WEBVTT 00:00:00.322 --> 00:00:04.322 You'll see in the corner the record button 99:59:59.999 --> 99:59:59.999 So you should see that it's recording now, 99:59:59.999 --> 99:59:59.999 and I am going to mute myself 99:59:59.999 --> 99:59:59.999 and you'll go ahead and do your intro. 99:59:59.999 --> 99:59:59.999 Thank you Marcie. 99:59:59.999 --> 99:59:59.999 Hi there, I'm Marcie Roth 99:59:59.999 --> 99:59:59.999 And I have been working in disability rights 99:59:59.999 --> 99:59:59.999 For my whole adult life, 99:59:59.999 --> 99:59:59.999 And actually, since I was a freshman in high school 99:59:59.999 --> 99:59:59.999 I am currently the executive director and CEO of the World Institute on Disability 99:59:59.999 --> 99:59:59.999 And I have been working over the years in services 99:59:59.999 --> 99:59:59.999 for people living in residential programs early 99:59:59.999 --> 99:59:59.999 in my career with people in, 99:59:59.999 --> 99:59:59.999 Children in school settings, 99:59:59.999 --> 99:59:59.999 people in vocational rehabilitation, 99:59:59.999 --> 99:59:59.999 and then people in community living environments, 99:59:59.999 --> 99:59:59.999 that along the way, I became very involved in disability rights 99:59:59.999 --> 99:59:59.999 and very involved in the early days of advocacy 99:59:59.999 --> 99:59:59.999 before the ADA was introduced. 99:59:59.999 --> 99:59:59.999 And then I worked for disability advocacy organizations almost ever since. 99:59:59.999 --> 99:59:59.999 In addition to my own disability, 99:59:59.999 --> 99:59:59.999 I'm also the parent of two now adults with 99:59:59.999 --> 99:59:59.999 disabilities. My husband also has a disability, 99:59:59.999 --> 99:59:59.999 and much of my family also happen to be people with disabilities 99:59:59.999 --> 99:59:59.999 so disability rights is just a part of everything I am and most everything I do. 99:59:59.999 --> 99:59:59.999 I did spend from 2001 and onward focusing very much 99:59:59.999 --> 99:59:59.999 on what happens for people with disabilities 99:59:59.999 --> 99:59:59.999 before, during, and after disasters. 99:59:59.999 --> 99:59:59.999 And that's been a real particular laser focus of mine ever since, 99:59:59.999 --> 99:59:59.999 and in fact, I've had the opportunity 99:59:59.999 --> 99:59:59.999 as an appointee in the Obama administration 99:59:59.999 --> 99:59:59.999 to spend just about 8 years at FEMA, 99:59:59.999 --> 99:59:59.999 establishing FEMA's Office of Disability Integration Coordination, 99:59:59.999 --> 99:59:59.999 and building a cadre of disability experts 99:59:59.999 --> 99:59:59.999 of the same pond, supporting governors 99:59:59.999 --> 99:59:59.999 and emergency managers and most particularly 99:59:59.999 --> 99:59:59.999 engaging people with disabilities and disability organizations 99:59:59.999 --> 99:59:59.999 in emergency preparedness 99:59:59.999 --> 99:59:59.999 and throughout disaster response recover and mitigation. 99:59:59.999 --> 99:59:59.999 So one last piece since I've been with 99:59:59.999 --> 99:59:59.999 the World Institute on Disabilities since last September, 99:59:59.999 --> 99:59:59.999 my ongoing focus on global disability rights 99:59:59.999 --> 99:59:59.999 has really been something that I've had 99:59:59.999 --> 99:59:59.999 much more opportunity to be actively 99:59:59.999 --> 99:59:59.999 involved in and I have spent the time since joining 99:59:59.999 --> 99:59:59.999 with building a strategic planning process 99:59:59.999 --> 99:59:59.999 and supporting the organization to establish new priorities 99:59:59.999 --> 99:59:59.999 taking a look at the organizations mission 99:59:59.999 --> 99:59:59.999 and very recently establishing four particular areas of focus 99:59:59.999 --> 99:59:59.999 for the organization as we move forward. 99:59:59.999 --> 99:59:59.999 Thank you Marcie. Excellent, okay 99:59:59.999 --> 99:59:59.999 I apologize that my neighbor is chipping a lot of brush today, 99:59:59.999 --> 99:59:59.999 so it's making extra sound whenever I unmute 99:59:59.999 --> 99:59:59.999 but don't worry, it won't interfere with your recording. 