1 00:00:00,863 --> 00:00:04,146 You’ll see in the corner the record button 2 00:00:04,146 --> 00:00:06,143 So you should see that it’s recording now, 3 00:00:06,143 --> 00:00:07,533 And I’m going to mute myself 4 00:00:07,593 --> 00:00:09,444 And you’ll go ahead and do your intro. 5 00:00:09,444 --> 00:00:11,046 Thank you Marcie. 6 00:00:14,230 --> 00:00:16,286 Hi there, I’m Marcie Roth 7 00:00:16,290 --> 00:00:22,143 And I have been working in disability rights 8 00:00:22,143 --> 00:00:26,224 For my whole adult life, 9 00:00:26,224 --> 00:00:31,565 And actually, since I was a freshman in high school. 10 00:00:31,565 --> 00:00:42,536 I am currently the executive director and CEO of the World Institute on Disability 11 00:00:42,536 --> 00:00:53,208 And I have been working over the years in services 12 00:00:53,208 --> 00:00:59,500 for people living in residential programs early 13 00:00:59,500 --> 00:01:05,460 in my career with people in, 14 00:01:05,460 --> 00:01:09,100 children in school settings, 15 00:01:09,100 --> 00:01:15,002 people in vocational rehabilitation, 16 00:01:15,002 --> 00:01:23,411 and then people in community living environments, 17 00:01:23,411 --> 00:01:30,917 that along the way, I became very involved in disability rights 18 00:01:30,917 --> 00:01:41,317 and very involved in the early days of advocacy 19 00:01:41,317 --> 00:01:44,957 before the ADA was introduced. 20 00:01:44,957 --> 00:01:54,850 And then I worked for disability advocacy organizations almost ever since. 21 00:01:54,860 --> 00:01:58,412 In addition to my own disability, 22 00:01:58,412 --> 00:02:02,043 I’m also the parent of two 23 00:02:02,043 --> 00:02:04,868 now adults with disabilities. 24 00:02:04,868 --> 00:02:08,559 My husband also has a disability, 25 00:02:08,559 --> 00:02:17,443 and much of my family also happen to be people with disabilities 26 00:02:17,443 --> 00:02:23,748 so disability rights is just a part of 27 00:02:23,748 --> 00:02:27,376 everything I am and most everything I do. 28 00:02:27,376 --> 00:02:38,803 I did spend from 2001 and onward 29 00:02:38,803 --> 00:02:44,427 focusing very much on what happens for people with disabilities 30 00:02:44,434 --> 00:02:47,084 before, during, and after disasters. 31 00:02:47,084 --> 00:02:54,235 And that’s been a real particular laser focus of mine ever since, 32 00:02:54,237 --> 00:02:57,499 and in fact, I’ve had the opportunity 33 00:02:57,499 --> 00:03:01,932 as an appointee in the Obama administration 34 00:03:01,932 --> 00:03:08,229 to spend just about 8 years at FEMA, 35 00:03:08,229 --> 00:03:14,501 establishing FEMA’s Office of Disability Integration Coordination, 36 00:03:14,501 --> 00:03:23,258 and building a cadre of disability experts 37 00:03:23,258 --> 00:03:27,478 of the same pond, supporting governors 38 00:03:27,478 --> 00:03:34,836 and emergency managers and most particularly 39 00:03:34,836 --> 00:03:38,398 engaging people with disabilities and disability organizations 40 00:03:38,398 --> 00:03:42,170 in emergency preparedness 41 00:03:42,170 --> 00:03:46,638 and throughout disaster response recovery and mitigation. 42 00:03:46,638 --> 00:03:54,205 So one last piece since I’ve been with 43 00:03:54,205 --> 00:03:59,132 the World Institute on Disability since last September, 44 00:03:59,132 --> 00:04:09,362 my ongoing focus on global disability rights has really been 45 00:04:09,431 --> 00:04:16,305 something that I’ve had much more opportunity to e actively involved in 46 00:04:16,305 --> 00:04:26,005 and I have spent the time since joining 47 00:04:26,005 --> 00:04:31,601 WID building a strategic planning process 48 00:04:31,601 --> 00:04:42,844 and supporting the organizations to establish new priorities, 49 00:04:42,844 --> 00:04:47,130 taking a look at the organization’s mission 50 00:04:47,130 --> 00:04:53,662 and very recently establishing four particular areas of focus 51 00:04:53,662 --> 00:04:56,842 for the organization as we move forward. 