1 00:00:00,322 --> 00:00:03,582 You'll see in the corner the record button 2 00:00:04,059 --> 00:00:06,079 So you should see that it's recording now, 3 00:00:06,379 --> 00:00:07,140 and I am going to mute myself 4 00:00:07,140 --> 00:00:08,820 and you'll go ahead and do your intro. 5 00:00:08,864 --> 00:00:09,574 Thank you Marcie. 6 00:00:14,104 --> 00:00:16,044 Hi there, I'm Marcie Roth 7 00:00:16,552 --> 00:00:22,620 And I have been working in disability rights 8 00:00:22,872 --> 00:00:26,392 For my whole adult life, 9 00:00:26,405 --> 00:00:31,641 And actually, since I was a freshman in high school 10 00:00:32,347 --> 00:00:42,425 I am currently the executive director and CEO of the World Institute on Disability 11 00:00:42,817 --> 00:00:53,167 And I have been working over the years in services 12 00:00:53,167 --> 00:00:59,397 for people living in residential programs early 13 00:00:59,397 --> 00:01:04,537 in my career with people in, 14 00:01:06,225 --> 00:01:08,035 Children in school settings, 15 00:01:10,322 --> 00:01:14,322 people in vocational rehabilitation, 16 00:01:14,686 --> 00:01:22,917 and then people in community living environments, 17 00:01:23,417 --> 00:01:29,837 then along the way, I became very involved in disability rights 18 00:01:30,667 --> 00:01:40,857 and very involved in the early days of advocacy 19 00:01:40,857 --> 00:01:44,857 before the ADA was introduced. 20 00:01:46,191 --> 00:01:54,651 And then I worked for disability advocacy organizations almost ever since. 21 00:01:56,000 --> 00:01:58,120 In addition to my own disability, 22 00:01:58,120 --> 00:02:03,160 I'm also the parent of two now adults with 23 00:02:03,160 --> 00:02:08,610 disabilities. My husband also has a disability, 24 00:02:09,059 --> 00:02:17,219 and much of my family also happen to be people with disabilities 25 00:02:17,219 --> 00:02:27,444 so disability rights is just a part of everything I am and most everything I do. 26 00:02:27,998 --> 00:02:41,318 I did spend from 2001 and onward focusing very much 27 00:02:41,318 --> 00:02:44,118 on what happens for people with disabilities 28 00:02:44,582 --> 00:02:46,772 before, during, and after disasters. 29 00:02:47,327 --> 00:02:54,288 And that's been a real particular laser focus of mine ever since, 30 00:02:55,184 --> 00:02:57,424 and in fact, I've had the opportunity 31 00:02:57,948 --> 00:03:01,948 as an appointee in the Obama administration 32 00:03:02,472 --> 00:03:08,160 to spend just about 8 years at FEMA, 33 00:03:09,231 --> 00:03:13,623 establishing FEMA's Office of Disability Integration Coordination, 34 00:03:14,124 --> 00:03:23,140 and building a cadre of disability experts 35 00:03:23,371 --> 00:03:27,191 focusing on supporting governors 36 00:03:27,283 --> 00:03:34,732 and emergency managers and most particularly 37 00:03:34,732 --> 00:03:38,732 engaging people with disabilities and disability organizations 38 00:03:39,481 --> 00:03:42,320 in emergency preparedness 39 00:03:42,680 --> 00:03:46,680 and throughout disaster response recover and mitigation. 40 00:03:47,672 --> 00:03:54,002 So one last piece since I've been with 41 00:03:54,002 --> 00:03:59,152 the World Institute on Disabilities since last September, 42 00:04:00,558 --> 00:04:06,555 my ongoing focus on global disability rights 43 00:04:06,555 --> 00:04:10,555 has really been something that I've had 44 00:04:10,946 --> 00:04:15,226 much more opportunity to be actively 45 00:04:15,552 --> 00:04:25,612 involved in and I have spent the time since joining 46 00:04:25,612 --> 00:04:32,131 with building a strategic planning process 47 00:04:32,479 --> 00:04:42,629 and supporting the organization to establish new priorities 48 00:04:44,255 --> 00:04:46,625 taking a look at the organizations mission 49 00:04:47,107 --> 00:04:53,947 and very recently establishing four particular areas of focus 50 00:04:54,173 --> 00:04:57,553 for the organization as we move forward. 