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 --> 00:00:07,472 and I'm going to mute myself now, 4 00:00:07,472 --> 00:00:08,844 and you'll go ahead and do your intro. 5 00:00:08,844 --> 00:00:10,446 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 --> 00:01:00,960 for people living in residential programs early in my career 13 00:01:00,960 --> 00:01:09,100 with people in, children in school settings, 14 00:01:09,100 --> 00:01:15,002 people in vocational rehabilitation, 15 00:01:15,002 --> 00:01:23,411 and then people in community living environments, 16 00:01:23,411 --> 00:01:30,917 then along the way, I became very involved in disability rights 17 00:01:30,917 --> 00:01:41,317 and very involved in the early days of advocacy 18 00:01:41,317 --> 00:01:44,957 befor the ADA was introduced. 19 00:01:44,957 --> 00:01:54,850 And then I worked for disability advocacy organizations almost ever since. 20 00:01:54,860 --> 00:01:58,412 In addition to my own disability, 21 00:01:58,412 --> 00:02:02,043 I'm also the parent of two 22 00:02:02,043 --> 00:02:04,868 now adults with disabilities. 23 00:02:04,868 --> 00:02:08,559 My Husband also has a disability, 24 00:02:08,559 --> 00:02:17,443 and much od my family also happen to be people with disabilities 25 00:02:17,443 --> 00:02:23,748 so disability rights is just part of 26 00:02:23,748 --> 00:02:27,376 everything I am and most everything I do. 27 00:02:27,376 --> 00:02:38,803 I did spend from 2001 and onward 28 00:02:38,803 --> 00:02:44,427 focusing very much on what happens for people with disabilityes 29 00:02:44,434 --> 00:02:47,084 before, during, and after disasters. 30 00:02:47,084 --> 00:02:54,235 And that's been a real particular laser focus of mine ever since, 31 00:02:54,237 --> 00:02:57,499 and in fact, I've had the opportunity 32 00:02:57,499 --> 00:03:01,932 as an appointee in the Obama administrashion 33 00:03:01,932 --> 00:03:08,229 to spend just about 8 yeards at FEMA, 34 00:03:08,229 --> 00:03:14,501 establishing FEMA's Office of Disability Integration Coordination, 35 00:03:14,501 --> 00:03:23,258 and building a cadre of disability experts 36 00:03:23,258 --> 00:03:27,478 of the same pond, supporting governors 37 00:03:27,478 --> 00:03:34,836 and emergency managers and most particularly 38 00:03:34,836 --> 00:03:38,398 engaging people with disabilities, and disability organizations 39 00:03:38,398 --> 00:03:42,170 in emergency preparedness 40 00:03:42,170 --> 00:03:46,638 and throughout disaster response recovery and mitigation. 41 00:03:46,638 --> 00:03:54,205 So one last piece since I've been with 42 00:03:54,205 --> 00:03:59,132 the World Institute on Disability since last September, 43 00:03:59,132 --> 00:04:05,602 my ongoing focus on global 44 00:04:05,602 --> 00:04:09,431 disability rights has really been 45 00:04:09,431 --> 00:04:12,550 something that I've had much more 46 00:04:12,550 --> 00:04:16,305 opportunity to be actively involved in 47 00:04:16,305 --> 00:04:26,005 and I have spent the time since joining 48 00:04:26,005 --> 00:04:31,601 WID building a strategic planning process 49 00:04:31,601 --> 00:04:36,884 and supporting the organization to 50 00:04:36,884 --> 00:04:45,320 establish new priorities, taking a look at 51 00:04:45,320 --> 00:04:48,797 the organization's mission, and very 52 00:04:48,797 --> 00:04:53,082 recently establishing four particular areas 53 00:04:53,082 --> 00:04:56,552 of focus for the organization as we move Forward. 54 00:04:59,472 --> 00:05:01,972 Thank you Marcie. Excellent, okay 55 00:05:01,972 --> 00:05:05,140 I apologize that my neighbor is chipping 56 00:05:05,140 --> 00:05:08,165 a lot of brush today, so it's making extra sound 57 00:05:08,165 --> 00:05:09,297 whenever I unmute, 58 00:05:09,297 --> 00:05:12,656 but don't worry, it won't interfere with your recording. 