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 --> 00:09:22,033 opportunity to do-- or I had an obligation 112 00:09:22,033 --> 00:09:24,973 to do community service and I started off 113 99:59:59,999 --> 99:59:59,999 This was the year of the first Earth Day 114 99:59:59,999 --> 99:59:59,999 and I started crushing glass at the local 115 99:59:59,999 --> 99:59:59,999 recycling center and it turned out that 116 99:59:59,999 --> 99:59:59,999 that was really boring but lots of my 117 99:59:59,999 --> 99:59:59,999 classmates were volunteering at a state 118 99:59:59,999 --> 99:59:59,999 institution for people with disabilities 119 99:59:59,999 --> 99:59:59,999 and I joined them once a week and looking 120 99:59:59,999 --> 99:59:59,999 back on it again, it was pretty shocking 121 99:59:59,999 --> 99:59:59,999 that at 13 years old, I was assigned as 122 99:59:59,999 --> 99:59:59,999 the teacher of a classroom of 30 adults 123 99:59:59,999 --> 99:59:59,999 who had never had the opportunity to 124 99:59:59,999 --> 99:59:59,999 really attend school and they now had a 125 99:59:59,999 --> 99:59:59,999 13-year old teacher once a week. Needless 126 99:59:59,999 --> 99:59:59,999 to say, I learned way more from them than 127 99:59:59,999 --> 99:59:59,999 they learned from me, but we had a lot of 128 99:59:59,999 --> 99:59:59,999 fun and many of them became friends very 129 99:59:59,999 --> 99:59:59,999 much along the rest of my path and 130 99:59:59,999 --> 99:59:59,999 unfortunately, some of them are no longer 131 99:59:59,999 --> 99:59:59,999 alive but there are a couple of people who 132 99:59:59,999 --> 99:59:59,999 are still very much a part of my life and 133 99:59:59,999 --> 99:59:59,999 fortunately, they were successful in 134 99:59:59,999 --> 99:59:59,999 liberating themselves from that state 135 99:59:59,999 --> 99:59:59,999 institution. And so they and many others 136 99:59:59,999 --> 99:59:59,999 taught me a lot. But the real pivotal 137 99:59:59,999 --> 99:59:59,999 experience for me, I was working back at 138 99:59:59,999 --> 99:59:59,999 that state institution, it was my first 139 99:59:59,999 --> 99:59:59,999 paid job in disability services and I had 140 99:59:59,999 --> 99:59:59,999 been hired to work in what was called a 141 99:59:59,999 --> 99:59:59,999 "cottage" for 40 women with intellectual 142 99:59:59,999 --> 99:59:59,999 disabilites and this "cottage" was on 143 99:59:59,999 --> 99:59:59,999 beautiful grounds but the women lived in a 144 99:59:59,999 --> 99:59:59,999 building 20 on one side, 20 on the other 145 99:59:59,999 --> 99:59:59,999 side and my responsibilities included 146 99:59:59,999 --> 99:59:59,999 assisting them in bathing and getting 147 99:59:59,999 --> 99:59:59,999 dressed and in eating. Many of them were 148 99:59:59,999 --> 99:59:59,999 unable to feed themselves. Some because 149 99:59:59,999 --> 99:59:59,999 they had never been given the opportunity, 150 99:59:59,999 --> 99:59:59,999 others because of their physical 151 99:59:59,999 --> 99:59:59,999 disability and a lack of any sort of 152 99:59:59,999 --> 99:59:59,999 adapted utensils or other equipment. 153 99:59:59,999 --> 99:59:59,999 So as I was feeding people, the sort of 154 99:59:59,999 --> 99:59:59,999 routine was the same every day. A plate 155 99:59:59,999 --> 99:59:59,999 would come out, and there would be 3 156 99:59:59,999 --> 99:59:59,999 mounds of food on the plate. One mound was 157 99:59:59,999 --> 99:59:59,999 always brown, one mound was always 158 99:59:59,999 --> 99:59:59,999 green, and one mount was always white. 