0:00:00.322,0:00:03.582 You'll see in the corner the record button 0:00:04.059,0:00:06.079 So you should see that it's recording now, 0:00:06.379,0:00:07.140 and I am going to mute myself 0:00:07.140,0:00:08.820 and you'll go ahead and do your intro. 0:00:08.864,0:00:09.574 Thank you Marcie. 0:00:14.104,0:00:16.044 Hi there, I'm Marcie Roth 0:00:16.552,0:00:22.620 And I have been working in disability rights 0:00:22.872,0:00:26.392 For my whole adult life, 0:00:26.405,0:00:31.641 And actually, since I was a freshman in high school 0:00:32.347,0:00:42.425 I am currently the executive director and CEO of the World Institute on Disability 0:00:42.817,0:00:53.167 And I have been working over the years in services 0:00:53.167,0:00:59.397 for people living in residential programs early 0:00:59.397,0:01:04.537 in my career with people in, 0:01:06.225,0:01:08.035 Children in school settings, 0:01:10.322,0:01:14.322 people in vocational rehabilitation, 0:01:14.686,0:01:22.917 and then people in community living environments, 0:01:23.417,0:01:29.837 then along the way, I became very involved in disability rights 0:01:30.667,0:01:40.857 and very involved in the early days of advocacy 0:01:40.857,0:01:44.857 before the ADA was introduced. 0:01:46.191,0:01:54.651 And then I worked for disability advocacy organizations almost ever since. 0:01:56.000,0:01:58.120 In addition to my own disability, 0:01:58.120,0:02:03.160 I'm also the parent of two now adults with 0:02:03.160,0:02:08.610 disabilities. My husband also has a disability, 0:02:09.059,0:02:17.219 and much of my family also happen to be people with disabilities 0:02:17.219,0:02:27.444 so disability rights is just a part of everything I am and most everything I do. 0:02:27.998,0:02:41.318 I did spend from 2001 and onward focusing very much 0:02:41.318,0:02:44.118 on what happens for people with disabilities 0:02:44.582,0:02:46.772 before, during, and after disasters. 0:02:47.327,0:02:54.288 And that's been a real particular laser focus of mine ever since, 0:02:55.184,0:02:57.424 and in fact, I've had the opportunity 0:02:57.948,0:03:01.948 as an appointee in the Obama administration 0:03:02.472,0:03:08.160 to spend just about 8 years at FEMA, 0:03:09.231,0:03:13.623 establishing FEMA's Office of Disability Integration Coordination, 0:03:14.124,0:03:23.140 and building a cadre of disability experts 0:03:23.371,0:03:27.191 focusing on supporting governors 0:03:27.283,0:03:34.732 and emergency managers and most particularly 0:03:34.732,0:03:38.732 engaging people with disabilities and disability organizations 0:03:39.481,0:03:42.320 in emergency preparedness 0:03:42.680,0:03:46.680 and throughout disaster response recover and mitigation. 0:03:47.672,0:03:54.002 So one last piece since I've been with 0:03:54.002,0:03:59.152 the World Institute on Disabilities since last September, 0:04:00.558,0:04:06.555 my ongoing focus on global disability rights 0:04:06.555,0:04:10.555 has really been something that I've had 0:04:10.946,0:04:15.226 much more opportunity to be actively 0:04:15.552,0:04:25.612 involved in and I have spent the time since joining 0:04:25.612,0:04:32.131 with building a strategic planning process 0:04:32.479,0:04:42.629 and supporting the organization to establish new priorities 0:04:44.255,0:04:46.625 taking a look at the organizations mission 0:04:47.107,0:04:53.947 and very recently establishing four particular areas of focus 0:04:54.173,0:04:57.553 for the organization as we move forward. 0:04:59.294,0:05:02.034 Thank you Marcie. Excellent, okay 0:05:02.088,0:05:06.318 I apologize that my neighbor is chipping a lot of brush today, 0:05:06.318,0:05:09.058 so it's making extra sound whenever I unmute 0:05:09.058,0:05:12.338 but don't worry, it won't interfere with your recording. 0:05:12.890,0:05:15.880 Okay, so the first question is about the past. 0:05:15.880,0:05:18.580 So tell your first memory realizing that there were 0:05:18.580,0:05:23.020 accessibility issues, discrimination, or lack of inclusion. 