WEBVTT 00:00:00.322 --> 00:00:03.582 You'll see in the corner the record button 00:00:04.059 --> 00:00:06.079 So you should see that it's recording now, 00:00:06.379 --> 00:00:07.140 and I am going to mute myself 00:00:07.140 --> 00:00:08.820 and you'll go ahead and do your intro. 00:00:08.864 --> 00:00:09.574 Thank you Marcie. 00:00:14.104 --> 00:00:16.044 Hi there, I'm Marcie Roth 00:00:16.552 --> 00:00:22.620 And I have been working in disability rights 00:00:22.872 --> 00:00:26.392 For my whole adult life, 00:00:26.405 --> 00:00:31.641 And actually, since I was a freshman in high school 00:00:32.347 --> 00:00:42.425 I am currently the executive director and CEO of the World Institute on Disability 00:00:42.817 --> 00:00:53.167 And I have been working over the years in services 00:00:53.167 --> 00:00:59.397 for people living in residential programs early 00:00:59.397 --> 00:01:04.537 in my career with people in, 00:01:06.225 --> 00:01:08.035 Children in school settings, 00:01:10.322 --> 00:01:14.322 people in vocational rehabilitation, 00:01:14.686 --> 00:01:22.917 and then people in community living environments, 00:01:23.417 --> 00:01:29.837 then along the way, I became very involved in disability rights 00:01:30.667 --> 00:01:40.857 and very involved in the early days of advocacy 00:01:40.857 --> 00:01:44.857 before the ADA was introduced. 00:01:46.191 --> 00:01:54.651 And then I worked for disability advocacy organizations almost ever since. 00:01:56.000 --> 00:01:58.120 In addition to my own disability, 00:01:58.120 --> 00:02:03.160 I'm also the parent of two now adults with 00:02:03.160 --> 00:02:08.610 disabilities. My husband also has a disability, 00:02:09.059 --> 00:02:17.219 and much of my family also happen to be people with disabilities 00:02:17.219 --> 00:02:27.444 so disability rights is just a part of everything I am and most everything I do. 00:02:27.998 --> 00:02:41.318 I did spend from 2001 and onward focusing very much 00:02:41.318 --> 00:02:44.118 on what happens for people with disabilities 00:02:44.582 --> 00:02:46.772 before, during, and after disasters. 00:02:47.327 --> 00:02:54.288 And that's been a real particular laser focus of mine ever since, 00:02:55.184 --> 00:02:57.424 and in fact, I've had the opportunity 00:02:57.948 --> 00:03:01.948 as an appointee in the Obama administration 00:03:02.472 --> 00:03:08.160 to spend just about 8 years at FEMA, 00:03:09.231 --> 00:03:13.623 establishing FEMA's Office of Disability Integration Coordination, 00:03:14.124 --> 00:03:23.140 and building a cadre of disability experts 00:03:23.371 --> 00:03:27.191 focusing on supporting governors 00:03:27.283 --> 00:03:34.732 and emergency managers and most particularly 00:03:34.732 --> 00:03:38.732 engaging people with disabilities and disability organizations 00:03:39.481 --> 00:03:42.320 in emergency preparedness 00:03:42.680 --> 00:03:46.680 and throughout disaster response recover and mitigation. 00:03:47.672 --> 00:03:54.002 So one last piece since I've been with 00:03:54.002 --> 00:03:59.152 the World Institute on Disabilities since last September, 00:04:00.558 --> 00:04:06.555 my ongoing focus on global disability rights 00:04:06.555 --> 00:04:10.555 has really been something that I've had 00:04:10.946 --> 00:04:15.226 much more opportunity to be actively 00:04:15.552 --> 00:04:25.612 involved in and I have spent the time since joining 00:04:25.612 --> 00:04:32.131 with building a strategic planning process 00:04:32.479 --> 00:04:42.629 and supporting the organization to establish new priorities 00:04:44.255 --> 00:04:46.625 taking a look at the organizations mission 00:04:47.107 --> 00:04:53.947 and very recently establishing four particular areas of focus 00:04:54.173 --> 00:04:57.553 for the organization as we move forward. 