99:59:59.999 --> 99:59:59.999 Okay, so the first question is about the past. 99:59:59.999 --> 99:59:59.999 So tell your first memory realizing that there were 99:59:59.999 --> 99:59:59.999 accessibility issues, discrimination, or lack of inclusion. 99:59:59.999 --> 99:59:59.999 What is your personal story or connection 99:59:59.999 --> 99:59:59.999 to the American's with Disabilities Act? 99:59:59.999 --> 99:59:59.999 What do you remember about the day that it was signed, if applicable? 99:59:59.999 --> 99:59:59.999 And what was the impact on you and on others? 99:59:59.999 --> 99:59:59.999 Remember to tap something that the camera shifts to you 99:59:59.999 --> 99:59:59.999 before you start. 99:59:59.999 --> 99:59:59.999 I first became aware of disability at a very young age. 99:59:59.999 --> 99:59:59.999 I had a best friend in first grade, his name was Gregory, 99:59:59.999 --> 99:59:59.999 and he and I were just wonderful friends 99:59:59.999 --> 99:59:59.999 We spent a lot of time together, and then 99:59:59.999 --> 99:59:59.999 all of the sudden one day, Gregory was gone, 99:59:59.999 --> 99:59:59.999 and I didn't know what happened to him or where he went 99:59:59.999 --> 99:59:59.999 and it wasn't until many years later 99:59:59.999 --> 99:59:59.999 that I found out that Gregory had Down Syndrome, 99:59:59.999 --> 99:59:59.999 and he had been removed from my Kindergarten class, 99:59:59.999 --> 99:59:59.999 and first grade I think it was at that point, 99:59:59.999 --> 99:59:59.999 and apparently he had been sent to some other school somewhere. 99:59:59.999 --> 99:59:59.999 And the loss of his friendship was pretty surprising 99:59:59.999 --> 99:59:59.999 and I didn't understand, you know, where he went. 99:59:59.999 --> 99:59:59.999 Looking back on it it's kind of peculiar that we didn't get to still be friends 99:59:59.999 --> 99:59:59.999 cause he didn't move away, he just stopped going to my school. 99:59:59.999 --> 99:59:59.999 But, I... 99:59:59.999 --> 99:59:59.999 I remember just being confused and then over the next number of years, 99:59:59.999 --> 99:59:59.999 I lived in a town that was also the home of Save the Children. 99:59:59.999 --> 99:59:59.999 And I was always very interested in the work 99:59:59.999 --> 99:59:59.999 that Save the Children was doing, and I am 99:59:59.999 --> 99:59:59.999 embarrassed to admit that my earliest 99:59:59.999 --> 99:59:59.999 involvement in humanitarian work was from a, you know a very charity-model approach. 99:59:59.999 --> 99:59:59.999 I spent a lot of my childhood raising 99:59:59.999 --> 99:59:59.999 money for Save the Children, and getting 99:59:59.999 --> 99:59:59.999 involved in other activities that were very 99:59:59.999 --> 99:59:59.999 much following the charity-pity model and certainly not a model 99:59:59.999 --> 99:59:59.999 of making space for and supporting and lifting up 99:59:59.999 --> 99:59:59.999 other people with disabilities. 99:59:59.999 --> 99:59:59.999 The on set of my disability wasn't until many years later, 99:59:59.999 --> 99:59:59.999 but when I was in high school, I had a 99:59:59.999 --> 99:59:59.999 requirement to do community service and I 99:59:59.999 --> 99:59:59.999 had an opportunity to do, had an obligation 99:59:59.999 --> 99:59:59.999 to do community service and we 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. It turned out that it 99:59:59.999 --> 99:59:59.999 was really boring but lots of my classmates 99:59:59.999 --> 99:59:59.999 were volunteering at a state institution 99:59:59.999 --> 99:59:59.999 for people with disabilities and I joined them 99:59:59.999 --> 99:59:59.999 once a week, looking back on it again it was 99:59:59.999 --> 99:59:59.999 pretty shocking at 13 years old I was 99:59:59.999 --> 99:59:59.999 assigned as the teacher of a classroom 99:59:59.999 --> 99:59:59.999 of 30 adults who had never had the 99:59:59.999 --> 99:59:59.999 opportunity to attend school and now had 99:59:59.999 --> 99:59:59.999 a 13 year old