51 00:04:59,294 --> 00:05:02,034 Thank you Marcie. Excellent, okay 52 00:05:02,088 --> 00:05:06,318 I apologize that my neighbor is chipping a lot of brush today, 53 00:05:06,318 --> 00:05:09,058 so it's making extra sound whenever I unmute 54 00:05:09,058 --> 00:05:12,338 but don't worry, it won't interfere with your recording. 55 00:05:12,890 --> 00:05:15,880 Okay, so the first question is about the past. 56 00:05:15,880 --> 00:05:18,580 So tell your first memory realizing that there were 57 00:05:18,580 --> 00:05:23,020 accessibility issues, discrimination, or lack of inclusion. 58 00:05:23,435 --> 00:05:25,265 What is your personal story or connection 59 00:05:25,265 --> 00:05:27,611 to the American's with Disabilities Act? 60 00:05:27,791 --> 00:05:31,470 What do you remember about the day that it was signed, if applicable? 61 00:05:31,737 --> 00:05:35,007 And what was the impact on you and on others? 62 00:05:35,007 --> 00:05:38,657 Remember to tap something that the camera shifts to you 63 00:05:38,723 --> 00:05:42,723 before you start. 64 00:05:44,715 --> 00:05:55,435 I first became aware of disability at a very young age. 65 00:05:55,537 --> 00:06:01,887 I had a best friend in first grade, his name was Gregory, 66 00:06:02,407 --> 00:06:09,637 and he and I were just wonderful friends 67 00:06:09,637 --> 00:06:12,747 We spent a lot of time together, and then 68 00:06:12,747 --> 00:06:16,147 all of the sudden one day, Gregory was gone, 69 00:06:16,735 --> 00:06:24,010 and I didn't know what happened to him or where he went 70 00:06:24,424 --> 00:06:26,554 and it wasn't until many years later 71 00:06:27,012 --> 00:06:32,778 that I found out that Gregory had Down Syndrome, 72 00:06:32,938 --> 00:06:36,938 and he had been removed from my Kindergarten class, 73 00:06:37,435 --> 00:06:40,199 and first grade I think it was at that point, 74 00:06:40,845 --> 00:06:46,920 and apparently he had been sent to some other school somewhere. 75 00:06:48,216 --> 00:06:57,846 And the loss of his friendship was pretty surprising 76 00:06:59,482 --> 00:07:04,012 and I didn't understand, you know, where he went. 77 00:07:05,400 --> 00:07:09,710 Looking back on it it's kind of peculiar that we didn't get to still be friends 78 00:07:09,710 --> 00:07:14,550 cause he didn't move away, he just stopped going to my school. 79 00:07:15,868 --> 00:07:19,868 But, I... 80 00:07:21,555 --> 00:07:31,847 I remember just being confused and then over the next number of years, 81 00:07:32,749 --> 00:07:40,567 I lived in a town that was also the home of Save the Children. 82 00:07:40,567 --> 00:07:47,447 And I was always very interested in the work 83 00:07:47,447 --> 00:07:51,447 that Save the Children was doing, and I am 84 00:07:51,977 --> 00:07:55,425 embarrassed to admit that my earliest 85 00:07:55,708 --> 00:08:06,688 involvement in humanitarian work was from a, you know a very charity-model approach. 86 00:08:07,747 --> 00:08:13,897 I spent a lot of my childhood raising 87 00:08:13,897 --> 00:08:17,581 money for Save the Children, and getting 88 00:08:17,581 --> 00:08:25,751 involved in other activities that were very 89 00:08:25,751 --> 00:08:34,979 much following the charity-pity model and certainly not a model 90 00:08:39,500 --> 00:08:46,371 of making space for and supporting and lifting up 91 00:08:46,985 --> 00:08:50,185 other people with disabilities. 