENT 3463 02:10:18,680 --> 02:10:21,440 THEY NEEDED AND IT WAS 3464 02:10:21,440 --> 02:10:22,120 HEALTHCARE EQUIPMENT. 3465 02:10:22,120 --> 02:10:24,880 THE NEXT QUOTE IS, THEY COVER 3466 02:10:24,880 --> 02:10:26,760 CATHETERS BUT THE GEL FOR 3467 02:10:26,760 --> 02:10:28,400 CATHETER INSERTION IS NOT 3468 02:10:28,400 --> 02:10:29,040 COVERED. 3469 02:10:29,040 --> 02:10:31,720 IT'S FIVE OR SIX DOLLARS A TUBE 3470 02:10:31,720 --> 02:10:34,800 BUT IT MAKES NO SENSE. 3471 02:10:34,800 --> 02:10:36,680 I'LL SPEND A MINUTE HERE FOR A 3472 02:10:36,680 --> 02:10:37,000 FEW REASONS. 3473 02:10:37,000 --> 02:10:39,240 FIVE OR SIX DOLLAR A TUBE 3474 02:10:39,240 --> 02:10:40,440 DOESN'T SOUND MUCH BUT PEOPLE 3475 02:10:40,440 --> 02:10:42,440 WITH DISABILITIES ARE LIVING ON 3476 02:10:42,440 --> 02:10:43,600 LESS THAN A THOUSAND DOLLARS A 3477 02:10:43,600 --> 02:10:45,160 MONTH AND FIVE OR SIX DOLLARS A 3478 02:10:45,160 --> 02:10:47,160 TUBE CAN BE A BIG DEAL. 3479 02:10:47,160 --> 02:10:48,480 IF YOU ADD IT UP WITH ALL THE 3480 02:10:48,480 --> 02:10:49,480 OTHER THINGS THAT THEY HAVE TO 3481 02:10:49,480 --> 02:10:51,720 PAY FOR OUT OF THAT VERY LIMITED 3482 02:10:51,720 --> 02:10:54,680 INCOME. 3483 02:10:54,680 --> 02:10:56,800 ALSO, YOU ARE INARY TRACT 3484 02:10:56,800 --> 02:10:57,720 INFECTIONS AND BLADDER 3485 02:10:57,720 --> 02:10:59,040 INFECTIONS ARE A BIG DEAL. 3486 02:10:59,040 --> 02:11:00,280 THEY KILL PEOPLE. 3487 02:11:00,280 --> 02:11:01,960 I HAD A GOOD FRIEND AND 3488 02:11:01,960 --> 02:11:05,120 COLLEAGUE WHO WAS PARAPLEGIC WHO 3489 02:11:05,120 --> 02:11:10,560 HAD A YOU URINARY TRACT I AM FT 3490 02:11:10,560 --> 02:11:17,080 INFECTION.IT'S PENNY WISE AND PD 3491 02:11:17,080 --> 02:11:20,360 FOOLISH AND NOT THE GEL AND IT'S 3492 02:11:20,360 --> 02:11:21,920 REALLY JUST INHUMANE. 3493 02:11:21,920 --> 02:11:25,240 AND FINALLY, THE LAST QUOTE, I 3494 02:11:25,240 --> 02:11:28,040 USE A WHEELCHAIR AND GET 3495 02:11:28,040 --> 02:11:30,400 PRESSURE SORES ON MY FEET. 3496 02:11:30,400 --> 02:11:32,360 I NEED AN INSERT TO STOP THE AND 3497 02:11:32,360 --> 02:11:34,280 I WAIT AND GO TO THE DOCTOR FOR 3498 02:11:34,280 --> 02:11:37,080 THEM TO FIX THE AFTERMATH. 3499 02:11:37,080 --> 02:11:38,400 AGAIN, SOMEONE TRYING TO DO THE 3500 02:11:38,400 --> 02:11:40,400 RIGHT THING AND THE SYSTEM NOT 3501 02:11:40,400 --> 02:11:41,280 ALLOWING THEM TO. 3502 02:11:41,280 --> 02:11:43,760 AND I PUT THESE THREE QUOTES IN 3503 02:11:43,760 --> 02:11:45,080 HERE BECAUSE ANOTHER THING WE 3504 02:11:45,080 --> 02:11:46,560 HEAR FROM PROVIDERS IS, I DON'T 3505 02:11:46,560 --> 02:11:47,960 LIKE TO HAVE PATIENTS WITH 3506 02:11:47,960 --> 02:11:48,840 DISABILITIES BECAUSE THEY DON'T 3507 02:11:48,840 --> 02:11:50,080 FOLLOW THROUGH ON MY 3508 02:11:50,080 --> 02:11:54,320 RECOMMENDATIONS AND THEY'RE NOT 3509 02:11:54,320 --> 02:11:58,720 COMPLIANT WITH THE ORDERS THAT I 3510 02:11:58,720 --> 02:11:59,840 GAVE THEM. 3511 02:11:59,840 --> 02:12:02,080 I JUST WANT TO PUT THAT INTO 3512 02:12:02,080 --> 02:12:03,400 CONTEXT FOR PEOPLE WITH 3513 02:12:03,400 --> 02:12:04,320 DISABILITIES AND THEY ARE DOING 3514 02:12:04,320 --> 02:12:05,520 THE BEST THEY CAN WITH THE 3515 02:12:05,520 --> 02:12:06,440 COVERAGE THAT THEY HAVE AND WITH 3516 02:12:06,440 --> 02:12:10,920 THE INCOME THAT THEY HAVE. 3517 02:12:10,920 --> 02:12:12,320 SO, I THINK I'M GOING TO END 3518 02:12:12,320 --> 02:12:12,800 THERE. 3519 02:12:12,800 --> 02:12:19,640 NEXT SLIDE, PLEASE. 3520 02:12:19,640 --> 02:12:22,040 THE FIRST IS A QUOTE IN JUDE YOU 3521 02:12:22,040 --> 02:12:24,400 HUMAN WHO PASSED AWAY AND JUDY 3522 02:12:24,400 --> 02:12:26,480 SAID, DISABILITY ONLY BECOMES A 3523 02:12:26,480 --> 02:12:27,920 TRAGEDY WHEN SOCIETY FAILS TO 3524 02:12:27,920 --> 02:12:29,280 PROVIDE THE THINGS WE NEED TO 3525 02:12:29,280 --> 02:12:32,520 LEAD OUR LIVES. 3526 02:12:32,520 --> 02:12:34,720 WELL, I PERSONALLY AGREE TOTALLY 3527 02:12:34,720 --> 02:12:36,400 THAT IT'S NOT A TRAGEDY TO HAVE 3528 02:12:36,400 --> 02:12:37,480 A DISABILITY, NOT AT ALL. 3529 02:12:37,480 --> 02:12:39,480 MY DIS A LOT IS PART OF WHO I 3530 02:12:39,480 --> 02:12:39,960 AM. 3531 02:12:39,960 --> 02:12:42,720 IT IS A TRAGEDY WHEN YOU ARE 3532 02:12:42,720 --> 02:12:44,880 DISABILITY RESULTS IN A SYSTEM 3533 02:12:44,880 --> 02:12:46,440 THAT DOESN'T SUPPORT YOUR NEEDS 3534 02:12:46,440 --> 02:12:48,400 AND IT DOESN'T RECOGNIZE YOU AS 3535 02:12:48,400 --> 02:12:51,680 FULLY HUMAN AND IT DOESN'T, IT 3536 02:12:51,680 --> 02:12:54,440 DOESN'T HESITATE TO DISCRIMINATE 3537 02:12:54,440 --> 02:12:56,080 AGAINST YOU SO DISABILITY IS A 3538 02:12:56,080 --> 02:12:57,280 TRAGEDY WHEN WE DON'T PROVIDE 3539 02:12:57,280 --> 02:12:59,480 THE SERVICES AND SUPPORTS THAT 3540 02:12:59,480 --> 02:13:00,760 PEOPLE NEED AND THE HEALTHCARE 3541 02:13:00,760 --> 02:13:04,280 SERVICES THAT THEY NEED. 3542 02:13:04,280 --> 02:13:05,880 LAST QUOTE, HOW FAR DO YOU WANT 3543 02:13:05,880 --> 02:13:07,200 TO TAKE THIS? 3544 02:13:07,200 --> 02:13:10,120 THIS IS A QUESTION THAT WAS 3545 02:13:10,120 --> 02:13:14,960 ASKED TO A COLLEAGUE OF MINE, 3546 02:13:14,960 --> 02:13:16,960 SHE IS THE GUARDIAN OF A 3547 02:13:16,960 --> 02:13:23,160 GENTLEMAN WITH SER RE CEREBRAL E 3548 02:13:23,160 --> 02:13:24,280 DOCTOR ASKED HER, ARE YOU SURE 3549 02:13:24,280 --> 02:13:25,840 YOU WANT US TO TREAT THIS 3550 02:13:25,840 --> 02:13:27,000 PERSON. 3551 02:13:27,000 --> 02:13:29,040 SO, MY ANSWER TO THAT QUESTION 3552 02:13:29,040 --> 02:13:33,240 IS, WE WANT TO TAKE THIS 3553 02:13:33,240 --> 02:13:34,640 CONVERSATION ABOUT EQUITY AND 3554 02:13:34,640 --> 02:13:35,880 ABLEISM IN MEDICINE AS FAR AS WE 3555 02:13:35,880 --> 02:13:39,160 NEED TO TO AFFECT REAL CHANGE. 3556 02:13:39,160 --> 02:13:40,480 SO, I THANK YOU FOR BEING PART 3557 02:13:40,480 --> 02:13:42,640 OF THAT CONVERSATION AND I LOOK 3558 02:13:42,640 --> 02:13:44,400 FORWARD TO WORKING WITH YOU 3559 02:13:44,400 --> 02:13:45,520 POTENTIALLY IN THE FUTURE TO 3560 02:13:45,520 --> 02:13:48,320 MAKE THOSE CHANGES SO THAT 3561 02:13:48,320 --> 02:13:49,840 ABLEISM IN MEDICINE DOES NOT 3562 02:13:49,840 --> 02:13:51,760 RESULT IN THESE TERRIBLE HEALTH 3563 02:13:51,760 --> 02:13:53,720 DISPARITIES THAT WE SEE. 3564 02:13:53,720 --> 02:13:55,640 I'M GOING TO END IT THERE. 3565 02:13:55,640 --> 02:14:01,080 THE LAST SLIDE IS JUST A LIST OF 3566 02:14:01,080 --> 02:14:01,440 REFERENCES. 3567 02:14:01,440 --> 02:14:02,840 IT BACKS UP SOME OF THE THINGS 3568 02:14:02,840 --> 02:14:03,800 THAT I TALKED ABOUT. 3569 02:14:03,800 --> 02:14:05,280 IF YOU HAVE QUESTIONS THAT NOT 3570 02:14:05,280 --> 02:14:06,880 ANSWERED BY OTHER SPEAKERS 3571 02:14:06,880 --> 02:14:08,360 TODAY, FELL FREE TO CONTACT ME 3572 02:14:08,360 --> 02:14:10,320 AND I WOULD BE HAPPY TO HAVE A 3573 02:14:10,320 --> 02:14:10,960 CONVERSATION WITH YOU. 3574 02:14:10,960 --> 02:14:17,120 THANK YOU, AGAIN. 3575 02:14:17,120 --> 02:14:17,800 >>Adam: ALL RIGHT. 3576 02:14:17,800 --> 02:14:19,120 EVEN THOUGH Dr. HALL IS NOT 3577 02:14:19,120 --> 02:14:21,080 HERE TODAY, I'D LIKE TO THANK 3578 02:14:21,080 --> 02:14:22,160 HER FOR HER EXTENT PRESENTATION. 3579 02:14:22,160 --> 02:14:23,760 AS SHE JUST MENTIONED, IF YOU 3580 02:14:23,760 --> 02:14:24,920 HAVE QUESTIONS FOR HER 3581 02:14:24,920 --> 02:14:26,160 PRESENTATION OR HER RESEARCH TO 3582 02:14:26,160 --> 02:14:28,280 FEEL FREE TO REACH OUT. 3583 02:14:28,280 --> 02:14:29,080 >>>ALL RIGHT. 3584 02:14:29,080 --> 02:14:31,080 MOVING ON OUR NEXT SPEAKER FOR 3585 02:14:31,080 --> 02:14:34,200 THIS SESSION IS Dr. MONICA 3586 02:14:34,200 --> 02:14:35,720 MITRA. 3587 02:14:35,720 --> 02:14:37,080 THE NANCY LUR' MARCH ASSOCIATE 3588 02:14:37,080 --> 02:14:39,200 PROFESSOR OF DISABILITY POLICY 3589 02:14:39,200 --> 02:14:42,320 AND THE LARRY INSTITUTE OF 3590 02:14:42,320 --> 02:14:45,640 DISABILITY POLICY AT BRANDEIS 3591 02:14:45,640 --> 02:14:45,920 UNIVERSITY. 3592 02:14:45,920 --> 02:14:47,520 BY PEOPLE WITH DISABILITIES AND 3593 02:14:47,520 --> 02:14:50,720 IMPACT OF DISABILITIES ON THE 3594 02:14:50,720 --> 02:14:52,200 HEALTHCARE UTILIZATION AND 3595 02:14:52,200 --> 02:14:52,720 OUTCOME. 3596 02:14:52,720 --> 02:14:54,040 SHE WILL PRESENT ON DISABILITY 3597 02:14:54,040 --> 02:14:57,080 AND REPRODUCTIVE HEALTH. 3598 02:14:57,080 --> 02:14:59,640 IF THERE'S TIME SHE WILL ANSWER 3599 02:14:59,640 --> 02:15:00,040 QUESTIONS. 3600 02:15:00,040 --> 02:15:01,200 THANK YOU FOR BEING HERE TODAY. 3601 02:15:01,200 --> 02:15:03,160 THE FLOOR IS YOURS. 3602 02:15:03,160 --> 02:15:03,880 >>GREAT. 3603 02:15:03,880 --> 02:15:10,720 AND THANK YOU FOR IN INVITING ME 3604 02:15:10,720 --> 02:15:15,560 AND CAN EVERYONE SEE THIS? 3605 02:15:15,560 --> 02:15:17,760 >>YES. 3606 02:15:17,760 --> 02:15:21,400 >>SO, TODAY MY NAME IS MONICA 3607 02:15:21,400 --> 02:15:23,360 MITRA I AM A BROWN WOMAN WITH 3608 02:15:23,360 --> 02:15:27,360 DARK HAIR AND WEARING A 3609 02:15:27,360 --> 02:15:29,800 LIGHT-GREEN JACKET AND YOUR 3610 02:15:29,800 --> 02:15:33,040 ACTUAL AND TODAY I'M GOING TO BE 3611 02:15:33,040 --> 02:15:34,680 PRESENTING ON RESEARCH THATEL 3612 02:15:34,680 --> 02:15:39,400 WE'VE BEEN CONDUCTING ON 3613 02:15:39,400 --> 02:15:41,840 PREGNANCY, PERINATAL CARE, 3614 02:15:41,840 --> 02:15:43,200 DISPARITIES, OUTCOMES, 3615 02:15:43,200 --> 02:15:44,880 DISPARITIES AND ACCESS OUTCOMES 3616 02:15:44,880 --> 02:15:46,640 AND AS WELL AS IN THE 3617 02:15:46,640 --> 02:15:49,120 EXPERIENCES AND THE NEEDS OF 3618 02:15:49,120 --> 02:15:49,680 DISABLED PEOPLE. 3619 02:15:49,680 --> 02:15:51,480 I DO WANT TO ACKNOWLEDGE THE 3620 02:15:51,480 --> 02:15:54,720 FUNDING THAT WE RECEIVED FROM 3621 02:15:54,720 --> 02:16:00,320 NIDCD AND TELL YOU THAT NICHD 3622 02:16:00,320 --> 02:16:02,440 FUNDING FOCUSED ON PREGNANCY AND 3623 02:16:02,440 --> 02:16:04,760 A PERINATAL HEALTH OF DISABILITY 3624 02:16:04,760 --> 02:16:06,520 WOMEN AND HAVE A DISABILITY 3625 02:16:06,520 --> 02:16:08,360 PEOPLE AND HAVING INSTRUMENTAL 3626 02:16:08,360 --> 02:16:18,840 IN THE LITERATURE AND I WILL 3627 02:16:20,520 --> 02:16:22,280 PRESENT SOME OF THE RESEARCH 3628 02:16:22,280 --> 02:16:25,280 FROM NIDLER. 3629 02:16:25,280 --> 02:16:28,320 SO, WE KNOW AND THIS WAS 3630 02:16:28,320 --> 02:16:30,760 PRESENTED AND DISCUSSED IN THE 3631 02:16:30,760 --> 02:16:32,680 EARLIER PRESENTATION BY Dr. 3632 02:16:32,680 --> 02:16:35,000 MEGAN MORRIS THAT DISABLED 3633 02:16:35,000 --> 02:16:36,440 PEOPLE AND THEY HAVE BEEN 3634 02:16:36,440 --> 02:16:37,920 RESTRICTED FROM MAKING THEIR OWN 3635 02:16:37,920 --> 02:16:41,560 CHOICES ABOUT STARTING FAMILIES. 3636 02:16:41,560 --> 02:16:43,720 A PART OF THIS IS RELATED TO THE 3637 02:16:43,720 --> 02:16:45,440 EUGENICS MOVEMENT. 3638 02:16:45,440 --> 02:16:48,320 WHERE PEOPLE WITH DISABILITIES 3639 02:16:48,320 --> 02:16:49,800 WERE AND AS WELL AS PEOPLE OF 3640 02:16:49,800 --> 02:16:51,760 COLOR, AND PEOPLE WITH 3641 02:16:51,760 --> 02:16:53,880 DISABILITIES, WERE INVOLUNTARILY 3642 02:16:53,880 --> 02:16:57,080 STERILIZED AND UNABLE TO 3643 02:16:57,080 --> 02:17:00,720 CONCEIVE, UNABLE T FUND THEIR ON 3644 02:17:00,720 --> 02:17:01,640 FAMILIES. 3645 02:17:01,640 --> 02:17:06,120 IN ADDITION, THE FORCES FOR 3646 02:17:06,120 --> 02:17:06,840 STERILIZATION WHICH CONTINUE 3647 02:17:06,840 --> 02:17:08,640 TODAY IN SOME SENSE, HAVE 3648 02:17:08,640 --> 02:17:10,680 PREVENTED DISABLED PEOPLE FROM 3649 02:17:10,680 --> 02:17:18,040 EXERT EXERTING THEIR REPRODUCTIE 3650 02:17:18,040 --> 02:17:20,280 RIGHTS FROM BECOMING PARENTS AND 3651 02:17:20,280 --> 02:17:20,760 STARTING FAMILIES. 3652 02:17:20,760 --> 02:17:22,680 I'LL DISCUSS THIS TODAY AND HOW 3653 02:17:22,680 --> 02:17:24,720 IT'S IMPACTING US AND PEOPLE 3654 02:17:24,720 --> 02:17:25,200 TODAY. 3655 02:17:25,200 --> 02:17:28,000 OF COURSE, THEIR STIGMA AND 3656 02:17:28,000 --> 02:17:30,160 DISCRIMINATION. 3657 02:17:30,160 --> 02:17:33,320 WHEN IT COMES TO STIGMA AND 3658 02:17:33,320 --> 02:17:34,840 DISCRIMINATION FROM HEALTHCARE 3659 02:17:34,840 --> 02:17:36,240 PROVIDERS, FROM SOCIETY AT 3660 02:17:36,240 --> 02:17:38,520 LARGE, FROM PUBLIC-HEALTH 3661 02:17:38,520 --> 02:17:39,480 PROFESSIONALS, FROM POLICIES 3662 02:17:39,480 --> 02:17:42,760 THAT ARE IMPACTED DISABLED 3663 02:17:42,760 --> 02:17:45,720 PEOPLE AND PREVENT THEM FROM 3664 02:17:45,720 --> 02:17:47,120 CONCEIVING, PREVENT THEM FROM 3665 02:17:47,120 --> 02:17:48,920 BECOMING PREGNANT AND STARTING 3666 02:17:48,920 --> 02:17:54,000 THEIR OWN FAMILIES. 3667 02:17:54,000 --> 02:17:55,720 SO, TODAY, WHAT IS THE LANDSCAPE 3668 02:17:55,720 --> 02:17:56,200 TODAY? 3669 02:17:56,200 --> 02:17:57,160 PEOPLE WITH DISABILITIES 3670 02:17:57,160 --> 02:17:58,840 CONTINUE TO BE DENIED OF THEIR 3671 02:17:58,840 --> 02:18:01,880 RIGHT TO EXPERIENCE THEIR 3672 02:18:01,880 --> 02:18:02,120 SEXUALITY. 3673 02:18:02,120 --> 02:18:04,080 TO HAVE SEXUAL RELATIONSHIPS. 3674 02:18:04,080 --> 02:18:07,280 AND TO FOUND AND MAINTAIN THEIR 3675 02:18:07,280 --> 02:18:07,720 FAMILIES. 3676 02:18:07,720 --> 02:18:10,720 WHAT WE SEE IS THAT PARENTS AND 3677 02:18:10,720 --> 02:18:11,720 PROSPECTIVE PARENTS WITH 3678 02:18:11,720 --> 02:18:13,320 DISABILITIES STILL FACE STIGMA 3679 02:18:13,320 --> 02:18:17,280 REGARDING THEIR DECISION TO HAVE 3680 02:18:17,280 --> 02:18:20,040 CHILDREN. 3681 02:18:20,040 --> 02:18:21,000 THERE'S ENOUGH EVIDENCE POINTING 3682 02:18:21,000 --> 02:18:23,520 TO THE HIGHER RATES OF 3683 02:18:23,520 --> 02:18:25,680 TERMINALLATION PARENTAL RIGHTS 3684 02:18:25,680 --> 02:18:27,800 THAT DISABLED PARENTS FACE. 3685 02:18:27,800 --> 02:18:33,080 AND WHAT IS TROUBLING IS THAT 3686 02:18:33,080 --> 02:18:36,000 DISABLED PARENTS RIGHTS WERE 3687 02:18:36,000 --> 02:18:37,760 TERMINATED BECAUSE OF PARENTAL 3688 02:18:37,760 --> 02:18:38,840 DISABILITY. 3689 02:18:38,840 --> 02:18:42,080 SO, THIS IS AGAIN PARTICULARLY 3690 02:18:42,080 --> 02:18:44,400 TROUBLING AND SOMETHING THAT 3691 02:18:44,400 --> 02:18:47,240 WE'RE TRYING TO WORK ON WITH OUR 3692 02:18:47,240 --> 02:18:51,080 NATIONAL CENTER FOR PARENTS WITH 3693 02:18:51,080 --> 02:18:54,640 DISABILITIES. 3694 02:18:54,640 --> 02:18:56,200 SO I'M GOING TO GIVE YOU 3695 02:18:56,200 --> 02:18:58,760 EVIDENCE WITH PERINATAL WOMEN 3696 02:18:58,760 --> 02:19:00,200 WITH DISABILITIES AND A 3697 02:19:00,200 --> 02:19:01,560 PERCENTAGE PART OF THIS 3698 02:19:01,560 --> 02:19:03,040 PRESENTATION WE WILL USE THE 3699 02:19:03,040 --> 02:19:04,440 WORD WOMEN TO INDICATE BECAUSE 3700 02:19:04,440 --> 02:19:07,160 THESE STUDIES WERE BASED ON 3701 02:19:07,160 --> 02:19:10,800 SECONDARY DATA COLLECTED AND 3702 02:19:10,800 --> 02:19:13,920 USED THE TERM WOMAN BUT WE DO 3703 02:19:13,920 --> 02:19:16,480 NOT IMPLY ONLY WOMAN ARE ABLE TO 3704 02:19:16,480 --> 02:19:18,120 BECOME PREGNANT. 3705 02:19:18,120 --> 02:19:21,920 SO WHILE WE SEE THAT SOCIETY AND 3706 02:19:21,920 --> 02:19:24,680 THE ATTITUDES TO DISABLED PEOPLE 3707 02:19:24,680 --> 02:19:27,880 ARE THEY SHOULD NOT BE PREGNANT, 3708 02:19:27,880 --> 02:19:31,760 THEY CANNOT BECOME PREGNANT, AND 3709 02:19:31,760 --> 02:19:37,440 THE ATTITUDES INFANTILIZED 3710 02:19:37,440 --> 02:19:38,640 DISABLED AND THAT THEY'RE NOT 3711 02:19:38,640 --> 02:19:40,080 SEXUAL. 3712 02:19:40,080 --> 02:19:41,160 HOWEVER, WHAT WE'VE SEEN FROM 3713 02:19:41,160 --> 02:19:44,400 THE DATA IS SIMILAR PROPORTIONS 3714 02:19:44,400 --> 02:19:46,720 OF WOMEN WITH PHYSICAL 3715 02:19:46,720 --> 02:19:47,920 DISABILITIES ARE PREGNANT. 3716 02:19:47,920 --> 02:19:49,800 HOWEVER WHEN WE DIG DEEPER AND 3717 02:19:49,800 --> 02:19:52,320 LOOKING AT THE MATERNAL 3718 02:19:52,320 --> 02:19:52,920 CHARACTERISTICS AMONG DELIVERS 3719 02:19:52,920 --> 02:19:54,960 TO WOMEN WITH INTELLECTUAL WHAT 3720 02:19:54,960 --> 02:19:59,360 WE'RE SEEING IS THAT DISABLED 3721 02:19:59,360 --> 02:20:01,400 WOMEN ARE MORE LIKELY TO SMOKE 3722 02:20:01,400 --> 02:20:02,880 DURING THEIR PREGNANCY, THEY'RE 3723 02:20:02,880 --> 02:20:05,840 LESS LIKELY TO BREASTFEED AT 3724 02:20:05,840 --> 02:20:07,000 DISCHARGE, AND THEY'RE LESS 3725 02:20:07,000 --> 02:20:09,400 LIKELY TO NAME THE FATHER IN THE 3726 02:20:09,400 --> 02:20:10,920 BIRTH CERTIFICATE AND THEY'RE 3727 02:20:10,920 --> 02:20:20,960 MORE LIKELY TO HAVE INADEQUATE 3728 02:20:20,960 --> 02:20:22,720 PRE-NATAL CARE AND THESE ALL 3729 02:20:22,720 --> 02:20:24,520 HAVE IMPACTS ON THE MOTHER AND 3730 02:20:24,520 --> 02:20:28,960 THE INFANT. 3731 02:20:28,960 --> 02:20:31,400 WHEN WE LOOKED AT WOMEN WITH 3732 02:20:31,400 --> 02:20:32,960 DEAF AND HARD OF HEARING AND WE 3733 02:20:32,960 --> 02:20:35,400 LOOKED AT BIRTH OUTCOMES OF 3734 02:20:35,400 --> 02:20:37,080 WOMEN DEAF AND HARD AND HEARING 3735 02:20:37,080 --> 02:20:38,560 WE FOUND A SIGNIFICANT 3736 02:20:38,560 --> 02:20:39,200 DISPARITY. 3737 02:20:39,200 --> 02:20:42,280 WE FIND THAT DISABLED WOMEN WHO 3738 02:20:42,280 --> 02:20:43,240 ARE DEAF AND HARD OF HEARING ARE 3739 02:20:43,240 --> 02:20:45,560 MORE LIKELY TO HAVE INFANTS WHO 3740 02:20:45,560 --> 02:20:47,840 ARE LOW BIRTH WEIGHT, VERY LOW 3741 02:20:47,840 --> 02:20:49,480 BIRTH WEIGHT, AS WELL AS INFANTS 3742 02:20:49,480 --> 02:20:51,760 WHO ARE BORN AS PRE TERM. 3743 02:20:51,760 --> 02:20:53,200 WE'VE ALSO LOOKED AT DATA AND 3744 02:20:53,200 --> 02:20:54,960 THIS IS BOTH REALLY 3745 02:20:54,960 --> 02:20:57,040 ADMINISTRATIVE DATA ON HOSPITAL 3746 02:20:57,040 --> 02:20:59,360 DISCHARGE DATA AND ON WOMEN WHO 3747 02:20:59,360 --> 02:21:00,840 ARE INTELLECTUAL DEVELOPMENTS AS 3748 02:21:00,840 --> 02:21:02,280 WELL AS WOMEN WITH OTHER 3749 02:21:02,280 --> 02:21:03,440 DISABILITIES AND WE FOUND 3750 02:21:03,440 --> 02:21:06,520 SIMILAR DISPARITIES AND IT COMES 3751 02:21:06,520 --> 02:21:08,000 TO THE MA TERNE AT 3752 02:21:08,000 --> 02:21:11,440 CHARACTERISTICS OF BIRTH 3753 02:21:11,440 --> 02:21:13,120 OUTCOMES. 3754 02:21:13,120 --> 02:21:17,440 I'M SORRY ABOUT THIS SLIDE. 3755 02:21:17,440 --> 02:21:20,080 WE ALSO EXAM THE PREGNANCY 3756 02:21:20,080 --> 02:21:24,080 COMPLICATIONS THAT WOMEN WITH 3757 02:21:24,080 --> 02:21:24,640 INTELLECTUAL DISABILITIES 3758 02:21:24,640 --> 02:21:24,920 EXPERIENCE. 3759 02:21:24,920 --> 02:21:26,600 WHAT WE FOUND IS COMPARED TO 3760 02:21:26,600 --> 02:21:29,080 WOMEN WITHOUT INTELLECTUAL AND 3761 02:21:29,080 --> 02:21:29,720 DEVELOPMENTAL DISABILITIES WOMEN 3762 02:21:29,720 --> 02:21:32,320 WITH INTELLECTUAL DEVELOPMENT 3763 02:21:32,320 --> 02:21:34,880 HAVE HIGHER RISK FOR HOSPITAL 3764 02:21:34,880 --> 02:21:38,040 DAYS AND VISITS. 3765 02:21:38,040 --> 02:21:39,400 BEFORE THEY ARE GIVING BIRTH AS 3766 02:21:39,400 --> 02:21:40,400 WELL AS AFTER. 3767 02:21:40,400 --> 02:21:42,320 AND THEY'RE ALSO MORE LIKELY TO 3768 02:21:42,320 --> 02:21:45,320 STAY IN THE HOSPITAL LONGER. 3769 02:21:45,320 --> 02:21:47,840 SO, IN THIS SLIDE, THEY'RE 3770 02:21:47,840 --> 02:21:51,320 LOOKING IS AT HOSPITAL 3771 02:21:51,320 --> 02:21:51,960 UTILIZATION. 3772 02:21:51,960 --> 02:21:55,160 WHAT WE FOUND IS WOMEN WITH 3773 02:21:55,160 --> 02:21:57,080 DEVELOPMENTAL DISABILITIES ARE 3774 02:21:57,080 --> 02:22:01,760 SIGNIFICANTLY HIGHER RISK FOR SO 3775 02:22:01,760 --> 02:22:05,120 IN THIS CASE, 56% OF IDD WHO 3776 02:22:05,120 --> 02:22:08,720 HAVE GIVEN BIRTH HAD BOUGHT ONE 3777 02:22:08,720 --> 02:22:10,160 ED VISIT DURING THE PERIOD 3778 02:22:10,160 --> 02:22:12,960 COMPARED TO LESS THAN 30 WOMEN 3779 02:22:12,960 --> 02:22:13,400 WITHOUT INTELLECTUAL 3780 02:22:13,400 --> 02:22:14,920 DEVELOPMENTAL DISABILITIES. 3781 02:22:14,920 --> 02:22:16,280 WE FOUND SIMILAR DIFFERENCES 3782 02:22:16,280 --> 02:22:17,960 WHEN WE LOOKED AT OBSERVATIONAL 3783 02:22:17,960 --> 02:22:19,240 STAYS AND AS WELL AS WHEN WE 3784 02:22:19,240 --> 02:22:22,240 LOOKED AT NON DELIVERY HOSPITAL 3785 02:22:22,240 --> 02:22:22,440 STAYS. 3786 02:22:22,440 --> 02:22:24,160 AND WE ALSO FOUND THAT THE 3787 02:22:24,160 --> 02:22:25,920 AVERAGE LENS OF STATE WAS 3788 02:22:25,920 --> 02:22:27,360 SIGNIFICANTLY HIGHER FOR WOMEN 3789 02:22:27,360 --> 02:22:28,520 WITH INTELLECTUAL AND 3790 02:22:28,520 --> 02:22:34,560 DEVELOPMENTAL DISABILITIES. 