teacher once a week. 99:59:59.999 --> 99:59:59.999 Needless to say, I learned way more from them 99:59:59.999 --> 99:59:59.999 then they learned from me, but we had a lot of fun 99:59:59.999 --> 99:59:59.999 and many of them became friends, you know, very much along the rest of my path. 99:59:59.999 --> 99:59:59.999 Unfortunately, some of them are no longer alive 99:59:59.999 --> 99:59:59.999 but there are a couple of people who are 99:59:59.999 --> 99:59:59.999 still very much apart 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. This was my first paid job 99:59:59.999 --> 99:59:59.999 in disability services and I had been 99:59:59.999 --> 99:59:59.999 hired to work in what was called a cottage, for 99:59:59.999 --> 99:59:59.999 40 women with intellectual disabilities. 99:59:59.999 --> 99:59:59.999 This cottage was on beautiful ground, but 99:59:59.999 --> 99:59:59.999 the women lived in a building with 20 on 99:59:59.999 --> 99:59:59.999 one side and 20 on the other side. 99:59:59.999 --> 99:59:59.999 My responsibilities included assisting them 99:59:59.999 --> 99:59:59.999 in bathing and getting dressed and eating 99:59:59.999 --> 99:59:59.999 many of them were unable to feed themselves 99:59:59.999 --> 99:59:59.999 some because they never been given 99:59:59.999 --> 99:59:59.999 the opportunity and others because of 99:59:59.999 --> 99:59:59.999 their physical disability and a lack of any 99:59:59.999 --> 99:59:59.999 supportive or adaptive utensils or other equipment, 99:59:59.999 --> 99:59:59.999 so as I was feeding people it was the same every day. 99:59:59.999 --> 99:59:59.999 A plate would come out and there were 3 mounds of food on the plate. One mound was always brown 99:59:59.999 --> 99:59:59.999 One mound was always green 99:59:59.999 --> 99:59:59.999 One mound was always white, you know the meat 99:59:59.999 --> 99:59:59.999 the vegetable, and the starch, and I know that 99:59:59.999 --> 99:59:59.999 people like to eat their meals different ways, there would 99:59:59.999 --> 99:59:59.999 also be a dessert everyday, a jello, ice cream again in a mound. 99:59:59.999 --> 99:59:59.999 I would spend time with each of the individuals 99:59:59.999 --> 99:59:59.999 who were having their meal, and would sort of be kind of working 99:59:59.999 --> 99:59:59.999 together trying to figure out, did they 99:59:59.999 --> 99:59:59.999 prefer to eat their desert first? 99:59:59.999 --> 99:59:59.999 And people like to do that, did they prefer 99:59:59.999 --> 99:59:59.999 a little bit of brown and a little bit of white 99:59:59.999 --> 99:59:59.999 all on the same fork? Did they not want 99:59:59.999 --> 99:59:59.999 them touching, and you know I would sort of 99:59:59.999 --> 99:59:59.999 work back and forth with them to try to 99:59:59.999 --> 99:59:59.999 figure out what their preference was and 99:59:59.999 --> 99:59:59.999 I got in trouble because I was spending 99:59:59.999 --> 99:59:59.999 to much time and ultimately, I was moved 99:59:59.999 --> 99:59:59.999 to a different position because I was taking 99:59:59.999 --> 99:59:59.999 to much time giving people and 99:59:59.999 --> 99:59:59.999 opportunity to make some choices and 99:59:59.999 --> 99:59:59.999 express some preferences. That was extremely 99:59:59.999 --> 99:59:59.999 pivotal and in many ways, you know, those early 99:59:59.999 --> 99:59:59.999 early experiences, have really, totally driven who I am 99:59:59.999 --> 99:59:59.999 and what I believe all of these years later. 99:59:59.999 --> 99:59:59.999 In terms of the American's with Disabilities Act 99:59:59.999 --> 99:59:59.999 I had very close personal experience with 99:59:59.999 --> 99:59:59.999 what was then called public law 94142: 99:59:59.999 --> 99:59:59.999 The Education of All Handicaps Act, 99:59:59.999 --> 99:59:59.999 later on renamed The Individuals with 99:59:59.999 --> 99:59:59.999 Disabilities Act, IDEA and I had a very personal 99:59:59.999 --> 99:59:59.999 family experience with IDEA and became aware 99:59:59.999 --> 99:59:59.999 of legislative initiatives, and how the IDEA had just been passed. 