WEBVTT 00:00:00.863 --> 00:00:04.146 You'll see in the corner the record button 00:00:04.146 --> 00:00:06.143 So you should see that it's recording now, 00:00:06.143 --> 00:00:07.472 and I'm going to mute myself now, 00:00:07.472 --> 00:00:08.844 and you'll go ahead and do your intro. 00:00:08.844 --> 00:00:10.446 Thank you Marcie. 00:00:14.230 --> 00:00:16.286 Hi there, I'm Marcie Roth 00:00:16.290 --> 00:00:22.143 and I have been working in disability rights 00:00:22.143 --> 00:00:26.224 for my whole adult life, 00:00:26.224 --> 00:00:31.565 and actually, since I was a freshman in high school. 00:00:31.565 --> 00:00:42.536 I am currently the executive director and CEO of the World Institute on Disability, 00:00:42.536 --> 00:00:53.208 and I have been working over the years in services 00:00:53.208 --> 00:01:00.960 for people living in residential programs early in my career 00:01:00.960 --> 00:01:09.100 with people in, children in school settings, 00:01:09.100 --> 00:01:15.002 people in vocational rehabilitation, 00:01:15.002 --> 00:01:23.411 and then people in community living environments, 00:01:23.411 --> 00:01:30.917 then along the way, I became very involved in disability rights 00:01:30.917 --> 00:01:41.317 and very involved in the early days of advocacy 00:01:41.317 --> 00:01:44.957 befor the ADA was introduced. 00:01:44.957 --> 00:01:54.850 And then I worked for disability advocacy organizations almost ever since. 00:01:54.860 --> 00:01:58.412 In addition to my own disability, 00:01:58.412 --> 00:02:02.043 I'm also the parent of two 00:02:02.043 --> 00:02:04.868 now adults with disabilities. 00:02:04.868 --> 00:02:08.559 My Husband also has a disability, 00:02:08.559 --> 00:02:17.443 and much od my family also happen to be people with disabilities 00:02:17.443 --> 00:02:23.748 so disability rights is just part of 00:02:23.748 --> 00:02:27.376 everything I am and most everything I do. 00:02:27.376 --> 00:02:38.803 I did spend from 2001 and onward 00:02:38.803 --> 00:02:44.427 focusing very much on what happens for people with disabilityes 00:02:44.434 --> 00:02:47.084 before, during, and after disasters. 00:02:47.084 --> 00:02:54.235 And that's been a real particular laser focus of mine ever since, 00:02:54.237 --> 00:02:57.499 and in fact, I've had the opportunity 00:02:57.499 --> 00:03:01.932 as an appointee in the Obama administrashion 00:03:01.932 --> 00:03:08.229 to spend just about 8 yeards at FEMA, 00:03:08.229 --> 00:03:14.501 establishing FEMA's Office of Disability Integration Coordination, 00:03:14.501 --> 00:03:23.258 and building a cadre of disability experts 00:03:23.258 --> 00:03:27.478 of the same pond, supporting governors 00:03:27.478 --> 00:03:34.836 and emergency managers and most particularly 00:03:34.836 --> 00:03:38.398 engaging people with disabilities, and disability organizations 00:03:38.398 --> 00:03:42.170 in emergency preparedness 00:03:42.170 --> 00:03:46.638 and throughout disaster response recovery and mitigation. 00:03:46.638 --> 00:03:54.205 So one last piece since I've been with 00:03:54.205 --> 00:03:59.132 the World Institute on Disability since last September, 00:03:59.132 --> 00:04:05.602 my ongoing focus on global 00:04:05.602 --> 00:04:09.431 disability rights has really been 00:04:09.431 --> 00:04:12.550 something that I've had much more 00:04:12.550 --> 00:04:16.305 opportunity to be actively involved in 00:04:16.305 --> 00:04:26.005 and I have spent the time since joining 00:04:26.005 --> 00:04:31.601 WID building a strategic planning process 00:04:31.601 --> 00:04:36.884 and supporting the organization to 00:04:36.884 --> 00:04:45.320 establish new priorities, taking a look at 00:04:45.320 --> 00:04:48.797 the organization's mission, and very 00:04:48.797 --> 00:04:53.082 recently establishing four particular areas 00:04:53.082 --> 00:04:56.552 of focus for the organization as we move Forward. 