0:05:23.435,0:05:25.265 What is your personal story or connection 0:05:25.265,0:05:27.611 to the American's with Disabilities Act? 0:05:27.791,0:05:31.470 What do you remember about the day that it was signed, if applicable? 0:05:31.737,0:05:35.007 And what was the impact on you and on others? 0:05:35.007,0:05:38.657 Remember to tap something that the camera shifts to you 0:05:38.723,0:05:42.723 before you start. 0:05:44.715,0:05:55.435 I first became aware of disability at a very young age. 0:05:55.537,0:06:01.887 I had a best friend in first grade, his name was Gregory, 0:06:02.407,0:06:09.637 and he and I were just wonderful friends 0:06:09.637,0:06:12.747 We spent a lot of time together, and then 0:06:12.747,0:06:16.147 all of the sudden one day, Gregory was gone, 0:06:16.735,0:06:24.010 and I didn't know what happened to him or where he went 0:06:24.424,0:06:26.554 and it wasn't until many years later 0:06:27.012,0:06:32.778 that I found out that Gregory had Down Syndrome, 0:06:32.938,0:06:36.938 and he had been removed from my Kindergarten class, 0:06:37.435,0:06:40.199 and first grade I think it was at that point, 0:06:40.845,0:06:46.920 and apparently he had been sent to some other school somewhere. 0:06:48.216,0:06:57.846 And the loss of his friendship was pretty surprising 0:06:59.482,0:07:04.012 and I didn't understand, you know, where he went. 0:07:05.400,0:07:09.710 Looking back on it it's kind of peculiar that we didn't get to still be friends 0:07:09.710,0:07:14.550 cause he didn't move away, he just stopped going to my school. 0:07:15.868,0:07:19.868 But, I... 0:07:21.555,0:07:31.847 I remember just being confused and then over the next number of years, 0:07:32.749,0:07:40.567 I lived in a town that was also the home of Save the Children. 0:07:40.567,0:07:47.447 And I was always very interested in the work 0:07:47.447,0:07:51.447 that Save the Children was doing, and I am 0:07:51.977,0:07:55.425 embarrassed to admit that my earliest 0:07:55.708,0:08:06.688 involvement in humanitarian work was from a, you know a very charity-model approach. 0:08:07.747,0:08:13.897 I spent a lot of my childhood raising 0:08:13.897,0:08:17.581 money for Save the Children, and getting 0:08:17.581,0:08:25.751 involved in other activities that were very 0:08:25.751,0:08:34.979 much following the charity-pity model and certainly not a model 0:08:39.500,0:08:46.371 of making space for and supporting and lifting up 0:08:46.985,0:08:50.185 other people with disabilities. 0:08:51.592,0:08:59.262 The on set of my disability wasn't until many years later, 0:08:59.262,0:09:03.462 but when I was in high school, I had a 0:09:04.730,0:09:17.340 requirement to do community service and I 0:09:17.340,0:09:21.340 had an opportunity to do, had an obligation 0:09:21.571,0:09:24.411 to do community service and we started off. 0:09:25.318,0:09:30.209 This was the year of the first Earth Day 0:09:30.209,0:09:34.469 and I started crushing glass at the local 0:09:34.469,0:09:38.469 recycling center. It turned out that it 0:09:38.469,0:09:44.739 was really boring but lots of my classmates 0:09:45.152,0:09:51.712 were volunteering at a state institution 0:09:51.712,0:09:59.262 for people with disabilities and I joined them 0:09:59.262,0:10:06.238 once a week, looking back on it again it was 0:10:06.380,0:10:10.540 pretty shocking at 13 years old I was 0:10:10.540,0:10:15.440 assigned as the teacher of a classroom 0:10:15.440,0:10:18.500 of 30 adults who had never had the 0:10:18.500,0:10:23.370 opportunity to attend school and now had 0:10:23.370,0:10:27.370 a 13 year old teacher once a week. 0:10:28.035,0:10:32.125 Needless to say, I learned way more from them 0:10:32.125,0:10:36.125 then they learned from me, but we had a lot of fun 0:10:36.125,0:10:46.545 and many of them became friends, you