99:59:59.999 --> 99:59:59.999 Then I started to become more aware of the work 99:59:59.999 --> 99:59:59.999 being done, this was back int he 70's. Working 99:59:59.999 --> 99:59:59.999 being done on some other legislative initatives, the 504 99:59:59.999 --> 99:59:59.999 The Passage of Rehabilitation Act, followed by the 504 99:59:59.999 --> 99:59:59.999 sit-in in San Francisco to get the 99:59:59.999 --> 99:59:59.999 regulations put in place. That really caught my attention, 99:59:59.999 --> 99:59:59.999 between the little bits of information I was getting there 99:59:59.999 --> 99:59:59.999 and the work I was doing and then becoming a full time 99:59:59.999 --> 99:59:59.999 advocate, going to work for an independent 99:59:59.999 --> 99:59:59.999 living center in 1982, I then became extremely 99:59:59.999 --> 99:59:59.999 involved 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, voices and preferences of other 99:59:59.999 --> 99:59:59.999 people and because I lived in Connecticut and the 99:59:59.999 --> 99:59:59.999 original author of the American's with 99:59:59.999 --> 99:59:59.999 Disabilities Act, the first time the bill 99:59:59.999 --> 99:59:59.999 was introduced was senator Will Weiker 99:59:59.999 --> 99:59:59.999 of Connecticut and Senator Weiker, father 99:59:59.999 --> 99:59:59.999 of a great young man who had Down Syndrome 99:59:59.999 --> 99:59:59.999 Senator Welker was very involved with 99:59:59.999 --> 99:59:59.999 the disability advocacy community in Connecticut 99:59:59.999 --> 99:59:59.999 and I then had the incredible opportunity to 99:59:59.999 --> 99:59:59.999 go to Boston and testify and on of the 99:59:59.999 --> 99:59:59.999 Congressman Major Owens field of hearings 99:59:59.999 --> 99:59:59.999 on the American's with Disabilities Act so 99:59:59.999 --> 99:59:59.999 of course that first time around the bill 99:59:59.999 --> 99:59:59.999 didn't pass. But boy oh boy, were we revved up 99:59:59.999 --> 99:59:59.999 in the passage of the ADA, in the period of which 99:59:59.999 --> 99:59:59.999 once the bill was reintroduced 99:59:59.999 --> 99:59:59.999 and folks were organizing, I remember that we had 99:59:59.999 --> 99:59:59.999 stacks and stacks and stacks of bright pink 99:59:59.999 --> 99:59:59.999 post cards, and we were organizing folks across the state 99:59:59.999 --> 99:59:59.999 to develop, to sign those post cards supporting 99:59:59.999 --> 99:59:59.999 passage of the ADA and then, this was sort 99:59:59.999 --> 99:59:59.999 of a wonderful but maybe a miss leading experience 99:59:59.999 --> 99:59:59.999 we actually were successful! The bill got 99:59:59.999 --> 99:59:59.999 passed, I remember thinking oh well this wasn't that hard, 99:59:59.999 --> 99:59:59.999 we had to go at it twice but this wasn't so hard! 99:59:59.999 --> 99:59:59.999 Let's take on some more legislation. So 99:59:59.999 --> 99:59:59.999 turns out it wasn't as easy as it looked to me 99:59:59.999 --> 99:59:59.999 It wasn't just about hot pink post cards, and meetings, and marches 99:59:59.999 --> 99:59:59.999 that all helped but even that sometimes 99:59:59.999 --> 99:59:59.999 these days doesn't seem to be enough to change policy. 99:59:59.999 --> 99:59:59.999 That's my earliest journey to 1990. 99:59:59.999 --> 99:59:59.999 Thank you Marcie, okay were going to present now 99:59:59.999 --> 99:59:59.999 just so you know I do have another interview at 2 99:59:59.999 --> 99:59:59.999 we are going to have three more sections. 99:59:59.999 --> 99:59:59.999 The present, the future and the call to 99:59:59.999 --> 99:59:59.999 action, so just to pace yourself within those 99:59:59.999 --> 99:59:59.999 So the present, has the ADA made a difference? 99:59:59.999 --> 99:59:59.999 Tell us about your "Aha" moment that told you 99:59:59.999 --> 99:59:59.999 that the ADA is or is not making a difference 99:59:59.999 --> 99:59:59.999 and to what extent based on your passions 99:59:59.999 --> 99:59:59.999 and area of expertise, where you see or 99:59:59.999 --> 99:59:59.999 not see the impact of the ADA. 99:59:59.999 --> 99:59:59.999 So the ADA has had a huge and sweeping impact 99:59:59.999 --> 99:59:59.999 and I... Its important for me to begin as I talk about 99:59:59.999 --> 99:59:59.999 the present day as were embarking on ADA 30. 