52 00:04:59,472 --> 00:05:01,972 Thank you Marcie. Excellent, okay 53 00:05:01,972 --> 00:05:06,528 I apologize that my neighbor is chipping a lot of brush today, 54 00:05:06,528 --> 00:05:09,185 so it’s making extra sound whenever I unmute 55 00:05:09,185 --> 00:05:12,656 but don’t worry, it won’t interfere with your recording. 56 00:05:12,656 --> 00:05:15,956 Okay, so the first question is about the past. 57 00:05:15,956 --> 00:05:18,926 So tell of your first memory realizing that there were 58 00:05:18,942 --> 00:05:23,077 accessibility issues, discrimination, or lack of inclusion. 59 00:05:23,077 --> 00:05:25,669 What is your personal story or connection 60 00:05:25,669 --> 00:05:28,828 to the American’s with Disabilities Act? What do you remember 61 00:05:28,828 --> 00:05:31,430 about the day that it was signed, if applicable? 62 00:05:31,430 --> 00:05:34,982 And what was the impact on you and on others? 63 00:05:34,982 --> 00:05:38,632 Remember to tap something so that the camera shifts to you 64 00:05:38,632 --> 00:05:39,917 before you start. 65 00:05:44,654 --> 00:05:55,442 I first became aware of disability at a very young age. 66 00:05:55,442 --> 00:06:02,133 I had a best friend in first grade, his name was Gregory, 67 00:06:02,133 --> 00:06:09,688 and he and I were just wonderful friends. 68 00:06:09,688 --> 00:06:12,404 We spent a lot of time together, 69 00:06:12,404 --> 00:06:16,556 and then all of the sudden one day, Gregory was gone, 70 00:06:16,556 --> 00:06:24,162 and I didn’t know what happened to him or where he went 71 00:06:24,162 --> 00:06:26,957 and it wasn’t until many years later 72 00:06:26,957 --> 00:06:32,587 that I found out that Gregory had Down Syndrome, 73 00:06:32,587 --> 00:06:36,990 and he had been removed from my Kindergarten class, 74 00:06:36,990 --> 00:06:41,189 and first grade I think it was at that point, 75 00:06:41,189 --> 00:06:46,850 and apparently he had been sent to some other school somewhere. 76 00:06:46,850 --> 00:06:58,048 And the loss of his friendship was pretty surprising 77 00:06:58,048 --> 00:07:03,935 and I didn’t understand, you know, where he went. 78 00:07:03,935 --> 00:07:09,239 Looking back on it it’s kind of peculiar that we didn’t get to still be friends 79 00:07:09,239 --> 00:07:14,809 ‘cause he didn’t move away, he just stopped going to my school. 80 00:07:15,891 --> 00:07:18,691 But, I... 81 00:07:20,723 --> 00:07:31,654 I remember just being confused and then over the next number of years, 82 00:07:31,654 --> 00:07:40,148 I lived in a town that was also the home of Save the Children, 83 00:07:40,148 --> 00:07:49,678 and I was always very interested in the work that Save the Children was doing, 84 00:07:49,678 --> 00:07:56,968 and I am embarrassed to admit that my earliest involvement 85 00:07:56,968 --> 00:08:06,482 in humanitarian work was from a, you know, very charity-model approach, 86 00:08:06,482 --> 00:08:16,018 and I spent a lot of my childhood raising money for Save the Children, 87 00:08:16,018 --> 00:08:28,147 and getting involved in other activities that were very much following 88 00:08:28,161 --> 00:08:39,100 the charity-pity model and certainly not a model of 89 00:08:39,100 --> 00:08:50,415 making space for and supporting and lifting up other people with disabilities. 90 00:08:50,415 --> 00:08:58,915 the onset of my disability wasn't until many years later, 91 00:08:58,915 --> 00:09:07,473 but when I was in highschool I had a requirement 92 00:09:10,733 --> 00:09:16,371 to do community service I had and opportunity to do 93 00:09:16,371 --> 00:09:21,910 or had an obligation to do community service 94 00:09:21,910 --> 00:09:26,663 And I started off...this was the year of the 95 00:09:26,663 --> 00:09:31,397 first Earth Day and I started crushing glass 96 00:09:31,397 --> 00:09:36,508 at the local recycling center. I turned out 97 00:09:36,508 --> 00:09:42,425 that was really boring but lots of my 98 00:09:42,425 --> 00:09:49,043 classmates were volunteering at a state institution 99 00:09:49,043 --> 