59 00:05:12,656 --> 00:05:14,990 Okay, so the first question is 60 00:05:14,990 --> 00:05:17,225 about the past. So tell of your first 61 00:05:17,225 --> 00:05:18,942 memory realizing that there were 62 00:05:18,942 --> 00:05:21,762 accessibility issues, discrimination, or 63 00:05:21,762 --> 00:05:24,198 lack of inclusion. What is your personal 64 00:05:24,198 --> 00:05:26,409 story or connection with the American with 65 00:05:26,409 --> 00:05:28,516 Disabilities Act? What do you remember 66 00:05:28,516 --> 00:05:30,502 about the day that it was signed, if 67 00:05:30,502 --> 00:05:32,946 applicable? And what was the impact on 68 00:05:32,946 --> 00:05:36,062 you and on others? Remember to tap 69 00:05:36,062 --> 00:05:38,888 something so that the camera shifts to you 70 00:05:38,888 --> 00:05:39,917 before you start. 71 00:05:44,654 --> 00:05:53,454 I first became aware of disability at a 72 00:05:53,454 --> 00:05:58,355 very young age. I had a best friend in 73 00:05:58,355 --> 00:06:04,758 first grade. His name was Gregory, and he and i 74 00:06:04,758 --> 00:06:09,784 were just wonderful friends. 75 00:06:09,784 --> 00:06:12,794 We spent a lot of time together, and then all 76 00:06:12,794 --> 00:06:15,816 of a sudden, one day Gregory was gone 77 00:06:15,816 --> 00:06:22,802 and I didn't know what happened to him or 78 00:06:22,802 --> 00:06:25,507 where he went and it wasn't until many 79 00:06:25,507 --> 00:06:30,291 years later that I found out that Gregory 80 00:06:30,291 --> 00:06:34,911 had Down Syndrome, and he had been removed 81 00:06:34,911 --> 00:06:38,502 from my kindergarten class and first 82 00:06:38,502 --> 00:06:41,489 grade I think it was at that point. And 83 00:06:41,489 --> 00:06:44,970 apparently he had been sent to some other 84 00:06:44,970 --> 00:06:52,462 school, somewhere. And the loss of his 85 00:06:52,462 --> 00:06:58,128 friendship was pretty surprising and 86 00:06:58,128 --> 00:07:03,935 I didn't understand you know where he went 87 00:07:03,935 --> 00:07:06,818 Looking back on it, it was kind of 88 00:07:06,818 --> 00:07:09,239 peculiar that we didn't just get to still 89 00:07:09,239 --> 00:07:11,819 be friends 'cause he didn't move away, 90 00:07:11,819 --> 00:07:15,934 he just stopped going to my school. 91 00:07:15,934 --> 00:07:28,004 But I remember just being confused and then 92 00:07:28,004 --> 00:07:33,866 over the next number of years, I lived in 93 00:07:33,866 --> 00:07:38,305 a town that was also the home of 94 00:07:38,305 --> 00:07:43,314 Save the Children, and I was always very 95 00:07:43,314 --> 00:07:48,486 interested in the work that Save the Children 96 00:07:48,486 --> 00:07:53,791 was doing and I am embarrassed to admit 97 00:07:53,791 --> 00:08:00,050 my earliest involvement in humanitarian 98 00:08:00,050 --> 00:08:05,649 work was from a very charity-model 99 00:08:05,649 --> 00:08:10,976 approach, and I spent a lot of my 100 00:08:10,976 --> 00:08:16,018 childhood raising money for Save the Children 101 00:08:16,018 --> 00:08:18,977 and getting involved in other 102 00:08:18,977 --> 00:08:28,291 activities that were very much following 103 00:08:28,291 --> 00:08:33,541 the charity-pity model and certainly not 104 00:08:33,541 --> 00:08:45,420 a model making space for and supporting and lifting 105 00:08:45,420 --> 00:08:49,595 up other people with disabilities. 106 00:08:49,595 --> 00:08:57,039 the onset of my disability wasn't until many 107 00:08:57,039 --> 00:09:01,520 years later, but when I was in high school 108 00:09:01,520 --> 00:09:13,493 I had the, I had a requirement to do... 109 00:09:13,493 --> 00:09:15,771 I can't even remember what it's called now 110 00:09:15,771 --> 00:09:18,070 community service! Sorry. I had an 111 00:09:18,070 --> 00:09:21,423 opportunity to do-- or I had an obligation 112 00:09:21,423 --> 00:09:24,283 to do community service and I started off 113 00:09:24,283 --> 00:09:29,497 This was the year of the first Earth Day 114 00:09:29,497 --> 00:09:34,448 and I started crushing glass at the local 115 00:09:34,448 --> 00:09:38,114 recycling center and it turned out that 116 00:09:38,114 --> 00:09:44,504 that was really boring but lots of my 117 00:09:44,504 --> 00:09:50,453 classmates were volunteering at a state 118 00:09:50,453 --> 00:09:53,421 institution for people with disabilities 119 00:09:53,421 --> 00:10:02,829 and I joined them once a week and looking 120 