00:04:59.472 --> 00:05:01.972 Thank you Marcie. Excellent, okay 00:05:01.972 --> 00:05:05.140 I apologize that my neighbor is chipping 00:05:05.140 --> 00:05:08.165 a lot of brush today, so it's making extra sound 00:05:08.165 --> 00:05:09.297 whenever I unmute, 00:05:09.297 --> 00:05:12.656 but don't worry, it won't interfere with your recording. 00:05:12.656 --> 00:05:14.990 Okay, so the first question is 00:05:14.990 --> 00:05:17.225 about the past. So tell of your first 00:05:17.225 --> 00:05:18.942 memory realizing that there were 00:05:18.942 --> 00:05:21.762 accessibility issues, discrimination, or 00:05:21.762 --> 00:05:24.198 lack of inclusion. What is your personal 00:05:24.198 --> 00:05:26.409 story or connection with the American with 00:05:26.409 --> 00:05:28.516 Disabilities Act? What do you remember 00:05:28.516 --> 00:05:30.502 about the day that it was signed, if 00:05:30.502 --> 00:05:32.946 applicable? And what was the impact on 00:05:32.946 --> 00:05:36.062 you and on others? Remember to tap 00:05:36.062 --> 00:05:38.888 something so that the camera shifts to you 00:05:38.888 --> 00:05:39.917 before you start. 00:05:44.654 --> 00:05:53.454 I first became aware of disability at a 00:05:53.454 --> 00:05:58.355 very young age. I had a best friend in 00:05:58.355 --> 00:06:04.758 first grade. His name was Gregory, and he and i 00:06:04.758 --> 00:06:09.784 were just wonderful friends. 00:06:09.784 --> 00:06:12.794 We spent a lot of time together, and then all 00:06:12.794 --> 00:06:15.816 of a sudden, one day Gregory was gone 00:06:15.816 --> 00:06:22.802 and I didn't know what happened to him or 00:06:22.802 --> 00:06:25.507 where he went and it wasn't until many 00:06:25.507 --> 00:06:30.291 years later that I found out that Gregory 00:06:30.291 --> 00:06:34.911 had Down Syndrome, and he had been removed 00:06:34.911 --> 00:06:38.502 from my kindergarten class and first 00:06:38.502 --> 00:06:41.489 grade I think it was at that point. And 00:06:41.489 --> 00:06:44.970 apparently he had been sent to some other 00:06:44.970 --> 00:06:52.462 school, somewhere. And the loss of his 00:06:52.462 --> 00:06:58.128 friendship was pretty surprising and 00:06:58.128 --> 00:07:03.935 I didn't understand you know where he went 00:07:03.935 --> 00:07:06.818 Looking back on it, it was kind of 00:07:06.818 --> 00:07:09.239 peculiar that we didn't just get to still 00:07:09.239 --> 00:07:11.819 be friends 'cause he didn't move away, 00:07:11.819 --> 00:07:15.934 he just stopped going to my school. 00:07:15.934 --> 00:07:28.004 But I remember just being confused and then 00:07:28.004 --> 00:07:33.866 over the next number of years, I lived in 00:07:33.866 --> 00:07:38.305 a town that was also the home of 00:07:38.305 --> 00:07:43.314 Save the Children, and I was always very 00:07:43.314 --> 00:07:48.486 interested in the work that Save the Children 00:07:48.486 --> 00:07:53.791 was doing and I am embarrassed to admit 00:07:53.791 --> 00:08:00.050 my earliest involvement in humanitarian 00:08:00.050 --> 00:08:05.649 work was from a very charity-model 00:08:05.649 --> 00:08:10.976 approach, and I spent a lot of my 00:08:10.976 --> 00:08:16.018 childhood raising money for Save the Children 00:08:16.018 --> 00:08:18.977 and getting involved in other 00:08:18.977 --> 00:08:28.291 activities that were very much following 00:08:28.291 --> 00:08:33.541 the charity-pity model and certainly not 00:08:33.541 --> 00:08:45.420 a model making space for and supporting and lifting 00:08:45.420 --> 00:08:49.595 up other people with disabilities. 