00:09:54,691 for people with disabilities and I joined them 100 00:09:54,691 --> 00:10:04,199 once a week and looking back on it again it was 101 00:10:04,199 --> 00:10:09,143 pretty shocking that at 13 years old I was assigned 102 00:10:09,143 --> 00:10:16,799 as the teacher of a classroom of 30 adults 103 00:10:16,799 --> 00:10:22,850 who had never had the opportunity to attend 104 00:10:22,850 --> 00:10:27,494 school and they now had a 13 year old teacher 105 00:10:27,494 --> 00:10:33,750 once a week. Needless to say, I learned 106 00:10:33,750 --> 00:10:37,200 way more from them than they learned 107 00:10:37,200 --> 00:10:44,626 from me bug we had a lot of fun and many of them became 108 00:10:44,626 --> 00:10:50,698 friends very much along the rest of my path 109 00:10:50,698 --> 00:10:54,216 unfortunately, some of them are no longer alive 110 00:10:54,216 --> 00:10:58,433 but there are a couple of people who are 111 00:10:58,433 --> 00:11:05,716 very much a part of my life and fortunately 112 00:11:05,716 --> 00:11:09,219 they were successful in liberating themselves 113 00:11:09,219 --> 00:11:13,394 from that state institution, so they and 114 00:11:13,394 --> 00:11:21,159 many others taught me a lot but the real 115 00:11:21,159 --> 00:11:26,971 pivotal experience for me, I was working back 116 00:11:26,971 --> 00:11:32,147 at that state institution. This was my first 117 00:11:32,147 --> 00:11:37,095 paid job in disability services and I had been 118 00:11:37,095 --> 00:11:42,796 hired to work in what was called a cottage 119 00:11:42,796 --> 00:11:51,645 for 40 women with intellectual disabilities 120 00:11:51,645 --> 00:11:59,059 and this cottage was on beautiful grounds but the women lived in a building with 20 on one side 20 on the other side 121 00:11:59,059 --> 00:12:08,952 and my responsibilities included assisting them in bathing and getting dressed 122 00:12:08,952 --> 00:12:16,833 and in eating. many of them were unable to 123 00:12:16,833 --> 00:12:21,689 feed themselves. Some because they had 124 00:12:21,689 --> 00:12:26,143 never been given the opportunity and others 125 00:12:26,143 --> 00:12:29,612 because of their physical disability and 126 00:12:29,612 --> 00:12:44,827 a lack of any sort of adaptive utensils or adaptive equipment 127 00:12:44,827 --> 00:12:51,663 as I was feeding people it was the same every 128 00:12:51,663 --> 00:12:56,017 day. A plate would come out and there were 129 00:12:56,017 --> 00:12:58,837 3 mounds of food on the plate. One mound 130 00:12:58,837 --> 00:13:01,777 was alway brown one mound was always green 131 00:13:01,777 --> 00:13:08,103 and one mound was always white. The meat 132 00:13:08,103 --> 00:13:20,439 the vegetable and the starch, and I know that 133 00:13:20,439 --> 00:13:24,002 people like to eat their meal different 134 00:13:24,002 --> 00:13:27,391 ways. There would also be a desert every 135 00:13:27,391 --> 00:13:30,097 day, a jello or ice cream, again in a 136 00:13:30,097 --> 00:13:41,551 mound.and I would spend time with each of 137 00:13:41,551 --> 00:13:45,842 the individuals who were having their meal 138 00:13:45,842 --> 00:13:51,839 and we'd be working together trying to 139 00:13:51,839 --> 00:13:56,419 figure out, did they prefer to eat their desert first? 140 00:13:56,419 --> 00:13:58,589 Did they prefer 141 00:13:58,589 --> 00:14:01,048 a little bit of the brown and a little 142 00:14:01,048 --> 00:14:03,879 bit of the white on the fork? Did they not 143 00:14:03,879 --> 00:14:06,716 want their food touching? And so I would 144 00:14:06,716 --> 00:14:09,833 work back and forth with them to try to 145 00:14:09,833 --> 00:14:12,971 figure out what their preference was and 146 00:14:12,971 --> 00:14:16,733 I got in trouble 'cause I was spending too 147 00:14:16,733 --> 00:14:22,933 much time and ultimately I was moved 148 00:14:22,933 --> 00:14:28,092 to a different position because I was 149 00:14:28,092 --> 00:14:30,933 taking too much time giving people an 150 00:14:30,933 --> 00:14:34,933 opportunity to make some choices and 151 00:14:34,933 --> 00:14:38,842 express preferences. 