92 00:08:51,592 --> 00:08:59,262 The on set of my disability wasn't until many years later, 93 00:08:59,262 --> 00:09:03,462 but when I was in high school, I had a 94 00:09:04,730 --> 00:09:17,340 requirement to do community service and I 95 00:09:17,340 --> 00:09:21,340 had an opportunity to do, had an obligation 96 00:09:21,571 --> 00:09:24,411 to do community service and we started off. 97 00:09:25,318 --> 00:09:30,209 This was the year of the first Earth Day 98 00:09:30,209 --> 00:09:34,469 and I started crushing glass at the local 99 00:09:34,469 --> 00:09:38,469 recycling center. It turned out that it 100 00:09:38,469 --> 00:09:44,739 was really boring but lots of my classmates 101 00:09:45,152 --> 00:09:51,712 were volunteering at a state institution 102 00:09:51,712 --> 00:09:59,262 for people with disabilities and I joined them 103 00:09:59,262 --> 00:10:06,238 once a week, looking back on it again it was 104 00:10:06,380 --> 00:10:10,540 pretty shocking at 13 years old I was 105 00:10:10,540 --> 00:10:15,440 assigned as the teacher of a classroom 106 00:10:15,440 --> 00:10:18,500 of 30 adults who had never had the 107 00:10:18,500 --> 00:10:23,370 opportunity to attend school and now had 108 00:10:23,370 --> 00:10:27,370 a 13 year old teacher once a week. 109 00:10:28,035 --> 00:10:32,125 Needless to say, I learned way more from them 110 00:10:32,125 --> 00:10:36,125 then they learned from me, but we had a lot of fun 111 00:10:36,125 --> 00:10:46,545 and many of them became friends, you know, very much along the rest of my path. 112 00:10:48,325 --> 00:10:52,195 Unfortunately, some of them are no longer alive 113 00:10:52,195 --> 00:10:55,885 but there are a couple of people who are 114 00:10:55,885 --> 00:10:59,947 still very much apart of my life, and 115 00:11:01,233 --> 00:11:05,867 fortunately they were successful in 116 00:11:05,867 --> 00:11:09,077 liberating themselves from that state 117 00:11:09,077 --> 00:11:13,699 institution and so, they and many others 118 00:11:13,699 --> 00:11:21,039 taught me a lot but the real pivotal 119 00:11:20,921 --> 00:11:25,939 experience for me, I was working back at 120 00:11:25,939 --> 00:11:32,229 that state institution. This was my first paid job 121 00:11:33,196 --> 00:11:36,006 in disability services and I had been 122 00:11:36,006 --> 00:11:41,666 hired to work in what was called a cottage, for 123 00:11:41,666 --> 00:11:45,666 40 women with intellectual disabilities. 124 00:11:46,446 --> 00:11:53,959 This cottage was on beautiful ground, but 125 00:11:53,959 --> 00:11:56,533 the women lived in a building with 20 on 126 00:11:56,533 --> 00:11:58,723 one side and 20 on the other side. 127 00:11:59,591 --> 00:12:04,277 My responsibilities included assisting them 128 00:12:04,811 --> 00:12:10,243 in bathing and getting dressed and eating 129 00:12:10,321 --> 00:12:16,954 many of them were unable to feed themselves 130 00:12:20,061 --> 00:12:22,358 some because they never been given 131 00:12:22,358 --> 00:12:24,178 the opportunity and others because of 132 00:12:24,178 --> 00:12:27,798 their physical disability and a lack of any 133 00:12:27,798 --> 00:12:40,210 supportive or adaptive utensils or other equipment, 134 00:12:40,495 --> 00:12:48,754 so as I was feeding people it was the same every day. 135 00:12:48,754 --> 00:12:58,038 A plate would come out and there were 3 mounds of food on the plate. One mound was always brown 136 00:12:58,038 --> 00:12:59,947 One mound was always green 137 00:12:59,947 --> 00:13:06,888 One mound was always white, you know the meat 138 00:13:07,337 --> 00:13:17,638 the vegetable, and the starch, and I know that 139 00:13:17,638 --> 00:13:24,374 people like to eat their meals different ways, there would 140 00:13:24,374 --> 00:13:31,054 also be a dessert everyday, a jello, ice cream again in a mound. 141 00:13:31,211 --> 00:13:40,159 I would spend time with each of the individuals 142 00:13:40,159 --> 00:13:47,332 who were having their meal, and would sort of be kind of working 143 00:13:47,332 --> 00:13:49,616 together trying to figure out, did they 144 00:13:49,616 --> 00:13:55,064 prefer to eat their desert first? 