00:08:49.595 --> 00:08:57.039 the onset of my disability wasn't until many 00:08:57.039 --> 00:09:01.520 years later, but when I was in high school 00:09:01.520 --> 00:09:13.493 I had the, I had a requirement to do... 00:09:13.493 --> 00:09:15.771 I can't even remember what it's called now 00:09:15.771 --> 00:09:18.070 community service! Sorry. I had an 00:09:18.070 --> 00:09:22.033 opportunity to do-- or I had an obligation 00:09:22.033 --> 00:09:24.973 to do community service and I started off 99:59:59.999 --> 99:59:59.999 This was the year of the first Earth Day 99:59:59.999 --> 99:59:59.999 and I started crushing glass at the local 99:59:59.999 --> 99:59:59.999 recycling center and it turned out that 99:59:59.999 --> 99:59:59.999 that was really boring but lots of my 99:59:59.999 --> 99:59:59.999 classmates were volunteering at a state 99:59:59.999 --> 99:59:59.999 institution for people with disabilities 99:59:59.999 --> 99:59:59.999 and I joined them once a week and looking 99:59:59.999 --> 99:59:59.999 back on it again, it was pretty shocking 99:59:59.999 --> 99:59:59.999 that at 13 years old, I was assigned as 99:59:59.999 --> 99:59:59.999 the teacher of a classroom of 30 adults 99:59:59.999 --> 99:59:59.999 who had never had the opportunity to 99:59:59.999 --> 99:59:59.999 really attend school and they now had a 99:59:59.999 --> 99:59:59.999 13-year old teacher once a week. Needless 99:59:59.999 --> 99:59:59.999 to say, I learned way more from them than 99:59:59.999 --> 99:59:59.999 they learned from me, but we had a lot of 99:59:59.999 --> 99:59:59.999 fun and many of them became friends very 99:59:59.999 --> 99:59:59.999 much along the rest of my path and 99:59:59.999 --> 99:59:59.999 unfortunately, some of them are no longer 99:59:59.999 --> 99:59:59.999 alive but there are a couple of people who 99:59:59.999 --> 99:59:59.999 are still very much a part of my life and 99:59:59.999 --> 99:59:59.999 fortunately, they were successful in 99:59:59.999 --> 99:59:59.999 liberating themselves from that state 99:59:59.999 --> 99:59:59.999 institution. And so they and many others 99:59:59.999 --> 99:59:59.999 taught me a lot. But the real pivotal 99:59:59.999 --> 99:59:59.999 experience for me, I was working back at 99:59:59.999 --> 99:59:59.999 that state institution, it was my first 99:59:59.999 --> 99:59:59.999 paid job in disability services and I had 99:59:59.999 --> 99:59:59.999 been hired to work in what was called a 99:59:59.999 --> 99:59:59.999 "cottage" for 40 women with intellectual 99:59:59.999 --> 99:59:59.999 disabilites and this "cottage" was on 99:59:59.999 --> 99:59:59.999 beautiful grounds but the women lived in a 99:59:59.999 --> 99:59:59.999 building 20 on one side, 20 on the other 99:59:59.999 --> 99:59:59.999 side and my responsibilities included 99:59:59.999 --> 99:59:59.999 assisting them in bathing and getting 99:59:59.999 --> 99:59:59.999 dressed and in eating. Many of them were 99:59:59.999 --> 99:59:59.999 unable to feed themselves. Some because 99:59:59.999 --> 99:59:59.999 they had never been given the opportunity, 99:59:59.999 --> 99:59:59.999 others because of their physical 99:59:59.999 --> 99:59:59.999 disability and a lack of any sort of 99:59:59.999 --> 99:59:59.999 adapted utensils or other equipment. 99:59:59.999 --> 99:59:59.999 So as I was feeding people, the sort of 99:59:59.999 --> 99:59:59.999 routine was the same every day. A plate 99:59:59.999 --> 99:59:59.999 would come out, and there would be 3 99:59:59.999 --> 99:59:59.999 mounds of food on the plate. One mound was 99:59:59.999 --> 99:59:59.999 always brown, one mound was always 99:59:59.999 --> 99:59:59.999 green, and one mount was always white. 99:59:59.999 --> 99:59:59.999 You know the meat, the vegetable, and the 99:59:59.999 --> 99:59:59.999 starch. And I know that people like to 99:59:59.999 --> 99:59:59.999 eat their meals in different ways. There 99:59:59.999 --> 99:59:59.999 would also be a dessert every day, jello or 99:59:59.999 --> 99:59:59.999 ice cream, again always in a mound. 