00:04:59.294 --> 00:05:02.034 Thank you Marcie. Excellent, okay 00:05:02.088 --> 00:05:06.318 I apologize that my neighbor is chipping a lot of brush today, 00:05:06.318 --> 00:05:09.058 so it's making extra sound whenever I unmute 00:05:09.058 --> 00:05:12.338 but don't worry, it won't interfere with your recording. 00:05:12.890 --> 00:05:15.880 Okay, so the first question is about the past. 00:05:15.880 --> 00:05:18.580 So tell your first memory realizing that there were 00:05:18.580 --> 00:05:23.020 accessibility issues, discrimination, or lack of inclusion. 00:05:23.435 --> 00:05:25.265 What is your personal story or connection 00:05:25.265 --> 00:05:27.611 to the American's with Disabilities Act? 00:05:27.791 --> 00:05:31.470 What do you remember about the day that it was signed, if applicable? 00:05:31.737 --> 00:05:35.007 And what was the impact on you and on others? 00:05:35.007 --> 00:05:38.657 Remember to tap something that the camera shifts to you 00:05:38.723 --> 00:05:42.723 before you start. 00:05:44.715 --> 00:05:55.435 I first became aware of disability at a very young age. 00:05:55.537 --> 00:06:01.887 I had a best friend in first grade, his name was Gregory, 00:06:02.407 --> 00:06:09.637 and he and I were just wonderful friends 00:06:09.637 --> 00:06:12.747 We spent a lot of time together, and then 00:06:12.747 --> 00:06:16.147 all of the sudden one day, Gregory was gone, 00:06:16.735 --> 00:06:24.010 and I didn't know what happened to him or where he went 00:06:24.424 --> 00:06:26.554 and it wasn't until many years later 00:06:27.012 --> 00:06:32.778 that I found out that Gregory had Down Syndrome, 00:06:32.938 --> 00:06:36.938 and he had been removed from my Kindergarten class, 00:06:37.435 --> 00:06:40.199 and first grade I think it was at that point, 00:06:40.845 --> 00:06:46.920 and apparently he had been sent to some other school somewhere. 00:06:48.216 --> 00:06:57.846 And the loss of his friendship was pretty surprising 00:06:59.482 --> 00:07:04.012 and I didn't understand, you know, where he went. 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 00:07:09.710 --> 00:07:14.550 cause he didn't move away, he just stopped going to my school. 00:07:15.868 --> 00:07:19.868 But, I... 00:07:21.555 --> 00:07:31.847 I remember just being confused and then over the next number of years, 00:07:32.749 --> 00:07:40.567 I lived in a town that was also the home of Save the Children. 00:07:40.567 --> 00:07:47.447 And I was always very interested in the work 00:07:47.447 --> 00:07:51.447 that Save the Children was doing, and I am 00:07:51.977 --> 00:07:55.425 embarrassed to admit that my earliest 00:07:55.708 --> 00:08:06.688 involvement in humanitarian work was from a, you know a very charity-model approach. 00:08:07.747 --> 00:08:13.897 I spent a lot of my childhood raising 00:08:13.897 --> 00:08:17.581 money for Save the Children, and getting 00:08:17.581 --> 00:08:25.751 involved in other activities that were very 00:08:25.751 --> 00:08:34.979 much following the charity-pity model and certainly not a model 00:08:39.500 --> 00:08:46.371 of making space for and supporting and lifting up 00:08:46.985 --> 00:08:50.185 other people with disabilities. 