159 99:59:59,999 --> 99:59:59,999 You know the meat, the vegetable, and the 160 99:59:59,999 --> 99:59:59,999 starch. And I know that people like to 161 99:59:59,999 --> 99:59:59,999 eat their meals in different ways. There 162 99:59:59,999 --> 99:59:59,999 would also be a dessert every day, jello or 163 99:59:59,999 --> 99:59:59,999 ice cream, again always in a mound. 164 99:59:59,999 --> 99:59:59,999 And so I would spend time with each of the 165 99:59:59,999 --> 99:59:59,999 individuals who were having their meal 166 99:59:59,999 --> 99:59:59,999 and would sort of be working together, 167 99:59:59,999 --> 99:59:59,999 trying to figure out if they preferred to 168 99:59:59,999 --> 99:59:59,999 have, to eat their dessert first? Some 169 99:59:59,999 --> 99:59:59,999 people liked to do that. Did they prefer a 170 99:59:59,999 --> 99:59:59,999 little bit of the brown and a little bit 171 99:59:59,999 --> 99:59:59,999 of the white all on the same fork? Did 172 99:59:59,999 --> 99:59:59,999 they not want their food touching? You 173 99:59:59,999 --> 99:59:59,999 know and I would sort of work back and 174 99:59:59,999 --> 99:59:59,999 forth with them to try and figure out what 175 99:59:59,999 --> 99:59:59,999 their preference was and I got in trouble 176 99:59:59,999 --> 99:59:59,999 because I was spending too much time 177 99:59:59,999 --> 99:59:59,999 and ultimately, I was moved to a different 178 99:59:59,999 --> 99:59:59,999 position because I was taking too much 179 99:59:59,999 --> 99:59:59,999 time giving people an opportunity to make 180 99:59:59,999 --> 99:59:59,999 some choices and express some preferences. 181 99:59:59,999 --> 99:59:59,999 So that was extremely pivotal and in many 182 99:59:59,999 --> 99:59:59,999 ways you know, those early early 183 99:59:59,999 --> 99:59:59,999 experiences have really totally driven who 184 99:59:59,999 --> 99:59:59,999 I am and what I believe all these years 185 99:59:59,999 --> 99:59:59,999 later. In terms of the Americans with 186 99:59:59,999 --> 99:59:59,999 Disability Act, I had a very close 187 99:59:59,999 --> 99:59:59,999 personal experience with what was then 188 99:59:59,999 --> 99:59:59,999 called "public law 94142" the Education of 189 99:59:59,999 --> 99:59:59,999 All Handicapped Act, later on renamed 190 99:59:59,999 --> 99:59:59,999 Individuals with Disabilities Act, IDEA 191 99:59:59,999 --> 99:59:59,999 and I had a very personal family 192 99:59:59,999 --> 99:59:59,999 experience with IDEA and became aware of 193 99:59:59,999 --> 99:59:59,999 legislative initiatives and how the IDEA 194 99:59:59,999 --> 99:59:59,999 had just been passed. And then I started 195 99:59:59,999 --> 99:59:59,999 to become more aware of the work being 196 99:59:59,999 --> 99:59:59,999 done. And this was back in the 70s and 197 99:59:59,999 --> 99:59:59,999 work being done of other legislative 198 99:59:59,999 --> 99:59:59,999 initiatives and the 504, the passage of 199 99:59:59,999 --> 99:59:59,999 the Rehabilitation Act, followed by the 200 99:59:59,999 --> 99:59:59,999 504 sit-in in San Francisco to get the 201 99:59:59,999 --> 99:59:59,999 regulations put in place. That really 202 99:59:59,999 --> 99:59:59,999 caught my attention and between the little 203 99:59:59,999 --> 99:59:59,999 bits of information I was getting there 204 99:59:59,999 --> 99:59:59,999 and the work I was doing and then 205 99:59:59,999 --> 99:59:59,999 becoming a full-time advocate going to 206 99:59:59,999 --> 99:59:59,999 work for an independent living center in 207 99:59:59,999 --> 99:59:59,999 1982, I then became extremely involved 208 99:59:59,999 --> 99:59:59,999 in systems change and how to develop 209 99:59:59,999 --> 99:59:59,999 policy, how to organize, how to