99:59:59.999 --> 99:59:59.999 And so I would spend time with each of the 99:59:59.999 --> 99:59:59.999 individuals who were having their meal 99:59:59.999 --> 99:59:59.999 and would sort of be working together, 99:59:59.999 --> 99:59:59.999 trying to figure out if they preferred to 99:59:59.999 --> 99:59:59.999 have, to eat their dessert first? Some 99:59:59.999 --> 99:59:59.999 people liked to do that. Did they prefer a 99:59:59.999 --> 99:59:59.999 little bit of the brown and a little bit 99:59:59.999 --> 99:59:59.999 of the white all on the same fork? Did 99:59:59.999 --> 99:59:59.999 they not want their food touching? You 99:59:59.999 --> 99:59:59.999 know and I would sort of work back and 99:59:59.999 --> 99:59:59.999 forth with them to try and figure out what 99:59:59.999 --> 99:59:59.999 their preference was and I got in trouble 99:59:59.999 --> 99:59:59.999 because I was spending too much time 99:59:59.999 --> 99:59:59.999 and ultimately, I was moved to a different 99:59:59.999 --> 99:59:59.999 position because I was taking too much 99:59:59.999 --> 99:59:59.999 time giving people an opportunity to make 99:59:59.999 --> 99:59:59.999 some choices and express some preferences. 99:59:59.999 --> 99:59:59.999 So that was extremely pivotal and in many 99:59:59.999 --> 99:59:59.999 ways you know, those early early 99:59:59.999 --> 99:59:59.999 experiences have really totally driven who 99:59:59.999 --> 99:59:59.999 I am and what I believe all these years 99:59:59.999 --> 99:59:59.999 later. In terms of the Americans with 99:59:59.999 --> 99:59:59.999 Disability Act, I had a very close 99:59:59.999 --> 99:59:59.999 personal experience with what was then 99:59:59.999 --> 99:59:59.999 called "public law 94142" the Education of 99:59:59.999 --> 99:59:59.999 All Handicapped Act, later on renamed 99:59:59.999 --> 99:59:59.999 Individuals with Disabilities Act, IDEA 99:59:59.999 --> 99:59:59.999 and I had a very personal family 99:59:59.999 --> 99:59:59.999 experience with IDEA and became aware of 99:59:59.999 --> 99:59:59.999 legislative initiatives and how the IDEA 99:59:59.999 --> 99:59:59.999 had just been passed. And then I started 99:59:59.999 --> 99:59:59.999 to become more aware of the work being 99:59:59.999 --> 99:59:59.999 done. And this was back in the 70s and 99:59:59.999 --> 99:59:59.999 work being done of other legislative 99:59:59.999 --> 99:59:59.999 initiatives and the 504, the passage of 99:59:59.999 --> 99:59:59.999 the Rehabilitation Act, followed by the 99:59:59.999 --> 99:59:59.999 504 sit-in in San Francisco to get the 99:59:59.999 --> 99:59:59.999 regulations put in place. That really 99:59:59.999 --> 99:59:59.999 caught my attention and between the little 99:59:59.999 --> 99:59:59.999 bits of information I was getting there 99:59:59.999 --> 99:59:59.999 and the work I was doing and then 99:59:59.999 --> 99:59:59.999 becoming a full-time advocate going to 99:59:59.999 --> 99:59:59.999 work for an independent living center in 99:59:59.999 --> 99:59:59.999 1982, I then became extremely involved 99:59:59.999 --> 99:59:59.999 in systems change and how to develop 99:59:59.999 --> 99:59:59.999 policy, how to organize, how to support 99:59:59.999 --> 99:59:59.999 the rights and voices and preferences of 99:59:59.999 --> 99:59:59.999 other people and because I lived in 99:59:59.999 --> 99:59:59.999 Connecticut and the original author of 99:59:59.999 --> 99:59:59.999 the Americans with Disability Act, the 99:59:59.999 --> 99:59:59.999 first time that it was introduced was 99:59:59.999 --> 99:59:59.999 Senator Weicker of Connecticut, and 99:59:59.999 --> 99:59:59.999 Senator Weicker, father of a great young 99:59:59.999 --> 99:59:59.999 man who had Down Syndrome, Senator 99:59:59.999 --> 99:59:59.999 Weicker was very involved with the 99:59:59.999 --> 99:59:59.999 disability advocacy community in 99:59:59.999 --> 99:59:59.999 Connecticut, and I then had the incredible 99:59:59.999 --> 99:59:59.999 opportunity to go to Boston and testify 99:59:59.999 --> 99:59:59.999 at one of the Congress major hearings-- 99:59:59.999 --> 99:59:59.999 field hearings on the Americans with 99:59:59.999 --> 99:59:59.999 Disability Act. So you know of course the 99:59:59.999 --> 99:59:59.999 first time around, the bill didn't pass 99:59:59.999 --> 99:59:59.999 but we were revved up and in the 99:59:59.999 --> 99:59:59.999 passage of the ADA, in the period in which 99:59:59.999 --> 99:59:59.999 