00:08:51.592 --> 00:08:59.262 The on set of my disability wasn't until many years later, 00:08:59.262 --> 00:09:03.462 but when I was in high school, I had a 00:09:04.730 --> 00:09:17.340 requirement to do community service and I 00:09:17.340 --> 00:09:21.340 had an opportunity to do, had an obligation 00:09:21.571 --> 00:09:24.411 to do community service and we started off. 00:09:25.318 --> 00:09:30.209 This was the year of the first Earth Day 00:09:30.209 --> 00:09:34.469 and I started crushing glass at the local 00:09:34.469 --> 00:09:38.469 recycling center. It turned out that it 00:09:38.469 --> 00:09:44.739 was really boring but lots of my classmates 00:09:45.152 --> 00:09:51.712 were volunteering at a state institution 00:09:51.712 --> 00:09:59.262 for people with disabilities and I joined them 00:09:59.262 --> 00:10:06.238 once a week, looking back on it again it was 00:10:06.380 --> 00:10:10.540 pretty shocking at 13 years old I was 00:10:10.540 --> 00:10:15.440 assigned as the teacher of a classroom 00:10:15.440 --> 00:10:18.500 of 30 adults who had never had the 00:10:18.500 --> 00:10:23.370 opportunity to attend school and now had 00:10:23.370 --> 00:10:27.370 a 13 year old teacher once a week. 00:10:28.035 --> 00:10:32.125 Needless to say, I learned way more from them 00:10:32.125 --> 00:10:36.125 then they learned from me, but we had a lot of fun 00:10:36.125 --> 00:10:46.545 and many of them became friends, you know, very much along the rest of my path. 00:10:48.325 --> 00:10:52.195 Unfortunately, some of them are no longer alive 00:10:52.195 --> 00:10:55.885 but there are a couple of people who are 00:10:55.885 --> 00:10:59.947 still very much apart of my life, and 00:11:01.233 --> 00:11:05.867 fortunately they were successful in 00:11:05.867 --> 00:11:09.077 liberating themselves from that state 00:11:09.077 --> 00:11:13.699 institution and so, they and many others 00:11:13.699 --> 00:11:21.039 taught me a lot but the real pivotal 00:11:20.921 --> 00:11:25.939 experience for me, I was working back at 00:11:25.939 --> 00:11:32.229 that state institution. This was my first paid job 00:11:33.196 --> 00:11:36.006 in disability services and I had been 00:11:36.006 --> 00:11:41.666 hired to work in what was called a cottage, for 00:11:41.666 --> 00:11:45.666 40 women with intellectual disabilities. 00:11:46.446 --> 00:11:53.959 This cottage was on beautiful ground, but 00:11:53.959 --> 00:11:56.533 the women lived in a building with 20 on 00:11:56.533 --> 00:11:58.723 one side and 20 on the other side. 00:11:59.591 --> 00:12:04.277 My responsibilities included assisting them 00:12:04.811 --> 00:12:10.243 in bathing and getting dressed and eating 00:12:10.321 --> 00:12:16.954 many of them were unable to feed themselves 00:12:20.061 --> 00:12:22.358 some because they never been given 00:12:22.358 --> 00:12:24.178 the opportunity and others because of 00:12:24.178 --> 00:12:27.798 their physical disability and a lack of any 00:12:27.798 --> 00:12:40.210 supportive or adaptive utensils or other equipment, 00:12:40.495 --> 00:12:48.754 so as I was feeding people it was the same every day. 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 00:12:58.038 --> 00:12:59.947 One mound was always green 00:12:59.947 --> 00:13:06.888 One mound was always white, you know the meat 00:13:07.337 --> 00:13:17.638 the vegetable, and the starch, and I know that 00:13:17.638 --> 00:13:24.374 people like to eat their meals different ways, there would 00:13:24.374 --> 00:13:31.054 also be a dessert everyday, a jello, ice cream again in a mound. 00:13:31.211 --> 00:13:40.159 I would spend time with each of the individuals 00:13:40.159 --> 00:13:47.332 who were having their meal, and would sort of be kind of working 00:13:47.332 --> 00:13:49.616 together trying to figure out, did they 00:13:49.616 --> 00:13:55.064 prefer to eat their desert first? 