145 00:13:55,353 --> 00:13:58,629 And people like to do that, did they prefer 146 00:13:58,629 --> 00:14:01,989 a little bit of brown and a little bit of white 147 00:14:02,252 --> 00:14:04,425 all on the same fork? Did they not want 148 00:14:04,425 --> 00:14:08,700 them touching, and you know I would sort of 149 00:14:08,700 --> 00:14:11,320 work back and forth with them to try to 150 00:14:11,320 --> 00:14:15,320 figure out what their preference was and 151 00:14:15,444 --> 00:14:18,031 I got in trouble because I was spending 152 00:14:18,131 --> 00:14:25,650 to much time and ultimately, I was moved 153 00:14:25,650 --> 00:14:30,684 to a different position because I was taking 154 00:14:30,684 --> 00:14:33,078 to much time giving people and 155 00:14:33,078 --> 00:14:36,834 opportunity to make some choices and 156 00:14:36,834 --> 00:14:42,167 express some preferences. That was extremely 157 00:14:42,167 --> 00:14:47,406 pivotal and in many ways, you know, those early 158 00:14:47,406 --> 00:14:56,716 early experiences, have really, totally driven who I am 159 00:14:56,716 --> 00:15:00,716 and what I believe all of these years later. 160 00:15:02,577 --> 00:15:06,466 In terms of the American's with Disabilities Act 161 00:15:07,301 --> 00:15:13,231 I had very close personal experience with 162 00:15:13,231 --> 00:15:18,976 what was then called public law 94142: 163 00:15:19,098 --> 00:15:23,658 The Education of All Handicaps Act, 164 00:15:24,449 --> 00:15:27,609 later on renamed The Individuals with 165 00:15:27,609 --> 00:15:32,769 Disabilities Act, IDEA and I had a very personal 166 00:15:32,769 --> 00:15:38,959 family experience with IDEA and became aware 167 00:15:38,959 --> 00:15:48,585 of legislative initiatives, and how the IDEA had just been passed. 168 00:15:48,585 --> 00:15:57,888 Then I started to become more aware of the work 169 00:15:57,888 --> 00:16:03,308 being done, this was back int he 70's. Working 170 00:16:03,308 --> 00:16:10,608 being done on some other legislative initatives, the 504 171 00:16:11,396 --> 00:16:19,596 The Passage of Rehabilitation Act, followed by the 504 172 00:16:19,596 --> 00:16:25,236 sit-in in San Francisco to get the 173 00:16:25,469 --> 00:16:33,154 regulations put in place. That really caught my attention, 174 00:16:33,154 --> 00:16:41,600 between the little bits of information I was getting there 175 00:16:41,600 --> 00:16:50,122 and the work I was doing and then becoming a full time 176 00:16:50,122 --> 00:16:53,488 advocate, going to work for an independent 177 00:16:53,488 --> 00:17:00,430 living center in 1982, I then became extremely 178 00:17:00,430 --> 00:17:10,207 involved in systems change and how to develop 179 00:17:10,207 --> 00:17:14,202 policy, how to organize, how to support 180 00:17:14,202 --> 00:17:20,749 the rights, voices and preferences of other 181 00:17:20,749 --> 00:17:27,980 people and because I lived in Connecticut and the 182 00:17:27,980 --> 00:17:33,158 original author of the American's with 183 00:17:33,158 --> 00:17:35,833 Disabilities Act, the first time the bill 184 00:17:35,833 --> 00:17:39,237 was introduced was senator Will Weiker 185 00:17:39,237 --> 00:17:44,674 of Connecticut and Senator Weiker, father 186 00:17:44,674 --> 00:17:51,125 of a great young man who had Down Syndrome 187 00:17:51,125 --> 00:17:58,747 Senator Welker was very involved with 188 00:17:58,747 --> 00:18:04,160 the disability advocacy community in Connecticut 189 00:18:04,160 --> 00:18:10,175 and I then had the incredible opportunity to 190 00:18:10,175 --> 00:18:15,850 go to Boston and testify and on of the 191 00:18:15,850 --> 00:18:22,937 Congressman Major Owens field of hearings 192 00:18:22,937 --> 00:18:26,438 on the American's with Disabilities Act so 193 00:18:26,438 --> 00:18:30,227 of course that first time around the bill 194 00:18:30,227 --> 00:18:36,597 didn't pass. But boy oh boy, were we revved up 195 00:18:36,597 --> 00:18:47,427 in the passage of the ADA, in the period of which 196 00:18:47,427 --> 00:18:49,506 once the bill was reintroduced 197 00:18:49,506 --> 00:18:56,312 and folks were organizing, I remember that we had 198 00:18:56,312 --> 00:19:01,600 