once the bill was re-introduced and votes 99:59:59.999 --> 99:59:59.999 were organizing, I remember that we had 99:59:59.999 --> 99:59:59.999 stacks and stacks and stacks of bright 99:59:59.999 --> 99:59:59.999 pink postcards and we were organizing 99:59:59.999 --> 99:59:59.999 folks across the states to develop, to 99:59:59.999 --> 99:59:59.999 sign those postcards supporting the 99:59:59.999 --> 99:59:59.999 passage of the ADA and then you know this 99:59:59.999 --> 99:59:59.999 was sort of a wonderful but maybe 99:59:59.999 --> 99:59:59.999 misleading experience, we actually were 99:59:59.999 --> 99:59:59.999 successful. The bill got passed! And I 99:59:59.999 --> 99:59:59.999 remember thinking "Oh, well this wasn't 99:59:59.999 --> 99:59:59.999 that hard. I mean, you know, we had to go 99:59:59.999 --> 99:59:59.999 at it twice, but well this wasn't so hard. 99:59:59.999 --> 99:59:59.999 Let's take on some more legislation!" And 99:59:59.999 --> 99:59:59.999 it turns out that it wasn't as easy 99:59:59.999 --> 99:59:59.999 as it looked to me. It wasn't just about 99:59:59.999 --> 99:59:59.999 hot pink postcards and meetings and 99:59:59.999 --> 99:59:59.999 marches--that all helped but even that 99:59:59.999 --> 99:59:59.999 sometimes these days, it doesn't seem to 99:59:59.999 --> 99:59:59.999 be enough to change policy. So that is my 99:59:59.999 --> 99:59:59.999 earliest journey to 1990. 99:59:59.999 --> 99:59:59.999 Thank you Marcie. Okay we're going to the 99:59:59.999 --> 99:59:59.999 present now. So just so you know, I do 99:59:59.999 --> 99:59:59.999 have another interview at 2:00, so we're 99:59:59.999 --> 99:59:59.999 going to have 3 more sections: the present 99:59:59.999 --> 99:59:59.999 the future, and the call to action. So 99:59:59.999 --> 99:59:59.999 just to pace yourself within the--thank 99:59:59.999 --> 99:59:59.999 you. So within the present, has the ADA 99:59:59.999 --> 99:59:59.999 made a difference? Tell us about your 99:59:59.999 --> 99:59:59.999 "aha" moment that told you that the ADA is 99:59:59.999 --> 99:59:59.999 or is not making a difference and to what 99:59:59.999 --> 99:59:59.999 extent based on your passions and areas of 99:59:59.999 --> 99:59:59.999 expertise, where do you see or not see the 99:59:59.999 --> 99:59:59.999 impact of the ADA? 99:59:59.999 --> 99:59:59.999 So the ADA has had a huge 99:59:59.999 --> 99:59:59.999 and sweeping impact 99:59:59.999 --> 99:59:59.999 and it's important for me 99:59:59.999 --> 99:59:59.999 as I begin to talk 99:59:59.999 --> 99:59:59.999 about the present day as we're embarking 99:59:59.999 --> 99:59:59.999 on ADA 30 it's really important to start 99:59:59.999 --> 99:59:59.999 with how much things absolutely have 99:59:59.999 --> 99:59:59.999 changed, certainly some of the 99:59:59.999 --> 99:59:59.999 architectural barrier removal efforts, 99:59:59.999 --> 99:59:59.999 some of the significant improvements 99:59:59.999 --> 99:59:59.999 in equally effective communication, 99:59:59.999 --> 99:59:59.999 some of the requirements around programs, 99:59:59.999 --> 99:59:59.999 all of those have significantly changed 99:59:59.999 --> 99:59:59.999 most often can't even say most--often 99:59:59.999 --> 99:59:59.999 there's been really great initatives over 99:59:59.999 --> 99:59:59.999 the years but we've always had to maintain 99:59:59.999 --> 99:59:59.999 a relentless battle to not 99:59:59.999 --> 99:59:59.999 let anything slip, to not let 99:59:59.999 --> 99:59:59.999 anything lose any sort of momentum 99:59:59.999 --> 99:59:59.999 towards accessibility, 99:59:59.999 --> 99:59:59.999 if we look away for a minute 99:59:59.999 --> 99:59:59.999 our rights will be swept away from us, 99:59:59.999 --> 99:59:59.999 and I can certainly talk about 99:59:59.999 --> 99:59:59.999 the very present day 99:59:59.999 --> 99:59:59.999 and what I have to say about where 99:59:59.999 --> 99:59:59.999 we are today is not great 99:59:59.999 --> 99:59:59.999 and I do want to take a