99:59:59.999 --> 99:59:59.999 Its really important to start with, how 99:59:59.999 --> 99:59:59.999 much things absolutely have changed, and certainly some 99:59:59.999 --> 99:59:59.999 of the architectural barrier removal efforts 99:59:59.999 --> 99:59:59.999 some of the significant improvements in 99:59:59.999 --> 99:59:59.999 effective, 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, I can't even say most of the time... often. 99:59:59.999 --> 99:59:59.999 There have been many great initiatives 99:59:59.999 --> 99:59:59.999 over the years, but we always had to 99:59:59.999 --> 99:59:59.999 maintain a relentless battle to, to not let 99:59:59.999 --> 99:59:59.999 anything slip, to not lose and sort of momentum, 99:59:59.999 --> 99:59:59.999 towards accessibility. If we look away for 99:59:59.999 --> 99:59:59.999 a minute, our rights will be swept away 99:59:59.999 --> 99:59:59.999 from us, I can certainly talk about the 99:59:59.999 --> 99:59:59.999 very present day, and what I have to say 99:59:59.999 --> 99:59:59.999 about where we are today, is not 99:59:59.999 --> 99:59:59.999 great, so I do want to take a little bit 99:59:59.999 --> 99:59:59.999 more time to call out the significant 99:59:59.999 --> 99:59:59.999 progress in so many aspects of daily life, 99:59:59.999 --> 99:59:59.999 in which we can call out failures of ADA 99:59:59.999 --> 99:59:59.999 compliance, enforcement of the law. 99:59:59.999 --> 99:59:59.999 But it is often times in comparison to 99:59:59.999 --> 99:59:59.999 the examples of where it's working. 99:59:59.999 --> 99:59:59.999 So when transportation is not accessible 99:59:59.999 --> 99:59:59.999 we're calling it out because we know the 99:59:59.999 --> 99:59:59.999 good and the promising practices that have 99:59:59.999 --> 99:59:59.999 been in place for transportation accesabilty 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 99:59:59.999 --> 99:59:59.999 of assistive devices that are available 99:59:59.999 --> 99:59:59.999 the universal design of places and things, 99:59:59.999 --> 99:59:59.999 all of that points to the examples of where 99:59:59.999 --> 99:59:59.999 we are getting it right, In stark contrast 99:59:59.999 --> 99:59:59.999 the areas where we are getting it egreigously 99:59:59.999 --> 99:59:59.999 getting it wrong. I have to say that 99:59:59.999 --> 99:59:59.999 just very recently, I have lead my 99:59:59.999 --> 99:59:59.999 organization involvement in a petition to 99:59:59.999 --> 99:59:59.999 the U.S Department 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 located 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 horrific circumstances 99:59:59.999 --> 99:59:59.999 in those congregate settings, to Covid-19 99:59:59.999 --> 99:59:59.999 and the failure to provide appropriate 99:59:59.999 --> 99:59:59.999 protections for people with disabilities 99:59:59.999 --> 99:59:59.999 and institutional settings. The ADA back in 1990 99:59:59.999 --> 99:59:59.999 very clearly gave people with disabilities 99:59:59.999 --> 99:59:59.999 significant rights, and even when 99:59:59.999 --> 99:59:59.999 challenged in 1999, the homestead case 99:59:59.999 --> 99:59:59.999 which was a Georgia case, and two women 99:59:59.999 --> 99:59:59.999 who Lois and Elaine, Lois Curtis an 99:59:59.999 --> 99:59:59.999 incredible woman, I have had the 99:59:59.999 --> 99:59:59.999 pleasure of being with on a number of 99:59:59.999 --> 99:59:59.999 occasions. The two of them demanded that 99:59:59.999 --> 99:59:59.999 they had a right to live in the most intergraded 99:59:59.999 --> 99:59:59.999 setting appropriate to their needs. 