stacks and stacks and stacks of bright pink 199 00:19:01,600 --> 00:19:08,999 post cards, and we were organizing folks across the state 200 00:19:08,999 --> 00:19:16,459 to develop, to sign those post cards supporting 201 00:19:16,459 --> 00:19:27,191 passage of the ADA and then, this was sort 202 00:19:27,191 --> 00:19:33,162 of a wonderful but maybe a miss leading experience 203 00:19:33,162 --> 00:19:37,074 we actually were successful! The bill got 204 00:19:37,074 --> 00:19:44,015 passed, I remember thinking oh well this wasn't that hard, 205 00:19:44,015 --> 00:19:48,576 we had to go at it twice but this wasn't so hard! 206 00:19:48,576 --> 00:19:51,670 Let's take on some more legislation. So 207 00:19:51,670 --> 00:19:57,601 turns out it wasn't as easy as it looked to me 208 00:19:57,601 --> 00:20:04,716 It wasn't just about hot pink post cards, and meetings, and marches 209 00:20:04,716 --> 00:20:10,134 that all helped but even that sometimes 210 00:20:10,134 --> 00:20:18,164 these days doesn't seem to be enough to change policy. 211 00:20:18,164 --> 00:20:28,621 That's my earliest journey to 1990. 212 00:20:30,471 --> 00:20:34,226 Thank you Marcie, okay were going to present now 213 00:20:34,226 --> 00:20:38,792 just so you know I do have another interview at 2 214 00:20:38,792 --> 00:20:43,729 we are going to have three more sections. 215 00:20:43,729 --> 00:20:45,957 The present, the future and the call to 216 00:20:45,957 --> 00:20:50,148 action, so just to pace yourself within those 217 00:20:50,148 --> 00:20:54,167 So the present, has the ADA made a difference? 218 00:20:54,167 --> 00:20:56,627 Tell us about your "Aha" moment that told you 219 00:20:56,627 --> 00:20:59,137 that the ADA is or is not making a difference 220 00:20:59,137 --> 00:21:01,990 and to what extent based on your passions 221 00:21:01,990 --> 00:21:04,570 and area of expertise, where you see or 222 00:21:04,570 --> 00:21:08,271 not see the impact of the ADA. 223 00:21:08,901 --> 00:21:18,601 So the ADA has had a huge and sweeping impact 224 00:21:18,601 --> 00:21:27,433 and I... Its important for me to begin as I talk about 225 00:21:27,433 --> 00:21:32,498 the present day as were embarking on ADA 30. 226 00:21:32,498 --> 00:21:37,107 Its really important to start with, how 227 00:21:37,107 --> 00:21:47,177 much things absolutely have changed, and certainly some 228 00:21:47,177 --> 00:21:50,889 of the architectural barrier removal efforts 229 00:21:50,889 --> 00:21:56,217 some of the significant improvements in 230 00:21:56,217 --> 00:22:00,622 effective, equally effective communication 231 00:22:00,622 --> 00:22:05,269 some of the requirements around programs 232 00:22:05,269 --> 00:22:13,584 All of those have significantly changed 233 00:22:13,584 --> 00:22:18,873 most, I can't even say most of the time... often. 234 00:22:18,873 --> 00:22:21,753 There have been many great initiatives 235 00:22:21,753 --> 00:22:29,707 over the years, but we always had to 236 00:22:29,707 --> 00:22:38,200 maintain a relentless battle to, to not let 237 00:22:38,200 --> 00:22:44,254 anything slip, to not lose and sort of momentum, 238 00:22:44,254 --> 00:22:53,846 towards accessibility. If we look away for 239 00:22:53,846 --> 00:22:57,695 a minute, our rights will be swept away 240 00:22:57,695 --> 00:23:01,703 from us, I can certainly talk about the 241 00:23:01,703 --> 00:23:09,710 very present day, and what I have to say 242 00:23:09,710 --> 00:23:16,323 about where we are today, is not 243 00:23:16,323 --> 00:23:19,844 great, so I do want to take a little bit 244 00:23:19,844 --> 00:23:25,348 more time to call out the significant 245 00:23:25,348 --> 00:23:36,824 progress in so many aspects of daily life, 246 00:23:36,824 --> 00:23:47,369 in which we can call out failures of ADA 247 00:23:47,369 --> 00:23:53,228 compliance, enforcement of the law. 248 00:23:53,228 --> 00:24:02,036 But it is often times in comparison to 249 00:24:02,036 --> 00:24:05,574 the examples of where it's working. 