support 210 99:59:59,999 --> 99:59:59,999 the rights and voices and preferences of 211 99:59:59,999 --> 99:59:59,999 other people and because I lived in 212 99:59:59,999 --> 99:59:59,999 Connecticut and the original author of 213 99:59:59,999 --> 99:59:59,999 the Americans with Disability Act, the 214 99:59:59,999 --> 99:59:59,999 first time that it was introduced was 215 99:59:59,999 --> 99:59:59,999 Senator Weicker of Connecticut, and 216 99:59:59,999 --> 99:59:59,999 Senator Weicker, father of a great young 217 99:59:59,999 --> 99:59:59,999 man who had Down Syndrome, Senator 218 99:59:59,999 --> 99:59:59,999 Weicker was very involved with the 219 99:59:59,999 --> 99:59:59,999 disability advocacy community in 220 99:59:59,999 --> 99:59:59,999 Connecticut, and I then had the incredible 221 99:59:59,999 --> 99:59:59,999 opportunity to go to Boston and testify 222 99:59:59,999 --> 99:59:59,999 at one of the Congress major hearings-- 223 99:59:59,999 --> 99:59:59,999 field hearings on the Americans with 224 99:59:59,999 --> 99:59:59,999 Disability Act. So you know of course the 225 99:59:59,999 --> 99:59:59,999 first time around, the bill didn't pass 226 99:59:59,999 --> 99:59:59,999 but we were revved up and in the 227 99:59:59,999 --> 99:59:59,999 passage of the ADA, in the period in which 228 99:59:59,999 --> 99:59:59,999 once the bill was re-introduced and votes 229 99:59:59,999 --> 99:59:59,999 were organizing, I remember that we had 230 99:59:59,999 --> 99:59:59,999 stacks and stacks and stacks of bright 231 99:59:59,999 --> 99:59:59,999 pink postcards and we were organizing 232 99:59:59,999 --> 99:59:59,999 folks across the states to develop, to 233 99:59:59,999 --> 99:59:59,999 sign those postcards supporting the 234 99:59:59,999 --> 99:59:59,999 passage of the ADA and then you know this 235 99:59:59,999 --> 99:59:59,999 was sort of a wonderful but maybe 236 99:59:59,999 --> 99:59:59,999 misleading experience, we actually were 237 99:59:59,999 --> 99:59:59,999 successful. The bill got passed! And I 238 99:59:59,999 --> 99:59:59,999 remember thinking "Oh, well this wasn't 239 99:59:59,999 --> 99:59:59,999 that hard. I mean, you know, we had to go 240 99:59:59,999 --> 99:59:59,999 at it twice, but well this wasn't so hard. 241 99:59:59,999 --> 99:59:59,999 Let's take on some more legislation!" And 242 99:59:59,999 --> 99:59:59,999 it turns out that it wasn't as easy 243 99:59:59,999 --> 99:59:59,999 as it looked to me. It wasn't just about 244 99:59:59,999 --> 99:59:59,999 hot pink postcards and meetings and 245 99:59:59,999 --> 99:59:59,999 marches--that all helped but even that 246 99:59:59,999 --> 99:59:59,999 sometimes these days, it doesn't seem to 247 99:59:59,999 --> 99:59:59,999 be enough to change policy. So that is my 248 99:59:59,999 --> 99:59:59,999 earliest journey to 1990. 249 99:59:59,999 --> 99:59:59,999 Thank you Marcie. Okay we're going to the 250 99:59:59,999 --> 99:59:59,999 present now. So just so you know, I do 251 99:59:59,999 --> 99:59:59,999 have another interview at 2:00, so we're 252 99:59:59,999 --> 99:59:59,999 going to have 3 more sections: the present 253 99:59:59,999 --> 99:59:59,999 the future, and the call to action. So 254 99:59:59,999 --> 99:59:59,999 just to pace yourself within the--thank 255 99:59:59,999 --> 99:59:59,999 you. So within the present, has the ADA 256 99:59:59,999 --> 99:59:59,999 made a difference? Tell us about your 257 99:59:59,999 --> 99:59:59,999 "aha" moment that told you that the ADA is 258 99:59:59,999 --> 99:59:59,999 or is not making a difference and to what 259 99:59:59,999 --> 99:59:59,999 extent based on your passions and areas of 260 