little more time 99:59:59.999 --> 99:59:59.999 to call out the significant progress; 99:59:59.999 --> 99:59:59.999 in so many aspects of daily life 99:59:59.999 --> 99:59:59.999 in which we can 99:59:59.999 --> 99:59:59.999 call out failures of ADA compliance, 99:59:59.999 --> 99:59:59.999 enforcement of the law but oftentimes 99:59:59.999 --> 99:59:59.999 in comparison to the examples of where 99:59:59.999 --> 99:59:59.999 it's working, so when transportation 99:59:59.999 --> 99:59:59.999 is not accessible, we're calling it out 99:59:59.999 --> 99:59:59.999 because we know the good and promising 99:59:59.999 --> 99:59:59.999 practices that have been in place 99:59:59.999 --> 99:59:59.999 for transportation accessiblity 99:59:59.999 --> 99:59:59.999 make the failures so much more egregious 99:59:59.999 --> 99:59:59.999 in housing, in employment, in the kinds of 99:59:59.999 --> 99:59:59.999 assistive devices that are available, the 99:59:59.999 --> 99:59:59.999 universal design of places and things 99:59:59.999 --> 99:59:59.999 all of that points to examples of where we 99:59:59.999 --> 99:59:59.999 are getting it right and in stark contrast 99:59:59.999 --> 99:59:59.999 where the areas where we are 99:59:59.999 --> 99:59:59.999 egregiously getting it wrong 99:59:59.999 --> 99:59:59.999 and just very recently I have led 99:59:59.999 --> 99:59:59.999 my organization's involvement in 99:59:59.999 --> 99:59:59.999 a petition to US Dept of Health and Human 99:59:59.999 --> 99:59:59.999 Services demanding that people with 99:59:59.999 --> 99:59:59.999 disabilities be immediately relocated 99:59:59.999 --> 99:59:59.999 out of nursing homes and other congregate 99:59:59.999 --> 99:59:59.999 settings due to the 99:59:59.999 --> 99:59:59.999 horrific circumstances in those congregate 99:59:59.999 --> 99:59:59.999 settings due to covid-19 99:59:59.999 --> 99:59:59.999 and the failure to provide appropriate protections 99:59:59.999 --> 99:59:59.999 for people with disabilities 99:59:59.999 --> 99:59:59.999 in institutional settings 99:59:59.999 --> 99:59:59.999 the ADA back in 1990 99:59:59.999 --> 99:59:59.999 very clearly gave people with 99:59:59.999 --> 99:59:59.999 disabilities significant rights, and 99:59:59.999 --> 99:59:59.999 even when challenged in 1999 the Olmstead 99:59:59.999 --> 99:59:59.999 case, which was a Georgia case, two women 99:59:59.999 --> 99:59:59.999 Lois and Elaine, Lois Curtiss 99:59:59.999 --> 99:59:59.999 an incredible woman I had the 99:59:59.999 --> 99:59:59.999 pleasure of being with on a number 99:59:59.999 --> 99:59:59.999 of occasions, the two of them 99:59:59.999 --> 99:59:59.999 demanded that they had a right to live in 99:59:59.999 --> 99:59:59.999 the most integrated setting 99:59:59.999 --> 99:59:59.999 most appropriate to their needs, 99:59:59.999 --> 99:59:59.999 and the decision, the case went 99:59:59.999 --> 99:59:59.999 all the way to the Supreme Court 99:59:59.999 --> 99:59:59.999 and I was among those who 99:59:59.999 --> 99:59:59.999 slept outside the Supreme Court the night 99:59:59.999 --> 99:59:59.999 before their case was heard 99:59:59.999 --> 99:59:59.999 and I was among 99:59:59.999 --> 99:59:59.999 the folks who celebrated out in front of 99:59:59.999 --> 99:59:59.999 the Supreme Court the day that case came 99:59:59.999 --> 99:59:59.999 down in favor of Lois and Elaine's right, 99:59:59.999 --> 99:59:59.999 and the rights of 10s of 1000's, 99:59:59.999 --> 99:59:59.999 millions of people with 99:59:59.999 --> 99:59:59.999 disabilities to live in the most 99:59:59.999 --> 99:59:59.999 integrated setting 99:59:59.999 --> 99:59:59.999 appropriate to their needs. Given 99:59:59.999 --> 99:59:59.999 we are 21 years after that decision, 99:59:59.999 --> 99:59:59.999 yesterday American Civil Liberties Union 99:59:59.999 --> 99:59:59.999 submitted 99:59:59.999 --> 99:59:59.999 a petition and the World Institute of 99:59:59.999 --> 99:59:59.999 Disability joined a number of 99:59:59.999 --> 99:59:59.999 