00:13:55.353 --> 00:13:58.629 And people like to do that, did they prefer 00:13:58.629 --> 00:14:01.989 a little bit of brown and a little bit of white 00:14:02.252 --> 00:14:04.425 all on the same fork? Did they not want 00:14:04.425 --> 00:14:08.700 them touching, and you know I would sort of 00:14:08.700 --> 00:14:11.320 work back and forth with them to try to 00:14:11.320 --> 00:14:15.320 figure out what their preference was and 00:14:15.444 --> 00:14:18.031 I got in trouble because I was spending 00:14:18.131 --> 00:14:25.650 to much time and ultimately, I was moved 00:14:25.650 --> 00:14:30.684 to a different position because I was taking 00:14:30.684 --> 00:14:33.078 to much time giving people and 00:14:33.078 --> 00:14:36.834 opportunity to make some choices and 00:14:36.834 --> 00:14:42.167 express some preferences. That was extremely 00:14:42.167 --> 00:14:47.406 pivotal and in many ways, you know, those early 00:14:47.406 --> 00:14:56.716 early experiences, have really, totally driven who I am 00:14:56.716 --> 00:15:00.716 and what I believe all of these years later. 00:15:02.577 --> 00:15:06.466 In terms of the American's with Disabilities Act 00:15:07.301 --> 00:15:13.231 I had very close personal experience with 00:15:13.231 --> 00:15:18.976 what was then called public law 94142: 00:15:19.098 --> 00:15:23.658 The Education of All Handicaps Act, 00:15:24.449 --> 00:15:27.609 later on renamed The Individuals with 00:15:27.609 --> 00:15:32.769 Disabilities Act, IDEA and I had a very personal 00:15:32.769 --> 00:15:38.959 family experience with IDEA and became aware 00:15:38.959 --> 00:15:48.585 of legislative initiatives, and how the IDEA had just been passed. 00:15:48.585 --> 00:15:57.888 Then I started to become more aware of the work 00:15:57.888 --> 00:16:03.308 being done, this was back int he 70's. Working 00:16:03.308 --> 00:16:10.608 being done on some other legislative initatives, the 504 00:16:11.396 --> 00:16:19.596 The Passage of Rehabilitation Act, followed by the 504 00:16:19.596 --> 00:16:25.236 sit-in in San Francisco to get the 00:16:25.469 --> 00:16:33.154 regulations put in place. That really caught my attention, 00:16:33.154 --> 00:16:41.600 between the little bits of information I was getting there 00:16:41.600 --> 00:16:50.122 and the work I was doing and then becoming a full time 00:16:50.122 --> 00:16:53.488 advocate, going to work for an independent 00:16:53.488 --> 00:17:00.430 living center in 1982, I then became extremely 00:17:00.430 --> 00:17:10.207 involved in systems change and how to develop 00:17:10.207 --> 00:17:14.202 policy, how to organize, how to support 00:17:14.202 --> 00:17:20.749 the rights, voices and preferences of other 00:17:20.749 --> 00:17:27.980 people and because I lived in Connecticut and the 00:17:27.980 --> 00:17:33.158 original author of the American's with 00:17:33.158 --> 00:17:35.833 Disabilities Act, the first time the bill 00:17:35.833 --> 00:17:39.237 was introduced was senator Will Weiker 00:17:39.237 --> 00:17:44.674 of Connecticut and Senator Weiker, father 00:17:44.674 --> 00:17:51.125 of a great young man who had Down Syndrome 00:17:51.125 --> 00:17:58.747 Senator Welker was very involved with 00:17:58.747 --> 00:18:04.160 the disability advocacy community in Connecticut 00:18:04.160 --> 00:18:10.175 and I then had the incredible opportunity to 00:18:10.175 --> 00:18:15.850 go to Boston and testify and on of the 00:18:15.850 --> 00:18:22.937 Congressman Major Owens field of hearings 00:18:22.937 --> 00:18:26.438 on the American's with Disabilities Act so 00:18:26.438 --> 00:18:30.227 of course that first time around the bill 00:18:30.227 --> 00:18:36.597 didn't pass. But boy oh boy, were we revved up 00:18:36.597 --> 00:18:47.427 in the passage of the ADA, in the period of which 00:18:47.427 --> 00:18:49.506 once the bill was reintroduced 00:18:49.506 --> 00:18:56.312 and folks were organizing, I remember that we had 00:18:56.312 --> 