99:59:59,999 --> 99:59:59,999 expertise, where do you see or not see the 261 99:59:59,999 --> 99:59:59,999 impact of the ADA? 262 99:59:59,999 --> 99:59:59,999 So the ADA has had a huge 263 99:59:59,999 --> 99:59:59,999 and sweeping impact 264 99:59:59,999 --> 99:59:59,999 and it's important for me 265 99:59:59,999 --> 99:59:59,999 as I begin to talk 266 99:59:59,999 --> 99:59:59,999 about the present day as we're embarking 267 99:59:59,999 --> 99:59:59,999 on ADA 30 it's really important to start 268 99:59:59,999 --> 99:59:59,999 with how much things absolutely have 269 99:59:59,999 --> 99:59:59,999 changed, certainly some of the 270 99:59:59,999 --> 99:59:59,999 architectural barrier removal efforts, 271 99:59:59,999 --> 99:59:59,999 some of the significant improvements 272 99:59:59,999 --> 99:59:59,999 in equally effective communication, 273 99:59:59,999 --> 99:59:59,999 some of the requirements around programs, 274 99:59:59,999 --> 99:59:59,999 all of those have significantly changed 275 99:59:59,999 --> 99:59:59,999 most often can't even say most--often 276 99:59:59,999 --> 99:59:59,999 there's been really great initatives over 277 99:59:59,999 --> 99:59:59,999 the years but we've always had to maintain 278 99:59:59,999 --> 99:59:59,999 a relentless battle to not 279 99:59:59,999 --> 99:59:59,999 let anything slip, to not let 280 99:59:59,999 --> 99:59:59,999 anything lose any sort of momentum 281 99:59:59,999 --> 99:59:59,999 towards accessibility, 282 99:59:59,999 --> 99:59:59,999 if we look away for a minute 283 99:59:59,999 --> 99:59:59,999 our rights will be swept away from us, 284 99:59:59,999 --> 99:59:59,999 and I can certainly talk about 285 99:59:59,999 --> 99:59:59,999 the very present day 286 99:59:59,999 --> 99:59:59,999 and what I have to say about where 287 99:59:59,999 --> 99:59:59,999 we are today is not great 288 99:59:59,999 --> 99:59:59,999 and I do want to take a little more time 289 99:59:59,999 --> 99:59:59,999 to call out the significant progress; 290 99:59:59,999 --> 99:59:59,999 in so many aspects of daily life 291 99:59:59,999 --> 99:59:59,999 in which we can 292 99:59:59,999 --> 99:59:59,999 call out failures of ADA compliance, 293 99:59:59,999 --> 99:59:59,999 enforcement of the law but oftentimes 294 99:59:59,999 --> 99:59:59,999 in comparison to the examples of where 295 99:59:59,999 --> 99:59:59,999 it's working, so when transportation 296 99:59:59,999 --> 99:59:59,999 is not accessible, we're calling it out 297 99:59:59,999 --> 99:59:59,999 because we know the good and promising 298 99:59:59,999 --> 99:59:59,999 practices that have been in place 299 99:59:59,999 --> 99:59:59,999 for transportation accessiblity 300 99:59:59,999 --> 99:59:59,999 make the failures so much more egregious 301 99:59:59,999 --> 99:59:59,999 in housing, in employment, in the kinds of 302 99:59:59,999 --> 99:59:59,999 assistive devices that are available, the 303 99:59:59,999 --> 99:59:59,999 universal design of places and things 304 99:59:59,999 --> 99:59:59,999 all of that points to examples of where we 305 99:59:59,999 --> 99:59:59,999 are getting it right and in stark contrast 306 99:59:59,999 --> 99:59:59,999 where the areas where we are 307 99:59:59,999 --> 99:59:59,999 egregiously getting it wrong 308 99:59:59,999 --> 99:59:59,999 and just very recently I have led 309 99:59:59,999 --> 99:59:59,999 my organization's involvement in 310 99:59:59,999 --> 99:59:59,999 a petition to US Dept of Health and Human 311 99:59:59,999 --> 99:59:59,999 Services demanding that people with 312 99:59:59,999 --> 99:59:59,999 disabilities be immediately relocated 313 99:59:59,999 --> 99:59:59,999 out of