250 00:24:05,574 --> 00:24:10,424 So when transportation is not accessible 251 00:24:10,424 --> 00:24:17,515 we're calling it out because we know the 252 00:24:17,515 --> 00:24:22,841 good and the promising practices that have 253 00:24:22,841 --> 00:24:28,303 been in place for transportation accesabilty 254 00:24:28,303 --> 00:24:34,637 Make the failures so much more egregious. 255 00:24:34,637 --> 00:24:41,911 In housing, in employment, in the kinds 256 00:24:41,911 --> 00:24:48,796 of assistive devices that are available 257 00:24:48,796 --> 00:24:56,217 the universal design of places and things, 258 00:24:56,217 --> 00:25:08,506 all of that points to the examples of where 259 00:25:08,506 --> 00:25:14,156 we are getting it right, In stark contrast 260 00:25:14,156 --> 00:25:17,509 the areas where we are getting it egreigously 261 00:25:17,509 --> 00:25:22,158 getting it wrong. I have to say that 262 00:25:22,158 --> 00:25:34,775 just very recently, I have lead my 263 00:25:34,775 --> 00:25:40,961 organization involvement in a petition to 264 00:25:40,961 --> 00:25:44,824 the U.S Department of Health and Human 265 00:25:44,824 --> 00:25:48,930 Services, demanding that people with 266 00:25:48,930 --> 00:25:53,475 disabilities be immediately located 267 00:25:53,475 --> 00:25:58,815 out of nursing homes and other congregate 268 00:25:58,815 --> 00:26:08,053 settings due to the horrific circumstances 269 00:26:08,053 --> 00:26:14,529 in those congregate settings, to Covid-19 270 00:26:14,529 --> 00:26:22,390 and the failure to provide appropriate 271 00:26:22,390 --> 00:26:25,791 protections for people with disabilities 272 00:26:25,791 --> 00:26:35,481 and institutional settings. The ADA back in 1990 273 00:26:35,481 --> 00:26:41,783 very clearly gave people with disabilities 274 00:26:41,783 --> 00:26:53,050 significant rights, and even when 275 00:26:53,050 --> 00:27:06,944 challenged in 1999, the homestead case 276 00:27:06,944 --> 00:27:13,128 which was a Georgia case, and two women 277 00:27:13,128 --> 00:27:19,373 who Lois and Elaine, Lois Curtis an 278 00:27:19,373 --> 00:27:21,037 incredible woman, I have had the 279 00:27:21,037 --> 00:27:25,183 pleasure of being with on a number of 280 00:27:25,183 --> 00:27:33,017 occasions. The two of them demanded that 281 00:27:33,017 --> 00:27:36,896 they had a right to live in the most intergraded 282 00:27:36,896 --> 00:27:39,580 setting appropriate to their needs. 283 00:27:39,580 --> 00:27:46,175 The decision, the case went all the way to 284 00:27:46,175 --> 00:27:53,014 the Supreme Court, and I was among 285 00:27:53,014 --> 00:27:56,936 those who slept out on the steps of 286 00:27:56,936 --> 00:28:00,195 the Supreme Court on the night before 287 00:28:00,195 --> 00:28:04,343 their case was heard. I was among the 288 00:28:04,343 --> 00:28:08,067 folks who celebrated out in front of the 289 00:28:08,067 --> 00:28:11,204 Supreme Court on the day that decision 290 00:28:11,204 --> 00:28:15,206 came down in favor of Lois and Elaine 291 00:28:15,206 --> 00:28:19,450 right and the rights of thousands, tens of 292 00:28:19,450 --> 00:28:23,452 thousands, millions of people with 293 00:28:23,452 --> 00:28:28,365 disabilities to be, to live in the most 294 00:28:28,365 --> 00:28:29,860 intergraded setting appropriate to their 295 00:28:29,860 --> 00:28:36,254 needs. Given that we are 21 years after 296 00:28:36,254 --> 00:28:41,292 that decision, yesterday the American 297 00:28:41,292 --> 00:28:46,401 Civil Liberties Union submitted a petition 298 00:28:46,401 --> 00:28:49,416 and the World Institute on Disability joined 299 00:28:49,416 --> 00:28:52,533 a number of disability organizations 300 00:28:52,533 --> 00:28:58,858 in a bringing that petition, demanding 301 00:28:58,858 --> 00:29:04,296 that people with disabilities be immediately 302 00:29:04,296 --> 00:29:10,012 relocated out of these congregate settings. 