00:19:01.600 stacks and stacks and stacks of bright pink 00:19:01.600 --> 00:19:08.999 post cards, and we were organizing folks across the state 00:19:08.999 --> 00:19:16.459 to develop, to sign those post cards supporting 00:19:16.459 --> 00:19:27.191 passage of the ADA and then, this was sort 00:19:27.191 --> 00:19:33.162 of a wonderful but maybe a miss leading experience 00:19:33.162 --> 00:19:37.074 we actually were successful! The bill got 00:19:37.074 --> 00:19:44.015 passed, I remember thinking oh well this wasn't that hard, 00:19:44.015 --> 00:19:48.576 we had to go at it twice but this wasn't so hard! 00:19:48.576 --> 00:19:51.670 Let's take on some more legislation. So 00:19:51.670 --> 00:19:57.601 turns out it wasn't as easy as it looked to me 00:19:57.601 --> 00:20:04.716 It wasn't just about hot pink post cards, and meetings, and marches 00:20:04.716 --> 00:20:10.134 that all helped but even that sometimes 00:20:10.134 --> 00:20:18.164 these days doesn't seem to be enough to change policy. 00:20:18.164 --> 00:20:28.621 That's my earliest journey to 1990. 00:20:30.471 --> 00:20:34.226 Thank you Marcie, okay were going to present now 00:20:34.226 --> 00:20:38.792 just so you know I do have another interview at 2 00:20:38.792 --> 00:20:43.729 we are going to have three more sections. 00:20:43.729 --> 00:20:45.957 The present, the future and the call to 00:20:45.957 --> 00:20:50.148 action, so just to pace yourself within those 00:20:50.148 --> 00:20:54.167 So the present, has the ADA made a difference? 00:20:54.167 --> 00:20:56.627 Tell us about your "Aha" moment that told you 00:20:56.627 --> 00:20:59.137 that the ADA is or is not making a difference 00:20:59.137 --> 00:21:01.990 and to what extent based on your passions 00:21:01.990 --> 00:21:04.570 and area of expertise, where you see or 00:21:04.570 --> 00:21:08.271 not see the impact of the ADA. 00:21:08.901 --> 00:21:18.601 So the ADA has had a huge and sweeping impact 00:21:18.601 --> 00:21:27.433 and I... Its important for me to begin as I talk about 00:21:27.433 --> 00:21:32.498 the present day as were embarking on ADA 30. 00:21:32.498 --> 00:21:37.107 Its really important to start with, how 00:21:37.107 --> 00:21:47.177 much things absolutely have changed, and certainly some 00:21:47.177 --> 00:21:50.889 of the architectural barrier removal efforts 00:21:50.889 --> 00:21:56.217 some of the significant improvements in 00:21:56.217 --> 00:22:00.622 effective, equally effective communication 00:22:00.622 --> 00:22:05.269 some of the requirements around programs 00:22:05.269 --> 00:22:13.584 All of those have significantly changed 00:22:13.584 --> 00:22:18.873 most, I can't even say most of the time... often. 00:22:18.873 --> 00:22:21.753 There have been many great initiatives 00:22:21.753 --> 00:22:29.707 over the years, but we always had to 00:22:29.707 --> 00:22:38.200 maintain a relentless battle to, to not let 00:22:38.200 --> 00:22:44.254 anything slip, to not lose and sort of momentum, 00:22:44.254 --> 00:22:53.846 towards accessibility. If we look away for 00:22:53.846 --> 00:22:57.695 a minute, our rights will be swept away 00:22:57.695 --> 00:23:01.703 from us, I can certainly talk about the 00:23:01.703 --> 00:23:09.710 very present day, and what I have to say 00:23:09.710 --> 00:23:16.323 about where we are today, is not 00:23:16.323 --> 00:23:19.844 great, so I do want to take a little bit 00:23:19.844 --> 00:23:25.348 more time to call out the significant 00:23:25.348 --> 00:23:36.824 progress in so many aspects of daily life, 00:23:36.824 --> 00:23:47.369 in which we can call out failures of ADA 00:23:47.369 --> 00:23:53.228 compliance, enforcement of the law. 00:23:53.228 --> 00:24:02.036 But it is often times in comparison to 00:24:02.036 --> 00:24:05.574 the examples of where it's working. 