nursing homes and other congregate 314 99:59:59,999 --> 99:59:59,999 settings due to the 315 99:59:59,999 --> 99:59:59,999 horrific circumstances in those congregate 316 99:59:59,999 --> 99:59:59,999 settings due to covid-19 317 99:59:59,999 --> 99:59:59,999 and the failure to provide appropriate protections 318 99:59:59,999 --> 99:59:59,999 for people with disabilities 319 99:59:59,999 --> 99:59:59,999 in institutional settings 320 99:59:59,999 --> 99:59:59,999 the ADA back in 1990 321 99:59:59,999 --> 99:59:59,999 very clearly gave people with 322 99:59:59,999 --> 99:59:59,999 disabilities significant rights, and 323 99:59:59,999 --> 99:59:59,999 even when challenged in 1999 the Olmstead 324 99:59:59,999 --> 99:59:59,999 case, which was a Georgia case, two women 325 99:59:59,999 --> 99:59:59,999 Lois and Elaine, Lois Curtiss 326 99:59:59,999 --> 99:59:59,999 an incredible woman I had the 327 99:59:59,999 --> 99:59:59,999 pleasure of being with on a number 328 99:59:59,999 --> 99:59:59,999 of occasions, the two of them 329 99:59:59,999 --> 99:59:59,999 demanded that they had a right to live in 330 99:59:59,999 --> 99:59:59,999 the most integrated setting 331 99:59:59,999 --> 99:59:59,999 most appropriate to their needs, 332 99:59:59,999 --> 99:59:59,999 and the decision, the case went 333 99:59:59,999 --> 99:59:59,999 all the way to the Supreme Court 334 99:59:59,999 --> 99:59:59,999 and I was among those who 335 99:59:59,999 --> 99:59:59,999 slept outside the Supreme Court the night 336 99:59:59,999 --> 99:59:59,999 before their case was heard 337 99:59:59,999 --> 99:59:59,999 and I was among 338 99:59:59,999 --> 99:59:59,999 the folks who celebrated out in front of 339 99:59:59,999 --> 99:59:59,999 the Supreme Court the day that case came 340 99:59:59,999 --> 99:59:59,999 down in favor of Lois and Elaine's right, 341 99:59:59,999 --> 99:59:59,999 and the rights of 10s of 1000's, 342 99:59:59,999 --> 99:59:59,999 millions of people with 343 99:59:59,999 --> 99:59:59,999 disabilities to live in the most 344 99:59:59,999 --> 99:59:59,999 integrated setting 345 99:59:59,999 --> 99:59:59,999 appropriate to their needs. Given 346 99:59:59,999 --> 99:59:59,999 we are 21 years after that decision, 347 99:59:59,999 --> 99:59:59,999 yesterday American Civil Liberties Union 348 99:59:59,999 --> 99:59:59,999 submitted 349 99:59:59,999 --> 99:59:59,999 a petition and the World Institute of 350 99:59:59,999 --> 99:59:59,999 Disability joined a number of 351 99:59:59,999 --> 99:59:59,999 other disability 352 99:59:59,999 --> 99:59:59,999 organizations in bringing that petition 353 99:59:59,999 --> 99:59:59,999 demanding that people with disabilities 354 99:59:59,999 --> 99:59:59,999 immediately be relocated 355 99:59:59,999 --> 99:59:59,999 out of these congregate settings 356 99:59:59,999 --> 99:59:59,999 10s of 1000's of people have died in 357 99:59:59,999 --> 99:59:59,999 the last 100 days, the genocide 358 99:59:59,999 --> 99:59:59,999 of people with disabilities because of 359 99:59:59,999 --> 99:59:59,999 the failures of implementation of that 360 99:59:59,999 --> 99:59:59,999 Olmstead decision and the failures of our 361 99:59:59,999 --> 99:59:59,999 government to provide the kind of supports 362 99:59:59,999 --> 99:59:59,999 and services that enable 363 99:59:59,999 --> 99:59:59,999 people with disabilities 364 99:59:59,999 --> 99:59:59,999 to live safely and with the support they 365 99:59:59,999 --> 99:59:59,999 need in place in the community 366 99:59:59,999 --> 99:59:59,999 and, very infuriatingly our consistently 367 99:59:59,999 --> 99:59:59,999 persistent calls for 368 99:59:59,999 --> 99:59:59,999 