303 00:29:10,012 --> 00:29:15,385 Tens of thousands of people have died 304 00:29:15,385 --> 00:29:20,495 in the last hundred days, the genocide of 305 00:29:20,495 --> 00:29:23,931 people with disabilities because of the 306 00:29:23,931 --> 00:29:28,176 failures of implementation of that 307 00:29:28,176 --> 00:29:33,995 homestead decision and the failures of our 308 00:29:33,995 --> 00:29:39,825 government to provide that kind of support 309 00:29:39,825 --> 00:29:44,286 and services that enable people with disabilities 310 00:29:44,286 --> 00:29:49,182 to live safely and and with the support 311 00:29:49,182 --> 00:29:51,385 they need in place in the community, 312 00:29:51,385 --> 00:30:02,638 very infuriatingly, our continued persistent 313 00:30:02,638 --> 00:30:09,043 call for people with disabilities to be 314 00:30:09,043 --> 00:30:15,225 adequately served in these disasters 315 00:30:15,225 --> 00:30:19,042 have been ignored and the bottom line 316 00:30:19,042 --> 00:30:25,849 has been that again, over the last hundred days 317 00:30:25,849 --> 00:30:29,730 tens of thousands of people with disabilities 318 00:30:29,730 --> 00:30:33,024 have died, and when I was called on 319 00:30:33,024 --> 00:30:37,184 saying that those were people with disabilities 320 00:30:37,184 --> 00:30:40,427 I have had conversations with a number of 321 00:30:40,427 --> 00:30:43,584 senior government officials who, 322 00:30:43,584 --> 00:30:49,409 "why are you saying people with disabilities" 323 00:30:49,409 --> 00:30:55,830 these were old people with underlying conditions 324 00:30:55,830 --> 00:31:01,196 living in nursing homes, and long term care 325 00:31:01,196 --> 00:31:03,725 facilities, look you don't go to a nursing home 326 00:31:03,725 --> 00:31:07,078 because you are old. You go to a nursing home because 327 00:31:07,078 --> 00:31:09,160 you have a disability and the supports and 328 00:31:09,160 --> 00:31:12,537 services you need to stay in the community 329 00:31:12,537 --> 00:31:17,089 have not been given to you, and that majority 330 00:31:17,089 --> 00:31:23,368 of some would say of all those deaths in 331 00:31:23,368 --> 00:31:27,218 congregate facilites are people with disabilities. 332 00:31:27,218 --> 00:31:33,365 Most of them black and brown and people 333 00:31:33,365 --> 00:31:40,082 living in poverty, and the failures of 334 00:31:40,082 --> 00:31:46,249 American's with Disabilities Act, the homestead decision and 335 00:31:46,249 --> 00:31:53,348 our governments will to monitor and force 336 00:31:53,348 --> 00:31:58,300 this law and the rehabilitation act have a 337 00:31:58,300 --> 00:32:02,838 devastating impact on where we are today 338 00:32:02,838 --> 00:32:06,918 and the depth of many of our siblings, 339 00:32:06,918 --> 00:32:09,743 Without out end in sight. 340 00:32:12,183 --> 00:32:16,940 Thank you Marcie, okay so next onto the 341 00:32:16,940 --> 00:32:19,956 future. With the work you have been doing 342 00:32:19,956 --> 00:32:22,855 you have seen a lot in terms of progress and barriers. 343 00:32:22,855 --> 00:32:26,057 If you could pick one thing to change or that needs 344 00:32:26,057 --> 00:32:28,269 to occur to have access and equality, 345 00:32:28,269 --> 00:32:32,037 I know that is hard, one thing. To have 346 00:32:32,037 --> 00:32:34,275 access and equality present in the lives 347 00:32:34,275 --> 00:32:37,592 of people with disabilities, what would that be? 348 00:32:37,592 --> 00:32:44,525 The one thing that must happen 349 00:32:44,525 --> 00:32:50,323 people with disabilities have civil rights 350 00:32:50,323 --> 00:32:57,455 protections by law. The one thing that must happen 351 00:32:57,455 --> 00:33:05,464 is that their rights are monitored and enforced 352 00:33:05,464 --> 00:33:12,097 without exception. Following the law is not 353 00:33:12,097 --> 00:33:18,006 enough, we need universal designs to be 354 00:33:18,006 --> 00:33:22,312 the standard, we need accessibility 355 00:33:22,312 --> 00:33:26,948 and the accommodation to be readily available. 