0:00:00.863,0:00:04.146 You'll see in the corner the record button 0:00:04.146,0:00:06.143 So you should see that it's recording now, 0:00:06.143,0:00:07.533 and I'm going to mute myself 0:00:07.593,0:00:09.654 and you'll go ahead and do your intro. 0:00:09.724,0:00:11.326 Thank you Marcie. 0:00:14.230,0:00:16.286 Hi there, I'm Marcie Roth 0:00:16.290,0:00:22.143 and I have been working[br]in disability rights 0:00:22.143,0:00:26.224 for my whole adult life, 0:00:26.224,0:00:31.565 and actually, since I was[br]a freshman in high school. 0:00:31.565,0:00:42.536 I am currently the executive director and[br]CEO of the World Institute on Disability, 0:00:42.536,0:00:53.208 and I have been working[br]over the years in services 0:00:53.208,0:01:01.860 for people living in residential programs [br]early in my career 0:01:01.860,0:01:05.460 with people in, 0:01:05.460,0:01:09.100 children in school settings, 0:01:09.100,0:01:15.002 people in vocational rehabilitation, 0:01:15.002,0:01:23.411 and then people in [br]community living environments, 0:01:23.411,0:01:30.917 then along the way, I[br]became very involved in disability rights 0:01:30.917,0:01:41.317 and very involved in the [br]early days of advocacy 0:01:41.317,0:01:44.957 before the ADA was introduced. 0:01:44.957,0:01:54.850 And then I worked for disability advocacy [br]organizations almost ever since. 0:01:54.860,0:01:58.412 In addition to my own disability, 0:01:58.412,0:02:02.043 I'm also the parent of two 0:02:02.043,0:02:04.868 now adults with disabilities. 0:02:04.868,0:02:08.559 My Husband also has a disability, 0:02:08.559,0:02:17.443 and much of my family also happen [br]to be people with disabilities 0:02:17.443,0:02:23.748 so disability rights is just part of 0:02:23.748,0:02:27.376 everything I am and most everything I do. 0:02:27.376,0:02:38.803 I did spend from 2001 and onward 0:02:38.803,0:02:44.427 focusing very much on what happens [br]for people with disabilities 0:02:44.434,0:02:47.084 before, during, and after disasters. 0:02:47.084,0:02:54.235 And that's been a real particular [br]laser focus of mine ever since, 0:02:54.237,0:02:57.499 and in fact, I've had the opportunity 0:02:57.499,0:03:01.932 as an appointee in the [br]Obama administration 0:03:01.932,0:03:08.229 to spend just about 8 years at FEMA, 0:03:08.229,0:03:14.501 establishing FEMA's Office of [br]Disability Integration Coordination, 0:03:14.501,0:03:23.258 and building a cadre of disability experts 0:03:23.258,0:03:27.478 of the same pond, supporting governors 0:03:27.478,0:03:34.836 and emergency managers [br]and most particularly 0:03:34.836,0:03:38.398 engaging people with disabilities, [br]and disability organizations 0:03:38.398,0:03:42.170 in emergency preparedness 0:03:42.170,0:03:46.638 and throughout disaster response recovery[br]and mitigation. 0:03:46.638,0:03:54.205 So one last piece since I've been with 0:03:54.205,0:03:59.132 the World Institute on Disability [br]since last September, 0:03:59.132,0:04:09.362 my ongoing focus on global[br]disability rights has really been 0:04:09.431,0:04:16.305 something that I've had much more[br]opportunity to be actively involved in 0:04:16.305,0:04:26.005 and I have spent the time since joining 0:04:26.005,0:04:31.601 WID building a strategic planning process 0:04:31.601,0:04:42.844 and supporting the organization to[br]establish new priorities, 0:04:42.844,0:04:47.130 taking a look at the [br]organization's mission 0:04:47.130,0:04:53.662 and very recently establishing[br]four particular areas of focus 0:04:53.662,0:04:56.842 for the organization as we move forward. 