00:10:02,829 --> 00:10:07,413 back on it again, it was pretty shocking 121 00:10:07,413 --> 00:10:11,767 that at 13 years old, I was assigned as 122 00:10:11,767 --> 00:10:16,457 the teacher of a classroom of 30 adults 123 00:10:16,457 --> 00:10:19,242 who had never had the opportunity to 124 00:10:19,242 --> 00:10:23,480 attend school and they now had a 125 00:10:23,480 --> 00:10:27,494 13-year old teacher once a week. 126 00:10:27,494 --> 00:10:31,889 Needles to say, I learned way more from them 127 00:10:31,889 --> 00:10:35,905 then they learned from me, but we had a lot of fun 128 00:10:35,905 --> 00:10:42,509 and many of them became friends very 129 00:10:42,509 --> 00:10:47,736 much along the rest of my path and 130 00:10:47,736 --> 00:10:51,473 unfortunately, some of them are no longer 131 00:10:51,473 --> 00:10:55,868 alive but there are a couple of people who 132 00:10:55,868 --> 00:11:00,245 are still very much a part of my life and 133 00:11:00,245 --> 00:11:05,873 fortunately, they were successful in 134 00:11:05,873 --> 00:11:09,285 liberating themselves from that state 135 00:11:09,285 --> 00:11:13,586 institution. And so they and many others 136 00:11:13,586 --> 00:11:21,169 taught me a lot. But the real pivotal 137 00:11:21,169 --> 00:11:26,014 experience for me, I was working back at 138 00:11:26,014 --> 00:11:30,135 that state institution, it was my first 139 00:11:30,135 --> 00:11:35,558 paid job in disability services and I had 140 00:11:35,558 --> 00:11:39,969 been hired to work in what was called a 141 00:11:39,969 --> 00:11:44,151 "cottage" for 40 women with intellectual 142 00:11:44,151 --> 00:11:50,645 disabilites and this "cottage" was on 143 00:11:50,645 --> 00:11:54,939 beautiful grounds but the women lived in a 144 00:11:54,939 --> 00:11:58,086 building 20 on one side, 20 on the other side 145 00:11:58,086 --> 00:12:02,505 and my responsibilities included 146 00:12:02,505 --> 00:12:06,489 assisting them in bathing and getting 147 00:12:06,489 --> 00:12:13,049 dressed and in eating. Many of them were 148 00:12:13,049 --> 00:12:20,745 unable to feed themselves. Some because 149 00:12:20,745 --> 00:12:23,213 they just had never been given the opportunity, 150 00:12:23,213 --> 00:12:26,059 and others because of their physical Disability 151 00:12:26,059 --> 00:12:34,186 and a lack of any sort of 152 00:12:34,186 --> 00:12:40,283 adapted utensils or other equipment. 153 00:12:40,283 --> 00:12:45,992 So as I was feeding people, the sort of 154 00:12:45,992 --> 00:12:49,504 the routine was the same every day. A plate 155 00:12:49,504 --> 00:12:52,599 would come out, and there would be 3 156 00:12:52,599 --> 00:12:56,896 mounds of food on the plate. One mound was 157 00:12:56,896 --> 00:12:59,747 always brown, one mound was always green 158 00:12:59,747 --> 00:13:02,557 and one mount was always white. 159 00:13:02,557 --> 00:13:10,607 You know the meat, the vegetable, and the starch 160 00:13:10,607 --> 00:13:19,313 And you know I know that people like to 161 00:13:19,313 --> 00:13:24,261 eat their meals different ways. 162 00:13:24,261 --> 00:13:27,879 there would also be a dessert every day, jello or 163 00:13:27,879 --> 00:13:30,822 ice cream, somthing again always in a mound. 164 00:13:30,822 --> 00:13:38,611 And so I would spend time with each of the 165 00:13:38,611 --> 00:13:42,807 individuals who were having their meal 166 00:13:42,807 --> 00:13:47,691 and would sort of be working together, 167 00:13:47,691 --> 00:13:50,792 trying to figure out did they prefer to have 168 00:13:50,792 --> 00:13:55,059 to eat their dessert first? 169 00:13:55,059 --> 00:13:58,589 Some people liked to do that. Did they prefer 170 00:13:58,589 --> 00:14:01,048 a little bit of the brown and a little bit 171 00:14:01,048 --> 00:14:03,879 of the white all on the same fork? 172 00:14:03,879 --> 00:14:06,276 Did they not want their food touching? 