people with disabilities to be 369 99:59:59,999 --> 99:59:59,999 adequately served in these, in these 370 99:59:59,999 --> 99:59:59,999 disasters have been ignored, and again 371 99:59:59,999 --> 99:59:59,999 the bottom line has been that the last 100 372 99:59:59,999 --> 99:59:59,999 days 10s of 1000's of people with 373 99:59:59,999 --> 99:59:59,999 disabilities have died. And when I was 374 99:59:59,999 --> 99:59:59,999 called on, saying that those were 375 99:59:59,999 --> 99:59:59,999 people with disabilities I have had 376 99:59:59,999 --> 99:59:59,999 conversations with a number of senior 377 99:59:59,999 --> 99:59:59,999 government officials who, like, why are 378 99:59:59,999 --> 99:59:59,999 you saying people with disabilities? And 379 99:59:59,999 --> 99:59:59,999 you know, these were old people with 380 99:59:59,999 --> 99:59:59,999 underlying conditions living in nursing 381 99:59:59,999 --> 99:59:59,999 homes and in long term care facilities. 382 99:59:59,999 --> 99:59:59,999 Well you don't go to a nursing home 383 99:59:59,999 --> 99:59:59,999 because you're old, you go to a nursing 384 99:59:59,999 --> 99:59:59,999 home because you have a disability and the 385 99:59:59,999 --> 99:59:59,999 supports and services you need to stay in 386 99:59:59,999 --> 99:59:59,999 the community have not been given to you. 387 99:59:59,999 --> 99:59:59,999 And the vast majority, some would say, all of 388 99:59:59,999 --> 99:59:59,999 those deaths in congregate settings are 389 99:59:59,999 --> 99:59:59,999 people with disabilities, most of them 390 99:59:59,999 --> 99:59:59,999 black and brown and people living in 391 99:59:59,999 --> 99:59:59,999 poverty. And the failures of Americans 392 99:59:59,999 --> 99:59:59,999 with Disabilities Act, the Olmstead 393 99:59:59,999 --> 99:59:59,999 decision, and our government's 394 99:59:59,999 --> 99:59:59,999 will to monitor and enforce this law 395 99:59:59,999 --> 99:59:59,999 and the rehabilitation act have a 396 99:59:59,999 --> 99:59:59,999 devastating impact on where we are today. 397 99:59:59,999 --> 99:59:59,999 And the death of many of our siblings. 398 99:59:59,999 --> 99:59:59,999 Without any end in sight. 399 99:59:59,999 --> 99:59:59,999 Thank you Marcie, Ok. So next on to the 400 99:59:59,999 --> 99:59:59,999 future, with the work that you've been 401 99:59:59,999 --> 99:59:59,999 doing you've seen a lot of progress 402 99:59:59,999 --> 99:59:59,999 and barriers. If you could pick one thing 403 99:59:59,999 --> 99:59:59,999 to change or that needs to occur to have 404 99:59:59,999 --> 99:59:59,999 access and equality--I know that's hard 405 99:59:59,999 --> 99:59:59,999 --one thing to have equality and access 406 99:59:59,999 --> 99:59:59,999 present in the lives of people with 407 99:59:59,999 --> 99:59:59,999 disabilities what would that be? 408 99:59:59,999 --> 99:59:59,999 The one thing that must happen: 409 99:59:59,999 --> 99:59:59,999 people with disabilities have civil rights 410 99:59:59,999 --> 99:59:59,999 protections by law and the one thing 411 99:59:59,999 --> 99:59:59,999 that must happen 412 99:59:59,999 --> 99:59:59,999 is that their rights are monitored and 413 99:59:59,999 --> 99:59:59,999 enforced without exception. Following 414 99:59:59,999 --> 99:59:59,999 the law is not enough, we need universal 415 99:59:59,999 --> 99:59:59,999 design to be the standard we need 416 99:59:59,999 --> 99:59:59,999 accessibility and accommodation 417 99:59:59,999 --> 99:59:59,999 to be readily available but we must have 418 99:59:59,999 --> 99:59:59,999 monitoring and enforcement. Every 419 99:59:59,999 --> 99:59:59,999 federal dollar is supposed