00:24:05.574 --> 00:24:10.424 So when transportation is not accessible 00:24:10.424 --> 00:24:17.515 we're calling it out because we know the 00:24:17.515 --> 00:24:22.841 good and the promising practices that have 00:24:22.841 --> 00:24:28.303 been in place for transportation accesabilty 00:24:28.303 --> 00:24:34.637 Make the failures so much more egregious. 00:24:34.637 --> 00:24:41.911 In housing, in employment, in the kinds 00:24:41.911 --> 00:24:48.796 of assistive devices that are available 00:24:48.796 --> 00:24:56.217 the universal design of places and things, 00:24:56.217 --> 00:25:08.506 all of that points to the examples of where 00:25:08.506 --> 00:25:14.156 we are getting it right, In stark contrast 00:25:14.156 --> 00:25:17.509 the areas where we are getting it egreigously 00:25:17.509 --> 00:25:22.158 getting it wrong. I have to say that 00:25:22.158 --> 00:25:34.775 just very recently, I have lead my 00:25:34.775 --> 00:25:40.961 organization involvement in a petition to 00:25:40.961 --> 00:25:44.824 the U.S Department of Health and Human 00:25:44.824 --> 00:25:48.930 Services, demanding that people with 00:25:48.930 --> 00:25:53.475 disabilities be immediately located 00:25:53.475 --> 00:25:58.815 out of nursing homes and other congregate 00:25:58.815 --> 00:26:08.053 settings due to the horrific circumstances 00:26:08.053 --> 00:26:14.529 in those congregate settings, to Covid-19 00:26:14.529 --> 00:26:22.390 and the failure to provide appropriate 00:26:22.390 --> 00:26:25.791 protections for people with disabilities 00:26:25.791 --> 00:26:35.481 and institutional settings. The ADA back in 1990 00:26:35.481 --> 00:26:41.783 very clearly gave people with disabilities 00:26:41.783 --> 00:26:53.050 significant rights, and even when 00:26:53.050 --> 00:27:06.944 challenged in 1999, the homestead case 00:27:06.944 --> 00:27:13.128 which was a Georgia case, and two women 00:27:13.128 --> 00:27:19.373 who Lois and Elaine, Lois Curtis an 00:27:19.373 --> 00:27:21.037 incredible woman, I have had the 00:27:21.037 --> 00:27:25.183 pleasure of being with on a number of 00:27:25.183 --> 00:27:33.017 occasions. The two of them demanded that 00:27:33.017 --> 00:27:36.896 they had a right to live in the most intergraded 00:27:36.896 --> 00:27:39.580 setting appropriate to their needs. 00:27:39.580 --> 00:27:46.175 The decision, the case went all the way to 00:27:46.175 --> 00:27:53.014 the Supreme Court, and I was among 00:27:53.014 --> 00:27:56.936 those who slept out on the steps of 00:27:56.936 --> 00:28:00.195 the Supreme Court on the night before 00:28:00.195 --> 00:28:04.343 their case was heard. I was among the 00:28:04.343 --> 00:28:08.067 folks who celebrated out in front of the 00:28:08.067 --> 00:28:11.204 Supreme Court on the day that decision 00:28:11.204 --> 00:28:15.206 came down in favor of Lois and Elaine 00:28:15.206 --> 00:28:19.450 right and the rights of thousands, tens of 00:28:19.450 --> 00:28:23.452 thousands, millions of people with 00:28:23.452 --> 00:28:28.365 disabilities to be, to live in the most 00:28:28.365 --> 00:28:29.860 intergraded setting appropriate to their 00:28:29.860 --> 00:28:36.254 needs. Given that we are 21 years after 00:28:36.254 --> 00:28:41.292 that decision, yesterday the American 00:28:41.292 --> 00:28:46.401 Civil Liberties Union submitted a petition 00:28:46.401 --> 00:28:49.416 and the World Institute on Disability joined 00:28:49.416 --> 00:28:52.533 a number of disability organizations 00:28:52.533 --> 00:28:58.858 in a bringing that petition, demanding 00:28:58.858 --> 00:29:04.296 that people with disabilities be immediately 00:29:04.296 --> 00:29:10.012 relocated out of these congregate settings. 