173 00:14:06,276 --> 00:14:09,583 You know and I would sort of work back and Forth 174 00:14:09,583 --> 00:14:12,071 with them to try and figure out what 175 00:14:12,071 --> 00:14:16,383 their preference was and I got in trouble 176 00:14:16,383 --> 00:14:19,613 because I was spending too much time 177 00:14:19,613 --> 00:14:26,252 and ultimately, I was moved to a different 178 00:14:26,252 --> 00:14:30,933 position because I was taking too much 179 00:14:30,933 --> 00:14:34,933 time giving people an opportunity to make 180 00:14:34,933 --> 00:14:38,842 some choices and express some preferences. 181 00:14:38,842 --> 00:14:43,774 So that was extremely pivotal and in 182 00:14:43,774 --> 00:14:48,223 many ways you know, those early early 183 00:14:48,223 --> 00:14:55,273 experiences have really totally driven 184 00:14:55,273 --> 00:15:00,678 who I am and what I believe all these years Latter. 185 00:15:00,678 --> 00:15:06,200 In terms of the Americans with Disabilities Act 186 00:15:06,200 --> 00:15:12,203 I had a very close personal experience 187 00:15:12,203 --> 00:15:14,856 with what was then called 188 00:15:14,856 --> 00:15:20,699 "public law 94142" the Education of 189 00:15:20,699 --> 00:15:25,655 All Handicapped Act, later on renamed 190 00:15:25,655 --> 00:15:29,586 the Individuals with Disabilities Act, IDEA 191 00:15:29,586 --> 00:15:33,371 and I had a very personal family 192 00:15:33,371 --> 00:15:39,364 experience with IDEA and became aware of 193 00:15:39,364 --> 00:15:45,971 legislative initiatives and how the IDEA 194 00:15:45,971 --> 00:15:52,579 had just been passed. And then I started 195 00:15:52,579 --> 00:15:58,294 to become more aware of the work being 196 00:15:58,294 --> 00:16:02,352 done. And this was back in the 70s 197 00:16:02,352 --> 00:16:06,553 work being done on some other legislative 198 00:16:06,553 --> 00:16:12,365 initiatives and the 504, the passage of 199 00:16:12,365 --> 00:16:17,012 the Rehabilitation Act, followed by the 200 00:16:17,012 --> 00:16:24,962 504 sit-in in San Francisco to get the 201 00:16:24,962 --> 00:16:31,272 regulations put in place. That really 202 00:16:31,272 --> 00:16:37,498 caught my attention and between the little 203 00:16:37,498 --> 00:16:41,373 bits of information I was getting there 204 00:16:41,373 --> 00:16:46,821 and the work I was doing 205 00:16:46,821 --> 00:16:51,118 and then becoming a full-time advocate 206 00:16:51,118 --> 00:16:55,199 going to work for an independent living center 207 00:16:55,199 --> 00:17:00,482 in 1982, I then became extremely involved 208 00:17:00,482 --> 00:17:10,114 in systems change and how to develop 209 00:17:10,114 --> 00:17:14,257 policy, how to organize, how to support 210 00:17:14,257 --> 00:17:20,320 the rights and voices and preferences of 211 00:17:20,320 --> 00:17:25,127 other people and because I lived in 212 00:17:25,127 --> 00:17:32,299 Connecticut and the original author of 213 00:17:32,299 --> 00:17:34,465 the Americans with Disability Act, 214 00:17:34,465 --> 00:17:37,366 the first time the bill was introduced was 215 00:17:37,366 --> 00:17:42,070 Senator Weicker of Connecticut, and 216 00:17:42,070 --> 00:17:48,574 Senator Weicker, father of a great young man 217 00:17:48,574 --> 00:17:52,411 who had Down Syndrome, 218 00:17:52,411 --> 00:17:59,324 Senator Weicker was very involved with the 219 00:17:59,324 --> 00:18:03,355 disability advocacy community in 220 00:18:03,355 --> 00:18:08,496 Connecticut, and I then had the incredible 221 00:18:08,496 --> 00:18:13,850 opportunity to go to Boston and testify 222 00:18:13,850 --> 00:18:21,986 at one of the Congress major hearings-- 223 00:18:21,986 --> 00:18:24,533 field hearings on the Americans with 224 00:18:24,533 --> 00:18:27,650 Disability Act. So you know of course that 225 00:18:27,650 --> 00:18:31,976 first time around, the bill didn't pass 226 00:18:31,976 --> 00:18:41,119 but boy oh boy we were revved up and in the 227 00:18:41,119 --> 00:18:46,907 passage of the ADA, in the period in which 228 00:18:46,907 --> 00:18:50,766 once the bill was re-introduced and votes 229 00:18:50,766 --> 00:18:55,276 were organizing, I remember that we had 230 00:18:55,276 --> 00:19:00,750 stacks and stacks and stacks of bright 231 00:19:00,750 --> 00:19:05,472 pink postcards and we were organizing 232 00:19:05,472 --> 00:19:12,518 folks across