3791 02:22:34,560 --> 02:22:37,360 SO SEVERE MATERNAL MORBIDITY AND 3792 02:22:37,360 --> 02:22:39,120 IT'S A PROBLEM IN THE UNITED 3793 02:22:39,120 --> 02:22:40,480 STATES WHAT WE'VE SEEN IS WOMEN 3794 02:22:40,480 --> 02:22:45,000 IN THE U.S. HAS HIGHER RATES OF 3795 02:22:45,000 --> 02:22:47,320 THAN WOMEN FROM OTHER COUNTRIES 3796 02:22:47,320 --> 02:22:48,800 OF SMM. 3797 02:22:48,800 --> 02:22:51,120 SMM IS MULTIPLE, LIFE 3798 02:22:51,120 --> 02:22:52,440 THREATENING OUTCOMES OF LABOR 3799 02:22:52,440 --> 02:22:55,200 AND DELIVERY THAT SIGNIFICANTLY 3800 02:22:55,200 --> 02:22:58,000 IMPACTS AN INDIVIDUAL SHORT AND 3801 02:22:58,000 --> 02:22:59,400 LONG-TERM HEALTH. 3802 02:22:59,400 --> 02:23:00,960 HOWEVER, VERY FEW STUDIES HAVE 3803 02:23:00,960 --> 02:23:02,480 ACTUALLY LOOKED AT SMM AMONG 3804 02:23:02,480 --> 02:23:04,840 WOMEN WITH INTELLECTUAL 3805 02:23:04,840 --> 02:23:05,880 DISABILITIES. 3806 02:23:05,880 --> 02:23:09,920 WHAT WE FOUND IS THAT WOMEN WITH 3807 02:23:09,920 --> 02:23:11,200 INTELLECTUAL AND DEVELOPMENT 3808 02:23:11,200 --> 02:23:12,360 DISABILITIES ARE THREE AND A 3809 02:23:12,360 --> 02:23:15,560 HALF TIMES HIGHER RISK OF SMM 3810 02:23:15,560 --> 02:23:17,960 COMPARED TO NON WOMEN WITHOUT 3811 02:23:17,960 --> 02:23:21,080 INTELLECTUAL AND DEVELOPMENT 3812 02:23:21,080 --> 02:23:21,600 DISABILITIES. 3813 02:23:21,600 --> 02:23:26,520 WHEN WE WERE ADJUSTED FOR CO 3814 02:23:26,520 --> 02:23:27,720 VARIANTS, WE WERE TWICE GREATER 3815 02:23:27,720 --> 02:23:30,160 RISK OF SMM COMPARED TO THEIR 3816 02:23:30,160 --> 02:23:33,080 PEERS WITHOUT INTELLECTUAL AND 3817 02:23:33,080 --> 02:23:36,080 DEVELOPMENTAL DISABILITIES. 3818 02:23:36,080 --> 02:23:37,000 WE ALSO EXAMINED MATERNAL 3819 02:23:37,000 --> 02:23:37,600 MORTALITY. 3820 02:23:37,600 --> 02:23:39,600 SO WE ADJUSTED FOR 3821 02:23:39,600 --> 02:23:40,640 SOCIOECONOMIC, HOSPITAL LEVEL 3822 02:23:40,640 --> 02:23:42,200 AND CLINICAL CHARACTERISTICS AND 3823 02:23:42,200 --> 02:23:44,120 WE FOUND THAT WOMEN WITH IDD 3824 02:23:44,120 --> 02:23:45,880 WERE TWO TIMES AT RISK FROM 3825 02:23:45,880 --> 02:23:47,600 MATERNAL MORTALITY COMPARED TO 3826 02:23:47,600 --> 02:23:49,880 WOMEN WITHOUT INTELLECTUAL AND 3827 02:23:49,880 --> 02:24:00,360 DEVELOPMENTAL DISABILITIES. 3828 02:24:13,760 --> 02:24:16,480 WE LOOK AT DISABILITIES AND BY 3829 02:24:16,480 --> 02:24:17,800 RACE ETHNICITY. 3830 02:24:17,800 --> 02:24:19,840 AND WHAT WE FOUND IS THAT 3831 02:24:19,840 --> 02:24:21,360 SIGNIFICANTLY HIGHER RATES OF 3832 02:24:21,360 --> 02:24:25,400 SMM FOR WOMEN WITH IDD WHO WERE 3833 02:24:25,400 --> 02:24:26,360 NON-HISPANIC AND BLACK. 3834 02:24:26,360 --> 02:24:29,000 WHO WERE HISPANIC AND 3835 02:24:29,000 --> 02:24:30,280 NON-HISPANIC OF OTHER RACES 3836 02:24:30,280 --> 02:24:32,800 COMPARED TO WOMEN WHO WERE 3837 02:24:32,800 --> 02:24:34,080 WHITE, NON-HISPANIC AND 3838 02:24:34,080 --> 02:24:37,640 INTELLECTUAL AND DEVELOPMENTAL 3839 02:24:37,640 --> 02:24:38,200 DISABILITIES. 3840 02:24:38,200 --> 02:24:41,960 WHEN WE LOOKED AT THE UNADJUSTED 3841 02:24:41,960 --> 02:24:44,840 RISK RATIO AND THE ADJUSTED RISK 3842 02:24:44,840 --> 02:24:47,440 RATIOS WE FOUND ASTOUNDING 3843 02:24:47,440 --> 02:24:49,880 DIFFERENCES FOR SMM BETWEEN THE 3844 02:24:49,880 --> 02:24:52,080 DIFFERENT RACIAL ETHNIC MINORITY 3845 02:24:52,080 --> 02:24:53,760 GROUPS AND NON-HISPANIC WHITE 3846 02:24:53,760 --> 02:24:55,320 WOMEN WITH INTELLECTUAL AND 3847 02:24:55,320 --> 02:24:56,560 DEVELOPMENTAL DISABILITIES. 3848 02:24:56,560 --> 02:25:01,080 I JUST WANT TO POINT OUT THESE 3849 02:25:01,080 --> 02:25:01,960 DATA WE'RE USING THE HEALTHCARE 3850 02:25:01,960 --> 02:25:09,080 COST UTILIZATION PROJECT DATA. 3851 02:25:09,080 --> 02:25:12,120 WE'RE ALSO CONDUCTING DATA ON 3852 02:25:12,120 --> 02:25:13,640 MATERNAL MORTALITY AMONG WOMEN 3853 02:25:13,640 --> 02:25:16,640 OF DISABILITY BY THEIR RACE AND 3854 02:25:16,640 --> 02:25:16,880 ETHNICITY. 3855 02:25:16,880 --> 02:25:18,680 THIS DATA IS REALLY SHOCKING. 3856 02:25:18,680 --> 02:25:20,920 WHAT WE'RE SEEING IS AGAIN WOMEN 3857 02:25:20,920 --> 02:25:22,440 WITH NON-HISPANIC AND BLACK, 3858 02:25:22,440 --> 02:25:25,560 WOMEN WHO ARE HISPANIC AND 3859 02:25:25,560 --> 02:25:28,920 NON-HISPANIC OTHER ARE 3860 02:25:28,920 --> 02:25:30,360 RACE/ETHNICITY ARE SIGNIFICANTLY 3861 02:25:30,360 --> 02:25:32,080 HIGHER RISK FOR MATERNAL 3862 02:25:32,080 --> 02:25:33,280 MORTALITY AND WHEN WE LOOK AT 3863 02:25:33,280 --> 02:25:35,200 THE ADJUST FOR CO VARIANTS 3864 02:25:35,200 --> 02:25:39,000 INCLUDING AGE, INSURANCE, MEDIUM 3865 02:25:39,000 --> 02:25:40,560 HOUSEHOLD AND TEACHING STATUS 3866 02:25:40,560 --> 02:25:42,560 AND HOSPITAL REGION AS WELL AS 3867 02:25:42,560 --> 02:25:44,040 THE ADMISSION WE FIND AGAIN 3868 02:25:44,040 --> 02:25:54,520 THESE DISPARITIES REMAIN. 3869 02:25:57,440 --> 02:26:03,600 SO I WANT TO MOVE TO PIVOT TO 3870 02:26:03,600 --> 02:26:05,080 UNDERSTANDING WHY THESE 3871 02:26:05,080 --> 02:26:09,000 DISPARITIES ARE HAPPENING. 3872 02:26:09,000 --> 02:26:11,680 SO WE LOOK AT SURVEY DATA THE 3873 02:26:11,680 --> 02:26:13,760 FINDING IS THESE DISPARITIES 3874 02:26:13,760 --> 02:26:16,040 WHETHER IT'S SEVERE MATERNAL 3875 02:26:16,040 --> 02:26:19,080 MORTALITY WHETHER IT'S SEVERE 3876 02:26:19,080 --> 02:26:22,080 MATERNAL MORBIDITY OR MATERNAL 3877 02:26:22,080 --> 02:26:26,160 MORTALITY OR IT'S BIRTH OUTCOMES 3878 02:26:26,160 --> 02:26:28,080 OR WHETHER IT'S HOSPITALIZATION, 3879 02:26:28,080 --> 02:26:30,600 WHETHER IT'S PREGNANCY 3880 02:26:30,600 --> 02:26:31,720 COMPLICATIONS AND OUTCOMES AND 3881 02:26:31,720 --> 02:26:34,360 WHAT IT DOESN'T TELL US, REALLY, 3882 02:26:34,360 --> 02:26:36,080 IS WHY THESE DISPARITIES EXIST. 3883 02:26:36,080 --> 02:26:37,800 YOU KNOW, WHAT IS NOT TELLING 3884 02:26:37,800 --> 02:26:40,240 US, WHAT ARE THE EXPERIENCES, 3885 02:26:40,240 --> 02:26:42,840 WHAT ARE THE UNMET NEEDS, THE 3886 02:26:42,840 --> 02:26:45,440 BARRIERS TO CARE THAT DISABLED 3887 02:26:45,440 --> 02:26:50,680 WOMEN FACE DURING THEIR 3888 02:26:50,680 --> 02:26:51,520 PREGNANCY. 3889 02:26:51,520 --> 02:26:53,000 AND SO, OVER THE COURSE OF THE 3890 02:26:53,000 --> 02:26:54,680 LAST FEW YEARS WE'VE INTERVIEWED 3891 02:26:54,680 --> 02:26:56,520 WOMEN WITH A PHYSICAL DISABILITY 3892 02:26:56,520 --> 02:26:58,240 AND WOMEN WITH INTELLECTUAL AND 3893 02:26:58,240 --> 02:26:59,520 DEVELOPMENTAL DISABILITIES AND 3894 02:26:59,520 --> 02:27:01,360 WE HAVE INTERVIEWED WOMEN WHO 3895 02:27:01,360 --> 02:27:02,000 ARE DEAF AND HARD OF HEARING. 3896 02:27:02,000 --> 02:27:03,760 AND CURRENTLY WE'RE WORKING ON A 3897 02:27:03,760 --> 02:27:05,920 PROJECT WHERE WE'RE INTERVIEWING 3898 02:27:05,920 --> 02:27:07,760 WOMEN WHO ARE BLACK AND LATINO 3899 02:27:07,760 --> 02:27:09,840 WITH PHYSICAL DISABILITIES. 3900 02:27:09,840 --> 02:27:11,560 BUT OVER ALL OVER THE LAST FEW 3901 02:27:11,560 --> 02:27:14,520 YEARS, REALLY WHEN IT COMES TO 3902 02:27:14,520 --> 02:27:15,680 THE INTERACTION WITH THE 3903 02:27:15,680 --> 02:27:17,640 HEALTH-CARE SYSTEM AND PRE-NATAL 3904 02:27:17,640 --> 02:27:21,360 CARE WHAT WE FOUND IS REALLY 3905 02:27:21,360 --> 02:27:22,040 THREE LARGE THINGS. 3906 02:27:22,040 --> 02:27:23,440 ONE IS THE COMMISSION ATTITUDES. 3907 02:27:23,440 --> 02:27:26,520 THE SECOND IS INACCESSIBLE 3908 02:27:26,520 --> 02:27:27,160 ENVIRONMENTS, PARTICULARLY 3909 02:27:27,160 --> 02:27:28,760 INACCESSIBLE OFFICES AND THE 3910 02:27:28,760 --> 02:27:30,360 THIRD ONE WOMEN HAVE TOLD US IS 3911 02:27:30,360 --> 02:27:32,040 THE LACK OF EDUCATION. 3912 02:27:32,040 --> 02:27:35,720 SO I'M JUST GOING TO DESCRIBE 3913 02:27:35,720 --> 02:27:37,840 SOME OF THE TEAMS THAT HAVE COME 3914 02:27:37,840 --> 02:27:38,280 UP. 3915 02:27:38,280 --> 02:27:41,080 SO WHEN IT CAME TO CLINICIAN 3916 02:27:41,080 --> 02:27:42,920 KNOWLEDGE AND ATTITUDES, MANY OF 3917 02:27:42,920 --> 02:27:44,200 THE WOMEN WE SPOKE TO SAID YOU 3918 02:27:44,200 --> 02:27:45,160 KNOW, SOME OF THE CONDITIONS 3919 02:27:45,160 --> 02:27:47,040 WERE VERY SUPPORTIVE AND 3920 02:27:47,040 --> 02:27:47,960 RESPECTFUL. 3921 02:27:47,960 --> 02:27:49,960 AND THIS IS ONE QUOTE, SHE KNEW 3922 02:27:49,960 --> 02:27:51,840 HOW BAD SHE WANTED TO HAVE A 3923 02:27:51,840 --> 02:27:52,640 BABY AND WAS SUPPORTED. 3924 02:27:52,640 --> 02:27:54,960 I FEEL LIKE SHE TREATS ME LIKE A 3925 02:27:54,960 --> 02:27:57,760 REGULAR PATIENCE AND LIKE I 3926 02:27:57,760 --> 02:27:59,800 DON'T HAVE A DISABILITY. 3927 02:27:59,800 --> 02:28:01,920 BUT LARGELY WHAT IS FOUND IS 3928 02:28:01,920 --> 02:28:03,680 WOMEN OFTEN TALKED ABOUT IS THE 3929 02:28:03,680 --> 02:28:05,440 CLINICIAN VIEWED THEM AS NON 3930 02:28:05,440 --> 02:28:06,120 SEXUAL. 3931 02:28:06,120 --> 02:28:09,120 SO THIS WAS A QUOTE FROM A WOMAN 3932 02:28:09,120 --> 02:28:12,920 WHO HAD GONE TO PRE-NATAL CARE 3933 02:28:12,920 --> 02:28:14,400 APPOINTMENT WITH HER SPOUSE, 3934 02:28:14,400 --> 02:28:15,160 WITH HER HUSBAND. 3935 02:28:15,160 --> 02:28:18,120 THIS IS WHAT SHE WAS TOLD AND 3936 02:28:18,120 --> 02:28:20,600 THIS WAS THE FIRST APPOINTMENT. 3937 02:28:20,600 --> 02:28:22,400 I THINK PROBLEM THE WEIRDEST 3938 02:28:22,400 --> 02:28:23,280 COMMENT WAS FROM MY DOCTOR. 3939 02:28:23,280 --> 02:28:25,400 HE ASKED US HOW WE GOT PREGNANT 3940 02:28:25,400 --> 02:28:33,080 AND IF WE USED A TURKEY BASTER. 3941 02:28:33,080 --> 02:28:37,200 WHEN IT CAME TO SOME OF THE 3942 02:28:37,200 --> 02:28:38,960 OTHER COMMENTS RELATED TO 3943 02:28:38,960 --> 02:28:41,480 CLINICIAN KNOWLEDGE AND 3944 02:28:41,480 --> 02:28:44,040 ATTITUDES, THE FIRST COMMENT I'M 3945 02:28:44,040 --> 02:28:46,400 GOING TO DESCRIBE IS REALLY 3946 02:28:46,400 --> 02:28:49,120 ABOUT A WOMAN WHO HAD GONE FOYER 3947 02:28:49,120 --> 02:28:50,680 A FOR A PRECONCEPTION 3948 02:28:50,680 --> 02:28:51,640 APPOINTMENT AND WE KNOW THAT 3949 02:28:51,640 --> 02:28:53,080 WOMEN IN THE GENERAL POPULATION, 3950 02:28:53,080 --> 02:28:55,160 WOMEN WITH DISABILITIES, REALLY 3951 02:28:55,160 --> 02:29:01,080 RARELY GO FOR PRECONCEPTION 3952 02:29:01,080 --> 02:29:11,560 APPOINTMENTS AND SHE HAD TO 3953 02:29:35,640 --> 02:29:37,080 TEACH THE CLINICIAN ABOUT SORT 3954 02:29:37,080 --> 02:29:40,160 OF HOW TO PROVIDE CARE AND HOW 3955 02:29:40,160 --> 02:29:41,120 TO HAVE THAT PARTICULAR 3956 02:29:41,120 --> 02:29:43,680 DISABILITY. 3957 02:29:43,680 --> 02:29:45,880 SO IT FELT -- IT FELT LIKE THEY 3958 02:29:45,880 --> 02:29:47,000 DIDN'T KNOW. 3959 02:29:47,000 --> 02:29:48,320 I WAS TEACHING THEM A LOT OF 3960 02:29:48,320 --> 02:29:50,960 THINGS WHICH IS NOT TOLD. 3961 02:29:50,960 --> 02:29:52,520 THE OTHER ISSUE IS THAT OFTEN 3962 02:29:52,520 --> 02:29:53,800 WOMEN TALKED ABOUT WAS THE LACK 3963 02:29:53,800 --> 02:29:55,720 OF CARE COORDINATION. 3964 02:29:55,720 --> 02:29:56,960 THEY TALKED ABOUT HOW THEY 3965 02:29:56,960 --> 02:29:59,160 WANTED THEIR CLINICIANS TO 3966 02:29:59,160 --> 02:30:00,840 ACTUALLY TALK TO THEIR OTHER 3967 02:30:00,840 --> 02:30:02,120 CLINICIANS TO TALK TO THEIR 3968 02:30:02,120 --> 02:30:04,840 PRIMARY CARE PROVIDER OR THEIR 3969 02:30:04,840 --> 02:30:06,160 RHUMATOLOGIST AND DISCUSS AND TO 3970 02:30:06,160 --> 02:30:07,600 LEARN ABOUT MORE ABOUT THE 3971 02:30:07,600 --> 02:30:09,000 PERSON'S DISABILITY AND TO LEARN 3972 02:30:09,000 --> 02:30:19,480 MORE ABOUT THE PERSON'S NEEDS. 3973 02:30:25,320 --> 02:30:28,400 WE ALL KNOW THAT THE ADA WAS 3974 02:30:28,400 --> 02:30:30,600 PASSED IN 1990 AND STILL TODAY, 3975 02:30:30,600 --> 02:30:33,320 PEOPLE WITH DISABILITIES ARE 3976 02:30:33,320 --> 02:30:34,960 FACING INACCESSIBLE 3977 02:30:34,960 --> 02:30:35,560 ENVIRONMENTS. 3978 02:30:35,560 --> 02:30:42,880 THE FIRST QUOTE IS REALLY IT NOT 3979 02:30:42,880 --> 02:30:43,800 BEING WEIGHED. 3980 02:30:43,800 --> 02:30:51,200 A LOT PEOPLE AND TO BE 3981 02:30:51,200 --> 02:30:52,600 INITIATIVE IN OUR STUDIES AND 3982 02:30:52,600 --> 02:30:54,920 SOME OF THEM HAD NEVER BEEN 3983 02:30:54,920 --> 02:30:56,440 WEIGHED THEIR ENTIRE LIVES AND 3984 02:30:56,440 --> 02:30:58,760 SO THIS WAS A QUOTE FROM A WOMAN 3985 02:30:58,760 --> 02:31:00,320 WITH A PHYSICAL DISABILITY USED 3986 02:31:00,320 --> 02:31:02,520 A WHEELCHAIR AND SHE SAID, AND 3987 02:31:02,520 --> 02:31:04,640 AFTER YOU REALIZE THAT I ONLY 3988 02:31:04,640 --> 02:31:07,200 PUT ON LIKE NOT EVEN SIX POUNDS 3989 02:31:07,200 --> 02:31:09,200 TO HALF THE PREGNANCY HE SAID, 3990 02:31:09,200 --> 02:31:11,240 I'M NOT WORRIED, I CAN TELL BY 3991 02:31:11,240 --> 02:31:12,720 LOOKING AT THAT YOU ARE AT A 3992 02:31:12,720 --> 02:31:17,240 HEALTHY WEIGHT, YOU ARE OKAY. 3993 02:31:17,240 --> 02:31:20,560 THE SECOND ISSUE RELATED TO JUST 3994 02:31:20,560 --> 02:31:22,240 INACCESSIBLE ENVIRONMENTS AND 3995 02:31:22,240 --> 02:31:24,880 THIS WAS THE SECOND QUOTE WAS 3996 02:31:24,880 --> 02:31:27,520 FROM A WOMAN WHO WAS FROM A 3997 02:31:27,520 --> 02:31:28,960 LITTLE PERSON. 3998 02:31:28,960 --> 02:31:33,440 AND SHE TALKED ABOUT EVEN THE 3999 02:31:33,440 --> 02:31:36,360 SMALLEST -- JUST THE NEED FOR 4000 02:31:36,360 --> 02:31:38,040 ACCESS, THE NEED FOR AN 4001 02:31:38,040 --> 02:31:38,960 ACCESSIBLE ENVIRONMENT WHETHER 4002 02:31:38,960 --> 02:31:41,000 IT WAS PRE-NATAL CARE, DURING 4003 02:31:41,000 --> 02:31:44,560 BIRTH, WHETHER IT'S DURING -- 4004 02:31:44,560 --> 02:31:47,280 YOU KNOW, A POSTPARTUM, THE 4005 02:31:47,280 --> 02:31:49,760 COMPLETE LACK OF ACCESSIBLE 4006 02:31:49,760 --> 02:31:51,240 ENVIRONMENTS, THE LACK OF EVEN 4007 02:31:51,240 --> 02:31:54,080 THE SMALLEST, IN IT CASE IT WAS 4008 02:31:54,080 --> 02:31:57,720 A STOOL SHE NEEDED TO ACCESS 4009 02:31:57,720 --> 02:31:59,360 WHETHER IT'S OF A SINK, WHETHER 4010 02:31:59,360 --> 02:32:04,680 IT'S THE BASS INET IT WAS NEVER 4011 02:32:04,680 --> 02:32:05,320 PROVIDED. 4012 02:32:05,320 --> 02:32:06,680 IT WAS HARD AND TOWARDS THE END 4013 02:32:06,680 --> 02:32:10,280 OF THE PREGNANCY, I WOULD GET A 4014 02:32:10,280 --> 02:32:11,960 STOOL, PUT IT NEXT TO THE CHAIR 4015 02:32:11,960 --> 02:32:14,440 AND PUT IT NEXT TO THE TABLE AND 4016 02:32:14,440 --> 02:32:24,920 STAIR STEP MY WAY UP THERE. 4017 02:32:25,640 --> 02:32:28,040 >>THEY FACED WHEN THEY WENT 4018 02:32:28,040 --> 02:32:29,480 INTO PRE-NATAL CARE AND THEY 4019 02:32:29,480 --> 02:32:30,840 WENT INTO THEIR DELIVERY AND 4020 02:32:30,840 --> 02:32:38,320 INTO PREGNANCY, THEY DIDN'T HAVE 4021 02:32:38,320 --> 02:32:40,640 MUCH INTERACTION, I CAN'T HAVE 4022 02:32:40,640 --> 02:32:42,600 ANYONE TO TURN TO SO THERE WAS 4023 02:32:42,600 --> 02:32:43,760 NOT MUCH INFORMATION ABOUT 4024 02:32:43,760 --> 02:32:44,640 PREGNANCY AND HAVING A 4025 02:32:44,640 --> 02:32:45,680 DISABILITY AND THERE'S NO ONE I 4026 02:32:45,680 --> 02:32:56,240 KNEW WHO WAS DISABLED AND KIDS. 4027 02:33:23,760 --> 02:33:27,360 IF IT'S HOW TO FIND A 4028 02:33:27,360 --> 02:33:28,480 APPROPRIATE PRE-NATAL CARE 4029 02:33:28,480 --> 02:33:29,240 CLINICIAN. 4030 02:33:29,240 --> 02:33:33,040 THEY FOUND CLINICIANS HAD 4031 02:33:33,040 --> 02:33:43,480 NEGATIVE ATTITUDES AND SO OF 4032 02:33:43,480 --> 02:33:44,840 COURSE THEY HAD PROBLEMS FINDING 4033 02:33:44,840 --> 02:33:47,960 CLINICIANS BUT ALSO, WHAT THEY 4034 02:33:47,960 --> 02:33:51,160 FOUND WAS THAT A LOT OF TIMES, 4035 02:33:51,160 --> 02:33:52,560 BECAUSE OF NEGATIVE ATTITUDES, 4036 02:33:52,560 --> 02:33:55,600 THEY HAD TO KEEP SWITCHING 4037 02:33:55,600 --> 02:33:56,040 CLINICIANS. 4038 02:33:56,040 --> 02:33:59,440 WOMEN TALKED ABOUT ACTUALLY 4039 02:33:59,440 --> 02:34:03,640 CENTERTOGO ACROSS STATE LINES TA 4040 02:34:03,640 --> 02:34:05,080 PROVIDERS THEY THOUGHT WAS 4041 02:34:05,080 --> 02:34:09,000 APPROPRIATE FOR THEIR PROVIDING 4042 02:34:09,000 --> 02:34:09,200 CARE. 4043 02:34:09,200 --> 02:34:11,280 A PROVIDER WAS HARDER THAN I 4044 02:34:11,280 --> 02:34:12,280 THOUGHT IT WAS GOING TO BE. 4045 02:34:12,280 --> 02:34:13,880 THE FIRST COUPLE OF APPOINTMENTS 4046 02:34:13,880 --> 02:34:16,120 I HAD, THE OBs WERE NEGATIVE. 4047 02:34:16,120 --> 02:34:18,240 THEY DID NOT REALLY UNDERSTAND 4048 02:34:18,240 --> 02:34:21,640 THIS PARTICULAR DISABILITY SO 4049 02:34:21,640 --> 02:34:23,200 THEY WERE COMING AND SEEING THE 4050 02:34:23,200 --> 02:34:26,800 DISABILITY THAT SOME 4051 02:34:26,800 --> 02:34:29,640 PRECONCEIVED NOTION. 4052 02:34:29,640 --> 02:34:33,360 I WANT TO TALK IN THE NEXT FEW 4053 02:34:33,360 --> 02:34:36,200 SLIDES ABOUT THE BARRIERS TO 4054 02:34:36,200 --> 02:34:38,000 PROVIDING PERINATAL CARE FROM 4055 02:34:38,000 --> 02:34:40,240 THE PERSPECTIVE OF 4056 02:34:40,240 --> 02:34:41,040 PRACTITIONERS. 4057 02:34:41,040 --> 02:34:42,520 WE INTERVIEWED HEALTHCARE 4058 02:34:42,520 --> 02:34:44,080 PRACTITIONERS WHO HAD PROVIDED 4059 02:34:44,080 --> 02:34:46,280 CARE TO WOMEN WITH PHYSICAL 4060 02:34:46,280 --> 02:34:48,360 DISABILITIES AND ALSO TO WOMEN 4061 02:34:48,360 --> 02:34:55,360 WITH INTELLECTUAL DEVELOPMENTS 4062 02:34:55,360 --> 02:35:00,360 AND DEAF AND HARD OF HEARING 4063 02:35:00,360 --> 02:35:03,280 ABOUT WHAT WE FOUND IS THAT 4064 02:35:03,280 --> 02:35:05,480 CLINICIANS REPORTED BARRIERS TO 4065 02:35:05,480 --> 02:35:07,440 PROVIDING QUALITY PERINATAL CARE 4066 02:35:07,440 --> 02:35:09,040 AND HONESTLY THE BARRIERS WOULD 4067 02:35:09,040 --> 02:35:13,800 BE ANALYZING THE BARRIERS FROM E 4068 02:35:13,800 --> 02:35:15,000 PERSPECTIVE OF PRACTITIONERS AND 4069 02:35:15,000 --> 02:35:21,440 THEY OFTEN MIRRORED EACH A AT M. 4070 02:35:21,440 --> 02:35:24,440 WHEN WE PUT THEM IN THESE FOUR 4071 02:35:24,440 --> 02:35:27,680 DIFFERENT LEVELS, PRACTITIONER 4072 02:35:27,680 --> 02:35:29,800 LEVEL BARRIERS AND THIRD BEING 4073 02:35:29,800 --> 02:35:31,720 AND THE FOURTH BEING SCIENTIFIC 4074 02:35:31,720 --> 02:35:33,640 EVIDENCE LEVEL BARRIERS. 4075 02:35:33,640 --> 02:35:36,040 AND IN THE PRACTICE LEVEL 4076 02:35:36,040 --> 02:35:37,000 BARRIERS OFTEN IT CAME DOWN TO 4077 02:35:37,000 --> 02:35:39,320 THE LACK OF TRAINING AND LACK OF 4078 02:35:39,320 --> 02:35:41,720 EDUCATION AND INADEQUATE CARE 4079 02:35:41,720 --> 02:35:44,400 COORDINATION AS WELL AS A LACK 4080 02:35:44,400 --> 02:35:45,680 OF PRACTICE ANTICIPATE OF 4081 02:35:45,680 --> 02:35:48,520 CONFIDENCE PROVIDING PERINATAL 4082 02:35:48,520 --> 02:35:49,480 CARE TO DISSAL PEOPLE. 4083 02:35:49,480 --> 02:35:52,000 WHEN IT CAME TO CLINICAL 4084 02:35:52,000 --> 02:35:53,080 PRACTICE LEVELS, IT WAS 4085 02:35:53,080 --> 02:35:54,040 ACCESSIBILITY AND THIS WAS 4086 02:35:54,040 --> 02:35:58,520 AGAIN, AS I SAID, WE WERE 4087 02:35:58,520 --> 02:35:59,520 DISGUSTED ASK IT WAS AN ISSUE 4088 02:35:59,520 --> 02:36:02,560 WHEN WE INTERVIEWED PEOPLE WITH 4089 02:36:02,560 --> 02:36:03,960 DISABILITIES. 4090 02:36:03,960 --> 02:36:04,560 PRACTITIONERS TALKED ABOUT THE 4091 02:36:04,560 --> 02:36:06,160 LACK OF TRAINING AND EDUCATION 4092 02:36:06,160 --> 02:36:07,360 FOR THEIR OFFICE STAFF. 4093 02:36:07,360 --> 02:36:10,600 REMEMBER, WHEN PEOPLE ARE GOING 4094 02:36:10,600 --> 02:36:12,120 INTO THE OFFICE, THEY MEET THE 4095 02:36:12,120 --> 02:36:12,720 OFFICE STAFF. 4096 02:36:12,720 --> 02:36:14,040 WHETHER IT'S OVER THE TELEPHONE, 4097 02:36:14,040 --> 02:36:16,240 WHEN THEY ENTER THE OFFICE AND 4098 02:36:16,240 --> 02:36:19,000 NOT HAVING OR HAVING OFFICE 4099 02:36:19,000 --> 02:36:22,520 STAFF HAVING ABLEIST ATTITUDES, 4100 02:36:22,520 --> 02:36:24,680 ARE OBVIOUSLY DISTRESSING TO 4101 02:36:24,680 --> 02:36:25,440 DISABLED PEOPLE. 4102 02:36:25,440 --> 02:36:27,520 THE THIRD IS THE SYSTEM LEVEL 4103 02:36:27,520 --> 02:36:28,720 BARRIERS WHEN IT COMES TO TIME 4104 02:36:28,720 --> 02:36:30,880 AND SCHEDULING OF CONSTRAINTS, 4105 02:36:30,880 --> 02:36:32,120 INSURANCE REIMBURSEMENT POLICIES 4106 02:36:32,120 --> 02:36:34,400 AND THE LACK OF TRAINING AND 4107 02:36:34,400 --> 02:36:36,240 EDUCATION, AND AS A SYSTEM WIDE 4108 02:36:36,240 --> 02:36:36,720 ISSUE. 