99:59:59.999 --> 99:59:59.999 The decision, the case went all the way to 99:59:59.999 --> 99:59:59.999 the Supreme Court, and I was among 99:59:59.999 --> 99:59:59.999 those who slept out on the steps of 99:59:59.999 --> 99:59:59.999 the Supreme Court on the night before 99:59:59.999 --> 99:59:59.999 their case was heard. I was among the 99:59:59.999 --> 99:59:59.999 folks who celebrated out in front of the 99:59:59.999 --> 99:59:59.999 Supreme Court on the day that decision 99:59:59.999 --> 99:59:59.999 came down in favor of Lois and Elaine 99:59:59.999 --> 99:59:59.999 right and the rights of thousands, tens of 99:59:59.999 --> 99:59:59.999 thousands, millions of people with 99:59:59.999 --> 99:59:59.999 disabilities to be, to live in the most 99:59:59.999 --> 99:59:59.999 intergraded setting appropriate to their 99:59:59.999 --> 99:59:59.999 needs. Given that we are 21 years after 99:59:59.999 --> 99:59:59.999 that decision, yesterday the American 99:59:59.999 --> 99:59:59.999 Civil Liberties Union submitted a petition 99:59:59.999 --> 99:59:59.999 and the World Institute on Disability joined 99:59:59.999 --> 99:59:59.999 a number of disability organizations 99:59:59.999 --> 99:59:59.999 in a bringing that petition, demanding 99:59:59.999 --> 99:59:59.999 that people with disabilities be immediately 99:59:59.999 --> 99:59:59.999 relocated out of these congregate settings. 99:59:59.999 --> 99:59:59.999 Tens of thousands of people have died 99:59:59.999 --> 99:59:59.999 in the last hundred days, the genocide of 99:59:59.999 --> 99:59:59.999 people with disabilities because of the 99:59:59.999 --> 99:59:59.999 failures of implementation of that 99:59:59.999 --> 99:59:59.999 homestead decision and the failures of our 99:59:59.999 --> 99:59:59.999 government to provide that kind of support 99:59:59.999 --> 99:59:59.999 and services that enable people with disabilities 99:59:59.999 --> 99:59:59.999 to live safely and and with the support 99:59:59.999 --> 99:59:59.999 they need in place in the community, 99:59:59.999 --> 99:59:59.999 very infuriatingly, our continued persistent 99:59:59.999 --> 99:59:59.999 call for people with disabilities to be 99:59:59.999 --> 99:59:59.999 adequately served in these disasters 99:59:59.999 --> 99:59:59.999 have been ignored and the bottom line 99:59:59.999 --> 99:59:59.999 has been that again, over the last hundred days 99:59:59.999 --> 99:59:59.999 tens of thousands of people with disabilities 99:59:59.999 --> 99:59:59.999 have died, and when I was called on 99:59:59.999 --> 99:59:59.999 saying that those were people with disabilities 99:59:59.999 --> 99:59:59.999 I have had conversations with a number of 99:59:59.999 --> 99:59:59.999 senior government officials who, 99:59:59.999 --> 99:59:59.999 "why are you saying people with disabilities" 99:59:59.999 --> 99:59:59.999 these were old people with underlying conditions 99:59:59.999 --> 99:59:59.999 living in nursing homes, and long term care 99:59:59.999 --> 99:59:59.999 facilities, look you don't go to a nursing home 99:59:59.999 --> 99:59:59.999 because you are old. You go to a nursing home because 99:59:59.999 --> 99:59:59.999 you have a disability and the supports and 99:59:59.999 --> 99:59:59.999 services you need to stay in the community 99:59:59.999 --> 99:59:59.999 have not been given to you, and that majority 99:59:59.999 --> 99:59:59.999 of some would say of all those deaths in 99:59:59.999 --> 99:59:59.999 congregate facilites are people with disabilities. 99:59:59.999 --> 99:59:59.999 Most of them black and brown and people 99:59:59.999 --> 99:59:59.999 living in poverty, and the failures of 99:59:59.999 --> 99:59:59.999 American's with Disabilities Act, the homestead decision and 99:59:59.999 --> 99:59:59.999 our governments will to monitor and force 99:59:59.999 --> 99:59:59.999 this law 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 depth of many of our siblings, 99:59:59.999 --> 99:59:59.999 Without out end in sight. 99:59:59.999 --> 99:59:59.999 Thank you Marcie, okay so next onto the 99:59:59.999 --> 99:59:59.999 future. With the work you have been doing 99:59:59.999 --> 99:59:59.999 you have seen a lot in terms of progress and barriers. 