the state to develop, 233 00:19:12,518 --> 00:19:16,887 to sign those postcards supporting the 234 00:19:16,887 --> 00:19:26,487 passage of the ADA and then you know this 235 00:19:26,487 --> 00:19:30,357 was sort of a wonderful but maybe a littal 236 00:19:30,357 --> 00:19:36,026 bit misleading experience, we actually were 237 00:19:36,026 --> 00:19:39,062 successful. The bill got passed! And I 238 00:19:39,062 --> 00:19:43,671 remember thinking "Oh, well this wasn't that hard 239 00:19:43,671 --> 00:19:44,777 I mean, you know, we had to 240 00:19:44,777 --> 00:19:48,607 go at it twice, but well this wasn't so hard. 241 00:19:48,607 --> 00:19:51,077 Let's take on some more legislation!" 242 00:19:51,077 --> 00:19:56,055 so it turns out that it wasn't as easy 243 00:19:56,055 --> 00:19:58,711 as it looked to me. It wasn't just about 244 00:19:58,711 --> 00:20:03,482 hot pink postcards and meetings and 245 00:20:03,482 --> 00:20:09,216 marches--that all helped but even that 246 00:20:09,216 --> 00:20:14,468 sometimes these days, it doesn't seem to 247 00:20:14,468 --> 00:20:18,750 be enough to change policy. 248 00:20:18,750 --> 00:20:27,902 so that's my earliest journey to 1990. 249 00:20:30,516 --> 00:20:33,121 Thank you Marcie. Okay we're going to the 250 00:20:33,121 --> 00:20:37,319 present now. So just so you know, I do 251 00:20:37,319 --> 00:20:41,019 have another interview at 2:00, so we're 252 00:20:41,019 --> 00:20:44,483 going to have 3 more sections: the present 253 00:20:44,483 --> 00:20:46,488 the future, and the call to action. 254 00:20:46,488 --> 00:20:50,205 So just to pace yourself within those.--thank you 255 00:20:50,205 --> 00:20:53,126 okay so within the present, has the ADA 256 00:20:53,126 --> 00:20:55,157 made a difference? Tell us about your 257 00:20:55,157 --> 00:20:57,778 "aha" moment that told you that the ADA is 258 00:20:57,778 --> 00:20:59,753 or is not making a difference and to what 259 00:20:59,753 --> 00:21:02,923 extent based on your passions and areas of 260 00:21:02,923 --> 00:21:05,585 expertise, where do you see or not see the 261 00:21:05,585 --> 00:21:08,427 impact of the ADA? 262 00:21:08,427 --> 00:21:15,254 So the ADA has had a huge 263 00:21:15,254 --> 00:21:18,095 and sweeping impact 264 00:21:18,095 --> 00:21:23,157 and it's important for me 265 00:21:23,157 --> 00:21:26,575 to begin as I begin to talk 266 00:21:26,575 --> 00:21:30,530 about the present day as we're embarking 267 00:21:30,530 --> 00:21:35,405 on ADA 30 it's really important to start 268 00:21:35,405 --> 00:21:39,864 with how much things absolutely have 269 00:21:39,864 --> 00:21:47,398 changed, you know so certainly some of the 270 00:21:47,398 --> 00:21:50,652 architectural barrier removal efforts, 271 00:21:50,652 --> 00:21:54,865 some of the significant improvements 272 00:21:54,865 --> 00:22:00,542 in equally effective communication, 273 00:22:00,542 --> 00:22:04,902 some of the requirements around programs, 274 00:22:04,902 --> 00:22:13,254 you know all of those have significantly changed 275 00:22:13,254 --> 00:22:18,485 most--- can't even say most of the time--often 276 00:22:18,485 --> 00:22:22,299 there have been many really great initatives over 277 00:22:22,299 --> 00:22:30,868 the years but we've always had to maintain 278 00:22:30,868 --> 00:22:37,591 a relentless battle to not 279 00:22:37,591 --> 00:22:41,742 let anything slip, to not lose 280 00:22:41,742 --> 00:22:48,501 any sort of momentum towards accessibility, 281 00:22:48,501 --> 00:22:53,879 if we look away for a minute 282 00:22:53,879 --> 00:22:57,915 our rights will be swept away from us, 283 00:22:57,915 --> 00:23:01,637 and I can certainly talk about 284 00:23:01,637 --> 00:23:04,041 the very present day 285 00:23:04,041 --> 00:23:10,698 and what I have to say about where 286 00:23:10,698 --> 00:23:16,971 we are today is not great 287 00:23:16,971 --> 00:23:20,462 and so I do want to take a little more time 288 00:23:20,462 --> 00:23:27,922 to call out the significant progress; 289 00:23:27,922 --> 00:23:36,711 in so many aspects of daily life 290 00:23:36,711 --> 00:23:41,098 in which