152 00:14:38,842 --> 00:14:43,774 So that was extremely pivitol, and in many ways, 153 00:14:43,774 --> 00:14:52,523 those early experiences have really totally 154 00:14:52,523 --> 00:14:56,133 driven who I am and what 155 00:14:56,133 --> 00:15:00,678 I believe all these years later. 156 00:15:00,678 --> 00:15:06,200 In terms of the Americans with Disabilities Act 157 00:15:06,200 --> 00:15:12,203 I had a very close personal experience with 158 00:15:12,203 --> 00:15:16,506 what was then called Public Law 94142: 159 00:15:16,506 --> 00:15:23,399 The Education of All Handicapped Act, 160 00:15:23,399 --> 00:15:27,715 later on renamed The Individuals with Disabiities Act 161 00:15:27,715 --> 00:15:34,286 IDEA, and I had a very personal family experience 162 00:15:34,286 --> 00:15:41,013 with IDEA and became aware of legislative initiatives 163 00:15:41,013 --> 00:15:47,834 and how the IDEA had just been passed 164 00:15:47,834 --> 00:15:55,251 and then I started to become more aware 165 00:15:55,251 --> 00:16:02,697 of the work being done, back in the 70's. 166 00:16:02,697 --> 00:16:06,764 Work being done on some other legislative 167 00:16:06,764 --> 00:16:12,723 initiatives, the 504, the passage of the 168 00:16:12,723 --> 00:16:18,753 Rehabilitation Act, followed by the 504 169 00:16:18,753 --> 00:16:25,305 sit-in in San Francisco to get the 170 00:16:25,305 --> 00:16:30,182 regulations put in place. That really 171 00:16:30,182 --> 00:16:35,762 caught my attention. And between the 172 00:16:35,762 --> 00:16:39,758 little bits of information I was getting 173 00:16:39,758 --> 00:16:43,418 there and the work that I was doing 174 00:16:43,418 --> 00:16:49,583 and then becomming a full-time 175 00:16:49,583 --> 00:16:53,221 advocate. Going to work for an 176 00:16:53,221 --> 00:16:57,058 independent living center in 1982. 177 00:16:57,058 --> 00:17:03,339 I then became extremely involved in 178 00:17:03,339 --> 00:17:10,003 systems change and how to develop 179 00:17:10,003 --> 00:17:15,224 policy, how to organize and support the 180 00:17:15,224 --> 00:17:20,457 rights, voices and preferences of other 181 00:17:20,457 --> 00:17:28,260 people and because I lived in Connecticut and 182 00:17:28,260 --> 00:17:34,309 the original author of the Americans with 183 00:17:34,309 --> 00:17:36,849 Disabilities Act, the first time the bill 184 00:17:36,849 --> 00:17:39,417 was introduced was Senator Will Weiker 185 00:17:39,417 --> 00:17:44,021 of Connecticut and Senator Weiker, 186 00:17:44,021 --> 00:17:48,820 father of a great young man who 187 00:17:48,820 --> 00:17:55,534 had Down Syndrome, Senator Weiker 188 00:17:55,534 --> 00:18:01,717 was very involved with the disability 189 00:18:01,717 --> 00:18:06,344 advocacy community in Connecticut and 190 00:18:06,344 --> 00:18:11,276 I then had the incredible opportunity to 191 00:18:11,276 --> 00:18:16,116 go to Boston and testify at one of 192 00:18:16,116 --> 00:18:23,540 the, Congressman Major Owens feild hearings 193 00:18:23,540 --> 00:18:27,150 on the Americans with Disabiities Act so 194 00:18:27,150 --> 00:18:30,260 of course that first time around 195 00:18:30,260 --> 00:18:33,114 the bill didn't pass. 196 00:18:33,114 --> 00:18:36,776 But boy oh boy, were we revved up 197 00:18:36,776 --> 00:18:46,389 and in the passage of the ADA 198 00:18:46,389 --> 00:18:46,639 ... 