know, very much along the rest of my path. 0:10:48.325,0:10:52.195 Unfortunately, some of them are no longer alive 0:10:52.195,0:10:55.885 but there are a couple of people who are 0:10:55.885,0:10:59.947 still very much apart of my life, and 0:11:01.233,0:11:05.867 fortunately they were successful in 0:11:05.867,0:11:09.077 liberating themselves from that state 0:11:09.077,0:11:13.699 institution and so, they and many others 0:11:13.699,0:11:21.039 taught me a lot but the real pivotal 0:11:20.921,0:11:25.939 experience for me, I was working back at 0:11:25.939,0:11:32.229 that state institution. This was my first paid job 0:11:33.196,0:11:36.006 in disability services and I had been 0:11:36.006,0:11:41.666 hired to work in what was called a cottage, for 0:11:41.666,0:11:45.666 40 women with intellectual disabilities. 0:11:46.446,0:11:53.959 This cottage was on beautiful ground, but 0:11:53.959,0:11:56.533 the women lived in a building with 20 on 0:11:56.533,0:11:58.723 one side and 20 on the other side. 0:11:59.591,0:12:04.277 My responsibilities included assisting them 0:12:04.811,0:12:10.243 in bathing and getting dressed and eating 0:12:10.321,0:12:16.954 many of them were unable to feed themselves 0:12:20.061,0:12:22.358 some because they never been given 0:12:22.358,0:12:24.178 the opportunity and others because of 0:12:24.178,0:12:27.798 their physical disability and a lack of any 0:12:27.798,0:12:40.210 supportive or adaptive utensils or other equipment, 0:12:40.495,0:12:48.754 so as I was feeding people it was the same every day. 0:12:48.754,0:12:58.038 A plate would come out and there were 3 mounds of food on the plate. One mound was always brown 0:12:58.038,0:12:59.947 One mound was always green 0:12:59.947,0:13:06.888 One mound was always white, you know the meat 0:13:07.337,0:13:17.638 the vegetable, and the starch, and I know that 0:13:17.638,0:13:24.374 people like to eat their meals different ways, there would 0:13:24.374,0:13:31.054 also be a dessert everyday, a jello, ice cream again in a mound. 0:13:31.211,0:13:40.159 I would spend time with each of the individuals 0:13:40.159,0:13:47.332 who were having their meal, and would sort of be kind of working 0:13:47.332,0:13:49.616 together trying to figure out, did they 0:13:49.616,0:13:55.064 prefer to eat their desert first? 0:13:55.353,0:13:58.629 And people like to do that, did they prefer 0:13:58.629,0:14:01.989 a little bit of brown and a little bit of white 0:14:02.252,0:14:04.425 all on the same fork? Did they not want 0:14:04.425,0:14:08.700 them touching, and you know I would sort of 0:14:08.700,0:14:11.320 work back and forth with them to try to 0:14:11.320,0:14:15.320 figure out what their preference was and 0:14:15.444,0:14:18.031 I got in trouble because I was spending 0:14:18.131,0:14:25.650 to much time and ultimately, I was moved 0:14:25.650,0:14:30.684 to a different position because I was taking 0:14:30.684,0:14:33.078 to much time giving people and 0:14:33.078,0:14:36.834 opportunity to make some choices and 0:14:36.834,0:14:42.167 express some preferences. That was extremely 0:14:42.167,0:14:47.406 pivotal and in many ways, you know, those early 0:14:47.406,0:14:56.716 early experiences, have really, totally driven who I am 0:14:56.716,0:15:00.716 and what I believe all of these years later. 0:15:02.577,0:15:06.466 In terms of the American's with Disabilities Act 0:15:07.301,0:15:13.231 I had very close personal experience with 0:15:13.231,0:15:18.976 what was then called public law 94142: 0:15:19.098,0:15:23.658 The Education of All Handicaps Act, 0:15:24.449,0:15:27.609 later on renamed The Individuals with 0:15:27.609,0:15:32.769 Disabilities Act, IDEA and I had a very personal 0:15:32.769,0:15:38.959 family experience with IDEA and became aware 0:15:38.959,0:15:48.585 of legislative initiatives, and how the IDEA had just been passed. 