we can 291 00:23:41,098 --> 00:23:50,730 call out failures of ADA compliance, 292 00:23:50,730 --> 00:23:59,459 enforcement of the law but it is oftentimes 293 00:23:59,459 --> 00:24:04,098 in comparison to the examples of where 294 00:24:04,098 --> 00:24:07,111 it's working, so when transportation 295 00:24:07,111 --> 00:24:13,529 is not accessible, we're calling it out 296 00:24:13,529 --> 00:24:19,852 because we know the good and 297 00:24:19,852 --> 00:24:23,619 promising practices that have been in place 298 00:24:23,619 --> 00:24:28,585 for transportation accessiblity 299 00:24:28,585 --> 00:24:34,623 make the failures so much more egregious 300 00:24:34,623 --> 00:24:42,778 in housing, in employment, in the kinds of 301 00:24:42,778 --> 00:24:48,787 assistive devices that are available, 302 00:24:48,787 --> 00:24:55,849 the universal design of places and things 303 00:24:55,849 --> 00:25:09,303 all of that points to the examples of where we 304 00:25:09,303 --> 00:25:13,365 are getting it right and in stark contrast 305 00:25:13,365 --> 00:25:18,350 the areas where we egregiously getting it wrong 306 00:25:18,350 --> 00:25:33,901 and I half to say that just very recently I have 307 00:25:33,901 --> 00:25:38,291 led my organization's involvement in 308 00:25:38,291 --> 00:25:44,263 a petition to US Dept of Health and Human 309 00:25:44,263 --> 00:25:48,867 Services demanding that people with 310 00:25:48,867 --> 00:25:53,887 disabilities be immediately relocated 311 00:25:53,887 --> 00:25:58,211 out of nursing homes and other congregate 312 00:25:58,211 --> 00:26:04,017 settings due to the horific 313 00:26:04,017 --> 00:26:09,701 circumstances in those congregate 314 00:26:09,701 --> 00:26:13,787 settings due to covid-19 315 00:26:13,787 --> 00:26:23,290 and the failure to provide appropriate protections 316 00:26:23,290 --> 00:26:25,984 for people with disabilities 317 00:26:25,984 --> 00:26:29,614 in institutional settings 318 00:26:29,614 --> 00:26:36,462 the ADA back in 1990 319 00:26:36,462 --> 00:26:42,926 very clearly gave people with disabilityes 320 00:26:42,926 --> 00:26:48,025 significant rights, and 321 00:26:51,335 --> 00:27:06,484 even when challenged in 1999 the Olmstead case, 322 00:27:06,484 --> 00:27:14,254 which was a Georgia case, and two women 323 00:27:14,254 --> 00:27:19,108 who.. Lois and Elaine, Lois Curtiss 324 00:27:19,108 --> 00:27:20,909 an incredible woman I had the 325 00:27:20,909 --> 00:27:24,972 pleasure of being with on a number 326 00:27:24,972 --> 00:27:30,509 of occasions, the two of them 327 00:27:30,509 --> 00:27:35,974 demanded that they had a right to live in 328 00:27:35,974 --> 00:27:37,197 the most integrated setting 329 00:27:37,197 --> 00:27:39,589 appropriate to their needs, 330 00:27:39,589 --> 00:27:45,409 and the decision, the case went 331 00:27:45,409 --> 00:27:47,782 all the way to the Supreme Court 332 00:27:47,782 --> 00:27:54,533 and I was among those who 333 00:27:54,533 --> 00:27:58,629 slept outside the Supreme Court on the night 334 00:27:58,629 --> 00:28:02,474 before their case was heard 335 00:28:02,474 --> 00:28:04,077 and I was among 336 00:28:04,077 --> 00:28:07,834 the folks who celebrated out in front of 337 00:28:07,834 --> 00:28:12,031 the Supreme Court the day that desishon came 338 00:28:12,031 --> 00:28:15,755 down in favor of Lois and Elaine's right, 339 00:28:15,755 --> 00:28:20,026 and the rights of 1000s,10s of 1000's, 340 00:28:20,026 --> 00:28:24,028 millions of people with Disabilityes 341 00:28:24,028 --> 00:28:29,238 to live in the most integrated setting 342 00:28:29,238 --> 00:28:31,376 appropriate to their needs. 