199 00:18:46,639 --> 00:18:50,406 In the period in which, once the bill 200 00:18:50,406 --> 00:18:53,900 was reintroduced and folks were organizing 201 00:18:53,900 --> 00:19:00,120 I remember that we had stacks and stacks 202 00:19:00,120 --> 00:19:05,472 of bright pink postcards and we were 203 00:19:05,472 --> 00:19:12,518 organizing folks across the state to sign 204 00:19:12,518 --> 00:19:18,740 those postcards supporting passage 205 00:19:18,740 --> 00:19:26,487 of the ADA and then... 206 00:19:26,487 --> 00:19:30,027 This was sort of a wonderful 207 00:19:30,027 --> 00:19:34,696 but maybe a little bit misleading experience 208 00:19:34,696 --> 00:19:38,432 we actually were successful! The bill got 209 00:19:38,432 --> 00:19:42,001 passed! And I remember thinking 210 00:19:42,001 --> 00:19:45,395 well this wasn't that hard, we had to 211 00:19:45,395 --> 00:19:48,607 go at it twice but, this wasn't so hard; 212 00:19:48,607 --> 00:19:52,077 lets take on some more legislation so 213 00:19:52,077 --> 00:19:58,265 turns out it wasn't as easy as it looked to me 214 00:19:58,265 --> 00:20:01,441 is wasn't just about hot pink post cards 215 00:20:01,441 --> 00:20:04,572 and meetings and marches. 216 00:20:04,572 --> 00:20:09,216 That all helped but even that, sometimes 217 00:20:09,216 --> 00:20:14,468 these days, doesn't seem to be enough 218 00:20:14,468 --> 00:20:18,750 to change policy. 219 00:20:18,750 --> 00:20:27,902 That said, that's my earliest journey 220 00:20:27,902 --> 00:20:30,966 to 1990. 221 00:20:30,966 --> 00:20:36,309 Thank you Marcie. Ok, were's going to the present now 222 00:20:36,309 --> 00:20:39,219 Just so you know, I have another interview at 223 00:20:39,219 --> 00:20:43,853 2, so we're gonna have 3 more sections 224 00:20:43,853 --> 00:20:45,758 the present, the future 225 00:20:45,758 --> 00:20:48,612 and the call to action so just to 226 00:20:48,612 --> 00:20:51,438 pace yourself within that. 227 00:20:51,438 --> 00:20:53,616 So, the present: Has the ADA made a 228 00:20:53,616 --> 00:20:56,518 difference. Tell us about your "aha moment" 229 00:20:56,518 --> 00:20:59,953 that told you that the ADA is or isn't making 230 00:20:59,953 --> 00:21:02,723 a difference and to what extent 231 00:21:02,723 --> 00:21:05,605 based on your areas of passions and 232 00:21:05,605 --> 00:21:09,757 expertise where you see or not see the impact of the ADA 233 00:21:09,757 --> 00:21:17,164 Marcie: So the ADA has had a huge and sweeping 234 00:21:17,164 --> 00:21:26,425 impact and it's important for me to begin, as 235 00:21:26,425 --> 00:21:30,925 I talk about the present day, as we're embarking 236 00:21:30,925 --> 00:21:36,410 on ADA30, it's really important to start with 237 00:21:36,410 --> 00:21:42,204 how much things absolutely things have changed 238 00:21:42,204 --> 00:21:48,658 so certainly some of the architectural 239 00:21:48,658 --> 00:21:52,208 barrier removal efforts. 240 00:21:52,208 --> 00:21:54,941 some of the significant 241 00:21:54,941 --> 00:21:58,345 improvements in effective 242 00:21:58,345 --> 00:22:03,282 equally effective communication 243 00:22:03,282 --> 00:22:07,952 some of the requirements around programs. 244 00:22:07,952 --> 00:22:10,142 All of those 245 00:22:10,142 --> 00:22:18,661 have significantly changed...often. 246 00:22:18,661 --> 00:22:21,895 There have been many 247 00:22:21,895 --> 00:22:23,829 great initiatives. 248 00:22:23,829 --> 00:22:26,367 Over the years 249 00:22:26,367 --> 00:22:33,174 But we always had to maintain a relentess 250 00:22:33,174 --> 00:22:41,072 battle to not let anything slip 251 00:22:41,072 --> 00:22:45,202 to no lose any sort of momentum 252 00:22:45,202 --> 00:22:49,389 towards accessibility. 253 00:22:49,389 --> 00:22:55,863 If we look away for a minute 254 00:22:55,863 --> 00:22:59,790 our rights will be swept away from us 255 00:22:59,790 --> 00:23:03,651 and I can certainly talk about the very 256 00:23:03,651 --> 00:23:10,698 present day...and what I have to say about 257 00:23:10,698 --> 00:23:16,601 where we are today... 