0:04:59.472,0:05:01.972 Thank you Marcie. Excellent, okay 0:05:01.972,0:05:06.528 I apologize that my neighbor is chipping[br]a lot of brush today, 0:05:06.528,0:05:09.185 so it's making extra sound[br]whenever I unmute 0:05:09.185,0:05:12.656 but don't worry, it won't interfere [br]with your recording. 0:05:12.656,0:05:15.956 Okay, so the first question is[br]about the past. 0:05:15.956,0:05:18.926 So tell of your first memory[br]realizing that there were 0:05:18.942,0:05:23.077 accessibility issues, discrimination, [br]or lack of inclusion. 0:05:23.077,0:05:25.669 What is your personal story[br]or connection 0:05:25.669,0:05:28.828 to the American's with Disabilities Act?[br]What do you remember 0:05:28.828,0:05:31.430 about the day that it was signed,[br]if applicable? 0:05:31.430,0:05:34.982 And what was the impact on[br]you and on others? 0:05:34.982,0:05:38.632 Remember to tap something[br]so that the camera shifts to you 0:05:38.632,0:05:39.917 before you start. 0:05:44.654,0:05:55.442 I first became aware of disability [br]at a very young age. 0:05:55.442,0:06:02.133 I had a best friend in first grade,[br]his name was Gregory, 0:06:02.133,0:06:09.688 and he and I were[br]just wonderful friends. 0:06:09.688,0:06:12.404 We spent a lot of time together, 0:06:12.404,0:06:16.556 and then all of the sudden[br]one day, Gregory was gone, 0:06:16.556,0:06:24.162 and I didn't know what happened to him [br]or where he went 0:06:24.162,0:06:26.957 and it wasn't until many years later 0:06:26.957,0:06:32.587 that I found out that Gregory[br]had Down Syndrome, 0:06:32.587,0:06:36.990 and he had been removed[br]from my Kindergarten class, 0:06:36.990,0:06:41.189 and first grade I think it was[br]at that point, 0:06:41.189,0:06:46.850 and apparently he had been sent [br]to some other school somewhere. 0:06:46.850,0:06:58.048 And the loss of his friendship[br]was pretty surprising 0:06:58.048,0:07:03.935 and I didn't understand, you know,[br]where he went. 0:07:03.935,0:07:09.239 Looking back on it, it's kind of peculiar[br]that we didn't get to still be friends 0:07:09.239,0:07:14.809 'cause he didn't move away, he just[br]stopped going to my school. 0:07:15.891,0:07:18.691 But, I... 0:07:20.723,0:07:31.654 I remember just being confused and then[br]over the next number of years, 0:07:31.654,0:07:40.148 I lived in a town that was also[br]the home of Save the Children, 0:07:40.148,0:07:49.678 and I was always very interested in[br]the work that Save the Children was doing, 0:07:49.678,0:07:56.968 and I am embarrassed to admit[br]my earliest involvement 0:07:56.968,0:08:06.482 in humanitarian work was from a, [br]you know, very charity-model approach, 0:08:06.482,0:08:16.018 and I spent a lot of my childhood[br]raising money for Save the Children, 0:08:16.018,0:08:28.147 and getting involved in other activities[br]that were very much following 0:08:28.161,0:08:39.100 the charity-pity model and certainly not[br]a model of 0:08:39.100,0:08:50.415 making space for and supporting and [br]lifting up other people with disabilities. 0:08:50.415,0:08:58.915 the onset of my disability wasn't until [br]many years later, 0:08:58.915,0:09:07.473 but when I was in high school,[br]I had a requirement to do 0:09:13.393,0:09:15.771 I can't even remember [br]what it's called now! 0:09:15.771,0:09:18.040 Community service! Sorry. 