343 00:28:32,485 --> 00:28:36,994 Givin we are 21 years after that decision, 344 00:28:36,994 --> 00:28:42,520 yesterday the American Civil Liberties Union 345 00:28:42,520 --> 00:28:47,608 submitted a petition and the World Institute 346 00:28:47,608 --> 00:28:50,462 on Disability joined a number of other 347 00:28:50,462 --> 00:28:56,856 disability organizations in bringing that petition 348 00:28:56,856 --> 00:29:01,481 demanding that people with disabilities 349 00:29:01,481 --> 00:29:05,243 be immediately be relocated 350 00:29:05,243 --> 00:29:09,030 out of these congregate settings 351 00:29:09,030 --> 00:29:15,462 10s of 1000's of people have died in 352 00:29:15,462 --> 00:29:20,052 the last 100 days, the genocide 353 00:29:20,052 --> 00:29:23,662 of people with disabilities because of 354 00:29:23,662 --> 00:29:28,396 the failures of implementation of that 355 00:29:28,396 --> 00:29:33,949 Olmstead decision and the failures of our 356 00:29:33,949 --> 00:29:39,862 government to provide the kind of supports 357 00:29:39,862 --> 00:29:42,489 and services that enable 358 00:29:42,489 --> 00:29:44,502 people with disabilities 359 00:29:44,502 --> 00:29:49,008 to live safely and with the support they 360 00:29:49,008 --> 00:29:50,865 need in place in the community 361 00:29:50,865 --> 00:30:01,051 and, very infuriatingly our continued 362 00:30:01,051 --> 00:30:05,200 persistent calls for 363 00:30:05,200 --> 00:30:09,096 people with disabilities to be 364 00:30:09,096 --> 00:30:13,138 adequately served in these.. 365 00:30:14,114 --> 00:30:17,857 in disasters have been ignored, 366 00:30:17,857 --> 00:30:23,473 and the bottom line has been again over the 367 00:30:23,473 --> 00:30:28,608 last 100 days 10s of 1000's of people with 368 00:30:28,608 --> 00:30:31,278 disabilities have died. And when I was 369 00:30:31,278 --> 00:30:35,556 called on, saying that those were 370 00:30:35,556 --> 00:30:38,099 people with disabilities I have had 371 00:30:38,099 --> 00:30:41,364 conversations with a number of senior 372 00:30:41,364 --> 00:30:45,004 government officials who, like, why are 373 00:30:45,004 --> 00:30:48,125 you saying people with disabilities? 374 99:59:59,999 --> 99:59:59,999 and you know, these were old people with 375 99:59:59,999 --> 99:59:59,999 underlying conditions living in nursing 376 99:59:59,999 --> 99:59:59,999 homes and in long term care facilities. 377 99:59:59,999 --> 99:59:59,999 Well you don't go to a nursing home 378 99:59:59,999 --> 99:59:59,999 because you're old, you go to a nursing 379 99:59:59,999 --> 99:59:59,999 home because you have a disability and the 380 99:59:59,999 --> 99:59:59,999 supports and services you need to stay in 381 99:59:59,999 --> 99:59:59,999 the community have not been given to you. 382 99:59:59,999 --> 99:59:59,999 And the vast majority, some would say, all of 383 99:59:59,999 --> 99:59:59,999 those deaths in congregate settings are 384 99:59:59,999 --> 99:59:59,999 people with disabilities, most of them 385 99:59:59,999 --> 99:59:59,999 black and brown and people living in 386 99:59:59,999 --> 99:59:59,999 poverty. And the failures of Americans 387 99:59:59,999 --> 99:59:59,999 with Disabilities Act, the Olmstead 388 99:59:59,999 --> 99:59:59,999 decision, and our government's 389 99:59:59,999 --> 99:59:59,999 will to monitor and enforce this law 390 99:59:59,999 --> 99:59:59,999 and the rehabilitation act have a 391 99:59:59,999 --> 99:59:59,999 devastating impact on where we are today. 392 99:59:59,999 --> 99:59:59,999 And the death of many of our siblings. 393 99:59:59,999 --> 99:59:59,999 Without any end in sight. 394 99:59:59,999 --> 99:59:59,999 Thank you Marcie, Ok. So next on to the 395 99:59:59,999 --> 99:59:59,999 future, with the work that you've been 396 99:59:59,999 --> 99:59:59,999 doing you've seen a lot of progress 397 99:59:59,999 --> 99:59:59,999 and barriers. If you could pick one thing 398 99:59:59,999 --> 99:59:59,999 to change or that needs to occur to have 399 99:59:59,999 --> 99:59:59,999 access and equality--I know that's hard 400 99:59:59,999 --> 99:59:59,999 --one thing to have equality and access 401 99:59:59,999 --> 99:59:59,999 present in the lives of people with 402 99:59:59,999 --> 99:59:59,999 disabilities what would that be? 403 99:59:59,999 --> 99:59:59,999 The one thing that must happen: 404 99:59:59,999 --> 99:59:59,999 people with disabilities have civil rights 405 99:59:59,999 --> 99:59:59,999 protections by law and the one thing 406 99:59:59,999 --> 99:59:59,999 that must happen 407 99:59:59,999 --> 99:59:59,999 is that their rights are monitored and 