4109 02:36:36,720 --> 02:36:38,960 AND THE FOURTH IS A SCIENTIFIC 4110 02:36:38,960 --> 02:36:41,200 LEVEL BARRIERS WHEN CLINICIANS 4111 02:36:41,200 --> 02:36:44,920 REPORTED WERE LACK OF 4112 02:36:44,920 --> 02:36:46,840 GUIDELINES. 4113 02:36:46,840 --> 02:36:48,080 LACK OF CLINICAL INFORMATION AND 4114 02:36:48,080 --> 02:36:50,240 LACK OF DATA ON PREGNANCY AND 4115 02:36:50,240 --> 02:36:53,720 PARTICULARLY PREGNANCY AMONG 4116 02:36:53,720 --> 02:36:57,240 WOMEN WITH RARE CONDITIONS. 4117 02:36:57,240 --> 02:37:02,280 SOL, WHEN IT CAME TO PRACTICE 4118 02:37:02,280 --> 02:37:03,520 TISH NAL LEVEL BARRIERS IT THIS 4119 02:37:03,520 --> 02:37:05,680 A REPORT FROM A CLINICIAN. 4120 02:37:05,680 --> 02:37:08,680 PHYSICIANS FEEL UNCOMFORTABLE, 4121 02:37:08,680 --> 02:37:09,880 UNTRAINED, UNPREPARED AND THEIR 4122 02:37:09,880 --> 02:37:11,920 OFFICES ARE EQUALLY UNTRAINED 4123 02:37:11,920 --> 02:37:12,360 AND UNPREPARED. 4124 02:37:12,360 --> 02:37:14,360 SO UNFORTUNATELY, THEY, AS 4125 02:37:14,360 --> 02:37:17,160 PATIENTS WITH DISABILITIES AND 4126 02:37:17,160 --> 02:37:24,360 ENTITLED UP IN A OFFICE AND NOT 4127 02:37:24,360 --> 02:37:25,240 BECAUSE THEY HAVE A CLINICAL 4128 02:37:25,240 --> 02:37:27,880 PROBLEM SO AGAIN, YOU WILL SEE 4129 02:37:27,880 --> 02:37:30,080 THE IMPACT OF A LACK THE 4130 02:37:30,080 --> 02:37:32,080 TRAINING, THE IMPACT OF LACK OF 4131 02:37:32,080 --> 02:37:34,200 TRAINING ON DISABILITIES IN 4132 02:37:34,200 --> 02:37:40,440 THROUGHOUT SOMEONE'S MEDICAL 4133 02:37:40,440 --> 02:37:42,360 EDUCATION AND TRAINING AND NOT 4134 02:37:42,360 --> 02:37:45,080 WANT TO GO PROVIDE CARE TO 4135 02:37:45,080 --> 02:37:48,440 DISABILITY WOMEN DURING THEIR 4136 02:37:48,440 --> 02:37:58,760 PREGNANCY. 4137 02:37:58,760 --> 02:38:00,400 OF THEY SOMETIMES GET WEIGHED AT 4138 02:38:00,400 --> 02:38:02,960 OTHER DOCTOR OFFICES THAT ARE 4139 02:38:02,960 --> 02:38:04,280 TAKING CARE OF THEM. 4140 02:38:04,280 --> 02:38:05,840 WE RELY ON THEM IF THEY CAN'T 4141 02:38:05,840 --> 02:38:07,240 GET OUT OF THEIR WHEELCHAIR. 4142 02:38:07,240 --> 02:38:09,320 WHEN WE DISCUSSED THE WOMEN WITH 4143 02:38:09,320 --> 02:38:10,640 PHYSICAL DISABILITIES THEY 4144 02:38:10,640 --> 02:38:12,800 TALKED ABOUT HOW DOCTORS WERE 4145 02:38:12,800 --> 02:38:14,120 EYEBALLING AND WE SEE CLINICIANS 4146 02:38:14,120 --> 02:38:18,520 AND THESE ARE CLINICIANS WHO ARE 4147 02:38:18,520 --> 02:38:21,960 HAVING EXPERIENCE IN PROVIDING 4148 02:38:21,960 --> 02:38:24,360 PERINATAL CARE TALKED ABOUT 4149 02:38:24,360 --> 02:38:25,800 RELYING ON A REPORT IN ANOTHER 4150 02:38:25,800 --> 02:38:27,840 PORT THAT I DIDN'T HAVE HERE A 4151 02:38:27,840 --> 02:38:29,080 WOMAN WITH A PHYSICAL DISABILITY 4152 02:38:29,080 --> 02:38:30,560 TALKED ABOUT A CLINICIAN 4153 02:38:30,560 --> 02:38:32,480 ACTUALLY WANTING THE HUSBAND TO 4154 02:38:32,480 --> 02:38:36,240 PICK HER UP FROM HER WHEELCHAIR. 4155 02:38:36,240 --> 02:38:38,480 AND HAVING THE WOMAN BE WEIGHED 4156 02:38:38,480 --> 02:38:41,440 IN THIS WAY. 4157 02:38:41,440 --> 02:38:42,760 THE SECOND QUOTE HERE IS 4158 02:38:42,760 --> 02:38:46,400 CLINICIAN SAYING I GENERALLY 4159 02:38:46,400 --> 02:38:46,720 JUST EYEBALL. 4160 02:38:46,720 --> 02:38:50,400 WE SPEND AMOUNT OF TIME TALKING 4161 02:38:50,400 --> 02:39:00,600 ABOUT IT. 4162 02:39:09,320 --> 02:39:10,640 THE PRESSURE TO KEEP APPOINTMENT 4163 02:39:10,640 --> 02:39:12,960 TIMES WITHIN THE PRESCRIBED TIME 4164 02:39:12,960 --> 02:39:14,920 SLOTS. 4165 02:39:14,920 --> 02:39:17,360 10 MINUTES, 15 MINUTES. 4166 02:39:17,360 --> 02:39:20,320 WE'RE SO LOCKED INTO THESE 15 TO 4167 02:39:20,320 --> 02:39:21,160 30 MINUTE TIME SLOTS IN MEDICAL 4168 02:39:21,160 --> 02:39:23,760 PRACTICE IT'S VERY HARD FOR ANY 4169 02:39:23,760 --> 02:39:26,160 ONE DOCTOR TO ISOLATE AN HOUR OR 4170 02:39:26,160 --> 02:39:28,400 AN HOUR AND A HALF FOR A PATIENT 4171 02:39:28,400 --> 02:39:28,680 VISITING. 4172 02:39:28,680 --> 02:39:30,600 AND MANY OF THESE PATIENTS WILL 4173 02:39:30,600 --> 02:39:31,480 TAKE AN HOUR. 4174 02:39:31,480 --> 02:39:33,200 SO, OFTEN CLINICIANS ARE FINDING 4175 02:39:33,200 --> 02:39:38,240 THAT YES, YOU KNOW, WE'RE LOCKED 4176 02:39:38,240 --> 02:39:48,720 INTO THESE SLOTS AND THE NEED 4177 02:39:58,600 --> 02:40:00,640 NOR CLINICAL BASED DATA AND THE 4178 02:40:00,640 --> 02:40:03,520 NEED FOR GUIDELINES. 4179 02:40:03,520 --> 02:40:05,480 CLINICIANS TALKED ABOUT 4180 02:40:05,480 --> 02:40:06,280 EXTRAPOLATING DATA FROM NON 4181 02:40:06,280 --> 02:40:07,480 PREGNANT WOMEN WITH DISABILITIES 4182 02:40:07,480 --> 02:40:11,560 AND EVEN PREGNANT WOMAN WITH 4183 02:40:11,560 --> 02:40:22,120 DISABILITIES ALL OF THE TRAINING 4184 02:40:29,000 --> 02:40:31,720 THEY RECEIVED WAS OFTEN JUST BY 4185 02:40:31,720 --> 02:40:33,560 DOING A LEARNING OR HAVING A 4186 02:40:33,560 --> 02:40:44,120 MENTOR OR A PARTNER THEY TELL ME 4187 02:40:54,040 --> 02:40:55,480 EXACTLY WHAT TO DO AND IN THE 4188 02:40:55,480 --> 02:41:02,560 DISABILITY CLINIC, THAT'S NOT 4189 02:41:02,560 --> 02:41:04,400 THE CASE. 4190 02:41:04,400 --> 02:41:05,800 THEY TALK ABOUT THE NEED FOR 4191 02:41:05,800 --> 02:41:07,600 CLINICAL DATA AND GUIDELINES AND 4192 02:41:07,600 --> 02:41:11,880 THAT WILL ENABLE THEM TO PROVIDE 4193 02:41:11,880 --> 02:41:13,560 QUALITY CARE. 4194 02:41:13,560 --> 02:41:15,520 SO I WANT TO END WITH A COUPLE 4195 02:41:15,520 --> 02:41:17,200 THINGS, ONE I CALL THIS 4196 02:41:17,200 --> 02:41:19,200 PRESENTATION A CALL TO ACTION 4197 02:41:19,200 --> 02:41:20,720 FOR IN CONCLUSIVE PERINATAL CARE 4198 02:41:20,720 --> 02:41:22,240 AND THIS GOES TO THE HEART OF 4199 02:41:22,240 --> 02:41:23,320 WHAT THIS CONFERENCE IS ABOUT 4200 02:41:23,320 --> 02:41:25,040 AND WHAT THIS WORKSHOP IS ABOUT. 4201 02:41:25,040 --> 02:41:27,840 WHEN WE TALK ABOUT 4202 02:41:27,840 --> 02:41:28,160 ACCESSIBILITY. 4203 02:41:28,160 --> 02:41:35,400 WE'RE TALKING ABOUT TRAINING 4204 02:41:35,400 --> 02:41:36,840 WE'RE TALKING ABOUT THE NEED FOR 4205 02:41:36,840 --> 02:41:44,600 DATA AND RESEARCH AND WHAT IS 4206 02:41:44,600 --> 02:41:47,720 QUALITY OF CARE. 4207 02:41:47,720 --> 02:41:50,720 FOR EXAMPLE, IS THE PRE-NATAL 4208 02:41:50,720 --> 02:41:52,760 CARE THAT'S PROVIDED TO WOMEN 4209 02:41:52,760 --> 02:41:57,280 AND THIS COUNTRY IS THAT 4210 02:41:57,280 --> 02:41:58,840 ADEQUATE FOR DISABILITY PEOPLE 4211 02:41:58,840 --> 02:42:02,040 AND SOMEONE WITH A DEVELOPMENTAL 4212 02:42:02,040 --> 02:42:03,680 DISABILITY FOR EXAMPLE, WE NEED 4213 02:42:03,680 --> 02:42:08,400 INTERVENTION AND WE NEED TO HAVE 4214 02:42:08,400 --> 02:42:10,720 GUIDELINES ON EFFECTIVE 4215 02:42:10,720 --> 02:42:11,800 COMMUNICATION AND WE NEED 4216 02:42:11,800 --> 02:42:15,800 COMMUNITY BASED SUPPORTS AND 4217 02:42:15,800 --> 02:42:17,600 POLICIES AND PRACTICES THAT 4218 02:42:17,600 --> 02:42:20,880 SUPPORT DISABILITY PEOPLE 4219 02:42:20,880 --> 02:42:23,640 THROUGHOUT THEIR PREGNANCY. 4220 02:42:23,640 --> 02:42:25,440 I WANT TO TELL YOU ABOUT A 4221 02:42:25,440 --> 02:42:26,880 NATIONAL RESOURCE CENTER FOR 4222 02:42:26,880 --> 02:42:27,760 DISABILITY AND PREGNANCY 4223 02:42:27,760 --> 02:42:31,480 RESEARCH AND THIS IS FUNDED 4224 02:42:31,480 --> 02:42:39,120 THROUGH NIDLER VISIT OUR WEBSITE 4225 02:42:39,120 --> 02:42:41,160 AND ABOUT THE PAPERS WE 4226 02:42:41,160 --> 02:42:42,400 PUBLISHED AND PLAIN LANGUAGE AND 4227 02:42:42,400 --> 02:42:47,320 TRAINING AND EDUCATION AND SO I 4228 02:42:47,320 --> 02:42:49,040 WILL PUT THE LINK TO THE WEBSITE 4229 02:42:49,040 --> 02:42:52,480 ON CHAT AND FEEL FREE TO VISIT 4230 02:42:52,480 --> 02:42:52,640 IT. 4231 02:42:52,640 --> 02:42:55,880 I'D LIKE TO END MY PRESENTATIONS 4232 02:42:55,880 --> 02:42:57,520 WITH A QUOTE AND I FIND THIS 4233 02:42:57,520 --> 02:43:00,640 QUOTE TO BE REALLY INCAPSULATING 4234 02:43:00,640 --> 02:43:04,920 A LOT OF THE INTERVIEWS THAT WE 4235 02:43:04,920 --> 02:43:10,200 CONDUCTED AND SHE SAID I LOVED 4236 02:43:10,200 --> 02:43:12,720 EVERY PART OF IT AND I FELT 4237 02:43:12,720 --> 02:43:13,240 HEALTHY. 4238 02:43:13,240 --> 02:43:15,080 I LOVED WHEN I COULD FEEL HER 4239 02:43:15,080 --> 02:43:15,640 MOVING, ESPECIALLY THE 4240 02:43:15,640 --> 02:43:18,720 EXPERIENCE OF GROWING UP WITH A 4241 02:43:18,720 --> 02:43:19,440 DISABILITY. 4242 02:43:19,440 --> 02:43:21,200 AND HAVING SO MANY MESSAGES 4243 02:43:21,200 --> 02:43:22,680 ABOUT WHAT YOUR BODY CAN DO AND 4244 02:43:22,680 --> 02:43:25,680 WE NEED TO FIX THIS AND THIS IS 4245 02:43:25,680 --> 02:43:26,240 ISN'T RIGHT. 4246 02:43:26,240 --> 02:43:28,320 IT WAS A SENSE OF PRIDE ON HOW 4247 02:43:28,320 --> 02:43:35,280 MY BODY DID THIS. 4248 02:43:35,280 --> 02:43:35,880 THANK YOU. 4249 02:43:35,880 --> 02:43:37,280 I'M GOING TO STOP HERE AND LET 4250 02:43:37,280 --> 02:43:38,640 ME KNOW IF YOU WANT TO ANSWER 4251 02:43:38,640 --> 02:43:43,000 QUESTIONS NOW OR LATER. 4252 02:43:43,000 --> 02:43:43,600 >>Adam: YES, THANK YOU VERY 4253 02:43:43,600 --> 02:43:43,800 MUCH. 4254 02:43:43,800 --> 02:43:44,640 WE HAVE A COUPLE QUESTIONS WE 4255 02:43:44,640 --> 02:43:46,040 HAVE TIME FOR AND I CAN READ 4256 02:43:46,040 --> 02:43:49,680 THEM OFF TO YOU IF THAT'S OKAY. 4257 02:43:49,680 --> 02:43:51,960 WHAT IS THE SIGNIFICANCE OF 4258 02:43:51,960 --> 02:43:53,240 MEASURING LIKELIHOOD TO NAME 4259 02:43:53,240 --> 02:43:54,440 BIRTH FATHER OF THE BIRTH 4260 02:43:54,440 --> 02:43:55,000 CERTIFICATE. 4261 02:43:55,000 --> 02:43:56,480 WOULD YOU PROVIDE CONTEXT WHY 4262 02:43:56,480 --> 02:43:59,000 THAT'S AN IMPORTANT METRIC? 4263 02:43:59,000 --> 02:44:03,480 >>SURE, THANK YOU FOR THAT 4264 02:44:03,480 --> 02:44:04,480 QUESTION. 4265 02:44:04,480 --> 02:44:05,840 SO THERE'S BEEN RESEARCH AND 4266 02:44:05,840 --> 02:44:10,480 AGAIN THIS IS A VERY APPROACH 4267 02:44:10,480 --> 02:44:13,680 BUT THERE'S BEEN RESEARCH THE 4268 02:44:13,680 --> 02:44:14,800 INDICATION OF BIRTH FATHER IN A 4269 02:44:14,800 --> 02:44:17,360 BIRTH CERTIFICATE HAS HAD A 4270 02:44:17,360 --> 02:44:20,840 LONG-TERM CONSEQUENCES FOR BOTH 4271 02:44:20,840 --> 02:44:24,680 THE INFANT AND THE MOTHER. 4272 02:44:24,680 --> 02:44:26,240 I DON'T HAVE THE RESEARCH RIGHT 4273 02:44:26,240 --> 02:44:29,400 NOW BUT WE ALSO FOUND IN OUR 4274 02:44:29,400 --> 02:44:30,960 DATA WHICH WAS INTERESTING IS 4275 02:44:30,960 --> 02:44:33,080 THAT WOMEN WITH INTELLECTUAL AND 4276 02:44:33,080 --> 02:44:36,240 DEVELOPMENTAL DISABILITIES WERE 4277 02:44:36,240 --> 02:44:40,400 NOT ONLY BEST LIKELY TO NOTE THE 4278 02:44:40,400 --> 02:44:41,840 FATHER IN THE BIRTH CERTIFICATE 4279 02:44:41,840 --> 02:44:50,720 BUT YOUNGER WOMEN WITH GREAT 4280 02:44:50,720 --> 02:44:51,560 SORE NO SEPARATELY FROM RESEARCH 4281 02:44:51,560 --> 02:44:53,120 THAT'S BEEN CONDUCTED BY US AND 4282 02:44:53,120 --> 02:44:58,560 SEVERAL OTHERS IS THAT DISABLED 4283 02:44:58,560 --> 02:44:59,440 PEOPLE DISABILITY AND GREATER 4284 02:44:59,440 --> 02:45:01,120 RISK FOR VIOLENCE AND GREATER 4285 02:45:01,120 --> 02:45:05,600 RISK FOR SEXUAL VIOLENCE AND 4286 02:45:05,600 --> 02:45:09,840 INTIMATE PARTNER VIOLENCE SEW I 4287 02:45:09,840 --> 02:45:13,000 DON'T KNOW HOW THIS IS RELATED 4288 02:45:13,000 --> 02:45:18,280 AND IT COULD POTENTIALLY BE 4289 02:45:18,280 --> 02:45:20,880 BECAUSE OF THE EXPERIENCE OF 4290 02:45:20,880 --> 02:45:24,920 VIOLENCE AND BECAUSE OF A FEAR 4291 02:45:24,920 --> 02:45:26,280 OF THAT NOT WANTING TO PROVIDE 4292 02:45:26,280 --> 02:45:31,000 THE NAMES OF THE BIRTH FATHER 4293 02:45:31,000 --> 02:45:32,760 BUT AGAIN THIS IS THE PROBLEM 4294 02:45:32,760 --> 02:45:34,800 WITH SECONDARY DATA IS OFTEN YOU 4295 02:45:34,800 --> 02:45:40,320 DID NOT DELVE INTO THE WHY AND 4296 02:45:40,320 --> 02:45:41,640 THAT IS A VERY, VERY IMPORTANT 4297 02:45:41,640 --> 02:45:43,800 QUESTION THAT HOPEFULLY WE CAN 4298 02:45:43,800 --> 02:45:44,760 GET TO AT SOME POINT. 4299 02:45:44,760 --> 02:45:46,440 >>THANK YOU. 4300 02:45:46,440 --> 02:45:48,840 NEXT QUESTION, THE ATTENDEE WAS 4301 02:45:48,840 --> 02:45:50,320 WONDERING IF MIDWIVES ARE 4302 02:45:50,320 --> 02:45:54,720 SIMILAR PERSONNEL ARE BETTER 4303 02:45:54,720 --> 02:46:05,200 QUALIFIED THAN HAVING DOULA 4304 02:46:11,920 --> 02:46:15,400 SUPPORT PEOPLE DURING THEIR 4305 02:46:15,400 --> 02:46:23,040 PREGNANCY. 4306 02:46:23,040 --> 02:46:24,080 AND THINK HAVE THING BLACK WOMEN 4307 02:46:24,080 --> 02:46:25,240 DURING THEIR PREGNANCY AND I'D 4308 02:46:25,240 --> 02:46:27,200 LIKE TO SEE THE SAME TO TRYING 4309 02:46:27,200 --> 02:46:29,280 TO UNDERSTAND IS THIS SOMETHING 4310 02:46:29,280 --> 02:46:36,120 THAT IS VALUED AND IS THIS 4311 02:46:36,120 --> 02:46:46,600 SOMETHING THAT POST POT DUMB. 4312 02:46:50,040 --> 02:46:51,040 >>WE'LL QUESTIONS IN ONE MORE 4313 02:46:51,040 --> 02:46:53,640 IF YOU WANT A QUICK RESPONSE. 4314 02:46:53,640 --> 02:46:55,000 WHAT ABOUT A CLINICIAN WHO MAY 4315 02:46:55,000 --> 02:46:56,200 HAVE NOT HAD MUCH EXPERIENCE 4316 02:46:56,200 --> 02:46:57,880 WITH PEOPLE AT THE DISABILITIES 4317 02:46:57,880 --> 02:47:01,360 BEAU WANT TO LEARN FROM THE 4318 02:47:01,360 --> 02:47:02,720 PATIENT. 4319 02:47:02,720 --> 02:47:03,520 STA A POSITIVE AND OPPORTUNITY? 4320 02:47:03,520 --> 02:47:07,160 >>YOU KNOW, AND THIS DID COME 4321 02:47:07,160 --> 02:47:12,160 UP IN MY INCOMPETENT VIEWS AND 4322 02:47:12,160 --> 02:47:16,080 IF YOU DON'T KNOW, DON'T ASSUME. 4323 02:47:16,080 --> 02:47:18,840 IN TERMS OF CARE COR DIPPATION. 4324 02:47:18,840 --> 02:47:20,600 TALK TO -- CAN I REACH OUT TO 4325 02:47:20,600 --> 02:47:24,040 YOUR PRIMARY CARE, YOUR OTHER 4326 02:47:24,040 --> 02:47:26,920 DOCTORS WHO LEARN BUT ALSO, JUST 4327 02:47:26,920 --> 02:47:28,680 ASKING AN INDIVIDUAL IS, I 4328 02:47:28,680 --> 02:47:30,920 THINK, DEFINITELY THE BEST WAY 4329 02:47:30,920 --> 02:47:31,680 TO GO. 4330 02:47:31,680 --> 02:47:32,400 ALSO DO THE RESEARCH. 4331 02:47:32,400 --> 02:47:37,120 YOU KNOW, THAT'S THE OTHER PIECE 4332 02:47:37,120 --> 02:47:38,320 OF IT. 4333 02:47:38,320 --> 02:47:39,280 >>Adam: GREAT ADVICE. 4334 02:47:39,280 --> 02:47:39,720 THANK YOU VERY MUCH. 4335 02:47:39,720 --> 02:47:44,440 WE REALLY APPRECIATE YOU BEING 4336 02:47:44,440 --> 02:47:44,760 HERE. 4337 02:47:44,760 --> 02:47:46,760 OUR NEXT AND FINAL SPEAKER FOR 4338 02:47:46,760 --> 02:47:48,960 THIS DECISION IS Dr. ELIZABETH 4339 02:47:48,960 --> 02:47:50,640 HOLIDAY MORGAN AN ASSISTANT 4340 02:47:50,640 --> 02:47:52,320 PROFESSOR IN EDUCATIONAL 4341 02:47:52,320 --> 02:47:53,680 LEADERSHIP AT CALIFORNIA STATE 4342 02:47:53,680 --> 02:47:56,040 UNIVERSITY SACRAMENTO AND 4343 02:47:56,040 --> 02:47:57,040 PROGRAM FOR THE CENTER FOR 4344 02:47:57,040 --> 02:47:58,440 EXCELLENCE AND DEVELOPMENTAL 4345 02:47:58,440 --> 02:47:59,520 DISABILITIES AT THE MIND 4346 02:47:59,520 --> 02:48:00,240 INSTITUTE. 4347 02:48:00,240 --> 02:48:01,720 HER AREA OF RESEARCH FOCUS 4348 02:48:01,720 --> 02:48:02,960 INCLUDES EARLY CHILDHOOD AND 4349 02:48:02,960 --> 02:48:05,360 EARLY INTERVENTION SERVICES AND 4350 02:48:05,360 --> 02:48:06,520 THIS SPECIFIC INTEREST IN UNDER 4351 02:48:06,520 --> 02:48:08,120 REPRESENTED POPULATIONS. 4352 02:48:08,120 --> 02:48:09,480 Dr. MORGAN WILL PRESENT ON 4353 02:48:09,480 --> 02:48:10,320 DISABILITY AND HEALTH 4354 02:48:10,320 --> 02:48:11,840 DISPARITIES IN THE BLACK 4355 02:48:11,840 --> 02:48:12,880 AUTISTIC COMMUNITIES AND AGAIN 4356 02:48:12,880 --> 02:48:14,720 IF THERE'S TIME FOLLOWING THE 4357 02:48:14,720 --> 02:48:17,520 PRESENTATION, SHALL ANSWER 4358 02:48:17,520 --> 02:48:18,120 QUESTIONS. 4359 02:48:18,120 --> 02:48:20,960 Dr. MORGAN, A PLEASURE HAVING 4360 02:48:20,960 --> 02:48:21,520 YOU HERE TODAY. 4361 02:48:21,520 --> 02:48:22,280 TAKE IT AWAY. 4362 02:48:22,280 --> 02:48:23,280 >>THANK YOU SO MUCH. 4363 02:48:23,280 --> 02:48:33,680 LET ME SHARE MY SCREEN. 4364 02:48:34,040 --> 02:48:36,360 >>GOOD AFTERNOON, EVERYONE. 4365 02:48:36,360 --> 02:48:39,240 OR GOOD MORNING FOR SOME. 4366 02:48:39,240 --> 02:48:41,840 MY NAME IS Dr. ELIZABETH 4367 02:48:41,840 --> 02:48:44,120 HOLIDAY MORGAN AND I GO BY THE 4368 02:48:44,120 --> 02:48:47,800 PRONOUNCE OF SHE/HER/HERS. 4369 02:48:47,800 --> 02:48:50,880 I'M CALLING IN FROM SACRAMENTO, 4370 02:48:50,880 --> 02:48:56,480 CALIFORNIA, THE TERRITORY OF THE 4371 02:48:56,480 --> 02:48:59,080 PLAINS ME WAK NATIONS, I HAVE A 4372 02:48:59,080 --> 02:49:00,120 QUICK VISUAL DESCRIPTION. 4373 02:49:00,120 --> 02:49:05,240 I AM A LIGHT BROWN/BLACK WOMEN 4374 02:49:05,240 --> 02:49:06,840 WITH DARK CURLY HAIR AND 4375 02:49:06,840 --> 02:49:08,000 GLASSES. 4376 02:49:08,000 --> 02:49:10,360 I SELF-IDENTIFY AS A PERSON WITH 4377 02:49:10,360 --> 02:49:13,720 AN INVISIBLE DISABILITY. 4378 02:49:13,720 --> 02:49:16,440 TODAY, YOU HAVE HEARD SO MANY 4379 02:49:16,440 --> 02:49:17,840 WONDERFUL EXAMPLES AND 4380 02:49:17,840 --> 02:49:20,320 PRESENTATIONS JUST TO GIVE US A 4381 02:49:20,320 --> 02:49:22,880 SENSE OF THE TOPIC OF ABLEISM IN 4382 02:49:22,880 --> 02:49:24,280 THE MEDICAL FIELD AND IN 4383 02:49:24,280 --> 02:49:25,040 RESEARCH. 4384 02:49:25,040 --> 02:49:26,760 AND NOW, I HAVE THE PLEASURE OF 4385 02:49:26,760 --> 02:49:30,840 BEING BEFORE YOU TO TALK ABOUT 4386 02:49:30,840 --> 02:49:34,000 WHAT HAPPENS WHEN DISCRIMINATION 4387 02:49:34,000 --> 02:49:35,200 AGAINST DISABILITY IS JOINED 4388 02:49:35,200 --> 02:49:37,640 WITH ADDITIONAL ASPECTS OF A 4389 02:49:37,640 --> 02:49:39,920 PERSON'S IDENTITY SUCH AS RACE, 4390 02:49:39,920 --> 02:49:42,760 GENDER, ECONOMIC STATUS, 4391 02:49:42,760 --> 02:49:43,440 EDUCATIONAL BACKGROUND JUST TO 4392 02:49:43,440 --> 02:49:46,240 NAME A FEW. 4393 02:49:46,240 --> 02:49:48,000 AND HOW THOSE EXPERIENCES OF 4394 02:49:48,000 --> 02:49:51,760 IDENTITY INTERSECT TO GIVE A 4395 02:49:51,760 --> 02:49:52,440 WHOLE DIFFERENT EXPERIENCE AND 4396 02:49:52,440 --> 02:49:54,800 HOW WE CAN GIVE ACCOUNT OF HOW 4397 02:49:54,800 --> 02:49:58,360 THIS IMPACTS A PERSON'S WITH A 4398 02:49:58,360 --> 02:50:00,000 DISABILITY BOTH CHILDREN AND 4399 02:50:00,000 --> 02:50:01,840 ADULTS AND PRACTICE. 4400 02:50:01,840 --> 02:50:03,640 I WILL DO THIS BY HIGHLIGHTING 4401 02:50:03,640 --> 02:50:08,000 MY WORK THAT I HAVE DONE WITH 4402 02:50:08,000 --> 02:50:09,840 PARTNERS ACROSS LAST COUPLE OF 4403 02:50:09,840 --> 02:50:11,400 YEARS, JUST REALLY FOCUSING ON 4404 02:50:11,400 --> 02:50:14,720 THE MARGINALIZED COMMUNITIES AND 4405 02:50:14,720 --> 02:50:17,440 WHO SUCH AS BIPOC, DISABLED, AND 4406 02:50:17,440 --> 02:50:22,160 PERSONS LIVING AT OR BELOW THE 4407 02:50:22,160 --> 02:50:25,480 POVERTY LINE. 4408 02:50:25,480 --> 02:50:30,560 SO I HAVE NO DISCLOSURE TO 4409 02:50:30,560 --> 02:50:31,480 STATE. 4410 02:50:31,480 --> 02:50:33,480 SO, JUST TO GIVE YOU A 4411 02:50:33,480 --> 02:50:35,600 BACKGROUND, MOST OF MY 4412 02:50:35,600 --> 02:50:36,960 PRESENTATIONS WILL BE REALLY 4413 02:50:36,960 --> 02:50:40,480 BASED UPON A NUMBER OF STUDIES. 4414 02:50:40,480 --> 02:50:45,520 I ACTUALLY GAVE THEM TO OUR -- 4415 02:50:45,520 --> 02:50:47,600 TO THE FACILITATORS TO HELP PUT 4416 02:50:47,600 --> 02:50:49,400 THEM IN THE CHAT SO THAT YOU CAN 4417 02:50:49,400 --> 02:50:51,880 HAVE THEM AS A REFERENCE. 