00:29:10.012 --> 00:29:15.385 Tens of thousands of people have died 00:29:15.385 --> 00:29:20.495 in the last hundred days, the genocide of 00:29:20.495 --> 00:29:23.931 people with disabilities because of the 00:29:23.931 --> 00:29:28.176 failures of implementation of that 00:29:28.176 --> 00:29:33.995 homestead decision and the failures of our 00:29:33.995 --> 00:29:39.825 government to provide that kind of support 00:29:39.825 --> 00:29:44.286 and services that enable people with disabilities 00:29:44.286 --> 00:29:49.182 to live safely and and with the support 00:29:49.182 --> 00:29:51.385 they need in place in the community, 00:29:51.385 --> 00:30:02.638 very infuriatingly, our continued persistent 00:30:02.638 --> 00:30:09.043 call for people with disabilities to be 00:30:09.043 --> 00:30:15.225 adequately served in these disasters 00:30:15.225 --> 00:30:19.042 have been ignored and the bottom line 00:30:19.042 --> 00:30:25.849 has been that again, over the last hundred days 00:30:25.849 --> 00:30:29.730 tens of thousands of people with disabilities 00:30:29.730 --> 00:30:33.024 have died, and when I was called on 00:30:33.024 --> 00:30:37.184 saying that those were people with disabilities 00:30:37.184 --> 00:30:40.427 I have had conversations with a number of 00:30:40.427 --> 00:30:43.584 senior government officials who, 00:30:43.584 --> 00:30:49.409 "why are you saying people with disabilities" 00:30:49.409 --> 00:30:55.830 these were old people with underlying conditions 00:30:55.830 --> 00:31:01.196 living in nursing homes, and long term care 00:31:01.196 --> 00:31:03.725 facilities, look you don't go to a nursing home 00:31:03.725 --> 00:31:07.078 because you are old. You go to a nursing home because 00:31:07.078 --> 00:31:09.160 you have a disability and the supports and 00:31:09.160 --> 00:31:12.537 services you need to stay in the community 00:31:12.537 --> 00:31:17.089 have not been given to you, and that majority 00:31:17.089 --> 00:31:23.368 of some would say of all those deaths in 00:31:23.368 --> 00:31:27.218 congregate facilites are people with disabilities. 00:31:27.218 --> 00:31:33.365 Most of them black and brown and people 00:31:33.365 --> 00:31:40.082 living in poverty, and the failures of 00:31:40.082 --> 00:31:46.249 American's with Disabilities Act, the homestead decision and 00:31:46.249 --> 00:31:53.348 our governments will to monitor and force 00:31:53.348 --> 00:31:58.300 this law and the rehabilitation act have a 00:31:58.300 --> 00:32:02.838 devastating impact on where we are today 00:32:02.838 --> 00:32:06.918 and the depth of many of our siblings, 00:32:06.918 --> 00:32:09.743 Without out end in sight. 00:32:12.183 --> 00:32:16.940 Thank you Marcie, okay so next onto the 00:32:16.940 --> 00:32:19.956 future. With the work you have been doing 00:32:19.956 --> 00:32:22.855 you have seen a lot in terms of progress and barriers. 00:32:22.855 --> 00:32:26.057 If you could pick one thing to change or that needs 00:32:26.057 --> 00:32:28.269 to occur to have access and equality, 00:32:28.269 --> 00:32:32.037 I know that is hard, one thing. To have 00:32:32.037 --> 00:32:34.275 access and equality present in the lives 00:32:34.275 --> 00:32:37.592 of people with disabilities, what would that be? 00:32:37.592 --> 00:32:44.525 The one thing that must happen 00:32:44.525 --> 00:32:50.323 people with disabilities have civil rights 00:32:50.323 --> 00:32:57.455 protections by law. The one thing that must happen 00:32:57.455 --> 00:33:05.464 is that their rights are monitored and enforced 00:33:05.464 --> 00:33:12.097 without exception. Following the law is not 00:33:12.097 --> 00:33:18.006 enough, we need universal designs to be 00:33:18.006 --> 00:33:22.312 the standard, we need accessibility 00:33:22.312 --> 00:33:26.948 and the accommodation to be readily available. 