0:15:48.585,0:15:57.888 Then I started to become more aware of the work 0:15:57.888,0:16:03.308 being done, this was back int he 70's. Working 0:16:03.308,0:16:10.608 being done on some other legislative initatives, the 504 0:16:11.396,0:16:19.596 The Passage of Rehabilitation Act, followed by the 504 0:16:19.596,0:16:25.236 sit-in in San Francisco to get the 0:16:25.469,0:16:33.154 regulations put in place. That really caught my attention, 0:16:33.154,0:16:41.600 between the little bits of information I was getting there 0:16:41.600,0:16:50.122 and the work I was doing and then becoming a full time 0:16:50.122,0:16:53.488 advocate, going to work for an independent 0:16:53.488,0:17:00.430 living center in 1982, I then became extremely 0:17:00.430,0:17:10.207 involved in systems change and how to develop 0:17:10.207,0:17:14.202 policy, how to organize, how to support 0:17:14.202,0:17:20.749 the rights, voices and preferences of other 0:17:20.749,0:17:27.980 people and because I lived in Connecticut and the 0:17:27.980,0:17:33.158 original author of the American's with 0:17:33.158,0:17:35.833 Disabilities Act, the first time the bill 0:17:35.833,0:17:39.237 was introduced was senator Will Weiker 0:17:39.237,0:17:44.674 of Connecticut and Senator Weiker, father 0:17:44.674,0:17:51.125 of a great young man who had Down Syndrome 0:17:51.125,0:17:58.747 Senator Welker was very involved with 0:17:58.747,0:18:04.160 the disability advocacy community in Connecticut 0:18:04.160,0:18:10.175 and I then had the incredible opportunity to 0:18:10.175,0:18:15.850 go to Boston and testify and on of the 0:18:15.850,0:18:22.937 Congressman Major Owens field of hearings 0:18:22.937,0:18:26.438 on the American's with Disabilities Act so 0:18:26.438,0:18:30.227 of course that first time around the bill 0:18:30.227,0:18:36.597 didn't pass. But boy oh boy, were we revved up 0:18:36.597,0:18:47.427 in the passage of the ADA, in the period of which 0:18:47.427,0:18:49.506 once the bill was reintroduced 0:18:49.506,0:18:56.312 and folks were organizing, I remember that we had 0:18:56.312,0:19:01.600 stacks and stacks and stacks of bright pink 0:19:01.600,0:19:08.999 post cards, and we were organizing folks across the state 0:19:08.999,0:19:16.459 to develop, to sign those post cards supporting 0:19:16.459,0:19:27.191 passage of the ADA and then, this was sort 0:19:27.191,0:19:33.162 of a wonderful but maybe a miss leading experience 0:19:33.162,0:19:37.074 we actually were successful! The bill got 0:19:37.074,0:19:44.015 passed, I remember thinking oh well this wasn't that hard, 0:19:44.015,0:19:48.576 we had to go at it twice but this wasn't so hard! 0:19:48.576,0:19:51.670 Let's take on some more legislation. So 0:19:51.670,0:19:57.601 turns out it wasn't as easy as it looked to me 0:19:57.601,0:20:04.716 It wasn't just about hot pink post cards, and meetings, and marches 0:20:04.716,0:20:10.134 that all helped but even that sometimes 0:20:10.134,0:20:18.164 these days doesn't seem to be enough to change policy. 0:20:18.164,0:20:28.621 That's my earliest journey to 1990. 0:20:30.471,0:20:34.226 Thank you Marcie, okay were going to present now 0:20:34.226,0:20:38.792 just so you know I do have another interview at 2 0:20:38.792,0:20:43.729 we are going to have three more sections. 0:20:43.729,0:20:45.957 The present, the future and the call to 0:20:45.957,0:20:50.148 action, so just to pace yourself within those 0:20:50.148,0:20:54.167 So the present, has the ADA made a difference? 0:20:54.167,0:20:56.627 Tell us about your "Aha" moment that told you 0:20:56.627,0:20:59.137 that the ADA is or is not making a difference 0:20:59.137,0:21:01.990 and to what extent based on your passions 0:21:01.990,0:21:04.570 and area of expertise, where you see or 0:21:04.570,0:21:08.271 not see the impact of the ADA. 0:21:08.901,0:21:18.601 So the ADA has had a huge and sweeping impact 0:21:18.601,0:21:27.433 and I... Its important for me to begin as I talk about 0:21:27.433,0:21:32.498 the present day as were embarking on ADA 30. 