4418 02:50:51,880 --> 02:50:53,680 BUT THE PAPERS THAT I WILL 4419 02:50:53,680 --> 02:50:55,480 QUICKLY HIGHLIGHT RIGHT NOW ARE 4420 02:50:55,480 --> 02:50:58,720 JUST REALLY GIVING YOU A 4421 02:50:58,720 --> 02:51:01,120 REFERENCE OF WHAT THE FOUNDATION 4422 02:51:01,120 --> 02:51:05,640 OF THIS TALK WILL BE BASED UPON 4423 02:51:05,640 --> 02:51:07,720 AND THE FIRST IS A COMMENTARY 4424 02:51:07,720 --> 02:51:10,400 POSTED IN THE PEDIATRICS JOURNAL 4425 02:51:10,400 --> 02:51:14,920 THAT MY SUPPLEMENT AND TWO OF MY 4426 02:51:14,920 --> 02:51:20,040 COLLEAGUES AND PUT TOGETHER 4427 02:51:20,040 --> 02:51:22,120 REALLY JUST A REALLY HEIGHT 4428 02:51:22,120 --> 02:51:23,680 LIGHT THE INTERSECTIONS OF RACE 4429 02:51:23,680 --> 02:51:34,200 AND DISABILITY IN PRACTICE AND 4430 02:51:36,000 --> 02:51:38,040 WITH COLLEAGUE OF MINE AT THE 4431 02:51:38,040 --> 02:51:39,680 MIND INSTITUTE AND HIGHLIGHTING 4432 02:51:39,680 --> 02:51:42,960 OUR PARTNERSHIP THAT WE HAVE 4433 02:51:42,960 --> 02:51:44,400 WITH BLACK MOTHER ADVOCATES IN 4434 02:51:44,400 --> 02:51:48,160 NORTHERN CALIFORNIA AND 4435 02:51:48,160 --> 02:51:49,240 WISCONSIN AND IN OUR LENS TO 4436 02:51:49,240 --> 02:51:50,120 REALLY TALK ABOUT THE 4437 02:51:50,120 --> 02:51:51,360 PARTNERSHIP THAT IS NECESSARY TO 4438 02:51:51,360 --> 02:51:53,760 CREATE PROGRAMMING THAT IS 4439 02:51:53,760 --> 02:51:56,200 ANTIRACIST AND ANTI A-LIST AND 4440 02:51:56,200 --> 02:51:57,880 THIS LAST STUDY HERE THE 4441 02:51:57,880 --> 02:51:58,920 FOUNDATIONAL STUDY WAS DONE WITH 4442 02:51:58,920 --> 02:52:02,040 A GROUP OF RESEARCHERS ON THE 4443 02:52:02,040 --> 02:52:04,120 PROJECT ACROSS THREE STATES AND 4444 02:52:04,120 --> 02:52:06,400 WHICH WAS REALLY HIGHLIGHTING 4445 02:52:06,400 --> 02:52:08,920 FOCUS GROUP DATA THAT WE PULLED 4446 02:52:08,920 --> 02:52:10,960 UPON TO ADDRESS SERVICES AND 4447 02:52:10,960 --> 02:52:12,160 BARRIERS AND ACCESS TO SUPPORT 4448 02:52:12,160 --> 02:52:16,600 AND SERVICES FOR AUTISTIC 4449 02:52:16,600 --> 02:52:17,800 CHILDREN AND SO THESE PARTICULAR 4450 02:52:17,800 --> 02:52:19,440 FOCUS GROUPS WERE FROM BIPOC AND 4451 02:52:19,440 --> 02:52:27,360 LOW INCOME FAMILIES AND SO THESE 4452 02:52:27,360 --> 02:52:37,840 ARE A LITTLE BACKGROUND WITH 4453 02:52:44,560 --> 02:52:45,600 RACE AND AUTISM. 4454 02:52:45,600 --> 02:52:46,600 SPECIFICALLY BLACKNESS AND 4455 02:52:46,600 --> 02:52:47,520 AUTISM. 4456 02:52:47,520 --> 02:52:50,000 THE BACKGROUND WE KNOW JUST IN 4457 02:52:50,000 --> 02:52:51,080 MENTAL, 1/36 CHILDREN ARE 4458 02:52:51,080 --> 02:52:53,520 DIAGNOSED TO BE ON THE AUTISM 4459 02:52:53,520 --> 02:52:55,240 SPECTRUM IN THE U.S. AND EARLY 4460 02:52:55,240 --> 02:52:57,200 INTERVENTION, WE HAVE LOTS OF 4461 02:52:57,200 --> 02:52:58,680 CREDITABLE INFORMATION THAT 4462 02:52:58,680 --> 02:52:59,880 EARLY INTERVENTION REALLY MAKES 4463 02:52:59,880 --> 02:53:03,760 A BIG DIFFERENCE AND PROVIDING 4464 02:53:03,760 --> 02:53:05,720 SIGNIFICANT OVER ALL QUALITY OF 4465 02:53:05,720 --> 02:53:09,120 LIFE OUTCOMES FOR CHILDREN WITH 4466 02:53:09,120 --> 02:53:11,600 ASD. 4467 02:53:11,600 --> 02:53:13,720 BUT, WE KNOW SOME ADDITIONAL 4468 02:53:13,720 --> 02:53:15,320 RESEARCH WITH BLACK CHILDREN AND 4469 02:53:15,320 --> 02:53:17,720 WHEN I SAY BLACK, THIS INCLUDES 4470 02:53:17,720 --> 02:53:19,120 CHILDREN, AFRICAN AMERICAN 4471 02:53:19,120 --> 02:53:20,840 CHILDREN, IMMIGRANT AFRICANS AND 4472 02:53:20,840 --> 02:53:25,040 WEST CARIBBEAN AND COMMUNITIES, 4473 02:53:25,040 --> 02:53:28,440 THESE CHILDREN ARE DIAGNOSED 1.6 4474 02:53:28,440 --> 02:53:30,080 YEARS LATER AND UP TO THREE 4475 02:53:30,080 --> 02:53:32,720 TIMES MORE LIKELY TO BE 4476 02:53:32,720 --> 02:53:33,440 INITIALLY MISDIAGNOSED THAN 4477 02:53:33,440 --> 02:53:37,560 THEIR WHITE COUNTERPARTS AND SO, 4478 02:53:37,560 --> 02:53:38,880 EVEN MORE ALARMING BECAUSE I DO 4479 02:53:38,880 --> 02:53:40,320 A LOT OF RESEARCH SPECIFICALLY 4480 02:53:40,320 --> 02:53:43,520 ON FAMILIES, WE KNOW THAT 4481 02:53:43,520 --> 02:53:45,120 REGARDLESS OF SOCIOECONOMIC 4482 02:53:45,120 --> 02:53:46,720 STATUS, OR EDUCATIONAL 4483 02:53:46,720 --> 02:53:48,960 ATTAINMENT, THAT BLACK FAMILIES 4484 02:53:48,960 --> 02:53:52,080 STILL HAVE LIMITED ACCESS TO 4485 02:53:52,080 --> 02:53:53,480 INFORMATION AND APPROPRIATE 4486 02:53:53,480 --> 02:53:55,040 INTERVENTION TO SERVICES FOR 4487 02:53:55,040 --> 02:53:56,200 THEIR CHILDREN WHEN THEY FINALLY 4488 02:53:56,200 --> 02:54:00,000 ARE ABLE TO GET A DIAGNOSIS. 4489 02:54:00,000 --> 02:54:02,840 SO, JUST TO REALLY STRESS THE 4490 02:54:02,840 --> 02:54:05,560 IMPORTANCE OF ADVOCACY AND 4491 02:54:05,560 --> 02:54:06,880 AUTISM PARENTS, PARENTS ARE 4492 02:54:06,880 --> 02:54:09,080 CHILDREN ON THE AUTISM SPECTRUM, 4493 02:54:09,080 --> 02:54:11,960 YOU KNOW, I WANT TO SET THE 4494 02:54:11,960 --> 02:54:12,240 TIMELINE. 4495 02:54:12,240 --> 02:54:15,360 SO JUST GIVEN A HISTORICAL 4496 02:54:15,360 --> 02:54:19,920 CONTEXT, WE KNOW THAT IN 1943, 4497 02:54:19,920 --> 02:54:21,520 Dr. CANNER, WE SEE THE FIRST 4498 02:54:21,520 --> 02:54:22,840 EXAMPLE OF THE AUTISM IN THE 4499 02:54:22,840 --> 02:54:27,160 U.S. WITH HIS PAPER JUST 4500 02:54:27,160 --> 02:54:32,000 DOCUMENT OF A 11 MINORS AS HE 4501 02:54:32,000 --> 02:54:33,400 DESCRIBED HAVING BEHAVIOR 4502 02:54:33,400 --> 02:54:35,120 ASSOCIATED WITH LIMITED ABILITY 4503 02:54:35,120 --> 02:54:37,160 TO GENERALIZE OR ENGAGE IN 4504 02:54:37,160 --> 02:54:40,920 SPONTANEOUS ACTIVITY OR ENGAGE 4505 02:54:40,920 --> 02:54:42,480 IN REPETITIVE BEHAVIOR WHICH WE 4506 02:54:42,480 --> 02:54:44,080 ALL KNOW ARE A HALLMARK SIGN OF 4507 02:54:44,080 --> 02:54:47,760 AN AUTISM DIAGNOSIS TODAY SO 4508 02:54:47,760 --> 02:54:52,240 EVEN BACK THEN, WE REALLY SAW 4509 02:54:52,240 --> 02:54:53,080 THE POWERFUL ROLE THAT PARENTS 4510 02:54:53,080 --> 02:54:54,920 PLAYED IN ADVOCATING FOR THEIR 4511 02:54:54,920 --> 02:54:56,880 CHILDREN IN THE 11 MINORS THAT 4512 02:54:56,880 --> 02:54:59,360 WERE OBSERVED IN Dr. CANNER'S 4513 02:54:59,360 --> 02:55:02,520 STUDY, WERE REALLY USED THEIR 4514 02:55:02,520 --> 02:55:05,120 INFLUENCE TO GET AN ADDITIONAL 4515 02:55:05,120 --> 02:55:07,160 EVALUATION BY Dr. CANNER FOR 4516 02:55:07,160 --> 02:55:10,000 THIS AUTISM DIAGNOSIS. 4517 02:55:10,000 --> 02:55:12,760 SO FURTHER ALONG THE LINE, IN 4518 02:55:12,760 --> 02:55:15,160 THE TIMELINE, WE LEARNED MORE 4519 02:55:15,160 --> 02:55:18,240 ABOUT THE ROLE OF PARENTS AND 4520 02:55:18,240 --> 02:55:20,880 THIS JOURNEY OF ADVOCACY FOR 4521 02:55:20,880 --> 02:55:24,360 CHILDREN ON THE SPECTRUM SO IN 4522 02:55:24,360 --> 02:55:27,520 THE '60s, PARENTS WERE 4523 02:55:27,520 --> 02:55:28,760 VILLAINIZED AND CALLED 4524 02:55:28,760 --> 02:55:30,000 REFRIGERATOR PARENTS OR MOTHERS, 4525 02:55:30,000 --> 02:55:31,240 MOTHERS WHO WERE BLAMED AS THE 4526 02:55:31,240 --> 02:55:33,720 CAUSE OF THEIR CHILDREN'S 4527 02:55:33,720 --> 02:55:37,480 DISORDER AND LACK OF NURTURING 4528 02:55:37,480 --> 02:55:40,720 AND CO-PARENTING, BEING THE 4529 02:55:40,720 --> 02:55:40,920 ROOT. 4530 02:55:40,920 --> 02:55:45,080 OF COURSE, WE DO KNOW THIS WAS 4531 02:55:45,080 --> 02:55:45,600 DEBUNKED. 4532 02:55:45,600 --> 02:55:46,600 THE RECOMMENDED TREATMENT BACK 4533 02:55:46,600 --> 02:55:48,320 THEN WAS TO REMOVE CHILDREN FROM 4534 02:55:48,320 --> 02:55:52,080 THEIR PARENTS' CARE AND 4535 02:55:52,080 --> 02:55:52,960 INSTITUTIONALIZE THE CHILDREN. 4536 02:55:52,960 --> 02:55:57,120 EVEN IN ALL OF THAT, THE PARENTS 4537 02:55:57,120 --> 02:55:59,560 FACED JUST GREAT OPPOSITION 4538 02:55:59,560 --> 02:56:10,120 FORGED A PATHWAY WHEN HE WE TALK 4539 02:56:12,880 --> 02:56:14,360 ABOUT AUTISM INTERVENTION, WE 4540 02:56:14,360 --> 02:56:16,720 KNOW THAT OUR CURRENT 4541 02:56:16,720 --> 02:56:17,520 EVIDENCE-BASED PRACTICE REALLY 4542 02:56:17,520 --> 02:56:20,640 ARE THOSE INTERVENTIONS THAT 4543 02:56:20,640 --> 02:56:24,280 HAVE A STRONG PARENT COMPONENT 4544 02:56:24,280 --> 02:56:26,000 INVOLVED IN INTERVENTION AND SO 4545 02:56:26,000 --> 02:56:29,360 PARENTS REALLY PLAY A REALLY 4546 02:56:29,360 --> 02:56:30,120 STRONG ROLE. 4547 02:56:30,120 --> 02:56:32,760 SO WITH THAT, I WANT YOU TO 4548 02:56:32,760 --> 02:56:35,120 ENGAGE IN EXERCISE WITH ME. 4549 02:56:35,120 --> 02:56:36,640 SO MY BACKGROUND IS I'M A 4550 02:56:36,640 --> 02:56:37,960 TEACHER. 4551 02:56:37,960 --> 02:56:39,440 SO FIRST THING THAT I'M ALWAYS 4552 02:56:39,440 --> 02:56:41,560 CARE THE MOST ABOUT IS MAKING 4553 02:56:41,560 --> 02:56:44,800 SURE TO TAKE US IN ON A JOURNEY, 4554 02:56:44,800 --> 02:56:45,880 A LEARNING JOURNEY TOGETHER AND 4555 02:56:45,880 --> 02:56:48,000 SO I'D LIKE FOR YOU TO THINK 4556 02:56:48,000 --> 02:56:51,440 ABOUT THE PARENTS, THE POWERFUL 4557 02:56:51,440 --> 02:56:53,440 AUTISM PARENTS, RIGHT, THE 4558 02:56:53,440 --> 02:56:55,080 ADVOCATES THAT WE TALKED ABOUT 4559 02:56:55,080 --> 02:56:57,040 IN THIS TIMELINE AND I WANT YOU 4560 02:56:57,040 --> 02:56:58,640 TO REALLY TRY TO PUT A PICTURE 4561 02:56:58,640 --> 02:57:00,920 IN YOUR HEAD OF WHO YOU THINK 4562 02:57:00,920 --> 02:57:02,160 THEY WERE. 4563 02:57:02,160 --> 02:57:03,120 TRY TO VISUALIZE THEM. 4564 02:57:03,120 --> 02:57:04,800 AND OF COURSE YOU ARE NOT GOING 4565 02:57:04,800 --> 02:57:06,520 TO VERBALIZE IT OR I WON'T ASK 4566 02:57:06,520 --> 02:57:07,920 YOU TO TYPE IT IN THE CHAT, BUT 4567 02:57:07,920 --> 02:57:12,120 I WANT YOU TO THINK TO YOURSELF, 4568 02:57:12,120 --> 02:57:18,200 DID YOU SEE THIS WOMAN WHEN YOU 4569 02:57:18,200 --> 02:57:20,360 THOUGHT OF THIS POWERFUL PARENT 4570 02:57:20,360 --> 02:57:24,040 ADVOCATE FOR CHILDREN ON THE 4571 02:57:24,040 --> 02:57:24,280 SPECTRUM. 4572 02:57:24,280 --> 02:57:26,000 I WOULD SAY MOST OF YOU DID NOT. 4573 02:57:26,000 --> 02:57:28,160 SOME OF YOU MIGHT HAVE BUT MOST 4574 02:57:28,160 --> 02:57:30,000 YOU DID NOT I WOULD SAY BECAUSE, 4575 02:57:30,000 --> 02:57:31,920 THE EXPERIENCES OF BLACK WOMEN 4576 02:57:31,920 --> 02:57:35,520 WERE REALLY SUPPRESSED AND 4577 02:57:35,520 --> 02:57:37,000 ERASED FROM THE LITERATURE AND 4578 02:57:37,000 --> 02:57:40,120 FROM THIS HISTORICAL TIMELINE 4579 02:57:40,120 --> 02:57:42,840 AND AS A BLACK MOTHER MYSELF, 4580 02:57:42,840 --> 02:57:45,160 AND A PARENT OF A CHILD ON THE 4581 02:57:45,160 --> 02:57:47,400 AUTISM SPECTRUM, I CAN TELL YOU 4582 02:57:47,400 --> 02:57:50,480 THAT THESE STORIES ARE 4583 02:57:50,480 --> 02:57:54,240 ABSOLUTELY REAL BUT IT'S THE 4584 02:57:54,240 --> 02:57:58,120 SYSTEMIC RACISM, SEXISM 4585 02:57:58,120 --> 02:58:00,040 OPPRESSIVE SYSTEMS THAT REALLY 4586 02:58:00,040 --> 02:58:01,640 SUPPRESSED THE STORIES, FROM 4587 02:58:01,640 --> 02:58:03,080 BLACK AND BROWN COMMUNITIES FROM 4588 02:58:03,080 --> 02:58:06,680 BEING TOLD, AND SO, REALLY, THIS 4589 02:58:06,680 --> 02:58:08,640 PRESENTS THE REASON WHY WE HAVE 4590 02:58:08,640 --> 02:58:10,400 A CLEAR GAP IN THIS STORY LINE 4591 02:58:10,400 --> 02:58:12,320 OR REALLY A CLEAR GAP IN BEING 4592 02:58:12,320 --> 02:58:14,160 ABLE TO HEAR CERTAIN STORIES IN 4593 02:58:14,160 --> 02:58:17,040 THE LITERATURE. 4594 02:58:17,040 --> 02:58:18,960 SO, LET ME TELL YOU WHO THIS 4595 02:58:18,960 --> 02:58:20,520 WOMAN WAS. 4596 02:58:20,520 --> 02:58:23,040 SO, HER NAME IS DORTHY GROOMER 4597 02:58:23,040 --> 02:58:25,000 AND SHE WAS, I CAME ACROSS HER 4598 02:58:25,000 --> 02:58:28,480 IN MY RESEARCH OF TRYING TO FIND 4599 02:58:28,480 --> 02:58:30,320 EVIDENCE OF BLACK PARENTS 4600 02:58:30,320 --> 02:58:40,840 ADVOCATING FOR THEIR CHILDREN. 4601 02:58:56,320 --> 02:58:59,040 >>I ASKED DOES STEVEN HAVE 4602 02:58:59,040 --> 02:59:00,640 AUTISM AND THEY SAID NO, NO. 4603 02:59:00,640 --> 02:59:03,840 IT MAY BE AN EMOTIONAL 4604 02:59:03,840 --> 02:59:05,120 DISTURBANCE BUT IT'S NOT AUTISM. 4605 02:59:05,120 --> 02:59:07,160 WE DID NOT FIT THE MOLD FOR 4606 02:59:07,160 --> 02:59:09,120 AUTISM, WHICH IS WHITE, UPPER 4607 02:59:09,120 --> 02:59:10,800 MIDDLE-CLASS, AND VERY, VERY 4608 02:59:10,800 --> 02:59:11,280 BRIGHT. 4609 02:59:11,280 --> 02:59:13,280 IT WAS REALLY NOT A NEGOTIABLE 4610 02:59:13,280 --> 02:59:14,280 ISSUE. 4611 02:59:14,280 --> 02:59:16,120 ACCORDING TO MY DOCTOR, MY SON 4612 02:59:16,120 --> 02:59:17,480 COULD NOT BE AUTISTIC. 4613 02:59:17,480 --> 02:59:18,960 I WAS NOT WHITE, AND I WAS 4614 02:59:18,960 --> 02:59:22,760 ASSUMED THAT I WAS NOT EDUCATED, 4615 02:59:22,760 --> 02:59:25,160 THEREFORE, HE WAS LABELED 4616 02:59:25,160 --> 02:59:25,840 EMOTIONALLY DISTURBED. 4617 02:59:25,840 --> 02:59:27,640 HERE YOUR CHILD AS A DISABILITY 4618 02:59:27,640 --> 02:59:29,080 THAT YOU RECOGNIZE, AND THEY SAY 4619 02:59:29,080 --> 02:59:29,320 NO. 4620 02:59:29,320 --> 02:59:30,520 YOU CAN'T DO THAT. 4621 02:59:30,520 --> 02:59:33,600 YOU CAN'T EVEN BE REFRIGERATOR 4622 02:59:33,600 --> 02:59:39,040 MOTHER, THE IRONY OF IT ALL. 4623 02:59:39,040 --> 02:59:43,080 SO, DORTHY'S STORY IS NOT -- 4624 02:59:43,080 --> 02:59:47,400 IT'S NOT SOMETHING THAT IS NOT 4625 02:59:47,400 --> 02:59:47,840 AN ANOMALIES, RIGHT. 4626 02:59:47,840 --> 02:59:49,120 SHE IS SIMILAR TO MANY 4627 02:59:49,120 --> 02:59:50,120 EXPERIENCES OF BLACK MOTHERS AND 4628 02:59:50,120 --> 02:59:52,200 OF CHILDREN ON THE AUTISM 4629 02:59:52,200 --> 02:59:55,400 SPECTRUM AND I HAVE BEEN IN MY 4630 02:59:55,400 --> 02:59:57,360 WORK, WITH INTERVIEWING THESE 4631 02:59:57,360 --> 02:59:58,560 MOTHERS, THIS IS A PAPER THAT 4632 02:59:58,560 --> 03:00:01,680 CAME OUT OF THAT FOCUSING 4633 03:00:01,680 --> 03:00:04,240 SPECIFICALLY ON THEIR JOURNEY OF 4634 03:00:04,240 --> 03:00:05,000 NAVIGATING SCHOOLING SYSTEMS AND 4635 03:00:05,000 --> 03:00:06,400 THE TYPE OF CULTURAL CAPITOL 4636 03:00:06,400 --> 03:00:08,440 THAT THEY USED TO BE ABLE TO 4637 03:00:08,440 --> 03:00:12,000 NAVIGATE AND ADVOCATE FOR THEIR 4638 03:00:12,000 --> 03:00:13,440 CHILDREN. 4639 03:00:13,440 --> 03:00:16,200 SO, THIS WAS A QUALITATIVE 4640 03:00:16,200 --> 03:00:18,280 NARRATIVE INQUIRY AND 4641 03:00:18,280 --> 03:00:20,320 METHODOLOGY WAS USED USING 4642 03:00:20,320 --> 03:00:21,480 OPEN-ENDED SEMI STRUCTURAL 4643 03:00:21,480 --> 03:00:23,480 INTERVIEWS AND GROUNDED THEORY 4644 03:00:23,480 --> 03:00:24,920 AND IT WAS USED IN ORDER TO 4645 03:00:24,920 --> 03:00:26,400 REALLY ANALYZE THE DATA AND 4646 03:00:26,400 --> 03:00:28,720 THERE WERE MULTIPLE HOLDERS AND 4647 03:00:28,720 --> 03:00:32,080 THE FIRST ROUND OF CODING WE 4648 03:00:32,080 --> 03:00:33,760 REALLY LOOKED AT AN EXTRACT A 4649 03:00:33,760 --> 03:00:36,520 USING OF A CULTURAL CAPITAL 4650 03:00:36,520 --> 03:00:38,520 FRAMEWORK IN COMMUNITY CULTURE 4651 03:00:38,520 --> 03:00:41,240 FRAMEWORK REALLY BY Dr. TERRY 4652 03:00:41,240 --> 03:00:42,400 OSOS WHO HELPED FRAME WHAT ARE 4653 03:00:42,400 --> 03:00:44,760 THE ASSETS THAT THESE MOTHERS 4654 03:00:44,760 --> 03:00:47,920 ARE BRINGING INTO THE ROOM AND 4655 03:00:47,920 --> 03:00:53,640 HOW THEY WERE USING TO ADVOCATE. 4656 03:00:53,640 --> 03:00:55,320 SO, WE CONDUCTED -- WE CODED THE 4657 03:00:55,320 --> 03:00:58,320 DATA AND CAME UP WITH ALSO 4658 03:00:58,320 --> 03:01:01,480 THEMES AND HAD OVER 131 PAGES OF 4659 03:01:01,480 --> 03:01:06,560 YOUR TRANSCRIPT WITH A 90% 4660 03:01:06,560 --> 03:01:07,400 RELIABILITY. 4661 03:01:07,400 --> 03:01:08,840 THESE ARE SOME DEMOGRAPHICS SO 4662 03:01:08,840 --> 03:01:10,600 YOU CAN SEE THE MOTHERS THAT WE 4663 03:01:10,600 --> 03:01:14,680 ENDED UP WORKING WITH, BY OUR 4664 03:01:14,680 --> 03:01:17,080 FIFTH TRANSCRIPT OF OUR 90 4665 03:01:17,080 --> 03:01:18,120 MINUTE INTERVIEW WE SEE 4666 03:01:18,120 --> 03:01:20,400 SATURATION WHICH IS REALLY JUST 4667 03:01:20,400 --> 03:01:22,280 SAYING WE WERE HEARING THIS SAME 4668 03:01:22,280 --> 03:01:25,120 THING OVER AND OVER AGAIN AND 4669 03:01:25,120 --> 03:01:26,880 THESE ARE OUR DEMOGRAPHIC AND 4670 03:01:26,880 --> 03:01:28,920 MOST OF THE AVERAGE AGE OF THE 4671 03:01:28,920 --> 03:01:30,920 WOMAN WAS 46 YEARS OR 4672 03:01:30,920 --> 03:01:32,440 47-YEARS-OLD AND AVERAGE AGE OF 4673 03:01:32,440 --> 03:01:35,160 A CHILD, THE CHILD AT THAT TIME 4674 03:01:35,160 --> 03:01:36,200 WAS 10-YEARS-OLD AND ALL THE 4675 03:01:36,200 --> 03:01:38,160 WOMEN HAD SOME FORM OF COLLEGE 4676 03:01:38,160 --> 03:01:39,760 EDUCATION AND IT'S REALLY 4677 03:01:39,760 --> 03:01:41,120 SIMILAR WITH THE NATIONAL CENTER 4678 03:01:41,120 --> 03:01:43,800 OF EDUCATIONAL STATISTICS 4679 03:01:43,800 --> 03:01:45,000 SUPPORTING THE BLACK WOMEN WHO 4680 03:01:45,000 --> 03:01:46,480 ARE ONE OF THE THINGEL MOST 4681 03:01:46,480 --> 03:01:48,320 HIGHLY EDUCATED POPULATIONS IN 4682 03:01:48,320 --> 03:01:49,840 THE U.S. 4683 03:01:49,840 --> 03:01:55,040 AND THE AVERAGE YEAR INCOME, WAS 4684 03:01:55,040 --> 03:01:56,280 $53,000 A YEAR AND ALL OF THESE 4685 03:01:56,280 --> 03:01:58,440 CHILDREN AND I THINK THIS IS 4686 03:01:58,440 --> 03:02:00,760 IMPORTANT, ALL OF THESE CHILDREN 4687 03:02:00,760 --> 03:02:04,120 WERE IN A SELF-CONTAINED 4688 03:02:04,120 --> 03:02:05,280 CLASSROOM WITH MEANING THEY WERE 4689 03:02:05,280 --> 03:02:09,320 IN DISABILITY-SPECIFIC 4690 03:02:09,320 --> 03:02:10,360 CLASSROOMS. 4691 03:02:10,360 --> 03:02:12,320 NOT GIVEN AN EDUCATION TO BE IN 4692 03:02:12,320 --> 03:02:14,920 A CLASSROOM ONLY ONE HAD A 4693 03:02:14,920 --> 03:02:15,800 GENERAL EDUCATION OPTION AFTER 4694 03:02:15,800 --> 03:02:19,920 YEARS OF ADVOCACY AND THIS 4695 03:02:19,920 --> 03:02:23,400 DOESN'T MATCH UP WITH WITH IEDA 4696 03:02:23,400 --> 03:02:24,040 LEGISLATION PROMOTES WITH 4697 03:02:24,040 --> 03:02:25,640 CHILDREN FOR DISABILITIES TO BE 4698 03:02:25,640 --> 03:02:27,080 IN LEAST RESTRICTIVE 4699 03:02:27,080 --> 03:02:28,320 ENVIRONMENTS WITH A DEVELOPING 4700 03:02:28,320 --> 03:02:36,600 PIEDEVELOPPEERS TO THE MAXIMUM T 4701 03:02:36,600 --> 03:02:36,880 POSSIBLE. 4702 03:02:36,880 --> 03:02:38,600 YOU KNOW THIS IS HOW WE WERE 4703 03:02:38,600 --> 03:02:44,360 ABLE TO ANALYZE THE DATA. 4704 03:02:44,360 --> 03:02:46,000 WE WERE LOOKING AT THE ASSETS 4705 03:02:46,000 --> 03:02:51,640 BECAUSE WE HAVE A DEF SET BASED 4706 03:02:51,640 --> 03:02:52,400 FRAMEWORK WITH BLACK FAMILIES 4707 03:02:52,400 --> 03:02:53,840 AND ALSO PEOPLE WITH 4708 03:02:53,840 --> 03:02:54,360 DISABILITIES SO WE WERE 4709 03:02:54,360 --> 03:02:55,920 INTERESTED IN LOOKING AT ASSET 4710 03:02:55,920 --> 03:02:58,800 BASED WORK AND SO WE PULLED UPON 4711 03:02:58,800 --> 03:03:00,280 WORK THAT HIGHLIGHTS CULTURAL 4712 03:03:00,280 --> 03:03:02,040 AND CAPITAL AND CULTURAL CAPITAL 4713 03:03:02,040 --> 03:03:04,680 IN PARTICULAR COMES FROM 4714 03:03:04,680 --> 03:03:07,320 SOCIOLOGY AND IT'S A OLD 4715 03:03:07,320 --> 03:03:07,960 CONCEPT. 4716 03:03:07,960 --> 03:03:11,880 FRENCH SOCIOLOGIST' PAIR PUT 4717 03:03:11,880 --> 03:03:16,360 TOGETHER JUST THINKING ABOUT THE 4718 03:03:16,360 --> 03:03:18,520 SOCIAL REPRODUCTION OF STATUS 4719 03:03:18,520 --> 03:03:23,320 AND POWER IN SOCIETY AND SO 4720 03:03:23,320 --> 03:03:24,400 INSTITUTIONS SUCH AS SCHOOLS AND 4721 03:03:24,400 --> 03:03:25,880 MEDICAL INSTITUTIONS REALLY 4722 03:03:25,880 --> 03:03:31,840 CAN'T HELP BUT PERPETUATE 4723 03:03:31,840 --> 03:03:34,120 CAPITOL FOR CERTAIN POPULATIONS 4724 03:03:34,120 --> 03:03:36,400 AND SPECIFICALLY SCHOOLS CAN 4725 03:03:36,400 --> 03:03:39,520 REALLY REPRODUCE INEQUALITY WHEN 4726 03:03:39,520 --> 03:03:43,760 IS CONTINUE TO GO REWARD PEOPLE 4727 03:03:43,760 --> 03:03:50,600 WITH A PARTICULAR WITH VALUES 4728 03:03:50,600 --> 03:04:01,160 AND FORMS W THAT SO THE TYPES OF 4729 03:04:04,280 --> 03:04:06,120 CAPITOL THAT THE COMMUNITIES OF 4730 03:04:06,120 --> 03:04:08,040 COLOR POSSESS THAT ARE 4731 03:04:08,040 --> 03:04:12,040 TRANSLATABLE INTO RESOURCES, AS 4732 03:04:12,040 --> 03:04:13,280 SET SKILLS, AND NAVIGATION 4733 03:04:13,280 --> 03:04:15,680 SKILLS, RIGHT. 4734 03:04:15,680 --> 03:04:21,360 SO THESE WE'RE LOOKING AT WHOSE 4735 03:04:21,360 --> 03:04:26,360 IDEAS REALLY ARE ACKNOWLEDGED 4736 03:04:26,360 --> 03:04:28,760 FOR IDEAS OR KNOWLEDGE FOR IN 4737 03:04:28,760 --> 03:04:31,280 SIGHT AND MANY RESEARCHERS, 4738 03:04:31,280 --> 03:04:34,800 PATRICIA COLLINS, THESE PEOPLE 4739 03:04:34,800 --> 03:04:36,960 HAVE REALLY ENGAGE THIS WORK 4740 03:04:36,960 --> 03:04:38,560 BEFORE AND HAVE COME UP WITH THE 4741 03:04:38,560 --> 03:04:40,840 IDEA THAT IF WE REALLY WANT TO 4742 03:04:40,840 --> 03:04:42,680 DO THIS WORK, WE HAVE TO USE 4743 03:04:42,680 --> 03:04:45,520 FRAMEWORKS THAT ALLOW US TO BE 4744 03:04:45,520 --> 03:04:48,360 ABLE TO DIG DEEPER IN LOOK FOR 4745 03:04:48,360 --> 03:04:52,280 THE GOOD AND SO, LOOKING, USING 4746 03:04:52,280 --> 03:04:54,400 THIS COMMUNITY CULTURAL WEALTH 4747 03:04:54,400 --> 03:04:55,920 FRAMEWORK AND ALLOWED US TO BE 4748 03:04:55,920 --> 03:04:58,600 ABLE TO NOT LOOK AT LACK OF 4749 03:04:58,600 --> 03:05:00,680 CULTURAL RESOURCES THAT THESE 4750 03:05:00,680 --> 03:05:02,600 MOTHERS HAVE AND LOOKING AT WHAT 4751 03:05:02,600 --> 03:05:07,920 THE ASSETS THAT THEY POSSESSION 4752 03:05:07,920 --> 03:05:09,520 AND HOW THEY USED THAT ASSETS 4753 03:05:09,520 --> 03:05:10,240 FOR THEIR CHILDREN. 