0:09:18.040,0:09:23.393 I had an opportunity to do, or I had[br]an obligation to do community service, 0:09:23.393,0:09:30.527 and I started off, this was the year[br]of the first Earth day 0:09:30.527,0:09:36.508 and I started off crushing glass[br]at the local recycling center, 0:09:36.508,0:09:40.635 and it turned out that[br]that was really boring, 0:09:40.635,0:09:47.683 but lots of my classmates were[br]volunteering 0:09:47.683,0:09:53.421 at a state institution[br]for people with disabilities, 0:09:53.421,0:10:04.199 and I joined them once a week and [br]looking back on it again, 0:10:04.199,0:10:09.143 it was pretty shocking that at[br]13 years old, 0:10:09.143,0:10:16.799 I was assigned as the teacher[br]of a classroom of 30 adults 0:10:16.799,0:10:23.230 who had never had the opportunity [br]to attend school, and they now had 0:10:23.230,0:10:27.494 a 13 year old teacher once a week. 0:10:27.494,0:10:33.750 Needless to say, I learned way more [br]from them than they learned from me, 0:10:33.750,0:10:42.325 but we had a lot of fun, and many of them[br]became friends 0:10:42.325,0:10:48.486 very much along the rest of my path. 0:10:48.486,0:10:52.558 Unfortunately, some of them are[br]no longer alive, 0:10:52.558,0:10:59.826 but there are a couple of people who[br]are still very much a part of my life 0:10:59.826,0:11:06.683 and fortunately, they were successful in 0:11:06.683,0:11:11.556 liberating themselves from [br]that state institution. 0:11:11.556,0:11:17.999 And so, they and many others [br]taught me a lot, 0:11:17.999,0:11:26.014 but the real pivotal experience for me, [br]I was working back at 0:11:26.014,0:11:35.305 that state institution, it was my first[br]paid job in disability services, 0:11:35.305,0:11:40.811 and I had been hired to work [br]in what was called a "cottage" 0:11:40.811,0:11:45.337 for 40 women with[br]intellectual disabilities, 0:11:45.337,0:11:53.775 and this "cottage" was on[br]beautiful grounds, 0:11:53.775,0:11:58.086 but the women lived in a building,[br]20 on one side, 20 on the other side, 0:11:58.086,0:12:02.505 and my responsibilities included 0:12:02.505,0:12:10.059 assisting them in bathing and [br]getting dressed and in eating. 0:12:10.059,0:12:16.742 Many of them were unable[br]to feed themselves. 0:12:16.742,0:12:23.213 Some because they just had never been[br]given the opportunity, 0:12:23.213,0:12:26.059 and others because of their [br]physical disability 0:12:26.059,0:12:40.283 and a lack of any sort of[br]adapted utensils or other equipment. 0:12:40.283,0:12:49.272 So as I was feeding people, sort of[br]the routine was the same every day. 0:12:49.272,0:12:52.357 The plate would come out,[br]and there would be 0:12:52.357,0:12:55.837 3 mounds of food on the plate. 0:12:55.837,0:12:59.747 One mound was always brown, [br]one mound was always green, 0:12:59.747,0:13:02.557 and one mound was always white. 0:13:02.557,0:13:10.607 You know the meat, the vegetable, [br]and the starch. 0:13:10.607,0:13:21.593 And, you know, I know that people like to[br]eat their meal different ways. 0:13:23.671,0:13:26.739 There would also be a dessert every day, 0:13:26.739,0:13:30.822 jello, or ice cream, or[br]something again always in a mound. 0:13:30.822,0:13:38.611 And so I would spend time with each of the 0:13:38.611,0:13:42.807 individuals who were having their meal 0:13:42.807,0:13:47.691 and would sort of be working together, 0:13:47.691,0:13:50.792 trying to figure out [br]did they prefer to have 0:13:50.792,0:13:55.059 to eat their dessert first? 