258 00:23:16,601 --> 00:23:19,852 is not great. So I do want to take 259 00:23:19,852 --> 00:23:23,826 a little bit more time to call out the 260 00:23:23,826 --> 00:23:35,351 significant progress in so many aspects of 261 00:23:35,351 --> 00:23:40,073 daily life, in which, 262 00:23:40,073 --> 00:23:50,730 we can call out failures of ADA compliance, 263 00:23:50,730 --> 00:23:59,059 enforcement of the law, but it is 264 00:23:59,059 --> 00:24:02,838 often times in comparrison 265 00:24:02,838 --> 00:24:06,251 to examples where it's working so 266 00:24:06,251 --> 00:24:12,229 when transportation is not accessible 267 00:24:12,229 --> 00:24:19,852 we're calling it out because we know the good 268 00:24:19,852 --> 00:24:22,869 and promising practices 269 00:24:22,869 --> 00:24:25,465 that have been in place 270 00:24:25,465 --> 00:24:29,719 for transportation accessiblity 271 00:24:29,719 --> 00:24:38,658 make the failures so much more egregious... in housing 272 00:24:38,658 --> 00:24:46,427 in employment, in the kinds of assistive devices 273 00:24:46,427 --> 00:24:53,008 that are available. The universal design 274 00:24:53,008 --> 00:25:00,503 of places and things...all of that 275 00:25:00,503 --> 00:25:10,385 points to the examples of where we are 276 00:25:10,385 --> 00:25:15,623 getting it right and in stark contrast the areas 277 00:25:15,623 --> 00:25:20,321 where we are egregiously getting it wrong. 278 00:25:20,321 --> 00:25:32,251 And I have to say that it's just very recently, I 279 00:25:32,251 --> 00:25:40,478 have lead my organization's involvement in a 280 00:25:40,478 --> 00:25:47,207 petition to the US department of Health and Human Services 281 00:25:47,207 --> 00:25:55,790 demanding that people with disabilities be immediately relocated 282 00:25:55,790 --> 00:26:04,012 out of nursing homes and other congregate settings 283 00:26:04,012 --> 00:26:08,621 due to the horrific circumstances in those 284 00:26:08,621 --> 00:26:15,020 congregate settings due to Covid-19 285 00:26:15,020 --> 00:26:20,620 and the failure to provide 286 00:26:20,620 --> 00:26:26,470 appropriate protections for people with 287 00:26:26,470 --> 00:26:33,292 disabilities in institutional settings. The ADA 288 00:26:33,292 --> 00:26:40,611 back in 1990, very clearly gave people with 289 00:26:40,611 --> 00:26:52,565 disabilities significant rights and even when 290 00:26:52,565 --> 00:27:06,484 challenged in 1999, the Olmstead Case 291 00:27:06,484 --> 00:27:13,234 which was a Georgia case and two 292 00:27:13,234 --> 00:27:19,108 women, Lois and Elaine, Lois Curtis, 293 00:27:19,108 --> 00:27:20,909 an incredible woman 294 00:27:20,909 --> 00:27:24,972 I've had the pleasure of being with on 295 00:27:24,972 --> 00:27:30,509 a number of occasions. The two of them 296 00:27:30,509 --> 00:27:35,264 demanded that they had a right 297 00:27:35,264 --> 00:27:39,134 to live in the most integrated setting appropriate 298 00:27:39,134 --> 00:27:45,409 to their needs and the decision, the case 299 00:27:45,409 --> 00:27:47,782 went all the way to the supreme ccourt 300 00:27:47,782 --> 00:27:54,533 and I was among those who 301 00:27:54,533 --> 00:27:58,629 slept out on the steps of the Supreme Court 302 00:27:58,629 --> 00:28:01,954 on the night before their 303 00:28:01,954 --> 00:28:03,897 case was heard and I was 304 00:28:03,897 --> 00:28:07,264 among the folks who celebrated 305 00:28:07,264 --> 00:28:11,021 out in front of the Supreme Court on the day 306 00:28:11,021 --> 00:28:14,384 that that decision came down in favor of 307 00:28:14,384 --> 00:28:20,026 Lois and Elaine's right and the rights of tens 308 00:28:20,026 --> 00:28:24,028 of thousands...millions of people with 309 00:28:24,028 --> 00:28:29,238 disabilities to live in the most integrated setting 310 00:28:29,238 --> 00:28:31,376 appropriate for their needs. 