to be spent in 420 99:59:59,999 --> 99:59:59,999 compliance with the rehabilitation act 421 99:59:59,999 --> 99:59:59,999 and between the Rehab Act and the ADA 422 99:59:59,999 --> 99:59:59,999 they require, their should be, no 423 99:59:59,999 --> 99:59:59,999 rue for those people with civil rights 424 99:59:59,999 --> 99:59:59,999 protections to be repeatedly denied 425 99:59:59,999 --> 99:59:59,999 and unable to fully participate 426 99:59:59,999 --> 99:59:59,999 in home and community life. Monitoring 427 99:59:59,999 --> 99:59:59,999 and enforcement must be the floor 428 99:59:59,999 --> 99:59:59,999 I have a ceiling but enforcing 429 99:59:59,999 --> 99:59:59,999 these civil rights laws is absolutely 430 99:59:59,999 --> 99:59:59,999 the floor. Thank you. What can we do? 431 99:59:59,999 --> 99:59:59,999 What can we as community members 432 99:59:59,999 --> 99:59:59,999 take right now? So what we can do right 433 99:59:59,999 --> 99:59:59,999 now is, you know, one of my favorite 434 99:59:59,999 --> 99:59:59,999 sayings, "never give up, never give in" 435 99:59:59,999 --> 99:59:59,999 another of my favorites, "nothing about us 436 99:59:59,999 --> 99:59:59,999 without us" we as disability community 437 99:59:59,999 --> 99:59:59,999 leaders need to stick together, we need to 438 99:59:59,999 --> 99:59:59,999 center our work around people who are 439 99:59:59,999 --> 99:59:59,999 multiply marginalized, excluded 440 99:59:59,999 --> 99:59:59,999 we need to be sure that we are not wasting 441 99:59:59,999 --> 99:59:59,999 our time with infighting and with 442 99:59:59,999 --> 99:59:59,999 a kind of divisive childish behavior that 443 99:59:59,999 --> 99:59:59,999 some folks are still stuck in engaging in 444 99:59:59,999 --> 99:59:59,999 we absolutely must reach a hand forward 445 99:59:59,999 --> 99:59:59,999 reach a hand back stick together 446 99:59:59,999 --> 99:59:59,999 and continue relentlessly to work 447 99:59:59,999 --> 99:59:59,999 towards the realization of the goal 448 99:59:59,999 --> 99:59:59,999 that the ADA was written around and so 449 99:59:59,999 --> 99:59:59,999 many of our siblings have fought so very 450 99:59:59,999 --> 99:59:59,999 hard for. We've lost a bunch of those 451 99:59:59,999 --> 99:59:59,999 hardworking visionary leaders; many of them 452 99:59:59,999 --> 99:59:59,999 have been lost in recent years, some of them 453 99:59:59,999 --> 99:59:59,999 have been lost along the way, we have an 454 99:59:59,999 --> 99:59:59,999 incredible legacy to care for, we have 455 99:59:59,999 --> 99:59:59,999 huge opportunities to work towards 456 99:59:59,999 --> 99:59:59,999 technology has the potential for leveling 457 99:59:59,999 --> 99:59:59,999 the playing field if in fact people have 458 99:59:59,999 --> 99:59:59,999 real access and the World Institute on 459 99:59:59,999 --> 99:59:59,999 Disability and our commitment to 460 99:59:59,999 --> 99:59:59,999 work in partnership with other 461 99:59:59,999 --> 99:59:59,999 disability lead organizations and 462 99:59:59,999 --> 99:59:59,999 our allies to make communities 463 99:59:59,999 --> 99:59:59,999 stronger, more resilient for the whole 464 99:59:59,999 --> 99:59:59,999 community because when we get it right 465 99:59:59,999 --> 99:59:59,999 for people with disabilities I think 466 99:59:59,999 --> 99:59:59,999 the whole community not only benefits 467 99:59:59,999 --> 99:59:59,999 but is stronger for our leadership, our 468 99:59:59,999 --> 99:59:59,999 contributions, our expertise in 469 99:59:59,999 --> 99:59:59,999 what it takes to make daily life work for 470 99:59:59,999 --> 99:59:59,999 everybody. Excellent, thank you.