4754 03:05:10,240 --> 03:05:13,040 I ALSO PULLED UPON AND PULLED IN 4755 03:05:13,040 --> 03:05:16,480 TWO OTHER RESEARCHERS TO ROUND 4756 03:05:16,480 --> 03:05:17,920 OUT THIS PARTICULAR STUDY 4757 03:05:17,920 --> 03:05:20,200 BECAUSE WE WERE FOCUSING ON 4758 03:05:20,200 --> 03:05:21,880 BLACK MOTHERS AND I LOOKED AND I 4759 03:05:21,880 --> 03:05:25,920 PULLED UPON THE WORK OF HER WORK 4760 03:05:25,920 --> 03:05:29,560 AND FOR MOTHER AND WHICH WAS 4761 03:05:29,560 --> 03:05:34,560 SOMETHING AND CAME OUT OF INTO 4762 03:05:34,560 --> 03:05:38,120 THEY SHOULD LIKE 25 LOW INCOME 4763 03:05:38,120 --> 03:05:40,240 IMMIGRANT MOTHERS AS THEY USE 4764 03:05:40,240 --> 03:05:42,840 AREAS AND TO NAVIGATE MEDICAL 4765 03:05:42,840 --> 03:05:45,040 AND EDUCATIONAL SETTINGS TO 4766 03:05:45,040 --> 03:05:47,280 ADVOCATE FOR CHILDREN AND THEN 4767 03:05:47,280 --> 03:05:49,000 Dr. PRUDENCE CARTER, HER WORK 4768 03:05:49,000 --> 03:05:52,040 ON BLACK CULTURAL CAPITAL AND 4769 03:05:52,040 --> 03:05:54,720 IT'S TALKING ABOUT THE ABILITY 4770 03:05:54,720 --> 03:06:00,240 TO NAVIGATE OR INTEGRATE BETWEEN 4771 03:06:00,240 --> 03:06:03,640 TWO SETS OF SOCIAL AND CULTURAL 4772 03:06:03,640 --> 03:06:05,360 VALUES SYSTEMS AND THE MORE THAT 4773 03:06:05,360 --> 03:06:08,320 YOU ARE ABLE TO APPROPRIATELY DO 4774 03:06:08,320 --> 03:06:12,480 THAT, HOW BLACK PEOPLE IN 4775 03:06:12,480 --> 03:06:13,560 PARTICULAR ARE ABLE TO 4776 03:06:13,560 --> 03:06:15,400 DEMONSTRATE THAT CAPITOL AND 4777 03:06:15,400 --> 03:06:16,400 ANOTHER PEOPLE, MANY TIMES I 4778 03:06:16,400 --> 03:06:18,680 THINK BLACK CULTURAL CAPITOL IS 4779 03:06:18,680 --> 03:06:19,760 THE ABILITY TO CODE SWITCH, 4780 03:06:19,760 --> 03:06:22,760 RIGHT. 4781 03:06:22,760 --> 03:06:25,120 TO GO IN BETWEEN TWO DIFFERENT 4782 03:06:25,120 --> 03:06:31,320 FUNDS OF KNOWLEDGE VERY FLUIDLY. 4783 03:06:31,320 --> 03:06:33,920 SO, AS YOU KNOW, THIS IS A 4784 03:06:33,920 --> 03:06:35,320 QUALITATIVE STUDIES THESE ONLY 4785 03:06:35,320 --> 03:06:42,040 REPRESENT THE TIMES THAT THE 4786 03:06:42,040 --> 03:06:50,000 CODERS AND THE BUT THERE MANY 4787 03:06:50,000 --> 03:06:53,080 AND AND IN THE INCOMPETENT VIEWS 4788 03:06:53,080 --> 03:07:02,480 AND SPECIFICALLY AND COME IN UM 4789 03:07:02,480 --> 03:07:09,320 SIMILAR AND FROM THE TRANSCRIPTS 4790 03:07:09,320 --> 03:07:14,680 SO THIS ONE COMES FROM 4791 03:07:14,680 --> 03:07:16,160 PARTICIPANT. 4792 03:07:16,160 --> 03:07:17,680 A 55-YEAR-OLD MOTHER OF THREE. 4793 03:07:17,680 --> 03:07:19,120 SHE'S A SOUTHERN WOMAN. 4794 03:07:19,120 --> 03:07:23,080 SHE TALKS ABOUT HER STRUGGLES 4795 03:07:23,080 --> 03:07:27,040 SHE HAD TO GET HER SON DIAGNOSED 4796 03:07:27,040 --> 03:07:27,600 WITH AUTISM. 4797 03:07:27,600 --> 03:07:30,680 AFTER HE WAS DIAGNOSED SO SHE 4798 03:07:30,680 --> 03:07:33,600 SAYS, AND HE WAS FIVE GOING ON 4799 03:07:33,600 --> 03:07:35,280 SIX DAY BEING HIS PEDIATRICIAN 4800 03:07:35,280 --> 03:07:39,600 AND SAID NO, THEY WERE GOING TO 4801 03:07:39,600 --> 03:07:42,080 STAY WITH THE ORIGINAL DIAGNOSIS 4802 03:07:42,080 --> 03:07:43,400 AND ANYWAY, WE WERE FUSSING AT 4803 03:07:43,400 --> 03:07:45,760 THE DOCTOR AND KINDS OF GETTING 4804 03:07:45,760 --> 03:07:47,680 SMART WITH HER AND TELLING HER 4805 03:07:47,680 --> 03:07:48,520 BASICALLY, YOU CAN GO WITH 4806 03:07:48,520 --> 03:07:50,400 ANYTHING THAT YOU WANT TO GO 4807 03:07:50,400 --> 03:07:52,400 WITH, BUT I AM GOING TO GET HIM 4808 03:07:52,400 --> 03:07:52,920 TESTED. 4809 03:07:52,920 --> 03:07:54,320 YOU JUST CAN MAKE THIS EASY ON 4810 03:07:54,320 --> 03:07:55,600 ME. 4811 03:07:55,600 --> 03:07:57,360 OTHERWISE I'M COMING THROUGH THE 4812 03:07:57,360 --> 03:07:58,040 BACK DOOR. 4813 03:07:58,040 --> 03:08:00,720 BUT I'M GOING TO HAVE THIS TEST 4814 03:08:00,720 --> 03:08:02,240 DONE BECAUSE I KNOW SOMETHING IS 4815 03:08:02,240 --> 03:08:03,160 WRONG. 4816 03:08:03,160 --> 03:08:05,000 IF YOU WERE SO SURE THE ORIGINAL 4817 03:08:05,000 --> 03:08:09,400 DIAGNOSIS IS CORRECT, LET ME 4818 03:08:09,400 --> 03:08:11,280 HAVE THE TEST TO PROVE THAT YOUR 4819 03:08:11,280 --> 03:08:16,920 RIGHT AND I'M WRONG. 4820 03:08:16,920 --> 03:08:18,760 SHE DECIDED SHE WOULD GIVE YOU 4821 03:08:18,760 --> 03:08:19,840 THE AUTHORIZATION TO HAVE HIM 4822 03:08:19,840 --> 03:08:21,320 TESTED AND OF COURSE HE WAS 4823 03:08:21,320 --> 03:08:25,200 DIAGNOSED WITH AUTISM. 4824 03:08:25,200 --> 03:08:26,600 ANOTHER EXAMPLE COMES FROM 4825 03:08:26,600 --> 03:08:28,440 EVELYN A 52-YEAR-OLD MOTHER OF 4826 03:08:28,440 --> 03:08:31,000 TWO AND IT GAVE HER AN EXAMPLE 4827 03:08:31,000 --> 03:08:33,240 OF THE CONSTANT NEED TO ASSERT 4828 03:08:33,240 --> 03:08:37,200 HERSELF WHEN IT CAME TO HER 4829 03:08:37,200 --> 03:08:47,320 SONS. 4830 03:08:54,640 --> 03:08:58,200 AND WHAPMAGOOSTUI IS BEST FOR 4831 03:08:58,200 --> 03:08:59,040 YOUR CHILD. 4832 03:08:59,040 --> 03:09:01,080 >>INSTANCES OF NAVIGATIONAL 4833 03:09:01,080 --> 03:09:03,960 CAPITOL, I REALLY TRY TO PULL 4834 03:09:03,960 --> 03:09:06,280 UPON SOME OF THE DATA IN 4835 03:09:06,280 --> 03:09:08,320 PARTICULAR THAT WAS FOCUSING IN 4836 03:09:08,320 --> 03:09:14,680 ON MEDICAL DOCTORS AND SO 4837 03:09:14,680 --> 03:09:16,560 NAVIGATION IS THIS IDEA TO THE 4838 03:09:16,560 --> 03:09:18,720 MOTHERS WHEN WERE ABLE TO HAVE 4839 03:09:18,720 --> 03:09:20,080 BE SAVVY AND NAVIGATING THROUGH 4840 03:09:20,080 --> 03:09:22,400 SYSTEMS AND SYSTEMS SPECIFICALLY 4841 03:09:22,400 --> 03:09:24,560 BILL WITHIN NOT IN MIND AND SO 4842 03:09:24,560 --> 03:09:28,800 THIS IS AN EXAMPLE OF MAY USING 4843 03:09:28,800 --> 03:09:31,400 NAVIGATIONAL AND I'M TIRED, I 4844 03:09:31,400 --> 03:09:37,120 WENT TO SO MANY DOCTORS AND THEY 4845 03:09:37,120 --> 03:09:39,320 TELL ME THESE ARE FREAK SENDS, 4846 03:09:39,320 --> 03:09:40,320 BOYS WILL BE BOYS. 4847 03:09:40,320 --> 03:09:41,520 I CAN'T TAKE IT ANYMORE. 4848 03:09:41,520 --> 03:09:43,840 I SAID, DEEP IN MY HEART I KNOW 4849 03:09:43,840 --> 03:09:44,880 THERE'S SOMETHING WRONG WITH MY 4850 03:09:44,880 --> 03:09:49,280 CHILD BUT I CANNOT GET 20 WHAT 4851 03:09:49,280 --> 03:09:52,920 TESTING SO I CAN KNOWS WHAT IS 4852 03:09:52,920 --> 03:09:54,400 GOING ON I SAID I JUST WANT TO 4853 03:09:54,400 --> 03:09:56,240 LOOK AT, I WANT YOU TO LOOK AT 4854 03:09:56,240 --> 03:09:57,560 HIS FILES AND IF YOU CAN 4855 03:09:57,560 --> 03:09:59,120 HONESTLY LOOK AT HIS FILES AND 4856 03:09:59,120 --> 03:10:01,160 COME BACK AND SAY, ONCE AGAIN, 4857 03:10:01,160 --> 03:10:05,160 IN MY LIFE, BOYS WILL BE BOYS, 4858 03:10:05,160 --> 03:10:06,640 IT'S JUST A FREQUENT ACCIDENT, 4859 03:10:06,640 --> 03:10:09,680 THEN I'LL TAKE IT AND THIS IS 4860 03:10:09,680 --> 03:10:10,920 ADVOCATING FOR HER SON WHO 4861 03:10:10,920 --> 03:10:16,160 ACTUALLY WAS EARLY ONSET 4862 03:10:16,160 --> 03:10:16,480 OSTEOPOROSIS. 4863 03:10:16,480 --> 03:10:17,680 IF IT WASN'T, HER SON WOULD HAVE 4864 03:10:17,680 --> 03:10:22,320 NEVER GOTTEN THE SUPPORT THEY 4865 03:10:22,320 --> 03:10:23,280 NEEDED. 4866 03:10:23,280 --> 03:10:26,800 IN THIS LAST INSTANCE, IT'S 4867 03:10:26,800 --> 03:10:31,920 COMING FROM JOSEPHINE A 4868 03:10:31,920 --> 03:10:34,720 24-YEAR-OLD MOTHER OF SETS OF 4869 03:10:34,720 --> 03:10:35,760 TWO TWINS AND SHE WENT TO 4870 03:10:35,760 --> 03:10:42,760 MULTIPLE DOCTORS BEFORE ANY OF 4871 03:10:42,760 --> 03:10:45,600 HER CONCERNS AND THE FIRST PART 4872 03:10:45,600 --> 03:10:47,200 TALKS ABOUT SHE SAID, I FOUND 4873 03:10:47,200 --> 03:10:49,440 ANOTHER DOCTOR AND I DIDN'T KNOW 4874 03:10:49,440 --> 03:10:50,480 WHERE I WAS GOING AND I JUST 4875 03:10:50,480 --> 03:10:51,960 KNOW THAT I NEEDED SOMEONE TO 4876 03:10:51,960 --> 03:10:54,440 TAKE ME AND MY DAUGHTERS 4877 03:10:54,440 --> 03:10:54,760 SERIOUSLY. 4878 03:10:54,760 --> 03:10:56,680 THE DOCTOR I HAD BEFORE REALLY 4879 03:10:56,680 --> 03:10:59,080 WAS MAKING ME FEEL LIKE I WAS 4880 03:10:59,080 --> 03:11:01,640 CRAZY AND I STARTED TO FEEL 4881 03:11:01,640 --> 03:11:05,560 LIKE, I STARTED INFORM FEEL I 4882 03:11:05,560 --> 03:11:08,440 KEPT MAKING APPOINTMENTS AFTER 4883 03:11:08,440 --> 03:11:11,440 APPOINTMENTS CHECKING IN WITH 4884 03:11:11,440 --> 03:11:13,120 HER HEARING, CAN YOU DO THIS AND 4885 03:11:13,120 --> 03:11:15,880 HE WAS JUST LIKE WHY DON'T YOU 4886 03:11:15,880 --> 03:11:17,000 JUST WAIT? 4887 03:11:17,000 --> 03:11:19,720 UNTIL SHE TURNS 2 TO SEE IF 4888 03:11:19,720 --> 03:11:22,600 SHE'S GOING TO TALK? 4889 03:11:22,600 --> 03:11:25,880 LET HER TURN 2 AND SO THIS IS 4890 03:11:25,880 --> 03:11:27,360 ACTUALLY A COMMON THEME CAN AND 4891 03:11:27,360 --> 03:11:30,360 THIS IDEA OF WAIT AND SEE AND 4892 03:11:30,360 --> 03:11:33,080 HOW EVEN IN DESPITE THE FACT 4893 03:11:33,080 --> 03:11:34,400 THAT MOTHERS ARE ADAMANT AND 4894 03:11:34,400 --> 03:11:36,960 THEY REALLY KNOW THAT THERE'S 4895 03:11:36,960 --> 03:11:39,720 SOMETHING THAT THEY NEED TO HAVE 4896 03:11:39,720 --> 03:11:41,280 MORE FURTHER ASSESSMENTS FOR 4897 03:11:41,280 --> 03:11:45,880 THEIR CHILDREN, THEY'RE BEING 4898 03:11:45,880 --> 03:11:48,720 IGNORED. 4899 03:11:48,720 --> 03:11:49,960 SO THESE STORIES IN THE PREVIOUS 4900 03:11:49,960 --> 03:11:51,160 PUBLICATION ARE EVIDENCE OF 4901 03:11:51,160 --> 03:11:53,280 PEOPLE EXPERIENCING RACISM AND 4902 03:11:53,280 --> 03:11:54,960 ABLEISM AND NAVIGATING A SCHOOL 4903 03:11:54,960 --> 03:11:56,880 MEDICAL SYSTEMS FOR THEIR 4904 03:11:56,880 --> 03:11:57,320 CHILDREN. 4905 03:11:57,320 --> 03:11:59,640 WE KNOW THIS DOES NOT STOP WHEN 4906 03:11:59,640 --> 03:12:01,920 THE AUTISTIC CHILD IS AN ADULT. 4907 03:12:01,920 --> 03:12:03,640 SO, JUST LIKE Dr. HALL POINTED 4908 03:12:03,640 --> 03:12:07,120 OUT IN OUR FIRST SESSION, THAT 4909 03:12:07,120 --> 03:12:13,560 WE HAVE RESEARCH THAT REALLY 4910 03:12:13,560 --> 03:12:16,280 VERIFIES TO ACCESS IN HEALTHCARE 4911 03:12:16,280 --> 03:12:16,600 DISPARITIES. 4912 03:12:16,600 --> 03:12:17,520 HOWEVER, WE HAVE FEW STUDIES 4913 03:12:17,520 --> 03:12:20,120 THAT HAVE LOOKED AT HOW THE 4914 03:12:20,120 --> 03:12:22,040 COMBINATION OF THE PERSON'S 4915 03:12:22,040 --> 03:12:23,840 DISABILITY SPECIFICALLY AUTISM, 4916 03:12:23,840 --> 03:12:26,200 AND RACIAL ETHNIC IDENTITIES 4917 03:12:26,200 --> 03:12:27,520 THAT THOSE AFFECT THEIR HEALTH 4918 03:12:27,520 --> 03:12:28,840 AS THEY'RE ADULTS. 4919 03:12:28,840 --> 03:12:32,080 AND IN THIS STUDY DONE WITH 4920 03:12:32,080 --> 03:12:33,480 JENNIFER AND HER COLLEAGUES AND 4921 03:12:33,480 --> 03:12:36,920 AS WELL AS BLACK AUTISTIC 4922 03:12:36,920 --> 03:12:39,840 ADVOCATE MORNA KEY, FOUND THIS 4923 03:12:39,840 --> 03:12:41,400 DUEL EXPERIENCE OF ABLEISM AND 4924 03:12:41,400 --> 03:12:43,680 STRUCTURAL RACISM, MAY HAVE A 4925 03:12:43,680 --> 03:12:45,320 LARGER NEGATIVE EFFECT ON HEALTH 4926 03:12:45,320 --> 03:12:49,200 AND AUTISTIC PEOPLE OF COLOR 4927 03:12:49,200 --> 03:12:51,680 THAN EITHER ONE EXPERIENCE 4928 03:12:51,680 --> 03:12:52,200 ALONE. 4929 03:12:52,200 --> 03:12:53,520 THIS POINTS TO THE IMPORTANCE OF 4930 03:12:53,520 --> 03:12:57,160 IDENTIFYING HEALTH DISPARITIES 4931 03:12:57,160 --> 03:13:00,240 AND SO WRE WE CAN ADDRESS THEM. 4932 03:13:00,240 --> 03:13:02,640 IN THE STUDY, WE STUDIED A 4933 03:13:02,640 --> 03:13:04,560 DIVERSE GROUP OF ABOUT 1500 4934 03:13:04,560 --> 03:13:07,480 AUTISTIC ADULTS AND ABOUT 15,000 4935 03:13:07,480 --> 03:13:10,400 NON AUTISTIC ADULTS WHO ALL 4936 03:13:10,400 --> 03:13:11,120 RECEIVED HEALTH CARE FROM THE 4937 03:13:11,120 --> 03:13:15,080 SAME LARGE HEALTH PLAN IN 4938 03:13:15,080 --> 03:13:15,760 CALIFORNIA. 4939 03:13:15,760 --> 03:13:16,960 WE EXAMINED THE ELECTRONIC 4940 03:13:16,960 --> 03:13:18,000 HEALTH RECORDS TO EXAMINE 4941 03:13:18,000 --> 03:13:21,800 WHETHER DIAGNOSIS OF HEALTH 4942 03:13:21,800 --> 03:13:23,000 CONDITIONS DIFFER BY AUTISM 4943 03:13:23,000 --> 03:13:28,480 STATUS AND RACE AND ETHNICITY. 4944 03:13:28,480 --> 03:13:29,320 WE LOOKED WHETHER THEY WERE 4945 03:13:29,320 --> 03:13:31,160 DIAGNOSED WITH THESE CONDITIONS 4946 03:13:31,160 --> 03:13:34,120 COMPARED TO OTHER GROUPS. 4947 03:13:34,120 --> 03:13:35,640 SO, WHAT WERE THE RESULT THIS IS 4948 03:13:35,640 --> 03:13:37,560 SO HERE ARE SOME EXAMPLES, SOME 4949 03:13:37,560 --> 03:13:38,880 HIGHLIGHTING A FEW. 4950 03:13:38,880 --> 03:13:40,840 WITH EVERY RACIAL ETHNIC GROUP, 4951 03:13:40,840 --> 03:13:42,360 AUTISTIC ADULTS WERE MORE LIKELY 4952 03:13:42,360 --> 03:13:46,080 THAN NON AUTISTIC ADULTS TO BE 4953 03:13:46,080 --> 03:13:47,920 DIAGNOSED WITH MOST MEDICAL 4954 03:13:47,920 --> 03:13:48,720 PSYCHIATRIC CONDITIONS. 4955 03:13:48,720 --> 03:13:51,080 AMONG THE AUTISTIC GROUPS, BLACK 4956 03:13:51,080 --> 03:13:52,760 HISPANIC ASIAN ADULTS WERE LESS 4957 03:13:52,760 --> 03:13:54,600 LIKELY TO BE DIAGNOSED WITH 4958 03:13:54,600 --> 03:13:56,040 PSYCHIATRIC CONDITIONS COMPARED 4959 03:13:56,040 --> 03:13:57,600 TO WHITE ADULTS. 4960 03:13:57,600 --> 03:13:59,880 WE SAW SIMILAR DIFFERENCES IN 4961 03:13:59,880 --> 03:14:01,600 PSYCHIATRIC DIAGNOSIS BY RACE 4962 03:14:01,600 --> 03:14:03,840 AND ETHNICITY. 4963 03:14:03,840 --> 03:14:05,800 AMONG NON AUTISTIC ADULTS. 4964 03:14:05,800 --> 03:14:11,280 BUT FURTHER, THE DIAGNOSTIC 4965 03:14:11,280 --> 03:14:13,880 PATTERNS AMONG ADULTS WHO WERE 4966 03:14:13,880 --> 03:14:14,680 AUTISTIC AND BLACK SUGGESTED 4967 03:14:14,680 --> 03:14:16,920 THAT THIS GROUP MAY EXPERIENCE 4968 03:14:16,920 --> 03:14:22,720 UNIQUE DIFFICULTIES RECEIVING 4969 03:14:22,720 --> 03:14:26,160 MENTAL HEALTH AND AUTOIMMUNE 4970 03:14:26,160 --> 03:14:26,760 DIAGNOSIS. 4971 03:14:26,760 --> 03:14:29,160 THEY MAY BE AT A HIGHER RISK FOR 4972 03:14:29,160 --> 03:14:30,080 HYPERTENSION. 4973 03:14:30,080 --> 03:14:32,120 SO WHAT DID THESE FINDINGS ADD 4974 03:14:32,120 --> 03:14:33,680 TO WHAT WE ALREADY KNOW? 4975 03:14:33,680 --> 03:14:35,160 WELL, PREVIOUS STUDIES HAVE 4976 03:14:35,160 --> 03:14:36,840 FOUND THAT RACIAL AND ETHNIC 4977 03:14:36,840 --> 03:14:38,240 DISPARITIES OF BOTH MENTAL 4978 03:14:38,240 --> 03:14:39,240 HEALTH AND ACCESS TO HEALTHCARE 4979 03:14:39,240 --> 03:14:47,120 AMONG AUTISTIC CHILDREN. 4980 03:14:47,120 --> 03:14:47,760 ESPECIALLY MENTAL HEALTH CARE 4981 03:14:47,760 --> 03:14:54,640 MAY EXIST FOR AUTISTIC ADULTS. 4982 03:14:54,640 --> 03:14:56,480 SO, GENERALLY, THERE'S NO LARGE 4983 03:14:56,480 --> 03:14:57,720 DIFFERENCES IN RACE ETHNICITY 4984 03:14:57,720 --> 03:15:00,080 AND AUTISM STATUS FOR ASTHMA. 4985 03:15:00,080 --> 03:15:04,600 WITH THE EXCEPTION OF OTHER RACE 4986 03:15:04,600 --> 03:15:06,240 CATEGORIES WHICH WAS SOMETHING 4987 03:15:06,240 --> 03:15:07,120 THAT CAME UP. 4988 03:15:07,120 --> 03:15:09,920 BUT THE AUTISTIC ADULTS THAT HAD 4989 03:15:09,920 --> 03:15:12,400 LOWER THAN EXPECTED PREVALENCE 4990 03:15:12,400 --> 03:15:14,680 OF AUTOIMMUNE DISORDERS, IN 4991 03:15:14,680 --> 03:15:19,440 COMPARISON TO NON AUTISTIC BLACK 4992 03:15:19,440 --> 03:15:21,200 PEER AND OTHER RACE AND ETH NICE 4993 03:15:21,200 --> 03:15:23,120 TEASE SO THIS SUGGESTS THAT WE 4994 03:15:23,120 --> 03:15:25,640 MAY FACE BARRIERS IN GETTING AN 4995 03:15:25,640 --> 03:15:30,800 AUTOIMMUNE DIAGNOSIS. 4996 03:15:30,800 --> 03:15:32,440 HYPER PENSION WAS DIAGNOSED MORE 4997 03:15:32,440 --> 03:15:36,600 OFTEN THAN WE EXPECTED AMONG DOW 4998 03:15:36,600 --> 03:15:37,200 ADVERTISE TICK BLACK ADULT AND 4999 03:15:37,200 --> 03:15:42,000 THIS IS A CLOSER LOOK, CLOSER 5000 03:15:42,000 --> 03:15:52,480 ATTENTION TO THIS IS HEALTH 5001 03:15:59,320 --> 03:16:03,000 DISPARITIES IN THE NON AUTISTIC 5002 03:16:03,000 --> 03:16:04,160 POPULATION ALSO AFFECT THE 5003 03:16:04,160 --> 03:16:06,440 AUTISTIC POPULATION. 5004 03:16:06,440 --> 03:16:09,080 SO, IMPLICATIONS FOR ALL OF THIS 5005 03:16:09,080 --> 03:16:11,440 WORK. 5006 03:16:11,440 --> 03:16:15,440 REALLY, CALL FOR WHAT Dr. 5007 03:16:15,440 --> 03:16:17,120 MITRA SAID WHICH IS A CALL FOR 5008 03:16:17,120 --> 03:16:17,920 ACTION, RIGHT. 5009 03:16:17,920 --> 03:16:20,720 WE NEED TO WORK TO' MEAL RATE 5010 03:16:20,720 --> 03:16:22,760 OUR CURRENT SYSTEMS TO ENGAGE 5011 03:16:22,760 --> 03:16:24,160 FAMILIES AND SPECIFICALLY 5012 03:16:24,160 --> 03:16:26,760 FAMILIES OF COLOR AND ADDRESS 5013 03:16:26,760 --> 03:16:28,720 THE DISPARITIES THAT WE HAVE. 5014 03:16:28,720 --> 03:16:30,920 AND REALLY SEE THEM, NOT AS RED 5015 03:16:30,920 --> 03:16:32,720 FLAGS FOR DEEPER ISSUES AND THAT 5016 03:16:32,720 --> 03:16:34,880 ARE PART OF OUR PRACTICE AND OUR 5017 03:16:34,880 --> 03:16:37,920 POLICY AND ADDRESS THOSE THINGS. 5018 03:16:37,920 --> 03:16:39,440 THAT ALSO INVOLVES DEVELOPING 5019 03:16:39,440 --> 03:16:40,560 INTERVENTIONS THAT YOU ARE 5020 03:16:40,560 --> 03:16:43,800 FAMILY INTERESTED WHICH INCLUDES 5021 03:16:43,800 --> 03:16:51,080 CULTURE AND RACE AND LANGUAGE, 5022 03:16:51,080 --> 03:17:01,560 AND THANK YOU AND I'LL TAKE 5023 03:17:21,760 --> 03:17:22,800 QUESTIONS IF WE HAVE TIME. 5024 03:17:22,800 --> 03:17:23,400 >>Adam: THANK YOU. 5025 03:17:23,400 --> 03:17:24,960 IT LOOKS LIKE WE ONLY HAVE A 5026 03:17:24,960 --> 03:17:25,840 COUPLE COMMENTS IN THE CHAT. 5027 03:17:25,840 --> 03:17:27,600 WE DO, WE'RE ALSO AT TIME. 5028 03:17:27,600 --> 03:17:29,560 I WANT TODAY ASK A GENERAL 5029 03:17:29,560 --> 03:17:30,280 QUESTION. 5030 03:17:30,280 --> 03:17:30,920 GIVEN THAT YOU HAVE NIH AND 5031 03:17:30,920 --> 03:17:32,880 MEMBERS OF THE BIOMEDICAL AND 5032 03:17:32,880 --> 03:17:33,840 BEHAVIORAL RESEARCH COMMUNITY 5033 03:17:33,840 --> 03:17:35,000 HERE AND YOU HAVE A PLATFORM 5034 03:17:35,000 --> 03:17:35,880 WHAT'S RECOMMENDATIONS WOULD YOU 5035 03:17:35,880 --> 03:17:36,240 MAKE? 5036 03:17:36,240 --> 03:17:38,280 WHAT DO YOU WANT TO SEE US DO 5037 03:17:38,280 --> 03:17:39,080 MOVE FORWARD? 5038 03:17:39,080 --> 03:17:41,360 >>YOU KNOW, THANK YOU FOR THAT. 5039 03:17:41,360 --> 03:17:44,040 I THINK WHAT WE'RE DEFINITELY 5040 03:17:44,040 --> 03:17:46,400 GOING IN THE POSITIVE DIRECTION 5041 03:17:46,400 --> 03:17:48,840 AND THAT WE'RE STARTING TO MAKE 5042 03:17:48,840 --> 03:17:52,560 SURE THAT WE HAVE FUNDING 5043 03:17:52,560 --> 03:17:55,200 OPTIONS AND PRIORITIES ON 5044 03:17:55,200 --> 03:17:57,720 INCLUDING INTERSECTIONALITY 5045 03:17:57,720 --> 03:17:59,640 ASPECTS OF OUR IDENTITIES AND 5046 03:17:59,640 --> 03:18:01,880 RESEARCH PROJECTS AND 5047 03:18:01,880 --> 03:18:04,480 PRIORITIZING THOSE THINGS. 5048 03:18:04,480 --> 03:18:06,720 I THINK MAKING SURE WE'RE HAVING 5049 03:18:06,720 --> 03:18:10,640 COMMUNITY BASED PROJECTS IS A 5050 03:18:10,640 --> 03:18:14,160 KEY PART OF THIS JUST BECAUSE WE 5051 03:18:14,160 --> 03:18:16,160 KNOW OF THE HISTORICAL 5052 03:18:16,160 --> 03:18:17,480 COMPLEXITIES THAT KEEP CERTAIN 5053 03:18:17,480 --> 03:18:19,840 COMMUNITIES FROM THE TABLE SO WE 5054 03:18:19,840 --> 03:18:21,320 HAVE TO PRIORITIZE THAT WE'RE 5055 03:18:21,320 --> 03:18:24,160 HEARING THE COMMUNITY VOICE AND 5056 03:18:24,160 --> 03:18:25,800 INCLUDING THE COMMUNITY AND NOT 5057 03:18:25,800 --> 03:18:27,200 BEING A PART OF THE SOLUTIONS OF 5058 03:18:27,200 --> 03:18:29,760 THE PROBLEMS THAT WE HAVE. 5059 03:18:29,760 --> 03:18:31,080 THANK YOU. 5060 03:18:31,080 --> 03:18:32,640 >>Adam: THANK YOU SO MUCH. 5061 03:18:32,640 --> 03:18:34,280 AND WITH THAT WE'RE AT TIME FOR 5062 03:18:34,280 --> 03:18:34,680 THE SESSION. 5063 03:18:34,680 --> 03:18:38,000 I WANT TO GIVE A ENTHUSIASTIC 5064 03:18:38,000 --> 03:18:40,080 THANK YOU TO DOCTORS FOR THEIR 5065 03:18:40,080 --> 03:18:41,400 PRESENTATIONS TODAY AND THEIR ON 5066 03:18:41,400 --> 03:18:42,480 GOING WORK IN THE AREA OF 5067 03:18:42,480 --> 03:18:44,120 DISABILITIES AND HEALTH 5068 03:18:44,120 --> 03:18:44,440 DISPARITIES. 5069 03:18:44,440 --> 03:18:45,240 THANK YOU ALL SO MUCH. 5070 03:18:45,240 --> 03:18:46,760 NEXT IS A SHORT BREAK. 5071 03:18:46,760 --> 03:18:48,280 PLEASE STAY CONNECTED TO THE 5072 03:18:48,280 --> 03:18:50,440 ZOOM AND MAKE SURE TO RETURN AT 5073 03:18:50,440 --> 03:18:52,600 3:20 FOR OUR PANEL DISCUSSION ON 5074 03:18:52,600 --> 03:18:53,920 BARRIERS TO CLINICAL CARE AND 5075 03:18:53,920 --> 03:18:54,360 RESEARCH. 