0:21:32.498,0:21:37.107 Its really important to start with, how 0:21:37.107,0:21:47.177 much things absolutely have changed, and certainly some 0:21:47.177,0:21:50.889 of the architectural barrier removal efforts 0:21:50.889,0:21:56.217 some of the significant improvements in 0:21:56.217,0:22:00.622 effective, equally effective communication 0:22:00.622,0:22:05.269 some of the requirements around programs 0:22:05.269,0:22:13.584 All of those have significantly changed 0:22:13.584,0:22:18.873 most, I can't even say most of the time... often. 0:22:18.873,0:22:21.753 There have been many great initiatives 0:22:21.753,0:22:29.707 over the years, but we always had to 0:22:29.707,0:22:38.200 maintain a relentless battle to, to not let 0:22:38.200,0:22:44.254 anything slip, to not lose and sort of momentum, 0:22:44.254,0:22:53.846 towards accessibility. If we look away for 0:22:53.846,0:22:57.695 a minute, our rights will be swept away 0:22:57.695,0:23:01.703 from us, I can certainly talk about the 0:23:01.703,0:23:09.710 very present day, and what I have to say 0:23:09.710,0:23:16.323 about where we are today, is not 0:23:16.323,0:23:19.844 great, so I do want to take a little bit 0:23:19.844,0:23:25.348 more time to call out the significant 0:23:25.348,0:23:36.824 progress in so many aspects of daily life, 0:23:36.824,0:23:47.369 in which we can call out failures of ADA 0:23:47.369,0:23:53.228 compliance, enforcement of the law. 0:23:53.228,0:24:02.036 But it is often times in comparison to 0:24:02.036,0:24:05.574 the examples of where it's working. 0:24:05.574,0:24:10.424 So when transportation is not accessible 0:24:10.424,0:24:17.515 we're calling it out because we know the 0:24:17.515,0:24:22.841 good and the promising practices that have 0:24:22.841,0:24:28.303 been in place for transportation accesabilty 0:24:28.303,0:24:34.637 Make the failures so much more egregious. 0:24:34.637,0:24:41.911 In housing, in employment, in the kinds 0:24:41.911,0:24:48.796 of assistive devices that are available 0:24:48.796,0:24:56.217 the universal design of places and things, 0:24:56.217,0:25:08.506 all of that points to the examples of where 0:25:08.506,0:25:14.156 we are getting it right, In stark contrast 0:25:14.156,0:25:17.509 the areas where we are getting it egreigously 0:25:17.509,0:25:22.158 getting it wrong. I have to say that 0:25:22.158,0:25:34.775 just very recently, I have lead my 0:25:34.775,0:25:40.961 organization involvement in a petition to 0:25:40.961,0:25:44.824 the U.S Department of Health and Human 0:25:44.824,0:25:48.930 Services, demanding that people with 0:25:48.930,0:25:53.475 disabilities be immediately located 0:25:53.475,0:25:58.815 out of nursing homes and other congregate 0:25:58.815,0:26:08.053 settings due to the horrific circumstances 0:26:08.053,0:26:14.529 in those congregate settings, to Covid-19 0:26:14.529,0:26:22.390 and the failure to provide appropriate 0:26:22.390,0:26:25.791 protections for people with disabilities 0:26:25.791,0:26:35.481 and institutional settings. The ADA back in 1990 0:26:35.481,0:26:41.783 very clearly gave people with disabilities 0:26:41.783,0:26:53.050 significant rights, and even when 0:26:53.050,0:27:06.944 challenged in 1999, the homestead case 0:27:06.944,0:27:13.128 which was a Georgia case, and two women 0:27:13.128,0:27:19.373 who Lois and Elaine, Lois Curtis an 0:27:19.373,0:27:21.037 incredible woman, I have had the 0:27:21.037,0:27:25.183 pleasure of being with on a number of 0:27:25.183,0:27:33.017 occasions. The two of them demanded that 0:27:33.017,0:27:36.896 they had a right to live in the most intergraded 0:27:36.896,0:27:39.580 setting appropriate to their needs. 