other disability 99:59:59.999 --> 99:59:59.999 organizations in bringing that petition 99:59:59.999 --> 99:59:59.999 demanding that people with disabilities 99:59:59.999 --> 99:59:59.999 immediately be relocated 99:59:59.999 --> 99:59:59.999 out of these congregate settings 99:59:59.999 --> 99:59:59.999 10s of 1000's of people have died in 99:59:59.999 --> 99:59:59.999 the last 100 days, the genocide 99:59:59.999 --> 99:59:59.999 of people with disabilities because of 99:59:59.999 --> 99:59:59.999 the failures of implementation of that 99:59:59.999 --> 99:59:59.999 Olmstead decision and the failures of our 99:59:59.999 --> 99:59:59.999 government to provide the kind of supports 99:59:59.999 --> 99:59:59.999 and services that enable 99:59:59.999 --> 99:59:59.999 people with disabilities 99:59:59.999 --> 99:59:59.999 to live safely and with the support they 99:59:59.999 --> 99:59:59.999 need in place in the community 99:59:59.999 --> 99:59:59.999 and, very infuriatingly our consistently 99:59:59.999 --> 99:59:59.999 persistent calls for 99:59:59.999 --> 99:59:59.999 people with disabilities to be 99:59:59.999 --> 99:59:59.999 adequately served in these, in these 99:59:59.999 --> 99:59:59.999 disasters have been ignored, and again 99:59:59.999 --> 99:59:59.999 the bottom line has been that the last 100 99:59:59.999 --> 99:59:59.999 days 10s of 1000's of people with 99:59:59.999 --> 99:59:59.999 disabilities have died. And when I was 99:59:59.999 --> 99:59:59.999 called on, saying that those were 99:59:59.999 --> 99:59:59.999 people with disabilities I have had 99:59:59.999 --> 99:59:59.999 conversations with a number of senior 99:59:59.999 --> 99:59:59.999 government officials who, like, why are 99:59:59.999 --> 99:59:59.999 you saying people with disabilities? And 99:59:59.999 --> 99:59:59.999 you know, these were old people with 99:59:59.999 --> 99:59:59.999 underlying conditions living in nursing 99:59:59.999 --> 99:59:59.999 homes and in long term care facilities. 99:59:59.999 --> 99:59:59.999 Well you don't go to a nursing home 99:59:59.999 --> 99:59:59.999 because you're old, you go to a nursing 99:59:59.999 --> 99:59:59.999 home because you have a disability and the 99:59:59.999 --> 99:59:59.999 supports and services you need to stay in 99:59:59.999 --> 99:59:59.999 the community have not been given to you. 99:59:59.999 --> 99:59:59.999 And the vast majority, some would say, all of 99:59:59.999 --> 99:59:59.999 those deaths in congregate settings are 99:59:59.999 --> 99:59:59.999 people with disabilities, most of them 99:59:59.999 --> 99:59:59.999 black and brown and people living in 99:59:59.999 --> 99:59:59.999 poverty. And the failures of Americans 99:59:59.999 --> 99:59:59.999 with Disabilities Act, the Olmstead 99:59:59.999 --> 99:59:59.999 decision, and our government's 99:59:59.999 --> 99:59:59.999 will to monitor and enforce this law 99:59:59.999 --> 99:59:59.999 and the rehabilitation act have a 99:59:59.999 --> 99:59:59.999 devastating impact on where we are today. 99:59:59.999 --> 99:59:59.999 And the death of many of our siblings. 99:59:59.999 --> 99:59:59.999 Without any end in sight. 99:59:59.999 --> 99:59:59.999 Thank you Marcie, Ok. So next on to the 99:59:59.999 --> 99:59:59.999 future, with the work that you've been 99:59:59.999 --> 99:59:59.999 doing you've seen a lot of progress 99:59:59.999 --> 99:59:59.999 and barriers. If you could pick one thing 99:59:59.999 --> 99:59:59.999 to change or that needs to occur to have 99:59:59.999 --> 99:59:59.999 access and equality--I know that's hard 99:59:59.999 --> 99:59:59.999 --one thing to have equality and access 99:59:59.999 --> 99:59:59.999 present in the lives of people with 99:59:59.999 --> 99:59:59.999 disabilities what would that be? 99:59:59.999 --> 99:59:59.999 The one thing that must happen: 99:59:59.999 --> 99:59:59.999 people with disabilities have civil rights 99:59:59.999 --> 99:59:59.999 protections by law and the one thing 99:59:59.999 --> 99:59:59.999 