356 00:33:26,948 --> 00:33:34,100 But we must have monitoring and enforcement. 357 00:33:34,100 --> 00:33:38,529 Every federal dollar is supposed to be 358 00:33:38,529 --> 00:33:41,428 spent in compliance with the rehabilitation act 359 00:33:41,428 --> 00:33:46,952 and between the rehab act and what the ADA require. 360 00:33:46,952 --> 00:33:55,134 There should be no room for people with 361 00:33:55,134 --> 00:33:59,994 those civil rights protections to be repeatedly denied 362 00:33:59,994 --> 00:34:09,786 and unable to fully participate in home 363 00:34:09,786 --> 00:34:15,905 and community life. Monitoring and enforcement 364 00:34:15,905 --> 00:34:26,452 must be the floor, the ceiling. But enforcing 365 00:34:26,452 --> 00:34:30,179 these civil rights laws is absolutely 366 00:34:30,179 --> 00:34:32,405 the floor. Thank you 367 00:34:32,670 --> 00:34:35,891 So what can we do? What steps can we as community members 368 00:34:35,891 --> 00:34:37,541 take right now? 369 00:34:37,541 --> 00:34:43,161 So what we can do right now is 370 00:34:43,161 --> 00:34:46,565 one of my favorite sayings is 371 00:34:46,565 --> 00:34:48,732 "never give up, never give in" 372 00:34:48,732 --> 00:34:50,784 another favorites is 373 00:34:50,784 --> 00:34:53,053 "nothing about us, without us" 374 00:34:53,053 --> 00:35:00,218 We as disability community leaders, need 375 00:35:00,218 --> 00:35:08,096 to stick together, we need to center our work 376 00:35:08,096 --> 00:35:13,880 around people who are multiple marginalized 377 00:35:13,880 --> 00:35:19,548 excluded, we need to be sure that 378 00:35:19,548 --> 00:35:26,935 we are not wasting our time with in fighting 379 00:35:26,935 --> 00:35:35,813 and with the kind of divisive childish behavior 380 00:35:35,813 --> 00:35:39,959 that some folks are still stuck on engaging in. 381 00:35:39,959 --> 00:35:46,286 We absolutely must reach a hand forward, 382 00:35:46,286 --> 00:35:51,368 reach a hand back, stick together and 383 00:35:51,368 --> 00:36:02,326 continue relentlessly to work towards 384 00:36:02,326 --> 00:36:13,815 the realization of the goal that the ADA 385 00:36:13,815 --> 00:36:18,166 was written around and so many 386 00:36:18,166 --> 00:36:23,546 of our siblings have fought so very hard 387 00:36:23,546 --> 00:36:30,765 for, we've lost a bunch of those hard working 388 00:36:30,765 --> 00:36:38,069 visionary leaders, many of them have been 389 00:36:38,069 --> 00:36:43,003 lost in recent years, some have been lost 390 00:36:43,003 --> 00:36:50,272 along the way. We have an incredible 391 00:36:50,272 --> 00:36:56,747 legacy to care for, we have huge 392 00:36:56,747 --> 00:37:01,329 opportunities to work towards. Technology 393 00:37:01,329 --> 00:37:03,939 has the potential of leveling the 394 00:37:03,939 --> 00:37:08,372 playing field if in fact people have real access 395 00:37:08,372 --> 00:37:13,657 and the World Institute on Disability 396 00:37:13,657 --> 00:37:17,590 and our commitment to work in partnership 397 00:37:17,590 --> 00:37:23,893 with other disability lead organizations and our allies 398 00:37:23,893 --> 00:37:32,153 to make communities stronger, more resilient for 399 00:37:32,153 --> 00:37:35,989 the whole community. When we get it right 400 00:37:35,989 --> 00:37:40,097 for people with disabilities, I think the 401 00:37:40,097 --> 00:37:47,487 whole community not only benefits is stronger 402 00:37:47,487 --> 00:37:52,358 for our leadership, our contributions, 403 00:37:52,358 --> 00:38:03,606 our expertise in what it takes to make daily life 404 00:38:03,606 --> 00:38:05,779 work for everybody. 405 00:38:06,487 --> 00:38:09,822 Excellent thank you.