0:27:39.580,0:27:46.175 The decision, the case went all the way to 0:27:46.175,0:27:53.014 the Supreme Court, and I was among 0:27:53.014,0:27:56.936 those who slept out on the steps of 0:27:56.936,0:28:00.195 the Supreme Court on the night before 0:28:00.195,0:28:04.343 their case was heard. I was among the 0:28:04.343,0:28:08.067 folks who celebrated out in front of the 0:28:08.067,0:28:11.204 Supreme Court on the day that decision 0:28:11.204,0:28:15.206 came down in favor of Lois and Elaine 0:28:15.206,0:28:19.450 right and the rights of thousands, tens of 0:28:19.450,0:28:23.452 thousands, millions of people with 0:28:23.452,0:28:28.365 disabilities to be, to live in the most 0:28:28.365,0:28:29.860 intergraded setting appropriate to their 0:28:29.860,0:28:36.254 needs. Given that we are 21 years after 0:28:36.254,0:28:41.292 that decision, yesterday the American 0:28:41.292,0:28:46.401 Civil Liberties Union submitted a petition 0:28:46.401,0:28:49.416 and the World Institute on Disability joined 0:28:49.416,0:28:52.533 a number of disability organizations 0:28:52.533,0:28:58.858 in a bringing that petition, demanding 0:28:58.858,0:29:04.296 that people with disabilities be immediately 0:29:04.296,0:29:10.012 relocated out of these congregate settings. 0:29:10.012,0:29:15.385 Tens of thousands of people have died 0:29:15.385,0:29:20.495 in the last hundred days, the genocide of 0:29:20.495,0:29:23.931 people with disabilities because of the 0:29:23.931,0:29:28.176 failures of implementation of that 0:29:28.176,0:29:33.995 homestead decision and the failures of our 0:29:33.995,0:29:39.825 government to provide that kind of support 0:29:39.825,0:29:44.286 and services that enable people with disabilities 0:29:44.286,0:29:49.182 to live safely and and with the support 0:29:49.182,0:29:51.385 they need in place in the community, 0:29:51.385,0:30:02.638 very infuriatingly, our continued persistent 0:30:02.638,0:30:09.043 call for people with disabilities to be 0:30:09.043,0:30:15.225 adequately served in these disasters 0:30:15.225,0:30:19.042 have been ignored and the bottom line 0:30:19.042,0:30:25.849 has been that again, over the last hundred days 0:30:25.849,0:30:29.730 tens of thousands of people with disabilities 0:30:29.730,0:30:33.024 have died, and when I was called on 0:30:33.024,0:30:37.184 saying that those were people with disabilities 0:30:37.184,0:30:40.427 I have had conversations with a number of 0:30:40.427,0:30:43.584 senior government officials who, 0:30:43.584,0:30:49.409 "why are you saying people with disabilities" 0:30:49.409,0:30:55.830 these were old people with underlying conditions 0:30:55.830,0:31:01.196 living in nursing homes, and long term care 0:31:01.196,0:31:03.725 facilities, look you don't go to a nursing home 0:31:03.725,0:31:07.078 because you are old. You go to a nursing home because 0:31:07.078,0:31:09.160 you have a disability and the supports and 0:31:09.160,0:31:12.537 services you need to stay in the community 0:31:12.537,0:31:17.089 have not been given to you, and that majority 0:31:17.089,0:31:23.368 of some would say of all those deaths in 0:31:23.368,0:31:27.218 congregate facilites are people with disabilities. 0:31:27.218,0:31:33.365 Most of them black and brown and people 0:31:33.365,0:31:40.082 living in poverty, and the failures of 0:31:40.082,0:31:46.249 American's with Disabilities Act, the homestead decision and 0:31:46.249,0:31:53.348 our governments will to monitor and force 0:31:53.348,0:31:58.300 this law and the rehabilitation act have a 0:31:58.300,0:32:02.838 devastating impact on where we are today 0:32:02.838,0:32:06.918 and the depth of many of our siblings, 0:32:06.918,0:32:09.743 Without out end in sight. 0:32:12.183,0:32:16.940 Thank you Marcie, okay so next onto the 0:32:16.940,0:32:19.956 future. With the work you have been doing 0:32:19.956,0:32:22.855 you have seen a lot in terms of progress and barriers. 