5076 03:18:54,360 --> 03:19:02,600 THANK YOU, EVERYONE. 5077 03:19:02,600 --> 03:19:05,880 >> IT'S NOW 3:20 AND MY 5078 03:19:05,880 --> 03:19:07,000 NAME IS JOE BONNER I'M A OFFICER 5079 03:19:07,000 --> 03:19:08,160 WITH THE NATIONAL CENTER FOR 5080 03:19:08,160 --> 03:19:18,480 MEDICAL REHABILITATION RESEARCH. 5081 03:19:18,480 --> 03:19:21,520 I AM EXCITED TO WORK WITH THIS 5082 03:19:21,520 --> 03:19:24,080 PANEL TODAY AND I AM A CAUCASIAN 5083 03:19:24,080 --> 03:19:25,440 MAN WITH BROWN HAIR AND BROWN 5084 03:19:25,440 --> 03:19:27,320 GLASSES. 5085 03:19:27,320 --> 03:19:29,360 I'M ALSO WE ARE A PURPLE SHIRT 5086 03:19:29,360 --> 03:19:35,640 WEARING A PURPLE SHIRTWITH A BL. 5087 03:19:35,640 --> 03:19:40,400 I WOULD LIKE TO INTRODUCE 5088 03:19:40,400 --> 03:19:41,160 JENNIFER SENDAPART OF THE 5089 03:19:41,160 --> 03:19:46,920 DISABLED PARENTING PROJECT. 5090 03:19:46,920 --> 03:19:48,080 BARRIE MUNRO IS A CHIEF 5091 03:19:48,080 --> 03:19:49,160 DEVELOPMENT OFFICER OF THE 5092 03:19:49,160 --> 03:19:51,280 CANADIAN SPINAL RESEARCH 5093 03:19:51,280 --> 03:19:51,640 ORGANIZATIONS. 5094 03:19:51,640 --> 03:19:53,880 AFTER WORKING AS A PERSONAL 5095 03:19:53,880 --> 03:19:55,560 INJURY ATTORNEY, HE DECIDED TO 5096 03:19:55,560 --> 03:19:57,000 DEDICATE HIS TIME FULLY TO HELP 5097 03:19:57,000 --> 03:20:05,880 FIND A CURE TO PARALYSIS. 5098 03:20:05,880 --> 03:20:10,040 MAX BAROWS HE MENTORS YOUTH AND 5099 03:20:10,040 --> 03:20:11,680 ADULTS WITH DISABILITY TO SPEAK 5100 03:20:11,680 --> 03:20:13,280 UP WITH THEMSELVES AND BE 5101 03:20:13,280 --> 03:20:13,520 LEADERS. 5102 03:20:13,520 --> 03:20:14,960 MAX CONNECTS WITH PEOPLE ON ALL 5103 03:20:14,960 --> 03:20:20,160 LEVELS AND ADVOCATING FOR TRUE 5104 03:20:20,160 --> 03:20:24,000 INCLUSION OF PEOPLE WITH 5105 03:20:24,000 --> 03:20:25,440 DEVELOPMENTAL DISABILITIES. 5106 03:20:25,440 --> 03:20:27,320 THIS IS QUESTION AND ANSWER. 5107 03:20:27,320 --> 03:20:28,240 I INVITE EVERYONE TO PLEASE 5108 03:20:28,240 --> 03:20:29,320 START PUTTING THEIR QUESTIONS 5109 03:20:29,320 --> 03:20:33,080 INTO THE Q&A BOX. 5110 03:20:33,080 --> 03:20:35,960 AND WHILE WE'RE WAITING, I'LL 5111 03:20:35,960 --> 03:20:37,880 GIVE EVERYONE A FEW MOMENTS TO 5112 03:20:37,880 --> 03:20:39,440 INTRODUCE THEMSELVES AND TALK 5113 03:20:39,440 --> 03:20:40,680 ABOUT WHAT THEY WOULD LIKE TO 5114 03:20:40,680 --> 03:20:43,080 GET OUT OF THIS Q&A SESSION. 5115 03:20:43,080 --> 03:20:47,360 SO, JENNIFER, CAN WE START WITH 5116 03:20:47,360 --> 03:20:49,160 YOU. 5117 03:20:49,160 --> 03:20:49,640 >>HI. 5118 03:20:49,640 --> 03:20:52,960 MY NAME IS JENNIFER SENDA, I'M 5119 03:20:52,960 --> 03:20:57,360 MAKING SURE YOU CAN HEAR ME. 5120 03:20:57,360 --> 03:20:57,680 >>Joe: YES. 5121 03:20:57,680 --> 03:21:00,120 >>I AM A MOTHER WITH CEREBRAL 5122 03:21:00,120 --> 03:21:01,280 PALSY. 5123 03:21:01,280 --> 03:21:05,920 I AM ALSO FIRST-GENERATION 5124 03:21:05,920 --> 03:21:07,200 MEXICAN-AMERICAN. 5125 03:21:07,200 --> 03:21:09,880 SO, THERE WAS A LANGUAGE BARRIER 5126 03:21:09,880 --> 03:21:12,880 WHEN I WAS BORN SO THAT ALSO 5127 03:21:12,880 --> 03:21:15,320 CONTRIBUTED TO SOME OF THE 5128 03:21:15,320 --> 03:21:17,880 ABLEISM MAYBE, I FELT WHEN I WAS 5129 03:21:17,880 --> 03:21:18,160 YOUNGER. 5130 03:21:18,160 --> 03:21:23,880 I HAVE A 13-YEAR-OLD SON WHO HAS 5131 03:21:23,880 --> 03:21:26,040 ADHD AND ICON CONTRIBUTING TO 5132 03:21:26,040 --> 03:21:27,640 THE DISABLED PARTICIPATING 5133 03:21:27,640 --> 03:21:31,960 PROJECTS AS WELL AS SOME OTHER 5134 03:21:31,960 --> 03:21:32,240 PROJECTS. 5135 03:21:32,240 --> 03:21:33,000 >>Joe: THANK YOU. 5136 03:21:33,000 --> 03:21:34,760 NEXT CAN I ASK BARRIE. 5137 03:21:34,760 --> 03:21:37,080 >>HI, BARRIE MUNRO HERE. 5138 03:21:37,080 --> 03:21:39,720 I'M A WHITE MALE WEARING 5139 03:21:39,720 --> 03:21:39,960 GLASSES. 5140 03:21:39,960 --> 03:21:41,800 I USED TO HAVE DARK HAIR NOW 5141 03:21:41,800 --> 03:21:47,040 IT'S GRAY AND A BLUE QUARTER-ZIP 5142 03:21:47,040 --> 03:21:49,480 HOODIE. 5143 03:21:49,480 --> 03:21:50,880 I AM A QUAD DRAMA EVENING I CAN 5144 03:21:50,880 --> 03:22:01,560 QUADRIPLEGIC.FROM A SPINAL CORD. 5145 03:22:01,560 --> 03:22:07,160 AND TO A CURE AND SO MY OF 5146 03:22:07,160 --> 03:22:08,600 EXPERIENCE AND EXPOSURE TO 5147 03:22:08,600 --> 03:22:10,720 ABLEISM IN THE RESEARCH SETTING 5148 03:22:10,720 --> 03:22:13,240 HAS BEEN QUITE A JOURNEY SO TO 5149 03:22:13,240 --> 03:22:15,360 SPEAK AND WE THINK THAT WE 5150 03:22:15,360 --> 03:22:16,720 HOPEFULLY FOUND SOME WAYS TO 5151 03:22:16,720 --> 03:22:19,960 WORK WITH THAT AND GET THROUGH 5152 03:22:19,960 --> 03:22:23,760 TO BREAK THAT BARRIER DOWN. 5153 03:22:23,760 --> 03:22:24,800 >>Joe: AND MAX -- CAN YOU 5154 03:22:24,800 --> 03:22:25,680 PLEASE INTRODUCE YOURSELF. 5155 03:22:25,680 --> 03:22:29,400 >>YES, I'M MAX BARROWS. 5156 03:22:29,400 --> 03:22:31,840 OUTREACH DIRECTOR GREEN MOUNTAIN 5157 03:22:31,840 --> 03:22:32,840 SELF-ADVOCATES THE DISABILITY 5158 03:22:32,840 --> 03:22:34,200 RIGHTS ORGANIZATION I WORK FOR 5159 03:22:34,200 --> 03:22:37,720 IN THE STATE OF VERMONT. 5160 03:22:37,720 --> 03:22:39,640 I AM OF COURSE I'M BLACK, I AM 5161 03:22:39,640 --> 03:22:43,840 ALSO A PERSON ON THE AUTISM 5162 03:22:43,840 --> 03:22:45,440 SPECTRUM AND I AM HERE TODAY 5163 03:22:45,440 --> 03:22:49,880 BECAUSE I WANT TO GIVE YOU 5164 03:22:49,880 --> 03:22:54,760 ADVICE AND SHARE WITH YOU 5165 03:22:54,760 --> 03:22:57,600 INFORMATION FROM THE PERSPECTIVE 5166 03:22:57,600 --> 03:23:01,920 OF PEOPLE WITH DISABILITIES WHEN 5167 03:23:01,920 --> 03:23:05,880 IT COMES TO HOW TO IMPROVE OUR 5168 03:23:05,880 --> 03:23:11,160 HEALTH-CARE SYSTEM. 5169 03:23:11,160 --> 03:23:13,440 >>Joe: MAX, I'D LIKE TO START 5170 03:23:13,440 --> 03:23:13,880 WITH YOU. 5171 03:23:13,880 --> 03:23:15,560 DID YOU ASK SOME OF THE BARRIERS 5172 03:23:15,560 --> 03:23:16,840 YOU'VE EXPERIENCED PERSONALLY 5173 03:23:16,840 --> 03:23:20,160 AND RECEIVING HEALTHCARE? 5174 03:23:20,160 --> 03:23:28,360 >>SO, ONE BARRIER THAT I HAVEN 5175 03:23:28,360 --> 03:23:29,680 COUNT ERT PERSONALLY AND STILL 5176 03:23:29,680 --> 03:23:37,880 DO IS FILLING OUT FORMS THAT 5177 03:23:37,880 --> 03:23:39,240 HAVE QUESTIONS THAT ARE NOT 5178 03:23:39,240 --> 03:23:41,280 ACCESSIBLE, ESPECIALLY, ASKING 5179 03:23:41,280 --> 03:23:49,320 ME LIKE, WHERE I AM AT WITH 5180 03:23:49,320 --> 03:23:51,800 TAKING AND WHEN I GO INTO THE 5181 03:23:51,800 --> 03:23:53,920 DOCTOR, I FILL OUT PAPERWORK AND 5182 03:23:53,920 --> 03:23:56,760 SOMETIMES THEY NEED, THEY NEED 5183 03:23:56,760 --> 03:24:02,120 IT IMMEDIATELY AND BOOZE IT'S AN 5184 03:24:02,120 --> 03:24:03,040 ACCESSIBLE FOR ME TO UNDERSTAND 5185 03:24:03,040 --> 03:24:05,640 WHEN I READ IT, TO WHERE I CAN'T 5186 03:24:05,640 --> 03:24:09,480 ANSWER IT, BUT ALSO LIKE WITH 5187 03:24:09,480 --> 03:24:12,280 THE DEADLINE WHEN THEY NEED THAT 5188 03:24:12,280 --> 03:24:17,080 PAPERWORK DONE, IT MAKES ME FEEL 5189 03:24:17,080 --> 03:24:18,760 LIKE IT DOESN'T MAKE ME FEEL 5190 03:24:18,760 --> 03:24:19,160 SMART. 5191 03:24:19,160 --> 03:24:20,400 IN OTHER WORDS, I SHOULD SNOW 5192 03:24:20,400 --> 03:24:25,680 BETTER WHEN IT COMES TO DOING 5193 03:24:25,680 --> 03:24:29,520 THAT SO I WANTED TO POINT THAT 5194 03:24:29,520 --> 03:24:29,840 OUT. 5195 03:24:29,840 --> 03:24:33,080 ANOTHER BARRIER PEOPLE 5196 03:24:33,080 --> 03:24:35,120 EXPERIENCE IS REALLY KNOWING HOW 5197 03:24:35,120 --> 03:24:38,640 TO FUSE WHAT IS CALLED A MEDICAL 5198 03:24:38,640 --> 03:24:41,280 PORTAL. 5199 03:24:41,280 --> 03:24:42,640 DOCTORS SEND OUT TEST RESULTS TO 5200 03:24:42,640 --> 03:24:46,920 THE PORTAL AND WE NEED TO KNOW 5201 03:24:46,920 --> 03:24:47,680 TO GET THEM. 5202 03:24:47,680 --> 03:24:52,600 WE NEED GUIDANCE ON HOW TO TELL 5203 03:24:52,600 --> 03:24:54,120 PEOPLE WE DO NOT WANT TO USE THE 5204 03:24:54,120 --> 03:24:56,120 PORTAL AND AS A REASONABLE 5205 03:24:56,120 --> 03:24:57,480 ACCOMMODATION, WE WANT TO TALK 5206 03:24:57,480 --> 03:25:01,880 TO A LIVE PERSON ABOUT OUR TEST 5207 03:25:01,880 --> 03:25:05,840 RESULTS AND YOU KNOW, THIRD WE 5208 03:25:05,840 --> 03:25:06,800 NEED MORE INFORMATION ABOUT -- 5209 03:25:06,800 --> 03:25:08,760 WE NEED MORE INFORMATION WHEN WE 5210 03:25:08,760 --> 03:25:13,880 GET A NEW MEDICATION, YOU KNOW. 5211 03:25:13,880 --> 03:25:17,240 BUT WHAT IT DO TO ME AND HOW AIM 5212 03:25:17,240 --> 03:25:20,920 SUPPOSED TO FEEL AND HOW WILL IT 5213 03:25:20,920 --> 03:25:22,000 INTERACT WITH THE OTHER 5214 03:25:22,000 --> 03:25:27,640 MEDICATIONS I'M ALREADY ON AND 5215 03:25:27,640 --> 03:25:29,880 WHAT DO I DO IN MY MEDICATION 5216 03:25:29,880 --> 03:25:32,320 MAKES ME SICK AND TIPS ONSETTING 5217 03:25:32,320 --> 03:25:34,320 UP AN EASY WAY TO REMEMBER TO 5218 03:25:34,320 --> 03:25:44,880 TAKE MEDICATIONS AND WHAT TO DO 5219 03:25:47,040 --> 03:25:51,760 IF A TAKE A MEDICATION AND THE 5220 03:25:51,760 --> 03:25:53,880 FOURTH THING IS COVID SHOWED ME 5221 03:25:53,880 --> 03:25:56,080 HOW THE CDC WEBSITE WAS NOT EASY 5222 03:25:56,080 --> 03:25:57,880 TO GET AROUND OR ANOTHER WORDS 5223 03:25:57,880 --> 03:26:02,120 LIKE TO NAVIGATE AND WHEN 5224 03:26:02,120 --> 03:26:03,320 INFORMATION STARTED COMING OUT 5225 03:26:03,320 --> 03:26:04,760 ABOUT LIKE, YOU KNOW, PEOPLE 5226 03:26:04,760 --> 03:26:07,520 THAT ARE MOST AT RISK OF GETTING 5227 03:26:07,520 --> 03:26:11,600 SIAND DYING FROM COVID, I AS A 5228 03:26:11,600 --> 03:26:13,440 PERSON OF COLOR WITH A 5229 03:26:13,440 --> 03:26:16,080 DISABILITY, I'M BLACK, I'M 5230 03:26:16,080 --> 03:26:19,800 AUTISTIC AND I HAVE ASTHMA AND 5231 03:26:19,800 --> 03:26:23,440 IT'S SAID LIKE WHEN THEY SAID 5232 03:26:23,440 --> 03:26:25,880 THAT LIKE, I'M AT RISK AND I WAS 5233 03:26:25,880 --> 03:26:27,440 IN A GROUP OF PEOPLE WHERE IT 5234 03:26:27,440 --> 03:26:28,440 WAS GETTING SICK FROM COVID AND 5235 03:26:28,440 --> 03:26:30,480 IT WAS NOT EASY TO FIND THAT AND 5236 03:26:30,480 --> 03:26:32,080 IT WAS JUST HARD TO FIND AND IT 5237 03:26:32,080 --> 03:26:37,000 WAS LIKE LINK AFTER LINK AND 5238 03:26:37,000 --> 03:26:41,800 THEN LINK WITHIN A LINK WITHIN A 5239 03:26:41,800 --> 03:26:44,320 LINK SO IT'S JUST THE 5240 03:26:44,320 --> 03:26:46,200 INFORMATION IS SO SCATTERED AND 5241 03:26:46,200 --> 03:26:48,160 BIG WITH BIG WORDS IT WASN'T 5242 03:26:48,160 --> 03:26:49,560 EASY TO UNDERSTAND IT ALL AND IT 5243 03:26:49,560 --> 03:26:57,440 JUST I WOULD LOSE WHERE I WAS AT 5244 03:26:57,440 --> 03:26:58,280 HIGH-RISK AND ANOTHER BETTER 5245 03:26:58,280 --> 03:27:01,440 YEAR AND THIS IS JUST MY LAST 5246 03:27:01,440 --> 03:27:04,640 POINT IN BARRIERS, HOW THEY 5247 03:27:04,640 --> 03:27:06,240 INTERACT WITH THE HEALTHCARE 5248 03:27:06,240 --> 03:27:07,440 PROFESSIONAL DURING AN 5249 03:27:07,440 --> 03:27:09,000 APPOINTMENT AND THERE ARE 5250 03:27:09,000 --> 03:27:11,120 DIFFERENT PEOPLE WHO CHECK, YOU 5251 03:27:11,120 --> 03:27:13,880 KNOW, CHECK YOU IN AND WHO 5252 03:27:13,880 --> 03:27:17,360 EXAMINE YOU, WHO SPECIFIC YOU 5253 03:27:17,360 --> 03:27:19,240 OUT AND THEY EXPECT OTHER WHAT 5254 03:27:19,240 --> 03:27:23,240 OTHER PEOPLE HAVE TOLD US AND 5255 03:27:23,240 --> 03:27:25,360 MANY, MANY MAY NOT, MANY PEOPLE 5256 03:27:25,360 --> 03:27:27,960 MAY NOT KNOW LIKE HOW TO BEST, 5257 03:27:27,960 --> 03:27:29,560 LIKE HOW BEST TO COMMUNICATE 5258 03:27:29,560 --> 03:27:32,480 WITH US. 5259 03:27:32,480 --> 03:27:33,880 SO, THOSE ARE THE BARRIERS THAT 5260 03:27:33,880 --> 03:27:37,960 I CAN THINK OF THAT COME TO 5261 03:27:37,960 --> 03:27:38,360 MIND. 5262 03:27:38,360 --> 03:27:39,680 >>THANK YOU. 5263 03:27:39,680 --> 03:27:42,400 AND, YOU KNOW, YOU ALSO 5264 03:27:42,400 --> 03:27:45,760 MENTIONED SOME ACCOMMODATIONS IN 5265 03:27:45,760 --> 03:27:47,320 THERE AS WELL AND I THINK THAT'S 5266 03:27:47,320 --> 03:27:49,240 THOSE ARE REALLY HELPFUL TO KEEP 5267 03:27:49,240 --> 03:27:53,760 IN MIND IN TERMS OF HOW WE CAN 5268 03:27:53,760 --> 03:27:55,560 MAKE HEALTHCARE MORE ACCESSIBLE 5269 03:27:55,560 --> 03:27:56,720 AND THE TYPES OF THINGS THAT 5270 03:27:56,720 --> 03:27:58,840 NEED TO BE STUDIED IN THE FUTURE 5271 03:27:58,840 --> 03:28:09,200 TO UNDERSTAND THAT. 5272 03:28:19,040 --> 03:28:28,200 SO WE HAVE A COMMENT IN THE Q&A 5273 03:28:28,200 --> 03:28:30,200 SHOULD BE DESIGNED FOR 5274 03:28:30,200 --> 03:28:31,720 ACCESSIBILITY AND INCLUSION AND 5275 03:28:31,720 --> 03:28:32,280 THROUGH THAT WE ARE WEB 5276 03:28:32,280 --> 03:28:33,880 EXPERIENCE AND MAX, WHAT YOU 5277 03:28:33,880 --> 03:28:37,480 WERE SAYING ABOUT THE DIFFICULTY 5278 03:28:37,480 --> 03:28:39,240 OF NAVIGATING THE WEBSITE IT'S 5279 03:28:39,240 --> 03:28:41,440 TRUE FOR EVERYONE AND DESIGNING 5280 03:28:41,440 --> 03:28:45,280 IT FOR IN CONCLUSIVE TEE WILL 5281 03:28:45,280 --> 03:28:47,920 HELP EVERYONE. 5282 03:28:47,920 --> 03:28:49,120 JENNIFER, I'M GOING TO ASK YOU 5283 03:28:49,120 --> 03:28:50,320 THE NEXT QUESTION. 5284 03:28:50,320 --> 03:28:53,240 SO, WHAT ACCESSIBILITY FEATURES 5285 03:28:53,240 --> 03:28:55,680 OR ACCOMMODATION HAVE MADE 5286 03:28:55,680 --> 03:28:56,360 HEALTHIER'S YEAR? 5287 03:28:56,360 --> 03:28:57,560 >>OKAY. 5288 03:28:57,560 --> 03:29:04,880 SO, FOR ME, BECAUSE SOME OF 5289 03:29:04,880 --> 03:29:07,600 THESE CLINICS DON'T HAVE THEM 5290 03:29:07,600 --> 03:29:09,440 WHERE I'M FROM. 5291 03:29:09,440 --> 03:29:10,800 WHEN THEY HAVE THE BED THAT CAN 5292 03:29:10,800 --> 03:29:13,280 LOWER DOWN ALL THE WAY, SO I CAN 5293 03:29:13,280 --> 03:29:16,400 TRANSFER ON TO OR SO THAT MY PCA 5294 03:29:16,400 --> 03:29:18,160 CAN HELP ME TRANSFER ON TO 5295 03:29:18,160 --> 03:29:19,880 WITHOUT HAVING TO STRUGGLE OR 5296 03:29:19,880 --> 03:29:23,800 THE RISK OF ME FALLING, THAT'S 5297 03:29:23,800 --> 03:29:24,200 FANTASTIC. 5298 03:29:24,200 --> 03:29:28,120 SOMETHING AS SIMPLE AS THAT OR 5299 03:29:28,120 --> 03:29:30,960 HAVING AN ACCESSIBLE REST ROOM 5300 03:29:30,960 --> 03:29:35,640 THAT IS ACCESSIBLE VERSE AS I 5301 03:29:35,640 --> 03:29:37,360 SIGN THAT AS, OKAY, IT'S 5302 03:29:37,360 --> 03:29:38,040 ACCESSIBILITY BUT IT'S NOT 5303 03:29:38,040 --> 03:29:48,600 REALLY ACCESSIBLE TO ME -6789D. 5304 03:30:08,000 --> 03:30:09,760 >>THE NEXT ONE I HAVE IS FOR 5305 03:30:09,760 --> 03:30:10,440 YOU, BARRIE. 5306 03:30:10,440 --> 03:30:13,880 I KNOW YOU HAVE A INTEREST IN 5307 03:30:13,880 --> 03:30:14,600 TRAINING. 5308 03:30:14,600 --> 03:30:21,000 AND SO, YOU KNOW, WHAT DO 5309 03:30:21,000 --> 03:30:22,720 MEDICAL STAFF, WHAT TYPES OF 5310 03:30:22,720 --> 03:30:25,320 TRAINING DO MEDICAL STAFF AND 5311 03:30:25,320 --> 03:30:27,960 RESEARCHERS AND SELF-ADVOCATES 5312 03:30:27,960 --> 03:30:30,720 NEED TO BETTER INTERACT WITH 5313 03:30:30,720 --> 03:30:31,440 THEIR ENVIRONMENT? 5314 03:30:31,440 --> 03:30:34,040 >>IT ACTUALLY, IT'S BASED ON 5315 03:30:34,040 --> 03:30:37,160 WHAT BOTH MAX AND NOT JENNIFER 5316 03:30:37,160 --> 03:30:46,240 JUST SAID IN TERMS OF THIS AND 5317 03:30:46,240 --> 03:30:47,800 THE SYSTEM IS SET UP THAT WE'RE 5318 03:30:47,800 --> 03:30:50,280 TOLD THAT THIS IS THE WAY IT IS 5319 03:30:50,280 --> 03:30:52,320 AND THIS IS THE PURE DEFINITION 5320 03:30:52,320 --> 03:30:54,640 OF ABLEISM THAT HERE IS THE 5321 03:30:54,640 --> 03:30:59,040 BASELINE AND FIGURE OUT AND YOU 5322 03:30:59,040 --> 03:31:00,920 PEOPLE THAT CAN'T FIGURE IT OUT. 5323 03:31:00,920 --> 03:31:01,880 THAT ITSELF IS A PROBLEM. 5324 03:31:01,880 --> 03:31:03,560 I MIGHT BE A LITTLE LONG WINDED 5325 03:31:03,560 --> 03:31:05,880 HERE BUT I WANT TO TAKE YOU BACK 5326 03:31:05,880 --> 03:31:07,080 A LINT OF HOW WE GOT TO THE 5327 03:31:07,080 --> 03:31:08,440 THINGS THAT WE'RE DOING IN THAT, 5328 03:31:08,440 --> 03:31:11,560 IN THE RESEARCH WORLD, MANY OF 5329 03:31:11,560 --> 03:31:13,160 YOU HAVE HEARD OF THE MOVEMENT 5330 03:31:13,160 --> 03:31:16,040 IN HEALTHCARE CALLED PATIENT 5331 03:31:16,040 --> 03:31:16,360 ENGAGEMENT. 5332 03:31:16,360 --> 03:31:20,280 THE IDEA OF PATIENTS AND THE 5333 03:31:20,280 --> 03:31:25,040 MEDICAL SYSTEM BEING PARTNERS 5334 03:31:25,040 --> 03:31:26,640 AND HELPING WITH HEALTHCARE AND 5335 03:31:26,640 --> 03:31:30,960 THAT SAME APPROACH HAS BEEN 5336 03:31:30,960 --> 03:31:33,080 APPLIED TO PATIENT ENGAGE UNTIL 5337 03:31:33,080 --> 03:31:38,080 THE RESEARCH AND BEING PARTNERS. 5338 03:31:38,080 --> 03:31:39,920 WHEN WE HEAR THE VERBIAGE OVER 5339 03:31:39,920 --> 03:31:41,760 IT OVER THE YEARS AND THIS IS 5340 03:31:41,760 --> 03:31:43,560 WHAT WE SHOULD BE DOING AND 5341 03:31:43,560 --> 03:31:46,520 THERE WASN'T A MECHANISM OR WAY 5342 03:31:46,520 --> 03:31:48,160 TO MAKE IT HAPPEN AND WE HAD TO 5343 03:31:48,160 --> 03:31:50,720 BREAK IT DOWN TO LOOK AT THE 5344 03:31:50,720 --> 03:31:51,560 BALANCE OF POWER WAS. 5345 03:31:51,560 --> 03:31:55,680 FOR SOMEONE LIKE MYSELF, IN 5346 03:31:55,680 --> 03:31:56,360 SPINAL CORD RESEARCH, DEALING 5347 03:31:56,360 --> 03:31:58,280 WITH RESEARCH, I'M NOT A 5348 03:31:58,280 --> 03:32:01,240 NEUROSCIENTIST SO THERE'S A FORM 5349 03:32:01,240 --> 03:32:04,040 OF INTIMIDATION AND WE LEARNED 5350 03:32:04,040 --> 03:32:06,240 OUR LESSONS FROM OTHER GROUPS 5351 03:32:06,240 --> 03:32:08,520 AND WHAT WE DID TOOK A PAGE OUT 5352 03:32:08,520 --> 03:32:10,520 OF THE RESEARCH SETTING AND THEY 5353 03:32:10,520 --> 03:32:12,000 DECIDED THAT HEY, WE'RE PUTTING 5354 03:32:12,000 --> 03:32:14,840 A LOT INTO THIS WITH MONEY AND 5355 03:32:14,840 --> 03:32:16,480 THIS IS ABOUT OUR COMMUNITY AND 5356 03:32:16,480 --> 03:32:17,760 RIGHT SEARCH IS TAKING PLACE BUT 5357 03:32:17,760 --> 03:32:21,520 IT'S NOT REFLECTING OUR 5358 03:32:21,520 --> 03:32:22,000 PRIORITIES. 5359 03:32:22,000 --> 03:32:23,560 NOR DO WE HAVE A SAY AND WE FEEL 5360 03:32:23,560 --> 03:32:24,480 THERE'S A DISCONNECT. 5361 03:32:24,480 --> 03:32:29,160 HERE IS WHAT WE NEED TO DO AND 5362 03:32:29,160 --> 03:32:30,440 INSTEAD OF EXPLAINING ABOUT IT 5363 03:32:30,440 --> 03:32:37,280 AND THAT'S THE BEST PART OF THIS 5364 03:32:37,280 --> 03:32:46,440 IS THAT WE NEED TO THEIR 5365 03:32:46,440 --> 03:32:50,520 LANGUAGE AND THE RESEARCH REALLY 5366 03:32:50,520 --> 03:32:58,640 THE RESEARCH DYNAMICS AND THE 5367 03:32:58,640 --> 03:33:00,400 RESEARCH ENTERPRISE AS WE CALLED 5368 03:33:00,400 --> 03:33:02,000 IT AND THEN WE WERE LESS 5369 03:33:02,000 --> 03:33:02,920 INTIMIDATED TO BE IN THE 5370 03:33:02,920 --> 03:33:04,040 CONVERSATION TO TELL THEM WHAT 5371 03:33:04,040 --> 03:33:06,920 WE NEED AND WE WANT. 5372 03:33:06,920 --> 03:33:11,800 WE DESIGNED A RESEARCH ADVOCACY 5373 03:33:11,800 --> 03:33:14,000 COURSE WHICH BROKE DOWN RESEARCH 5374 03:33:14,000 --> 03:33:17,880 IN LAY TERMS IT BROKE DOWN THE 5375 03:33:17,880 --> 03:33:19,400 PROCESS IN LAY TERMS AND WE FEEL 5376 03:33:19,400 --> 03:33:25,560 BY DOING THIS AND LEARN FROM 5377 03:33:25,560 --> 03:33:28,760 OTHER PEOPLE YOUR BUILDING 5378 03:33:28,760 --> 03:33:31,800 CAPACITY SO IT'S NOT JENNIFER 5379 03:33:31,800 --> 03:33:33,640 MAX AND BARRIE IT'S PUSHING FOR 5380 03:33:33,640 --> 03:33:34,640 CHANGE TO MAKE THINGS RIGHT AND 5381 03:33:34,640 --> 03:33:41,520 HOPEFULLY ON THE SAME PAGE 5382 03:33:41,520 --> 03:33:42,600 THAT'S WHAT CHANGES THE BALLA 5383 03:33:42,600 --> 03:33:43,160 PART. 5384 03:33:43,160 --> 03:33:44,640 I THINK THE SOLUTIONS LIKE 5385 03:33:44,640 --> 03:33:45,960 JENNIFER SAID SOMETHING THERE, 5386 03:33:45,960 --> 03:33:48,440 IT'S AS SIMPLE AS THAT AND YOU 5387 03:33:48,440 --> 03:33:50,360 KNOW HOW TIMES, IT'S AS SIMPLE 5388 03:33:50,360 --> 03:33:52,240 AS THAT IF FOR SOME REASON, IT 5389 03:33:52,240 --> 03:33:53,680 DOESN'T GET COMMUNICATED TO 5390 03:33:53,680 --> 03:33:55,000 THOSE THAT HAVE TO MAKE THE 5391 03:33:55,000 --> 03:33:56,720 DECISION TO MAKE IT WORK FOR US 5392 03:33:56,720 --> 03:34:02,880 SO, WE HAVE TO WORK ON IT AND I 5393 03:34:02,880 --> 03:34:04,840 THINK WE HAVE TO BEAR THE 5394 03:34:04,840 --> 03:34:08,120 RESPONSIBILITY TOO IN THIS 5395 03:34:08,120 --> 03:34:11,200 PARTNERSHIP AND WE CAN'T SAY 5396 03:34:11,200 --> 03:34:12,720 IT'S WRONG WE'RE ON THE OUTSIDE 5397 03:34:12,720 --> 03:34:13,880 LOOKING IN AND YOU HAVE TO HAVE 5398 03:34:13,880 --> 03:34:18,040 A SOLUTION AND YOU KNOW, WE CAN 5399 03:34:18,040 --> 03:34:21,680 EXPLAIN ACOMPLAIN ABOUT IT BUT R 5400 03:34:21,680 --> 03:34:23,040 HAVE A SOLUTION HOW WE THINK IT 5401 03:34:23,040 --> 03:34:24,360 SHOULD BE FIXED. 