311 00:28:32,485 --> 00:28:36,994 Given that we are 21 years after that 312 00:28:36,994 --> 00:28:42,370 decision, yesterday the American Civil 313 00:28:42,370 --> 00:28:46,308 Liberties Union submitted a petietion 314 00:28:46,998 --> 00:28:49,852 and the World Insitute on Disability joined 315 00:28:50,172 --> 00:28:55,026 a number of other disability organiations in 316 00:28:56,216 --> 00:29:00,221 bringing that petition demanding that 317 00:29:00,221 --> 00:29:02,873 people with disabilities 318 00:29:02,873 --> 00:29:08,481 be immediately relocated out of these 319 00:29:08,481 --> 00:29:15,462 congregate settings. Tens of thousands of people 320 00:29:15,462 --> 00:29:20,052 have died in the last hundred days 321 00:29:20,052 --> 00:29:23,662 the genocide of people with disabilities 322 00:29:23,662 --> 00:29:28,396 because of the failures of implementation 323 00:29:28,396 --> 00:29:33,223 of that Olmstead decision and the 324 00:29:33,223 --> 00:29:37,362 failures of our government to provide 325 00:29:37,362 --> 00:29:42,069 the kinds of supports and services that 326 00:29:42,069 --> 00:29:44,502 enable people with disabilites 327 00:29:44,502 --> 00:29:49,008 to live safely and with the 328 00:29:49,008 --> 00:29:50,865 support they need in place 329 00:29:50,865 --> 00:29:59,701 in the community and very infuriatingly 330 00:30:00,461 --> 00:30:05,200 our continued persistent calls for 331 00:30:05,200 --> 00:30:09,096 people with disabilities to be adequately 332 00:30:09,096 --> 00:30:13,138 served in these 333 00:30:14,114 --> 00:30:17,857 in disasters, have been ignored 334 00:30:17,857 --> 00:30:21,503 and the bottom line has been 335 00:30:21,503 --> 00:30:25,548 that, again, over the last hundred days 336 00:30:27,008 --> 00:30:30,411 tens of thousands of people with disabilities 337 00:30:30,411 --> 00:30:34,482 have died. And when I was called on 338 00:30:34,482 --> 00:30:36,801 saying that those were people 339 00:30:36,801 --> 00:30:40,044 with disabilities. I've had conversations 340 00:30:40,044 --> 00:30:44,380 with a number of senior government officials 341 00:30:44,380 --> 00:30:48,125 who are like, "Why are you saying 342 00:30:48,125 --> 00:30:53,101 people with disabilities... these were 343 00:30:53,101 --> 00:30:58,088 old people with underlying conditions living 344 00:30:58,088 --> 00:31:01,958 in nursing homes and long-term care facilities." 345 00:31:01,958 --> 00:31:04,287 Well, you don't go to a nursing home because 346 00:31:04,287 --> 00:31:06,899 you're old. You go to a nursing home because you 347 00:31:06,899 --> 00:31:09,766 have a disability and the 348 00:31:09,766 --> 00:31:12,286 supports and services you need to 349 00:31:12,286 --> 00:31:14,876 stay in the community have not been given 350 00:31:14,876 --> 00:31:21,556 to you and the vast majority, some would say, 351 00:31:21,556 --> 00:31:25,766 all of those deaths in congregate facilities are 352 00:31:25,766 --> 00:31:29,041 people with disabilities. Most of them 353 00:31:29,056 --> 00:31:34,776 Black and Brown and people living 354 00:31:34,776 --> 00:31:41,406 in poverty and the failures of the the 355 00:31:41,406 --> 00:31:44,318 Americans with Disabilities Act and the 356 00:31:44,318 --> 00:31:50,287 Olmstead decision and our government's will 357 00:31:50,997 --> 00:31:54,284 to monitor and enforce this law 358 00:31:54,284 --> 00:31:58,287 and the rehabilitation act have a 359 00:31:59,334 --> 00:32:03,464 devastating impact on where we are today 360 00:32:03,464 --> 00:32:07,497 and death of many of our siblings... 361 00:32:07,497 --> 00:32:11,117 without end in sight. 362 00:32:12,778 --> 00:32:16,860 Than you, Marcie. Ok, so next on to 363 00:32:16,860 --> 00:32:20,099 the future with the work you've been doing 364 00:32:20,099 --> 00:32:23,187 you've seen a lot of progress and barriers 365 00:32:23,187 --> 00:32:25,492 If you could pick one thing to change, 366 00:32:25,492 --> 00:32:28,639 or that needs to occur to have access and equality 367 00:32:28,639 --> 00:32:31,319 I know that's hard, one thing 368 00:32:31,319 --> 00:32:34,639 to have access and equality present in 369 00:32:34,639 --> 00:32:38,764 the lives of people with disabilities what would that be? 370 00:32:38,764 --> 00:32:43,722 Marcie: The one thing that must 371 00:32:43,722 --> 00:32:50,194 happen: People with disabiites have civil 372 00:32:50,194 --> 00:32:56,232 rights protections by law and the one thing 373 00:32:56,232 --> 00:33:01,908 that must happen is that thier rights are 374 00:33:01,908 --> 00:33:07,829 monitored and enforced without 375 00:33:07,829 --> 00:33:14,090 exception. Following the law is not enough. 