that must happen 99:59:59.999 --> 99:59:59.999 is that their rights are monitored and 99:59:59.999 --> 99:59:59.999 enforced without exception. Following 99:59:59.999 --> 99:59:59.999 the law is not enough, we need universal 99:59:59.999 --> 99:59:59.999 design to be the standard we need 99:59:59.999 --> 99:59:59.999 accessibility and accommodation 99:59:59.999 --> 99:59:59.999 to be readily available but we must have 99:59:59.999 --> 99:59:59.999 monitoring and enforcement. Every 99:59:59.999 --> 99:59:59.999 federal dollar is supposed to be spent in 99:59:59.999 --> 99:59:59.999 compliance with the rehabilitation act 99:59:59.999 --> 99:59:59.999 and between the Rehab Act and the ADA 99:59:59.999 --> 99:59:59.999 they require, their should be, no 99:59:59.999 --> 99:59:59.999 rue for those people with civil rights 99:59:59.999 --> 99:59:59.999 protections to be repeatedly denied 99:59:59.999 --> 99:59:59.999 and unable to fully participate 99:59:59.999 --> 99:59:59.999 in home and community life. Monitoring 99:59:59.999 --> 99:59:59.999 and enforcement must be the floor 99:59:59.999 --> 99:59:59.999 I have a ceiling but enforcing 99:59:59.999 --> 99:59:59.999 these civil rights laws is absolutely 99:59:59.999 --> 99:59:59.999 the floor. Thank you. What can we do? 99:59:59.999 --> 99:59:59.999 What can we as community members 99:59:59.999 --> 99:59:59.999 take right now? So what we can do right 99:59:59.999 --> 99:59:59.999 now is, you know, one of my favorite 99:59:59.999 --> 99:59:59.999 sayings, "never give up, never give in" 99:59:59.999 --> 99:59:59.999 another of my favorites, "nothing about us 99:59:59.999 --> 99:59:59.999 without us" we as disability community 99:59:59.999 --> 99:59:59.999 leaders need to stick together, we need to 99:59:59.999 --> 99:59:59.999 center our work around people who are 99:59:59.999 --> 99:59:59.999 multiply marginalized, excluded 99:59:59.999 --> 99:59:59.999 we need to be sure that we are not wasting 99:59:59.999 --> 99:59:59.999 our time with infighting and with 99:59:59.999 --> 99:59:59.999 a kind of divisive childish behavior that 99:59:59.999 --> 99:59:59.999 some folks are still stuck in engaging in 99:59:59.999 --> 99:59:59.999 we absolutely must reach a hand forward 99:59:59.999 --> 99:59:59.999 reach a hand back stick together 99:59:59.999 --> 99:59:59.999 and continue relentlessly to work 99:59:59.999 --> 99:59:59.999 towards the realization of the goal 99:59:59.999 --> 99:59:59.999 that the ADA was written around and so 99:59:59.999 --> 99:59:59.999 many of our siblings have fought so very 99:59:59.999 --> 99:59:59.999 hard for. We've lost a bunch of those 99:59:59.999 --> 99:59:59.999 hardworking visionary leaders; many of them 99:59:59.999 --> 99:59:59.999 have been lost in recent years, some of them 99:59:59.999 --> 99:59:59.999 have been lost along the way, we have an 99:59:59.999 --> 99:59:59.999 incredible legacy to care for, we have 99:59:59.999 --> 99:59:59.999 huge opportunities to work towards 99:59:59.999 --> 99:59:59.999 technology has the potential for leveling 99:59:59.999 --> 99:59:59.999 the playing field if in fact people have 99:59:59.999 --> 99:59:59.999 real access and the World Institute on 99:59:59.999 --> 99:59:59.999 Disability and our commitment to 99:59:59.999 --> 99:59:59.999 work in partnership with other 99:59:59.999 --> 99:59:59.999 disability lead organizations and 99:59:59.999 --> 99:59:59.999 our allies to make communities 99:59:59.999 --> 99:59:59.999 stronger, more resilient for the whole 99:59:59.999 --> 99:59:59.999 community because when we get it right 99:59:59.999 --> 99:59:59.999 for people with disabilities I think 99:59:59.999 --> 99:59:59.999 the whole community not only benefits 99:59:59.999 --> 99:59:59.999 but is stronger for our leadership, our 99:59:59.999 --> 99:59:59.999 contributions, our expertise in 99:59:59.999 --> 99:59:59.999 what it takes to make daily life work for 99:59:59.999 --> 99:59:59.999 everybody. Excellent, thank you.