5402 03:34:24,360 --> 03:34:26,960 BY BUILDING CAPACITY THAT'S HOW 5403 03:34:26,960 --> 03:34:27,440 IT HAPPENS. 5404 03:34:27,440 --> 03:34:31,320 >>SO YOU HAVE YOUR HAND UP. 5405 03:34:31,320 --> 03:34:33,280 >>I DID. 5406 03:34:33,280 --> 03:34:39,280 I JUST WANT TO SAY THIS, WHEN IT 5407 03:34:39,280 --> 03:34:41,840 COMES TO TRAININGS, IT'S NOT 5408 03:34:41,840 --> 03:34:43,840 JUST ABOUT WHAT HEALTHCARE 5409 03:34:43,840 --> 03:34:47,920 PROVIDERS LEARN HOW TO DO AND 5410 03:34:47,920 --> 03:34:49,440 WHO THEY LEARN IT FROM. 5411 03:34:49,440 --> 03:34:50,880 LIKE, WHO KNOWS US BETTER THAN 5412 03:34:50,880 --> 03:34:53,120 WE KNOW OURSELVES? 5413 03:34:53,120 --> 03:35:03,280 AND LIKE ANY TRAINING, WHEN YOU 5414 03:35:03,280 --> 03:35:05,320 INVOLVE WITH US YOU GET OUR 5415 03:35:05,320 --> 03:35:09,880 PERSPECTIVE ON WHAT NEEDS TO 5416 03:35:09,880 --> 03:35:20,040 HAPPEN. 5417 03:35:23,240 --> 03:35:25,120 HOW CAN FAMILY LEARN TO ADVOCATE 5418 03:35:25,120 --> 03:35:30,200 FOR THEIR HEALTH? 5419 03:35:30,200 --> 03:35:34,520 >>WELL, I THINK MAX, TO WHAT 5420 03:35:34,520 --> 03:35:36,360 MAX SAID TOO, HOW DO WE 5421 03:35:36,360 --> 03:35:36,960 ADVOCATE? 5422 03:35:36,960 --> 03:35:40,200 WE HAVE TO BE ADVOCATES AND YOU 5423 03:35:40,200 --> 03:35:44,400 HAVE TO HAVE A BASELINE OF 5424 03:35:44,400 --> 03:35:46,920 KNOWLEDGE OF WHAT IT IS YOU WANT 5425 03:35:46,920 --> 03:35:49,040 TO CHANGE AND BASIS OF HOW THAT 5426 03:35:49,040 --> 03:35:50,920 CHANGES IN A REASONABLE FASHION. 5427 03:35:50,920 --> 03:35:52,520 WE CAN ASK FOR THE MOON. 5428 03:35:52,520 --> 03:35:53,640 IF YOU WANT IMMEDIATE RESULTS IT 5429 03:35:53,640 --> 03:35:55,040 WON'T HAPPEN THAT WAY. 5430 03:35:55,040 --> 03:35:56,880 THINGS LIKE MAJOR FUNDING. 5431 03:35:56,880 --> 03:35:58,520 WHAT IS A PRACTICAL SOLUTION? 5432 03:35:58,520 --> 03:36:00,120 YOU ALSO HAVE TO BE COMFORTABLE 5433 03:36:00,120 --> 03:36:01,760 BEING AN ADVOCATE AND I KEEP 5434 03:36:01,760 --> 03:36:05,160 GOING BACK TO THIS IS THAT, WE 5435 03:36:05,160 --> 03:36:06,920 NEED TO BE COMFORTABLE IN OUR 5436 03:36:06,920 --> 03:36:09,400 OWN SKIN AND WE'RE NOT 5437 03:36:09,400 --> 03:36:09,720 INTIMIDATED. 5438 03:36:09,720 --> 03:36:10,520 ONE OF THE DEFINITIONS IS 5439 03:36:10,520 --> 03:36:15,040 ABLEISM IS P PATRONNISM. 5440 03:36:15,040 --> 03:36:17,000 I WAS A 23-YEAR-OLD HEALTHY 5441 03:36:17,000 --> 03:36:17,400 WHITE MALE. 5442 03:36:17,400 --> 03:36:19,000 LIFE WAS GOOD. 5443 03:36:19,000 --> 03:36:19,960 GRADUATED UNIVERSITY, WHAT WAS 5444 03:36:19,960 --> 03:36:21,880 IN MY WAY? 5445 03:36:21,880 --> 03:36:22,200 MIDDLE-CLASS? 5446 03:36:22,200 --> 03:36:24,320 AND I BROKE MY NECK AND ALL OF A 5447 03:36:24,320 --> 03:36:26,400 SUDDEN I HAD PEOPLE PATTING ME 5448 03:36:26,400 --> 03:36:27,160 ON THE HEAD. 5449 03:36:27,160 --> 03:36:28,200 TALKING DOWN TO ME. 5450 03:36:28,200 --> 03:36:30,840 THIS IS A LIGHT SWITCH FOR ME 5451 03:36:30,840 --> 03:36:34,320 AND I HAD TO REALIZE I'M BEING 5452 03:36:34,320 --> 03:36:35,080 DISCRIMINATED AGAINST EVEN THE 5453 03:36:35,080 --> 03:36:37,400 MINORITY NOW AND WOW, THAT'S 5454 03:36:37,400 --> 03:36:39,000 WHAT IT'S LIKE. 5455 03:36:39,000 --> 03:36:40,760 YOU HAVE TO BUILD THAT 5456 03:36:40,760 --> 03:36:42,040 SELF-CONFIDENCE UP AGAIN TO SAY 5457 03:36:42,040 --> 03:36:43,240 NO, THIS IS NOT RIGHT. 5458 03:36:43,240 --> 03:36:44,680 SO IT'S A MATTER OF 5459 03:36:44,680 --> 03:36:45,960 SELF-CONFIDENCE BUT I THINK 5460 03:36:45,960 --> 03:36:47,040 THAT'S WHERE THAT CAPACITY 5461 03:36:47,040 --> 03:36:48,720 BUILDING COMES IN AND HOW DOES 5462 03:36:48,720 --> 03:36:50,440 ONE BECOME AN ADVOCATE AND YOU 5463 03:36:50,440 --> 03:36:52,680 DON'T SEE I'M AN ADVOCATE, YOU 5464 03:36:52,680 --> 03:36:54,320 LEARN BECAUSE KNOWLEDGE IS POWER 5465 03:36:54,320 --> 03:36:55,720 AND LEARN EVERYTHING THAT YOU 5466 03:36:55,720 --> 03:36:57,840 CAN ABOUT ALL OF THIS AND YOU 5467 03:36:57,840 --> 03:36:59,640 CAN PUT IT RIGHT BACK IT'S THE 5468 03:36:59,640 --> 03:37:03,880 BEST AMMUNITION YOU COULD USE. 5469 03:37:03,880 --> 03:37:06,480 >>I'D LIKE TO GET JENNIFER AND 5470 03:37:06,480 --> 03:37:08,040 MAX'S VIEW POINTS ON THIS. 5471 03:37:08,040 --> 03:37:12,040 WHAT'S YOUR VIEWPOINT, JENNIFER? 5472 03:37:12,040 --> 03:37:14,640 HOW CAN YOU LEARN TO BE A 5473 03:37:14,640 --> 03:37:14,960 SELF-ADVOCATE? 5474 03:37:14,960 --> 03:37:18,160 >>MY TAKE IS THE SAME AS -- I'M 5475 03:37:18,160 --> 03:37:19,880 SORRY, BARRIE'S. 5476 03:37:19,880 --> 03:37:24,360 I APOLOGIZE, MY SIGHT IS NOT 5477 03:37:24,360 --> 03:37:25,400 WELL TODAY. 5478 03:37:25,400 --> 03:37:30,200 I THINK KNOWLEDGE IS POWER AND 5479 03:37:30,200 --> 03:37:31,320 THE MORE KNOWLEDGEABLE YOU 5480 03:37:31,320 --> 03:37:37,880 BECOME, IT GIVES YOU I'M NOT 5481 03:37:37,880 --> 03:37:39,560 JUST SPEAKING FROM MY EXPERIENCE 5482 03:37:39,560 --> 03:37:42,840 AND I'M SPEAKING THOSE WHO DO 5483 03:37:42,840 --> 03:37:43,800 NOT HAVE A VOICE. 5484 03:37:43,800 --> 03:37:48,560 OR MAY NOT HAVE FOUND THEIR 5485 03:37:48,560 --> 03:37:50,000 VOICES YET. 5486 03:37:50,000 --> 03:37:51,160 BECAUSE KNOWLEDGE IS POWER. 5487 03:37:51,160 --> 03:37:55,080 I MEAN, AS A MOTHER WITH A 5488 03:37:55,080 --> 03:37:57,600 DISABILITY, IT'S VERY, VERY 5489 03:37:57,600 --> 03:37:59,640 INSULTING AND OFFENSIVE HOW MANY 5490 03:37:59,640 --> 03:38:05,480 TIMES THEY ASK ME, OH, YOU ARE 5491 03:38:05,480 --> 03:38:07,040 THE MOTHER BECAUSE MY CHILD 5492 03:38:07,040 --> 03:38:08,080 LOOKS ABLE-BODIED. 5493 03:38:08,080 --> 03:38:13,680 HE DOESN'T HAVE A VISIBLE 5494 03:38:13,680 --> 03:38:14,880 DISABILITY AND SO IT'S LIKE OH, 5495 03:38:14,880 --> 03:38:19,240 YOU ARE THE MOTHER. 5496 03:38:19,240 --> 03:38:19,720 REALLY? 5497 03:38:19,720 --> 03:38:21,200 WE ARE PEOPLE TOO. 5498 03:38:21,200 --> 03:38:22,080 WE HAVE LIVES TOO. 5499 03:38:22,080 --> 03:38:23,680 WE HAVE PERSONALITIES TOO. 5500 03:38:23,680 --> 03:38:25,680 LIFE DIDN'T STOP JUST BECAUSE WE 5501 03:38:25,680 --> 03:38:32,920 HAVE TO USE A MOBILITY DEVICE. 5502 03:38:32,920 --> 03:38:35,200 OR ANY OTHER CHANGES THAT ARE 5503 03:38:35,200 --> 03:38:37,240 HAPPENING OR WE WERE BORN IN 5504 03:38:37,240 --> 03:38:37,840 THIS SITUATION. 5505 03:38:37,840 --> 03:38:43,760 IT JUST DOESN'T STOP. 5506 03:38:43,760 --> 03:38:44,160 >>Joe: RIGHT. 5507 03:38:44,160 --> 03:38:46,680 AND MAX, CAN I TURN TO YOU? 5508 03:38:46,680 --> 03:38:48,040 HOW WOULD YOU TELL PEOPLE TO BE 5509 03:38:48,040 --> 03:38:49,320 A SELF-ADVOCATE? 5510 03:38:49,320 --> 03:38:53,520 >>WELL, I THINK THAT WHAT IT 5511 03:38:53,520 --> 03:38:54,960 STARTS WITH IS WE NEED FIRST OF 5512 03:38:54,960 --> 03:38:59,160 ALL WE NEED TO INVEST IN 5513 03:38:59,160 --> 03:39:01,160 TRAINING AND HIRING PEERS TO 5514 03:39:01,160 --> 03:39:03,000 NAVIGATE THE SYSTEM AND WE FEEL 5515 03:39:03,000 --> 03:39:05,560 MORE COMFORTABLE GETTING ADVICE 5516 03:39:05,560 --> 03:39:10,840 FROM A PEER, LIKE, A PEER WILL 5517 03:39:10,840 --> 03:39:12,600 KNOW WHAT IT IS LIKE GROWING UP 5518 03:39:12,600 --> 03:39:13,760 WITH A DISABILITY. 5519 03:39:13,760 --> 03:39:15,680 A PEER SUPPORTER KNOWS HOW IT 5520 03:39:15,680 --> 03:39:17,320 FEELS TO EXPERIENCE 5521 03:39:17,320 --> 03:39:19,520 DISCRIMINATION WHEN TRYING TO 5522 03:39:19,520 --> 03:39:23,920 ACCESS HEALTHCARE AND WE CAN 5523 03:39:23,920 --> 03:39:32,280 LEARN FROM A PEER HOW TO 5524 03:39:32,280 --> 03:39:34,280 ADVOCATE. 5525 03:39:34,280 --> 03:39:36,040 >>Joe: I'M LOOKING THROUGH THE 5526 03:39:36,040 --> 03:39:42,520 QUESTIONS AND I'M LISTENING. 5527 03:39:42,520 --> 03:39:45,360 WHAT QUESTIONS FROM THE CHAT, 5528 03:39:45,360 --> 03:39:46,920 WHAT ROLE DO YOU THINK NIH HAS 5529 03:39:46,920 --> 03:39:49,480 IN FOSTERING ADVOCATES FOR 5530 03:39:49,480 --> 03:39:52,360 DISABILITIES INCLUSION AND TRUE 5531 03:39:52,360 --> 03:39:54,880 ACCESSIBILITY? 5532 03:39:54,880 --> 03:39:59,520 >>AND I THINK I'LL START WITH 5533 03:39:59,520 --> 03:39:59,920 JENNIFER. 5534 03:39:59,920 --> 03:40:05,880 >>I JUST WANT TO SAY THAT I 5535 03:40:05,880 --> 03:40:08,040 THINK NIH -- THANK NIH FOR 5536 03:40:08,040 --> 03:40:08,880 PROVIDING THESE WEBINARS BECAUSE 5537 03:40:08,880 --> 03:40:11,800 IT GIVES US A PLATFORM TO 5538 03:40:11,800 --> 03:40:14,520 EXPRESS OUR NEEDS AND MAYBE OUR 5539 03:40:14,520 --> 03:40:17,520 IDEAS AND SUGGESTIONS FOR THE 5540 03:40:17,520 --> 03:40:17,760 CHANGES. 5541 03:40:17,760 --> 03:40:22,760 I THINK THAT WHAT MAX SAYS IS 5542 03:40:22,760 --> 03:40:23,000 CORRECT. 5543 03:40:23,000 --> 03:40:25,240 IF WE GET MORE PEER-TO-PEER 5544 03:40:25,240 --> 03:40:27,120 INVOLVEMENT IN TRAINING MAYBE 5545 03:40:27,120 --> 03:40:28,560 THIS WILL OPEN EYES OF NOT JUST 5546 03:40:28,560 --> 03:40:31,320 THE MEDICAL COMMUNITY BUT 5547 03:40:31,320 --> 03:40:33,880 SOCIETY IN GEM TO THE U.S. IS A 5548 03:40:33,880 --> 03:40:38,480 FORCE TO BE RECKONED WITH. 5549 03:40:38,480 --> 03:40:44,400 >>Joe: NEXT I'D GO TO MAX. 5550 03:40:44,400 --> 03:40:46,280 WHAT ROLE DOES THE NIH HAVE FOR 5551 03:40:46,280 --> 03:40:47,720 ACCESSING ADVOCATES AND 5552 03:40:47,720 --> 03:40:48,600 INCLUSION AND TRUE 5553 03:40:48,600 --> 03:40:49,280 ACCESSIBILITY? 5554 03:40:49,280 --> 03:40:50,240 >>I BELIEVE EVERYTHING I JUST 5555 03:40:50,240 --> 03:40:53,080 SAID BEFORE IN THE LAST TWO 5556 03:40:53,080 --> 03:40:53,720 QUESTIONS. 5557 03:40:53,720 --> 03:41:00,680 I THINK JUST KEEPING IN MIND 5558 03:41:00,680 --> 03:41:04,840 THAT, YOU KNOW, LIKE WE JUST -- 5559 03:41:04,840 --> 03:41:09,360 THE THING IS, WE NEED TO FIND 5560 03:41:09,360 --> 03:41:11,360 WAYS TO REWARD RESEARCHERS WHO 5561 03:41:11,360 --> 03:41:13,440 TAKE THE TIME TO PROVIDE 5562 03:41:13,440 --> 03:41:16,840 COGNITIVELY ACCESSIBLE VERSIONS 5563 03:41:16,840 --> 03:41:21,800 OF THEIR FINDINGS AND IT BEGINS 5564 03:41:21,800 --> 03:41:25,080 WITH, YOU KNOW, PRESUMING 5565 03:41:25,080 --> 03:41:25,600 COMPETENCE. 5566 03:41:25,600 --> 03:41:28,600 PEOPLE ARE NOT SMART ENOUGH TO 5567 03:41:28,600 --> 03:41:31,320 USE RESEARCH FINDINGS TO IMPROVE 5568 03:41:31,320 --> 03:41:32,760 OUR LIVES AND BELIEVE WE ARE 5569 03:41:32,760 --> 03:41:37,640 CAPABLE OF UNDERSTANDING IN LIKE 5570 03:41:37,640 --> 03:41:48,160 YOUR RESEARCH AND WORK WITH US 5571 03:41:49,080 --> 03:41:51,840 TO DETERMINE WHAT IS THE MOST 5572 03:41:51,840 --> 03:41:54,800 IMPORTANT INFORMATION TO FOCUS 5573 03:41:54,800 --> 03:41:58,640 ON AT ANY GIVEN TIME AND WHEN WE 5574 03:41:58,640 --> 03:42:00,200 WORK TOGETHER AS A TEAM, YOU 5575 03:42:00,200 --> 03:42:03,480 INCREASE YOUR IMPACT BECAUSE 5576 03:42:03,480 --> 03:42:05,080 DISABLED PEOPLE ARE OFTEN MORE 5577 03:42:05,080 --> 03:42:06,360 INTERESTED IN READING 5578 03:42:06,360 --> 03:42:09,040 INFORMATION THAT IS WRITTEN FROM 5579 03:42:09,040 --> 03:42:10,840 THE POINT MUCH VIEW OF SOMEONE 5580 03:42:10,840 --> 03:42:15,280 WITH A DISABILITY, YOU KNOW. 5581 03:42:15,280 --> 03:42:17,960 THIS IS WILL BE A NEED THERE'S A 5582 03:42:17,960 --> 03:42:20,160 NEED FOR RESEARCH AND ADVOCATES 5583 03:42:20,160 --> 03:42:27,040 AND PROVIDERS TO FINDING WAYS TO 5584 03:42:27,040 --> 03:42:28,400 APPLY RESEARCH FINDINGS FOR 5585 03:42:28,400 --> 03:42:36,640 EXAMPLE, IF WE ARE TRYING TO 5586 03:42:36,640 --> 03:42:38,280 RECOMMEND STRATEGIES WHERE, YOU 5587 03:42:38,280 --> 03:42:41,360 KNOW, WHERE CAN WE GET HELP FOR 5588 03:42:41,360 --> 03:42:42,520 IT? 5589 03:42:42,520 --> 03:42:46,400 WHERE CAN WE GO FOR HELP IF IT'S 5590 03:42:46,400 --> 03:42:52,360 NEEDED AND TO GO FOR HELP. 5591 03:42:52,360 --> 03:42:57,040 WHEN RESEARCHERS TEAM UP, WITH 5592 03:42:57,040 --> 03:42:57,920 SELF-ADVOCATES WE CAN UNDERSTAND 5593 03:42:57,920 --> 03:43:00,960 HOW RECOMMENDATIONS ARE 5594 03:43:00,960 --> 03:43:02,040 IMPACTING OUR LIVES. 5595 03:43:02,040 --> 03:43:05,440 ARE THERE ANY OF UNINTENDED 5596 03:43:05,440 --> 03:43:07,000 CONSEQUENCES BOTH NEGATIVE AND 5597 03:43:07,000 --> 03:43:07,960 POSITIVE? 5598 03:43:07,960 --> 03:43:12,800 I MEAN ARE THERE ISSUES OF 5599 03:43:12,800 --> 03:43:14,000 PERSONAL RIGHTS THAT NEED TO BE 5600 03:43:14,000 --> 03:43:16,200 LOOKED AT. 5601 03:43:16,200 --> 03:43:17,880 SO JUST COPE THESE THINGS IN 5602 03:43:17,880 --> 03:43:21,440 CONSIDERATION AND THANK YOU. 5603 03:43:21,440 --> 03:43:23,160 >>Joe: AND I THINK THAT'S A 5604 03:43:23,160 --> 03:43:29,240 GOOD SEG WAY TO BARRY, I MEAN, 5605 03:43:29,240 --> 03:43:31,440 YOU KNOW, YOU ARE WORKING ON 5606 03:43:31,440 --> 03:43:33,920 THIS TRAINING COURSE FOR PEOPLE 5607 03:43:33,920 --> 03:43:37,240 TO BE ABLE TO SELF-ADVOCATE AND 5608 03:43:37,240 --> 03:43:41,440 BE PART OF THE RESEARCH PROCESS. 5609 03:43:41,440 --> 03:43:43,080 SO, WHAT DO YOU THINK OF THE 5610 03:43:43,080 --> 03:43:46,720 NEXT STEPS FOR NIH TO TAKE TO BE 5611 03:43:46,720 --> 03:43:48,040 ABLE TO LEVERAGE THAT? 5612 03:43:48,040 --> 03:43:51,240 >>THIS IS MY ONE SHOT TO SAY TO 5613 03:43:51,240 --> 03:43:51,720 NIH. 5614 03:43:51,720 --> 03:43:53,960 THIS IS GREAT. 5615 03:43:53,960 --> 03:43:57,720 MY FRIENDS AT NINDS WERE SPINAL 5616 03:43:57,720 --> 03:43:58,520 CORD RESEARCH LIES THEY KNOWS 5617 03:43:58,520 --> 03:43:59,880 WHAT IS COMING OUT OF MY MOUTH 5618 03:43:59,880 --> 03:44:01,320 RIGHT NOW. 5619 03:44:01,320 --> 03:44:03,920 I THINK IN GENERAL, WE'RE 5620 03:44:03,920 --> 03:44:04,920 STARTED TO GO GO DOWN THE RIGHT 5621 03:44:04,920 --> 03:44:06,280 PATH SO THAT'S ENCOURAGING BUT 5622 03:44:06,280 --> 03:44:08,760 IN GENERAL, WE NEED TO ENCOURAGE 5623 03:44:08,760 --> 03:44:10,240 AND NURTURE -- I CALL IT THE 5624 03:44:10,240 --> 03:44:12,920 PARTNERSHIPS. 5625 03:44:12,920 --> 03:44:14,600 SO, YES, WE HAVE TO BUILD 5626 03:44:14,600 --> 03:44:16,040 CAPACITY AT OUR END BUT PEOPLE 5627 03:44:16,040 --> 03:44:20,080 CONDUCTING THE RESEARCHERS NEED 5628 03:44:20,080 --> 03:44:21,680 TO KNOW ABOUT OUR COMMUNITY WHO 5629 03:44:21,680 --> 03:44:23,560 ARE WE ARE AND WHAT EFFECTS WHAT 5630 03:44:23,560 --> 03:44:24,520 OUR PRIORITIES ARE. 5631 03:44:24,520 --> 03:44:26,120 IT'S ASTOUNDING TO FIND OUT HOW 5632 03:44:26,120 --> 03:44:29,720 MANY RESEARCHERS THAT SPECIALIZE 5633 03:44:29,720 --> 03:44:31,120 IN SPINAL CORD RESEARCH NEVER 5634 03:44:31,120 --> 03:44:33,360 MET A PERSON WITH SPINAL CORD 5635 03:44:33,360 --> 03:44:34,680 INJURY AND IT'S FASCINATING AND 5636 03:44:34,680 --> 03:44:37,080 YOU DON'T LEARN IT OUT OF A 5637 03:44:37,080 --> 03:44:37,360 TEXTBOOK. 5638 03:44:37,360 --> 03:44:38,400 YOU NEED TO UNDERSTAND US. 5639 03:44:38,400 --> 03:44:39,720 THERE ARE WAYS THAT WE CAN BRING 5640 03:44:39,720 --> 03:44:41,000 THAT TOGETHER AND THAT COULD BE 5641 03:44:41,000 --> 03:44:43,440 THROUGH WORKSHOPS AND THROUGH 5642 03:44:43,440 --> 03:44:44,480 MEETINGS AND MORE OF THESE 5643 03:44:44,480 --> 03:44:46,200 THINGS AND MORE ENGAGEMENT THAT 5644 03:44:46,200 --> 03:44:47,240 WAY. 5645 03:44:47,240 --> 03:44:53,240 NUMBER TWO, IS THEY MAKE IT 5646 03:44:53,240 --> 03:44:54,360 MANDATORY A NIH GRANT 5647 03:44:54,360 --> 03:44:55,960 APPLICATION HAS A PERSON WITH 5648 03:44:55,960 --> 03:44:57,720 LIVED EXPERIENCE AS AS FAR AS 5649 03:44:57,720 --> 03:44:58,760 THE GRANT TEAM. 5650 03:44:58,760 --> 03:45:01,160 THE DOD DOES IT, THE PDA DOES 5651 03:45:01,160 --> 03:45:04,160 IT, AND THE NIH DOES NOT YET AND 5652 03:45:04,160 --> 03:45:05,640 WHAT THAT MEANS IS, NOT JUST TO 5653 03:45:05,640 --> 03:45:08,800 HAVE A TOKENNIST PERSON SITTING 5654 03:45:08,800 --> 03:45:10,600 THERE AND PART OF A GRANT TEAM 5655 03:45:10,600 --> 03:45:11,800 BUT SOMEONE THAT ACTUALLY IS 5656 03:45:11,800 --> 03:45:13,840 PART OF MEANINGFUL ENGAGEMENT 5657 03:45:13,840 --> 03:45:15,800 WHERE, IT COULD BE ENCOURAGED 5658 03:45:15,800 --> 03:45:17,080 THROUGH THE GRANT APPLICATION 5659 03:45:17,080 --> 03:45:22,040 THAT A PORTION OF THE FUNDS THAT 5660 03:45:22,040 --> 03:45:23,760 ARE ACTUALLY GIVEN OUT TO THE 5661 03:45:23,760 --> 03:45:25,240 PEOPLE THAT ARE AWARD WINNERS 5662 03:45:25,240 --> 03:45:29,400 AND GRANTS WOULD GO TOWARDS 5663 03:45:29,400 --> 03:45:31,120 ENGAGEMENT PLAN THAT WOULD BRING 5664 03:45:31,120 --> 03:45:32,640 IN PEOPLE WITH SPINE OR CORD 5665 03:45:32,640 --> 03:45:34,920 INJURIES FROM OUR COMMITTEE, NOT 5666 03:45:34,920 --> 03:45:36,720 JUST OUR COMMITTEE AND OTHER 5667 03:45:36,720 --> 03:45:38,880 COMMUNITIES AT THE TABLE PART OF 5668 03:45:38,880 --> 03:45:39,520 THE GRANT TEAM ADVISING ON THE 5669 03:45:39,520 --> 03:45:41,560 RESEARCH AND HELPING WITH THE IS 5670 03:45:41,560 --> 03:45:42,440 DISSEMINATION OF THE RESEARCH 5671 03:45:42,440 --> 03:45:44,640 AND IN FACT IT TURNS INTO THE 5672 03:45:44,640 --> 03:45:48,960 HEALTH WITH IMPROVEMENT AND WE 5673 03:45:48,960 --> 03:45:54,080 ALL KNOW, THERE'S A LOT OF GREAT 5674 03:45:54,080 --> 03:45:57,160 RESEARCH AND NOT ENOUGH PEOPLE 5675 03:45:57,160 --> 03:46:00,200 AND THE GREATEST PROBLEM WITH 5676 03:46:00,200 --> 03:46:03,520 THAT IS DESIGNING RESEARCH THAT 5677 03:46:03,520 --> 03:46:04,680 DEVELOPS THE PEOPLE WITH LIVED 5678 03:46:04,680 --> 03:46:05,640 EXPERIENCE FROM THE BEGINNING OF 5679 03:46:05,640 --> 03:46:09,240 THE DESIGN AND WE SHOULD BE 5680 03:46:09,240 --> 03:46:09,800 THOSE THAT HELP THEM ASK THE 5681 03:46:09,800 --> 03:46:10,400 QUESTIONS BEFORE THEY DESIGN A 5682 03:46:10,400 --> 03:46:16,160 QUESTION WITHOUT TALKING TO US. 5683 03:46:16,160 --> 03:46:20,000 >>THANK YOU, THAT WAS GREAT. 5684 03:46:20,000 --> 03:46:21,080 >>YOU ARE WELCOME. 5685 03:46:21,080 --> 03:46:27,560 I WILL SAY THAT HERE WE HAVE 5686 03:46:27,560 --> 03:46:33,800 BEGUN AT LEAST WITH OUR TO 5687 03:46:33,800 --> 03:46:34,800 INCLUDE LANGUAGE SURROUNDING 5688 03:46:34,800 --> 03:46:37,880 PEOPLE WITH LIVED EXPERIENCE AND 5689 03:46:37,880 --> 03:46:39,120 INCLUDING PEOPLE ON THE STUDY 5690 03:46:39,120 --> 03:46:42,960 TEAM AND SO IT'S SOMETHING THAT 5691 03:46:42,960 --> 03:46:50,000 IS ON OUR RADAR IN THE 5692 03:46:50,000 --> 03:47:00,400 REHABILITATION STAGE. 5693 03:47:01,000 --> 03:47:03,960 FROM THE OFFICE AND EQUITY 5694 03:47:03,960 --> 03:47:09,480 INCLUSION AND HERE AT NIH. 5695 03:47:09,480 --> 03:47:12,120 AND SHE'S NOTING THAT THEY HAVE 5696 03:47:12,120 --> 03:47:13,920 A PRINCIPLE STRATEGIST DEDICATED 5697 03:47:13,920 --> 03:47:16,760 TO ADDRESSING THE ISSUES 5698 03:47:16,760 --> 03:47:18,360 SURROUNDING ABLEISM AT NIH AND 5699 03:47:18,360 --> 03:47:20,240 DEVELOPED A FIVE-YEAR PLAN FOR 5700 03:47:20,240 --> 03:47:25,200 THIS COMMUNITY WITHIN NIH AND 5701 03:47:25,200 --> 03:47:29,600 PERHAPS BEING ACTIVE IN EMPLOYEE 5702 03:47:29,600 --> 03:47:39,080 RESEARCH GROUPS IT'S AN INTERNAL 5703 03:47:39,080 --> 03:47:43,960 NIH PROGRAM WORKING TO ADDRESS 5704 03:47:43,960 --> 03:47:48,920 THTHIS TO ADDRESS ABLEISM. 5705 03:47:48,920 --> 03:47:51,520 LET ME GO -- LET ME SEE. 5706 03:47:51,520 --> 03:47:55,960 LET ME GO TO MAX NEXT. 5707 03:47:55,960 --> 03:48:01,480 WE HAVE A FEW MINUTES LEFT. 5708 03:48:01,480 --> 03:48:03,600 DO YOU HAVE A VISION OF WHAT 5709 03:48:03,600 --> 03:48:07,160 ANCILLARY SERVICE PROVIDERS 5710 03:48:07,160 --> 03:48:09,120 COULD DO OR HOW OR WHAT HAVE YOU 5711 03:48:09,120 --> 03:48:10,440 EXPERIENCED THAT COULD BE 5712 03:48:10,440 --> 03:48:12,680 EXPANDED? 5713 03:48:12,680 --> 03:48:14,240 SO, FOR THOSE, FOR THOSE PEOPLE 5714 03:48:14,240 --> 03:48:17,320 WHO HELP YOU NAVIGATE THE 5715 03:48:17,320 --> 03:48:19,200 HEALTH-CARE SYSTEM, WHAT CAN YOU 5716 03:48:19,200 --> 03:48:22,040 PROVIDE OTHER CONCRETE EXAMPLES 5717 03:48:22,040 --> 03:48:23,160 OF WHAT COULD BE OFFERED TO HELP 5718 03:48:23,160 --> 03:48:27,400 YOU NAVIGATE THE HEALTH-CARE 5719 03:48:27,400 --> 03:48:32,080 SYSTEM? 5720 03:48:32,080 --> 03:48:32,960 PEER SUPPORT. 