99:59:59.999 --> 99:59:59.999 If you could pick one thing to change or that needs 99:59:59.999 --> 99:59:59.999 to occur to have access and equality, 99:59:59.999 --> 99:59:59.999 I know that is hard, one thing. To have 99:59:59.999 --> 99:59:59.999 access and equality present in the lives 99:59:59.999 --> 99:59:59.999 of people with 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. The one thing that must happen 99:59:59.999 --> 99:59:59.999 is that their rights are monitored and enforced 99:59:59.999 --> 99:59:59.999 without exception. Following the law is not 99:59:59.999 --> 99:59:59.999 enough, we need universal designs to be 99:59:59.999 --> 99:59:59.999 the standard, we need accessibility 99:59:59.999 --> 99:59:59.999 and the accommodation to be readily available. 99:59:59.999 --> 99:59:59.999 But we must have monitoring and enforcement. 99:59:59.999 --> 99:59:59.999 Every federal dollar is supposed to be 99:59:59.999 --> 99:59:59.999 spent in compliance with the rehabilitation act 99:59:59.999 --> 99:59:59.999 and between the rehab act and what the ADA require. 99:59:59.999 --> 99:59:59.999 There should be no room for people with 99:59:59.999 --> 99:59:59.999 those civil rights protections to be repeatedly denied 99:59:59.999 --> 99:59:59.999 and unable to fully participate in home 99:59:59.999 --> 99:59:59.999 and community life. Monitoring and enforcement 99:59:59.999 --> 99:59:59.999 must be the floor, the 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 99:59:59.999 --> 99:59:59.999 So what can we do? What steps can we as community members 99:59:59.999 --> 99:59:59.999 take right now? 99:59:59.999 --> 99:59:59.999 So what we can do right now is 99:59:59.999 --> 99:59:59.999 one of my favorite sayings is 99:59:59.999 --> 99:59:59.999 "never give up, never give in" 99:59:59.999 --> 99:59:59.999 another favorites is 99:59:59.999 --> 99:59:59.999 "nothing about us, without us" 99:59:59.999 --> 99:59:59.999 We as disability community leaders, need 99:59:59.999 --> 99:59:59.999 to stick together, we need to center our work 99:59:59.999 --> 99:59:59.999 around people who are multiple marginalized 99:59:59.999 --> 99:59:59.999 excluded, we need to be sure that 99:59:59.999 --> 99:59:59.999 we are not wasting our time with in fighting 99:59:59.999 --> 99:59:59.999 and with the kind of divisive childish behavior 99:59:59.999 --> 99:59:59.999 that some folks are still stuck on 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 and 99:59:59.999 --> 99:59:59.999 continue relentlessly to work towards 99:59:59.999 --> 99:59:59.999 the realization of the goal that the ADA 99:59:59.999 --> 99:59:59.999 was written around and so many 99:59:59.999 --> 99:59:59.999 of our siblings have fought so very hard 99:59:59.999 --> 99:59:59.999 for, we've lost a bunch of those hard working 99:59:59.999 --> 99:59:59.999 visionary leaders, many of them have been 99:59:59.999 --> 99:59:59.999 lost in recent years, some have been lost 99:59:59.999 --> 99:59:59.999 along the way. We have an incredible 99:59:59.999 --> 99:59:59.999 legacy to care for, we have huge 99:59:59.999 --> 99:59:59.999 opportunities to work towards. Technology 99:59:59.999 --> 99:59:59.999 has the potential of leveling the 99:59:59.999 --> 99:59:59.999 playing field if in fact people have real access 99:59:59.999 --> 99:59:59.999 and the World Institute on Disability 99:59:59.999 --> 99:59:59.999 and our commitment to work in partnership 99:59:59.999 --> 99:59:59.999 with other disability lead organizations and our allies 99:59:59.999 --> 99:59:59.999 to make communities stronger, more resilient for 99:59:59.999 --> 99:59:59.999 the whole community. When we get it right 99:59:59.999 --> 99:59:59.999 for people with disabilities, I think the 99:59:59.999 --> 99:59:59.999 whole community not only benefits is stronger 99:59:59.999 --> 99:59:59.999 for our leadership, our contributions, 99:59:59.999 --> 99:59:59.999 our expertise in what it takes to make daily life 99:59:59.999 --> 99:59:59.999 work for everybody. 99:59:59.999 --> 99:59:59.999 Excellent thank you.