0:32:22.855,0:32:26.057 If you could pick one thing to change or that needs 0:32:26.057,0:32:28.269 to occur to have access and equality, 0:32:28.269,0:32:32.037 I know that is hard, one thing. To have 0:32:32.037,0:32:34.275 access and equality present in the lives 0:32:34.275,0:32:37.592 of people with disabilities, what would that be? 0:32:37.592,0:32:44.525 The one thing that must happen 0:32:44.525,0:32:50.323 people with disabilities have civil rights 0:32:50.323,0:32:57.455 protections by law. The one thing that must happen 0:32:57.455,0:33:05.464 is that their rights are monitored and enforced 0:33:05.464,0:33:12.097 without exception. Following the law is not 0:33:12.097,0:33:18.006 enough, we need universal designs to be 0:33:18.006,0:33:22.312 the standard, we need accessibility 0:33:22.312,0:33:26.948 and the accommodation to be readily available. 0:33:26.948,0:33:34.100 But we must have monitoring and enforcement. 0:33:34.100,0:33:38.529 Every federal dollar is supposed to be 0:33:38.529,0:33:41.428 spent in compliance with the rehabilitation act 0:33:41.428,0:33:46.952 and between the rehab act and what the ADA require. 0:33:46.952,0:33:55.134 There should be no room for people with 0:33:55.134,0:33:59.994 those civil rights protections to be repeatedly denied 0:33:59.994,0:34:09.786 and unable to fully participate in home 0:34:09.786,0:34:15.905 and community life. Monitoring and enforcement 0:34:15.905,0:34:26.452 must be the floor, the ceiling. But enforcing 0:34:26.452,0:34:30.179 these civil rights laws is absolutely 0:34:30.179,0:34:32.405 the floor. Thank you 0:34:32.670,0:34:35.891 So what can we do? What steps can we as community members 0:34:35.891,0:34:37.541 take right now? 0:34:37.541,0:34:43.161 So what we can do right now is 0:34:43.161,0:34:46.565 one of my favorite sayings is 0:34:46.565,0:34:48.732 "never give up, never give in" 0:34:48.732,0:34:50.784 another favorites is 0:34:50.784,0:34:53.053 "nothing about us, without us" 0:34:53.053,0:35:00.218 We as disability community leaders, need 0:35:00.218,0:35:08.096 to stick together, we need to center our work 0:35:08.096,0:35:13.880 around people who are multiple marginalized 0:35:13.880,0:35:19.548 excluded, we need to be sure that 0:35:19.548,0:35:26.935 we are not wasting our time with in fighting 0:35:26.935,0:35:35.813 and with the kind of divisive childish behavior 0:35:35.813,0:35:39.959 that some folks are still stuck on engaging in. 0:35:39.959,0:35:46.286 We absolutely must reach a hand forward, 0:35:46.286,0:35:51.368 reach a hand back, stick together and 0:35:51.368,0:36:02.326 continue relentlessly to work towards 0:36:02.326,0:36:13.815 the realization of the goal that the ADA 0:36:13.815,0:36:18.166 was written around and so many 0:36:18.166,0:36:23.546 of our siblings have fought so very hard 0:36:23.546,0:36:30.765 for, we've lost a bunch of those hard working 0:36:30.765,0:36:38.069 visionary leaders, many of them have been 0:36:38.069,0:36:43.003 lost in recent years, some have been lost 0:36:43.003,0:36:50.272 along the way. We have an incredible 0:36:50.272,0:36:56.747 legacy to care for, we have huge 0:36:56.747,0:37:01.329 opportunities to work towards. Technology 0:37:01.329,0:37:03.939 has the potential of leveling the 0:37:03.939,0:37:08.372 playing field if in fact people have real access 0:37:08.372,0:37:13.657 and the World Institute on Disability 0:37:13.657,0:37:17.590 and our commitment to work in partnership 0:37:17.590,0:37:23.893 with other disability lead organizations and our allies 0:37:23.893,0:37:32.153 to make communities stronger, more resilient for 0:37:32.153,0:37:35.989 the whole community. When we get it right 0:37:35.989,0:37:40.097 for people with disabilities, I think the 0:37:40.097,0:37:47.487 whole community not only benefits is stronger 0:37:47.487,0:37:52.358 for our leadership, our contributions, 0:37:52.358,0:38:03.606 our expertise in what it takes to make daily life 0:38:03.606,0:38:05.779 work for everybody. 0:38:06.487,0:38:09.822 Excellent thank you.