5721 03:48:32,960 --> 03:48:39,600 I WOULD SAY YOU WILL FIND IT AND 5722 03:48:39,600 --> 03:48:42,680 WE FEEL MORE COMFORTABLE 5723 03:48:42,680 --> 03:48:46,240 REQUEST, YOU KNOW, PEERS AND. 5724 03:48:46,240 --> 03:48:48,960 >>YOU ARE RIGHT. 5725 03:48:48,960 --> 03:48:50,240 I THINK WE'VE ADDRESSED THAT 5726 03:48:50,240 --> 03:48:50,840 QUESTION. 5727 03:48:50,840 --> 03:48:52,480 LET ME GO TO THE NEXT QUESTION. 5728 03:48:52,480 --> 03:48:54,120 AGAIN, SO I'LL START WITH YOU, 5729 03:48:54,120 --> 03:48:55,080 MAX. 5730 03:48:55,080 --> 03:48:57,640 HAVE YOU PARTICIPATED IN 5731 03:48:57,640 --> 03:48:59,160 BIOMEDICAL OR BEHAVIORAL 5732 03:48:59,160 --> 03:49:01,320 RESEARCH AND IF NOT WHAT BERRIEN 5733 03:49:01,320 --> 03:49:11,560 YEARS PREVENTED YOUR INCLUSION? 5734 03:49:11,560 --> 03:49:17,080 >>YEAH, THE WAY I WOULD ANSWER 5735 03:49:17,080 --> 03:49:22,680 THIS QUESTION IS LIKE AGAIN, YOU 5736 03:49:22,680 --> 03:49:28,040 WANT TO FOCUS ON PLAIN LANGUAGE 5737 03:49:28,040 --> 03:49:33,080 BECAUSE NO YOU KNOW, THAT'S HOW 5738 03:49:33,080 --> 03:49:37,880 WE'RE GOING TO BE INVOLVED AND 5739 03:49:37,880 --> 03:49:44,160 THE BIOMEDICAL RESEARCH IF 5740 03:49:44,160 --> 03:49:48,360 THINGS ARE WRITTEN IN A WAY THAT 5741 03:49:48,360 --> 03:49:49,200 YOU KNOW, THAT WE CAN UNDERSTAND 5742 03:49:49,200 --> 03:49:53,640 THAT WAY WE CAN GET INVOLVED 5743 03:49:53,640 --> 03:49:55,480 WITH THAT. 5744 03:49:55,480 --> 03:50:01,920 I WOULD SAY, WHEN YOU WANT US TO 5745 03:50:01,920 --> 03:50:03,320 BE INVOLVED GIVE US TIME TO 5746 03:50:03,320 --> 03:50:08,200 REVIEW INFORMATION AHEAD OF TIME 5747 03:50:08,200 --> 03:50:09,600 THAT WAY WE KNOW WHAT WE'RE 5748 03:50:09,600 --> 03:50:11,160 GETTING OURSELVES INTO AND MAKE 5749 03:50:11,160 --> 03:50:20,960 SURE THAT INFORMATION IS ALSO IN 5750 03:50:20,960 --> 03:50:22,640 PLAN LANES AND THAT'S IMPORTANT 5751 03:50:22,640 --> 03:50:25,880 TO KEEP IN MIND AND LIKE HAVE 5752 03:50:25,880 --> 03:50:30,920 LIKE SUMMARIES OF WHAT MAY HAVE 5753 03:50:30,920 --> 03:50:35,280 HAPPENED AT ANY KIND OF MEETINGS 5754 03:50:35,280 --> 03:50:41,800 OR SOMETHING OR LIKE YOU KNOW, 5755 03:50:41,800 --> 03:50:43,360 MEETINGS OR GATHERINGS THAT HAVE 5756 03:50:43,360 --> 03:50:45,480 TO DO WITH BIOMEDICAL TRAINING 5757 03:50:45,480 --> 03:50:47,600 AND I WOULD SAY TOO, IF YOU WANT 5758 03:50:47,600 --> 03:50:49,160 PEOPLE WITH DISABILITIES TO GET 5759 03:50:49,160 --> 03:50:51,800 INVOLVED, YOU KNOW, PAY US. 5760 03:50:51,800 --> 03:50:55,840 PAY US TO DO THIS WORK. 5761 03:50:55,840 --> 03:50:57,720 WE ARE THE EXPERTS. 5762 03:50:57,720 --> 03:51:01,280 AS PEOPLE WITH LIVED EXPERIENCE. 5763 03:51:01,280 --> 03:51:02,680 WE'RE GOING TO KNOW WHAT WE NEED 5764 03:51:02,680 --> 03:51:07,400 AND WANT OUT OF THE HEALTH-CARE 5765 03:51:07,400 --> 03:51:10,160 SYSTEM THROUGH OIR EXPERIENCE 5766 03:51:10,160 --> 03:51:13,840 GROWING UP AS PEOPLE WITH 5767 03:51:13,840 --> 03:51:19,440 DISABILITIES. 5768 03:51:19,440 --> 03:51:20,960 >>Joe: JENNIFER, I'LL TURN TO 5769 03:51:20,960 --> 03:51:21,120 YOU. 5770 03:51:21,120 --> 03:51:25,760 HAVE YOU PARTICIPATED AND WHY OR 5771 03:51:25,760 --> 03:51:26,760 WHY NOT? 5772 03:51:26,760 --> 03:51:31,560 >>I HAVE IN A FEW STUDIES IN 5773 03:51:31,560 --> 03:51:33,800 BEHAVIORAL STUDIES AND WHAT MADE 5774 03:51:33,800 --> 03:51:37,120 IT EASIER FOR ME BECAUSE WAS 5775 03:51:37,120 --> 03:51:39,760 EITHER VIRTUAL SUCH AS THE ZOOM 5776 03:51:39,760 --> 03:51:42,320 MEETING HERE OR TRANSPORTATION 5777 03:51:42,320 --> 03:51:45,120 BECAUSE A LOT OF TIMES IT'S VERY 5778 03:51:45,120 --> 03:51:47,760 DIFFICULT FOR PEOPLE WITH 5779 03:51:47,760 --> 03:51:51,680 MOBILITY SITUATIONS TO ATTAIN 5780 03:51:51,680 --> 03:51:52,600 TRANSPORTATION THAT ISN'T GOING 5781 03:51:52,600 --> 03:51:53,800 TO BREAK THE BANK. 5782 03:51:53,800 --> 03:51:56,720 I MEAN, I CAN'T PAY $90 A RIDE 5783 03:51:56,720 --> 03:51:58,640 I'M SORRY, IT'S NOT FEASIBLE. 5784 03:51:58,640 --> 03:52:03,080 AND A LOT OF US, WE DON'T DRIVE. 5785 03:52:03,080 --> 03:52:06,560 I MEAN, I DON'T DRIVE. 5786 03:52:06,560 --> 03:52:10,240 THOSE ARE THE BARRIERS THAT I 5787 03:52:10,240 --> 03:52:13,840 FACE, ESPECIALLY WITH 5788 03:52:13,840 --> 03:52:15,520 TRANSPORTATION OR THE BUILDINGS 5789 03:52:15,520 --> 03:52:18,600 REALLY ACCESSIBLE? 5790 03:52:18,600 --> 03:52:19,960 >>Joe: I WILL SAY, AS SOMEONE 5791 03:52:19,960 --> 03:52:24,680 WHO MANAGED GRANTS, I DO SEE 5792 03:52:24,680 --> 03:52:26,320 MORE REQUESTS COMING IN ASKING 5793 03:52:26,320 --> 03:52:30,000 FOR REIMBURSEMENT FOR TRAVEL 5794 03:52:30,000 --> 03:52:30,920 EXPENSES. 5795 03:52:30,920 --> 03:52:35,200 AND I'M JUST CURIOUS, WHAT WAS 5796 03:52:35,200 --> 03:52:43,560 YOUR PREFERRED BE. 5797 03:52:43,560 --> 03:52:46,880 LYFT OR UBER OR SOMETHING MORE 5798 03:52:46,880 --> 03:52:47,280 FORMALIZED? 5799 03:52:47,280 --> 03:52:50,720 >>I THINK THAT A LOT OF 5800 03:52:50,720 --> 03:52:55,760 PEOPLE -- LIKE IN OUR AREA, 5801 03:52:55,760 --> 03:53:00,880 FINDING AN UBER DRIVER THAT IS 5802 03:53:00,880 --> 03:53:01,600 ACCESSIBLE, ESPECIALLY WHEN YOU 5803 03:53:01,600 --> 03:53:05,560 HAVE A POWER CHAIR, IS 5804 03:53:05,560 --> 03:53:06,040 RIDICULOUSLY DIFFICULT. 5805 03:53:06,040 --> 03:53:09,480 I LIVE IN THE MIDWEST IN THE 5806 03:53:09,480 --> 03:53:14,440 KANSAS CITY AREA AND IT IS 5807 03:53:14,440 --> 03:53:15,720 RIDICULOUSLY DIFFICULT TO FIND 5808 03:53:15,720 --> 03:53:19,520 AN UBER DRIVER THAT'S NOT 5809 03:53:19,520 --> 03:53:21,000 WILLING TO CHARGE AN ARM AND A 5810 03:53:21,000 --> 03:53:23,040 LEG BECAUSE YOU HAVE A POWER, 5811 03:53:23,040 --> 03:53:25,280 WHAT THEY CALL A POWER OPERATED 5812 03:53:25,280 --> 03:53:25,560 VEHICLE. 5813 03:53:25,560 --> 03:53:30,440 YOU KNOW, SO REIMBURSEMENT OF 5814 03:53:30,440 --> 03:53:33,280 TRAVEL EXPENSES IS GREAT. 5815 03:53:33,280 --> 03:53:34,240 BEING COMPENSATED FOR THINGS 5816 03:53:34,240 --> 03:53:39,240 THAT YOU K YOU KNOW AND YOU LIVE 5817 03:53:39,240 --> 03:53:40,880 THROUGH EVERYDAY THAT'S 5818 03:53:40,880 --> 03:53:43,960 FANTASTIC. 5819 03:53:43,960 --> 03:53:46,520 ALSO, ACKNOWLEDGMENT OF THE FACT 5820 03:53:46,520 --> 03:53:48,160 THAT WE HAVE TO DO THINGS MAY 5821 03:53:48,160 --> 03:53:57,480 HAVE TO DO THINGS IN NOT THE 5822 03:53:57,480 --> 03:53:57,800 AVERAGE WAY. 5823 03:53:57,800 --> 03:54:03,800 MY SON AND I HAVE A SAYING, A 5824 03:54:03,800 --> 03:54:04,600 ADAPT AND ROLL. 5825 03:54:04,600 --> 03:54:06,680 WE ADAPT AND WE ROLL. 5826 03:54:06,680 --> 03:54:08,160 NOT EVERYONE IS GOING TO DO 5827 03:54:08,160 --> 03:54:12,760 THINGS THE SAME WAY. 5828 03:54:12,760 --> 03:54:17,560 >>Joe: RIGHT. 5829 03:54:17,560 --> 03:54:18,640 BARRY, ARE YOU PARTICIPATED IN 5830 03:54:18,640 --> 03:54:19,280 RESEARCH? 5831 03:54:19,280 --> 03:54:22,760 WHY AND WHY NOT? 5832 03:54:22,760 --> 03:54:29,120 >>YES, I HAVE. 5833 03:54:29,120 --> 03:54:29,920 NOT A LOT. 5834 03:54:29,920 --> 03:54:32,480 I'VE COORDINATED MORE BUT I GO 5835 03:54:32,480 --> 03:54:35,160 BACK TO WHAT MAX SAID AND 5836 03:54:35,160 --> 03:54:36,600 JENNIFER SAID TOO IT'S THAT, 5837 03:54:36,600 --> 03:54:41,920 THERE HAS TO BE APPRECIATION 5838 03:54:41,920 --> 03:54:46,840 FIRST OF WHAT DAILY SCHEDULE IS 5839 03:54:46,840 --> 03:54:49,080 LIKE AND BOOKING 7:00 IN THE 5840 03:54:49,080 --> 03:54:52,480 MORNING APPOINTMENTS IS 5841 03:54:52,480 --> 03:54:58,320 IMPOSSIBLE FOR BACK TO WHAT MAX 5842 03:54:58,320 --> 03:54:59,680 SAID, I KEEP GOING BACK TO WHAT 5843 03:54:59,680 --> 03:55:00,480 HE SAYS TOO. 5844 03:55:00,480 --> 03:55:02,280 IT'S HAVING A PEER NAVIGATE OR, 5845 03:55:02,280 --> 03:55:07,960 PEER SUPPORT AND COMPENSATION 5846 03:55:07,960 --> 03:55:10,280 FOR OUR TIMES I SEE BUDGETS FOR 5847 03:55:10,280 --> 03:55:12,600 RESEARCH AND CONSULTANTS GETTING 5848 03:55:12,600 --> 03:55:14,000 PAID HERE CONSULTINGS GETTING 5849 03:55:14,000 --> 03:55:16,040 PAID THERE AND LAB TECHNICIANS 5850 03:55:16,040 --> 03:55:17,640 GETTING THIS IN AND THERE'S THIS 5851 03:55:17,640 --> 03:55:19,840 SORT OF VOLUNTEER HONORARY AND 5852 03:55:19,840 --> 03:55:24,080 ADVICE AND WHO IS THAT AND THEN 5853 03:55:24,080 --> 03:55:25,480 WE HAVE A PROBLEM TOO IF YOU ARE 5854 03:55:25,480 --> 03:55:27,480 ON MEDICATE AND YOU WANT TO BE A 5855 03:55:27,480 --> 03:55:32,040 ACTIVE PARTICIPANTS AND THERE'S 5856 03:55:32,040 --> 03:55:34,800 PEOPLE WORKING BEHIND THE SCENES 5857 03:55:34,800 --> 03:55:37,640 AND GETTING GIFT CARDS AND THIS 5858 03:55:37,640 --> 03:55:40,240 IS SOMETHING THAT HAS TO AND WE 5859 03:55:40,240 --> 03:55:48,080 SHOULD BE ABLE TO FELT AND NOT T 5860 03:55:48,080 --> 03:55:53,840 JEOPARDIZE OUR DISABILITY 5861 03:55:53,840 --> 03:56:04,000 FUNDING. 5862 03:56:06,440 --> 03:56:07,440 JENNIFER, DO YOU HAVE ANY 5863 03:56:07,440 --> 03:56:09,280 CLOSING REMARKS YOU'D LIKE TO 5864 03:56:09,280 --> 03:56:09,880 MAKE? 5865 03:56:09,880 --> 03:56:11,200 >>JUST REMEMBER ANYONE CAN 5866 03:56:11,200 --> 03:56:13,280 BECOME DISABLED AT ANY POINT IN 5867 03:56:13,280 --> 03:56:18,560 TIME SO IT'S BETTER TO LEARN 5868 03:56:18,560 --> 03:56:21,840 FROM A PERSON WHO IS LIVING IN A 5869 03:56:21,840 --> 03:56:22,960 SITUATION THAN TO ASSUME YOU 5870 03:56:22,960 --> 03:56:29,840 KNOW EVERYTHING ABOUT THE 5871 03:56:29,840 --> 03:56:30,280 SITUATION. 5872 03:56:30,280 --> 03:56:37,880 EXCUSE ME JUST ONE SECOND. 5873 03:56:37,880 --> 03:56:40,760 AND I FIRMLY BELIEVE THAT IF YOU 5874 03:56:40,760 --> 03:56:45,120 TAKE THE TIME TO LISTEN, AND TO 5875 03:56:45,120 --> 03:56:48,560 OFFER TRAINING WITHOUT BEING 5876 03:56:48,560 --> 03:56:51,520 PATRONIZING, THAT THAT WOULD BE 5877 03:56:51,520 --> 03:56:53,800 FANTASTIC. 5878 03:56:53,800 --> 03:57:00,760 BECAUSE IF YOU PAT TORONTO EYESM 5879 03:57:00,760 --> 03:57:03,760 GOING TO DO MY BEST TO PROVE YOU 5880 03:57:03,760 --> 03:57:03,960 WRONG. 5881 03:57:03,960 --> 03:57:06,520 NOT EVERYONE WORKS THAT WAY. 5882 03:57:06,520 --> 03:57:08,840 >>Joe: MAX, ANY PARTING WORDS 5883 03:57:08,840 --> 03:57:11,840 AS WE CLOSE DAY ONE? 5884 03:57:11,840 --> 03:57:15,320 >>UM -- YOU KNOW, I JUST WANT 5885 03:57:15,320 --> 03:57:18,760 TO SAY LIKE YOU KNOW, JUST TAKE 5886 03:57:18,760 --> 03:57:19,960 UNTIL CONSIDERATION WHAT I 5887 03:57:19,960 --> 03:57:21,880 SHARED, WHAT YOU KNOW THE OTHER 5888 03:57:21,880 --> 03:57:25,960 PANELISTS, JENNIFER AND EVEN 5889 03:57:25,960 --> 03:57:27,400 BARRY SHARED AND THE ONLY THING 5890 03:57:27,400 --> 03:57:34,520 I CAN SAY IS, LIKE, COVID WAS, 5891 03:57:34,520 --> 03:57:36,440 IT WAS REALLY TOUGH. 5892 03:57:36,440 --> 03:57:37,680 I WILL SAY THAT EVERYTHING THAT 5893 03:57:37,680 --> 03:57:38,760 THE HEALTH DEPARTMENTS KNEW 5894 03:57:38,760 --> 03:57:42,680 ABOUT INCLUSION WAS FORGOTTEN 5895 03:57:42,680 --> 03:57:43,760 DURING THE PANDEMIC. 5896 03:57:43,760 --> 03:57:54,320 WE NEED TO LIKE GO BACK TO BEING 5897 03:57:54,760 --> 03:57:56,480 INCLUDED AND PLANNING FOR, YOU 5898 03:57:56,480 --> 03:58:04,200 KNOW, IMPLEMENTATION, YOU KNOW, 5899 03:58:04,200 --> 03:58:06,840 GETTING THE HEALTH-CARE SYSTEM 5900 03:58:06,840 --> 03:58:09,240 AS A WHOLE TO, YOU KNOW, MAKE 5901 03:58:09,240 --> 03:58:12,280 SURE THAT WE DON'T SLIP THROUGH 5902 03:58:12,280 --> 03:58:12,720 THE CRACKS. 5903 03:58:12,720 --> 03:58:14,880 NOTHING ABOUT US WITHOUT US, 5904 03:58:14,880 --> 03:58:17,120 TAKE US SERIOUSLY, YOU KNOW, 5905 03:58:17,120 --> 03:58:19,320 WHEN WE'RE AT THE TABLE. 5906 03:58:19,320 --> 03:58:22,560 WHEN YOU INVOLVE US. 5907 03:58:22,560 --> 03:58:27,920 AND JUST WORK WITH US AND YOU 5908 03:58:27,920 --> 03:58:32,240 WILL GET A LOT OF BENEFICIAL 5909 03:58:32,240 --> 03:58:33,400 FACTS THROUGH EXPERIENCE OUT OF 5910 03:58:33,400 --> 03:58:37,840 HOW WE LIVE OUR LIVES THROUGH 5911 03:58:37,840 --> 03:58:41,040 OUR, YOU KNOW, OUR KNOWLEDGEEL 5912 03:58:41,040 --> 03:58:45,360 OF GROWING UP AS PEOPLE WITH 5913 03:58:45,360 --> 03:58:48,480 DISABILITIES. 5914 03:58:48,480 --> 03:58:48,880 >>Joe: THANK YOU. 5915 03:58:48,880 --> 03:58:50,840 AND BARRY, ANY FINAL? 5916 03:58:50,840 --> 03:58:53,640 >>WELL 100% I AGREE WITH MAX 5917 03:58:53,640 --> 03:58:54,280 JUST SAID. 5918 03:58:54,280 --> 03:58:55,600 NOTHING ABOUT US WITHOUT US. 5919 03:58:55,600 --> 03:59:00,040 WE ARE THE EXPERTS. 5920 03:59:00,040 --> 03:59:02,640 IT'S -- I DON'T UNDERSTAND HOW 5921 03:59:02,640 --> 03:59:04,680 REALLY SMART PEOPLE CHOSE TO 5922 03:59:04,680 --> 03:59:06,480 IGNORE THE GREATEST RESOURCES 5923 03:59:06,480 --> 03:59:08,080 SITTING IN FRONT OF IT THEM ALL 5924 03:59:08,080 --> 03:59:10,160 THE TIME AND SYSTEMATICALLY FOR 5925 03:59:10,160 --> 03:59:11,800 DECADES AND THAT IF THEY WANT TO 5926 03:59:11,800 --> 03:59:14,320 IMPROVE THE SYSTEM AND IF THEY 5927 03:59:14,320 --> 03:59:15,840 REALLY WANT TO IMPROVE THE 5928 03:59:15,840 --> 03:59:17,000 SYSTEM, THEY SHOULD BE IN 5929 03:59:17,000 --> 03:59:17,680 PARTNERSHIP WITH THOSE PEOPLE 5930 03:59:17,680 --> 03:59:20,600 WHO HAVE THE EXPERTISE MORE THAN 5931 03:59:20,600 --> 03:59:21,880 ANYBODY ELSE, THE EXPERIENCE 5932 03:59:21,880 --> 03:59:24,720 MORE THAN ANYBODY ELSE, TO 5933 03:59:24,720 --> 03:59:25,840 REALLY SHARE THAT TOGETHER AND 5934 03:59:25,840 --> 03:59:28,120 WE OWE IT TO THEM TO REFINE OUR 5935 03:59:28,120 --> 03:59:29,600 MESSAGES AND MAKE SURE THAT WE 5936 03:59:29,600 --> 03:59:31,720 CAN SHARE IT WITHOUT ANGER AND 5937 03:59:31,720 --> 03:59:33,320 EMOTIONS AND REALLY GET IT DONE 5938 03:59:33,320 --> 03:59:35,560 AND I THINK A TRUE PARTNERSHIP 5939 03:59:35,560 --> 03:59:37,720 BETWEEN CAREGIVERS, MEDICAL 5940 03:59:37,720 --> 03:59:38,480 PRACTITIONERS AND RESEARCHERS 5941 03:59:38,480 --> 03:59:40,680 AND THE COMMUNITIES THAT THEY'RE 5942 03:59:40,680 --> 03:59:41,960 SURVEYING IS THE WAY WE CAN 5943 03:59:41,960 --> 03:59:47,400 DRIVE THINGS FORWARD IN A 5944 03:59:47,400 --> 03:59:50,960 PRODUCTIVE WAY. 5945 03:59:50,960 --> 03:59:54,080 >>Joe: THANK YOU. 5946 03:59:54,080 --> 03:59:59,240 AND BARRY YOU HAVE A QR CODE. 5947 03:59:59,240 --> 04:00:03,400 >>I SENT IT IN BUT IT IS FINE 5948 04:00:03,400 --> 04:00:04,920 IF THE PARTICIPANTS WANT IT THEY 5949 04:00:04,920 --> 04:00:07,840 CAN REQUEST IT, I GUESS. 5950 04:00:07,840 --> 04:00:11,400 IF THEY WANT TO LEARN ABOUT WHAT 5951 04:00:11,400 --> 04:00:11,920 WE'RE DOING. 5952 04:00:11,920 --> 04:00:13,840 >>Joe: I'LL GET THAT. 5953 04:00:13,840 --> 04:00:17,080 I THINK WE'RE AT 4:00 RIGHT NOW. 5954 04:00:17,080 --> 04:00:27,560 I THINK ON THE AGENDA -- I THINK 5955 04:00:27,560 --> 04:00:29,880 IS ANYONE ELSE COMING ON TO 5956 04:00:29,880 --> 04:00:30,080 WRAP-UP. 5957 04:00:30,080 --> 04:00:31,760 THERE IT IS, PERFECT. 5958 04:00:31,760 --> 04:00:37,880 >>THANK YOU. 5959 04:00:37,880 --> 04:00:41,840 >>YOU WANT TO QUEEN ELIZABETH 5960 04:00:41,840 --> 04:00:48,800 EXPLAIN THE QRCODES. 5961 04:00:48,800 --> 04:00:51,640 >>IT'S THIS TOPIC TODAY AND HOW 5962 04:00:51,640 --> 04:00:52,480 PEOPLE, OUR COMMUNITIES CAN BE 5963 04:00:52,480 --> 04:00:53,960 BETTER PARTNERS AND RESEARCH AND 5964 04:00:53,960 --> 04:00:56,720 BUILDING A CAPACITY SO WE CAN 5965 04:00:56,720 --> 04:00:58,400 WORK TOGETHER ON SOLVING PEOPLE 5966 04:00:58,400 --> 04:01:00,040 AND BEING INVOLVED IN ENGAGEMENT 5967 04:01:00,040 --> 04:01:01,640 AND WE HAVE AN ORGANIZATION THAT 5968 04:01:01,640 --> 04:01:04,960 IS BROUGHT TOGETHER ALL THESE 5969 04:01:04,960 --> 04:01:05,800 ORGANIZATIONS THROUGHOUT NORTH 5970 04:01:05,800 --> 04:01:07,560 AMERICAN AND CONSORTIUM AND 5971 04:01:07,560 --> 04:01:09,000 TOGETHER WE BUILT THIS PROGRAM 5972 04:01:09,000 --> 04:01:12,000 CALLED THE SCI RESEARCH ADVOCACY 5973 04:01:12,000 --> 04:01:13,080 SOURCE SO ANYBODY THAT HAS ANY 5974 04:01:13,080 --> 04:01:14,720 INTEREST THEY WANT TO TAKE A 5975 04:01:14,720 --> 04:01:15,520 LOOK AT IT. 5976 04:01:15,520 --> 04:01:16,840 EVEN IF IT'S NOT SPECIFIC TO 5977 04:01:16,840 --> 04:01:17,960 SPINAL CORD INJURIES FOR 5978 04:01:17,960 --> 04:01:19,000 THEMSELVES, THEY MIGHT WANT TO 5979 04:01:19,000 --> 04:01:22,600 SEE HOW THEY PUT IT TOGETHER AND 5980 04:01:22,600 --> 04:01:27,600 MAY WANT TAKE LEARNING BACK INTO 5981 04:01:27,600 --> 04:01:27,920 ANOTHER AREA. 5982 04:01:27,920 --> 04:01:28,760 >>RIGHT. 5983 04:01:28,760 --> 04:01:35,320 I'M GOING TO HAND IT OFF TO MY 5984 04:01:35,320 --> 04:01:35,640 COLLEAGUE. 5985 04:01:35,640 --> 04:01:37,040 >>DID YOU TO ALL THE SPEAKERS. 5986 04:01:37,040 --> 04:01:38,520 >>THANK YOU. 5987 04:01:38,520 --> 04:01:43,040 >>BARRIE, MAX AND JENNIFER. 5988 04:01:43,040 --> 04:01:46,080 >>ALL RIGHT. 5989 04:01:46,080 --> 04:01:47,200 >>THANK YOU FOR HAVING US. 5990 04:01:47,200 --> 04:01:49,840 >>THANK YOU. 5991 04:01:49,840 --> 04:01:53,880 >>YOU ARE VERY WELCOME. 5992 04:01:53,880 --> 04:01:56,040 >>ALL RIGHT. 5993 04:01:56,040 --> 04:01:57,680 WELL, GOOD AFTERNOON, EVERYONE, 5994 04:01:57,680 --> 04:02:03,360 I WANT TO REASSURE YOU THAT I A? 5995 04:02:03,360 --> 04:02:05,880 >>YES. 5996 04:02:05,880 --> 04:02:07,080 >>AWESOME. 5997 04:02:07,080 --> 04:02:09,200 I WANT TO REASSURE YOU THAT I AM 5998 04:02:09,200 --> 04:02:11,320 HERE JUST TO SAY A FEW WORDS. 5999 04:02:11,320 --> 04:02:13,000 IT'S BEEN A RICH DAY AND I'M 6000 04:02:13,000 --> 04:02:15,200 SURE THAT WE ARE ALL EAGER TO 6001 04:02:15,200 --> 04:02:17,200 SIT WITH OUR THOUGHTS AND GET 6002 04:02:17,200 --> 04:02:18,360 READY FOR TOMORROW. 6003 04:02:18,360 --> 04:02:20,000 I'M ROSLYN KING FROM THE OFFICE 6004 04:02:20,000 --> 04:02:21,720 OF THE BEHAVIORAL AND SOCIAL 6005 04:02:21,720 --> 04:02:23,840 SCIENCES RESEARCH AT THE NIH. 6006 04:02:23,840 --> 04:02:26,640 I'M A WHITE WOMAN WITH DARK, 6007 04:02:26,640 --> 04:02:28,280 BROWN WAVY HAIR THAT GOES PAST 6008 04:02:28,280 --> 04:02:29,480 MY SHOULDERS AND I'M WEARING A 6009 04:02:29,480 --> 04:02:33,680 LIGHT GRAY CARN A BEG BEGAN OVEA 6010 04:02:33,680 --> 04:02:34,400 COLORED SHIRT. 6011 04:02:34,400 --> 04:02:37,280 I HOPE EVERYONE ENJOYED THE 6012 04:02:37,280 --> 04:02:38,480 IMPRESSIVE MIX OF DATA ANALYSIS 6013 04:02:38,480 --> 04:02:40,000 AND FRAMEWORKS AND PERSONAL 6014 04:02:40,000 --> 04:02:41,680 INSIGHTS THAT OUR SPEAKERS 6015 04:02:41,680 --> 04:02:42,880 SHARED WITH US TODAY. 6016 04:02:42,880 --> 04:02:45,120 MANY PARTICIPANTS HAVE ALSO MADE 6017 04:02:45,120 --> 04:02:46,320 COMMENTS ABOUT THE NEED TO 6018 04:02:46,320 --> 04:02:47,760 INCREASE REPRESENTATION OF 6019 04:02:47,760 --> 04:02:49,760 PERSONS WITH DISABILITIES AND 6020 04:02:49,760 --> 04:02:51,920 THE SCIENTIFIC AND BIOMEDICAL 6021 04:02:51,920 --> 04:02:52,960 WORKFORCE AND WE'LL DIG INTO 6022 04:02:52,960 --> 04:02:54,880 THAT TOPIC IN TOMORROW'S SESSION 6023 04:02:54,880 --> 04:02:55,480 AMONG OTHERS. 6024 04:02:55,480 --> 04:02:57,520 FOR MYSELF, I HAVE FOUND THE 6025 04:02:57,520 --> 04:02:59,200 ATTENTION TO SOCIAL HISTORY, 6026 04:02:59,200 --> 04:03:04,960 PUBLIC POLICY, AND INTER 6027 04:03:04,960 --> 04:03:05,560 INTERSECTIONALITY ENLIGHTENING 6028 04:03:05,560 --> 04:03:06,920 TO THANK YOU TO OUR WEBINAR 6029 04:03:06,920 --> 04:03:07,280 PARTICIPANTS. 6030 04:03:07,280 --> 04:03:09,800 WE APPRECIATE YOUR ATTENTION AND 6031 04:03:09,800 --> 04:03:10,160 QUESTIONS. 6032 04:03:10,160 --> 04:03:12,080 I WANT TO REMIND EVERYONE THAT 6033 04:03:12,080 --> 04:03:13,880 WE'LL START AT 10:30 A.M. 6034 04:03:13,880 --> 04:03:15,640 EASTERN TIME ZONE TOMORROW 6035 04:03:15,640 --> 04:03:17,000 MORNING AND PLEASE REMEMBER TO 6036 04:03:17,000 --> 04:03:19,280 CHECK YOUR ZOOM SETTINGS WHEN 6037 04:03:19,280 --> 04:03:20,920 YOU HAVE LOGGED INTO MAKE SURE 6038 04:03:20,920 --> 04:03:22,520 YOU HAVE SIDE BY SIDE SPEAKER 6039 04:03:22,520 --> 04:03:25,040 VIEW IN ORDER TO SEE THE ASL 6040 04:03:25,040 --> 04:03:26,160 INTERPRETER AND PLEASE CONTINUE 6041 04:03:26,160 --> 04:03:28,160 TO POST YOUR QUESTIONS AND 6042 04:03:28,160 --> 04:03:30,400 TECHNICAL DIFFICULTIES IN THE 6043 04:03:30,400 --> 04:03:31,480 Q&A AND WE WILL RESPOND TO THEM 6044 04:03:31,480 --> 04:03:34,280 AS QUICKLY AS WE ARE ABLE. 6045 04:03:34,280 --> 04:03:35,360 SO THANK YOU ALL AGAIN VERY MUCH 6046 04:03:35,360 --> 04:03:45,880 AND HAVE A WONDERFUL EVENING.