376 00:33:14,090 --> 00:33:18,546 We need universal designs to 377 00:33:18,546 --> 00:33:23,349 be the standard. We need accessibility and 378 00:33:23,349 --> 00:33:30,077 accommodation to be readily available but 379 00:33:30,077 --> 00:33:34,476 we must have monitoring and enforcement 380 00:33:34,476 --> 00:33:38,786 every federal dollar is supposed to be spent 381 00:33:38,786 --> 00:33:41,886 in compliance with the Rehabilitation Act 382 00:33:41,886 --> 00:33:46,913 and between what the Rehab Act and 383 00:33:46,913 --> 00:33:53,540 the ADA require. There should be no room 384 00:33:53,540 --> 00:33:57,610 for people with those civil rights protections to 385 00:33:57,610 --> 00:34:06,970 be repeatedly denied and unable to fully 386 00:34:06,970 --> 00:34:11,110 participate in home and community life. 387 00:34:13,060 --> 00:34:21,431 Monitoring and enforcement must be the 388 00:34:21,431 --> 00:34:28,026 floor and the ceiling. But enforcing these civil rights 389 00:34:28,026 --> 00:34:31,676 laws is absolutely the floor. 390 00:34:31,676 --> 00:34:34,647 Thank you. So what can we do? What steps can 391 00:34:34,667 --> 00:34:37,526 we as community members take right now? 392 00:34:38,776 --> 00:34:44,893 Marcie: So what we can do right now is 393 00:34:44,893 --> 00:34:47,789 one of my favorite sayings: "Never give up, 394 00:34:47,789 --> 00:34:51,135 Never give in." Another of my favorites: 395 00:34:51,135 --> 00:34:56,431 "Nothing about us without us!" We as 396 00:34:56,431 --> 00:35:01,971 disability community leaders need to stick 397 00:35:01,971 --> 00:35:09,108 together. We need to center our work around 398 00:35:10,178 --> 00:35:16,771 people who are multiply marginalized, exluded 399 00:35:16,771 --> 00:35:22,216 We need to be sure that we're not wasting 400 00:35:22,216 --> 00:35:30,838 our time with infighting and the kind of 401 00:35:30,838 --> 00:35:38,217 divisive, childish behavior that some folks are 402 00:35:38,217 --> 00:35:45,097 still stuck on engaging in. We absolutely must 403 00:35:45,097 --> 00:35:49,057 reach a hand forward and reach a hand back, 404 00:35:49,057 --> 00:35:54,107 stick together and continue 405 00:35:54,107 --> 00:36:11,884 relentlessly to work towards the realization of 406 00:36:11,884 --> 00:36:15,657 the goal that the ADA was 407 00:36:15,657 --> 00:36:18,546 written around and so many 408 00:36:18,546 --> 00:36:25,343 of our siblings have fought so very hard for. 409 00:36:25,343 --> 00:36:31,983 We've lost a bunch of those hard-working 410 00:36:31,983 --> 00:36:38,607 visionary leaders. Many of them have been 411 00:36:38,607 --> 00:36:43,663 lost in recent years. Some of them have been 412 00:36:43,663 --> 00:36:50,665 lost along the way. We have an incredible 413 00:36:50,665 --> 00:36:59,703 legacy to care for. We have huge opportunities to 414 00:36:59,703 --> 00:37:03,930 work towards. Technology has the potential for 415 00:37:03,930 --> 00:37:07,223 leveling the playing field if in fact people have 416 00:37:07,223 --> 00:37:11,983 real access and the World Institute on 417 00:37:11,983 --> 00:37:15,953 Disability and our commitment to 418 00:37:15,953 --> 00:37:19,413 work in partnership with other 419 00:37:19,413 --> 00:37:22,473 disabiity-led organizations and 420 00:37:22,473 --> 00:37:28,866 our allys to make communities 421 00:37:28,866 --> 00:37:32,615 stronger, more resilient for the whole 422 00:37:32,615 --> 00:37:36,360 community. 'Cause when we get it right 423 00:37:36,360 --> 00:37:39,990 for people with disabilities, I think 424 00:37:39,990 --> 00:37:44,130 the whole community, not only benefits but 425 00:37:44,130 --> 00:37:50,240 is stronger for our leadership 426 00:37:50,360 --> 00:37:59,130 our contributions, our expertise 427 00:37:59,130 --> 00:38:04,830 in what it takes to make daily life work for everybody. 428 00:38:07,807 --> 00:38:09,963 Excelent. Thank you!