408 99:59:59,999 --> 99:59:59,999 enforced without exception. Following 409 99:59:59,999 --> 99:59:59,999 the law is not enough, we need universal 410 99:59:59,999 --> 99:59:59,999 design to be the standard we need 411 99:59:59,999 --> 99:59:59,999 accessibility and accommodation 412 99:59:59,999 --> 99:59:59,999 to be readily available but we must have 413 99:59:59,999 --> 99:59:59,999 monitoring and enforcement. Every 414 99:59:59,999 --> 99:59:59,999 federal dollar is supposed to be spent in 415 99:59:59,999 --> 99:59:59,999 compliance with the rehabilitation act 416 99:59:59,999 --> 99:59:59,999 and between the Rehab Act and the ADA 417 99:59:59,999 --> 99:59:59,999 they require, their should be, no 418 99:59:59,999 --> 99:59:59,999 rue for those people with civil rights 419 99:59:59,999 --> 99:59:59,999 protections to be repeatedly denied 420 99:59:59,999 --> 99:59:59,999 and unable to fully participate 421 99:59:59,999 --> 99:59:59,999 in home and community life. Monitoring 422 99:59:59,999 --> 99:59:59,999 and enforcement must be the floor 423 99:59:59,999 --> 99:59:59,999 I have a ceiling but enforcing 424 99:59:59,999 --> 99:59:59,999 these civil rights laws is absolutely 425 99:59:59,999 --> 99:59:59,999 the floor. Thank you. What can we do? 426 99:59:59,999 --> 99:59:59,999 What can we as community members 427 99:59:59,999 --> 99:59:59,999 take right now? So what we can do right 428 99:59:59,999 --> 99:59:59,999 now is, you know, one of my favorite 429 99:59:59,999 --> 99:59:59,999 sayings, "never give up, never give in" 430 99:59:59,999 --> 99:59:59,999 another of my favorites, "nothing about us 431 99:59:59,999 --> 99:59:59,999 without us" we as disability community 432 99:59:59,999 --> 99:59:59,999 leaders need to stick together, we need to 433 99:59:59,999 --> 99:59:59,999 center our work around people who are 434 99:59:59,999 --> 99:59:59,999 multiply marginalized, excluded 435 99:59:59,999 --> 99:59:59,999 we need to be sure that we are not wasting 436 99:59:59,999 --> 99:59:59,999 our time with infighting and with 437 99:59:59,999 --> 99:59:59,999 a kind of divisive childish behavior that 438 99:59:59,999 --> 99:59:59,999 some folks are still stuck in engaging in 439 99:59:59,999 --> 99:59:59,999 we absolutely must reach a hand forward 440 99:59:59,999 --> 99:59:59,999 reach a hand back stick together 441 99:59:59,999 --> 99:59:59,999 and continue relentlessly to work 442 99:59:59,999 --> 99:59:59,999 towards the realization of the goal 443 99:59:59,999 --> 99:59:59,999 that the ADA was written around and so 444 99:59:59,999 --> 99:59:59,999 many of our siblings have fought so very 445 99:59:59,999 --> 99:59:59,999 hard for. We've lost a bunch of those 446 99:59:59,999 --> 99:59:59,999 hardworking visionary leaders; many of them 447 99:59:59,999 --> 99:59:59,999 have been lost in recent years, some of them 448 99:59:59,999 --> 99:59:59,999 have been lost along the way, we have an 449 99:59:59,999 --> 99:59:59,999 incredible legacy to care for, we have 450 99:59:59,999 --> 99:59:59,999 huge opportunities to work towards 451 99:59:59,999 --> 99:59:59,999 technology has the potential for leveling 452 99:59:59,999 --> 99:59:59,999 the playing field if in fact people have 453 99:59:59,999 --> 99:59:59,999 real access and the World Institute on 454 99:59:59,999 --> 99:59:59,999 Disability and our commitment to 455 99:59:59,999 --> 99:59:59,999 work in partnership with other 456 99:59:59,999 --> 99:59:59,999 disability lead organizations and 457 99:59:59,999 --> 99:59:59,999 our allies to make communities 458 99:59:59,999 --> 99:59:59,999 stronger, more resilient for the whole 459 99:59:59,999 --> 99:59:59,999 community because when we get it right 460 99:59:59,999 --> 99:59:59,999 for people with disabilities I think 461 99:59:59,999 --> 99:59:59,999 the whole community not only benefits 462 99:59:59,999 --> 99:59:59,999 but is stronger for our leadership, our 463 99:59:59,999 --> 99:59:59,999 contributions, our expertise in 464 99:59:59,999 --> 99:59:59,999 what it takes to make daily life work for 465 99:59:59,999 --> 99:59:59,999 everybody. Excellent, thank you.