00:33:26.948 --> 00:33:34.100 But we must have monitoring and enforcement. 00:33:34.100 --> 00:33:38.529 Every federal dollar is supposed to be 00:33:38.529 --> 00:33:41.428 spent in compliance with the rehabilitation act 00:33:41.428 --> 00:33:46.952 and between the rehab act and what the ADA require. 00:33:46.952 --> 00:33:55.134 There should be no room for people with 00:33:55.134 --> 00:33:59.994 those civil rights protections to be repeatedly denied 00:33:59.994 --> 00:34:09.786 and unable to fully participate in home 00:34:09.786 --> 00:34:15.905 and community life. Monitoring and enforcement 00:34:15.905 --> 00:34:26.452 must be the floor, the ceiling. But enforcing 00:34:26.452 --> 00:34:30.179 these civil rights laws is absolutely 00:34:30.179 --> 00:34:32.405 the floor. Thank you 00:34:32.670 --> 00:34:35.891 So what can we do? What steps can we as community members 00:34:35.891 --> 00:34:37.541 take right now? 00:34:37.541 --> 00:34:43.161 So what we can do right now is 00:34:43.161 --> 00:34:46.565 one of my favorite sayings is 00:34:46.565 --> 00:34:48.732 "never give up, never give in" 00:34:48.732 --> 00:34:50.784 another favorites is 00:34:50.784 --> 00:34:53.053 "nothing about us, without us" 00:34:53.053 --> 00:35:00.218 We as disability community leaders, need 00:35:00.218 --> 00:35:08.096 to stick together, we need to center our work 00:35:08.096 --> 00:35:13.880 around people who are multiple marginalized 00:35:13.880 --> 00:35:19.548 excluded, we need to be sure that 00:35:19.548 --> 00:35:26.935 we are not wasting our time with in fighting 00:35:26.935 --> 00:35:35.813 and with the kind of divisive childish behavior 00:35:35.813 --> 00:35:39.959 that some folks are still stuck on engaging in. 00:35:39.959 --> 00:35:46.286 We absolutely must reach a hand forward, 00:35:46.286 --> 00:35:51.368 reach a hand back, stick together and 00:35:51.368 --> 00:36:02.326 continue relentlessly to work towards 00:36:02.326 --> 00:36:13.815 the realization of the goal that the ADA 00:36:13.815 --> 00:36:18.166 was written around and so many 00:36:18.166 --> 00:36:23.546 of our siblings have fought so very hard 00:36:23.546 --> 00:36:30.765 for, we've lost a bunch of those hard working 00:36:30.765 --> 00:36:38.069 visionary leaders, many of them have been 00:36:38.069 --> 00:36:43.003 lost in recent years, some have been lost 00:36:43.003 --> 00:36:50.272 along the way. We have an incredible 00:36:50.272 --> 00:36:56.747 legacy to care for, we have huge 00:36:56.747 --> 00:37:01.329 opportunities to work towards. Technology 00:37:01.329 --> 00:37:03.939 has the potential of leveling the 00:37:03.939 --> 00:37:08.372 playing field if in fact people have real access 00:37:08.372 --> 00:37:13.657 and the World Institute on Disability 00:37:13.657 --> 00:37:17.590 and our commitment to work in partnership 00:37:17.590 --> 00:37:23.893 with other disability lead organizations and our allies 00:37:23.893 --> 00:37:32.153 to make communities stronger, more resilient for 00:37:32.153 --> 00:37:35.989 the whole community. When we get it right 00:37:35.989 --> 00:37:40.097 for people with disabilities, I think the 00:37:40.097 --> 00:37:47.487 whole community not only benefits is stronger 00:37:47.487 --> 00:37:52.358 for our leadership, our contributions, 00:37:52.358 --> 00:38:03.606 our expertise in what it takes to make daily life 00:38:03.606 --> 00:38:05.779 work for everybody. 00:38:06.487 --> 00:38:09.822 Excellent thank you.