0:13:55.059,0:13:57.589 Some people liked to do that. 0:13:57.589,0:13:58.589 Did they prefer 0:13:58.589,0:14:01.048 a little bit of the brown and a little bit 0:14:01.048,0:14:03.879 of the white all on the same fork? 0:14:03.879,0:14:06.276 Did they not want their food touching? 0:14:06.276,0:14:09.583 You know and I would sort of [br]work back and forth 0:14:09.583,0:14:12.071 with them to try and figure out what 0:14:12.071,0:14:16.383 their preference was and I got in trouble 0:14:16.383,0:14:19.613 because I was spending too much time 0:14:19.613,0:14:26.252 and ultimately, I was moved to a different 0:14:26.252,0:14:30.933 position because I was taking too much 0:14:30.933,0:14:34.933 time giving people an opportunity to make 0:14:34.933,0:14:38.842 some choices and express some preferences. 0:14:38.842,0:14:43.774 So that was extremely pivotal and in 0:14:43.774,0:14:48.223 many ways you know, those early early 0:14:48.223,0:14:55.273 experiences have really totally driven 0:14:55.273,0:15:00.678 who I am and what I believe [br]all these years later. 0:15:00.678,0:15:06.200 In terms of the [br]Americans with Disabilities Act, 0:15:06.200,0:15:12.203 I had a very close personal experience 0:15:12.203,0:15:14.856 with what was then called 0:15:14.856,0:15:20.699 "public law 94142" the Education of 0:15:20.699,0:15:25.655 All Handicapped Act, later on renamed 0:15:25.655,0:15:29.586 the Individuals with Disabilities Act,[br]IDEA 0:15:29.586,0:15:33.371 and I had a very personal family 0:15:33.371,0:15:39.364 experience with IDEA and became aware of 0:15:39.364,0:15:45.971 legislative initiatives and how the IDEA 0:15:45.971,0:15:52.579 had just been passed. And then I started 0:15:52.579,0:15:58.294 to become more aware of the work being 0:15:58.294,0:16:02.352 done. And this was back in the 70s 0:16:02.352,0:16:06.553 work being done on some other legislative 0:16:06.553,0:16:12.365 initiatives, the 504, the passage of 0:16:12.365,0:16:17.012 the Rehabilitation Act, followed by the 0:16:17.012,0:16:24.962 504 sit-in in San Francisco to get the 0:16:24.962,0:16:31.272 regulations put in place. That really 0:16:31.272,0:16:37.498 caught my attention and between the little 0:16:37.498,0:16:41.373 bits of information I was getting there 0:16:41.373,0:16:46.821 and the work I was doing 0:16:46.821,0:16:51.118 and then becoming a full-time advocate 0:16:51.118,0:16:55.199 going to work for an[br]independent living center 0:16:55.199,0:17:00.482 in 1982, I then became extremely involved 0:17:00.482,0:17:10.114 in systems change and how to develop 0:17:10.114,0:17:14.257 policy, how to organize, how to support 0:17:14.257,0:17:20.320 the rights and voices and preferences of 0:17:20.320,0:17:25.127 other people and because I lived in 0:17:25.127,0:17:32.299 Connecticut and the original author of 0:17:32.299,0:17:34.465 the Americans with Disability Act, 0:17:34.465,0:17:37.366 the first time the bill was introduced was 0:17:37.366,0:17:42.070 Senator Weicker of Connecticut, and 0:17:42.070,0:17:48.574 Senator Weicker, father of a[br]great young man 0:17:48.574,0:17:52.411 who had Down Syndrome. 0:17:52.411,0:17:59.324 Senator Weicker was very involved with the 0:17:59.324,0:18:03.355 disability advocacy community in 0:18:03.355,0:18:08.496 Connecticut, and I then had the incredible 0:18:08.496,0:18:13.850 opportunity to go to Boston and testify 0:18:13.850,0:18:21.986 at one of the Congress major hearings-- 0:18:21.986,0:18:24.533 field hearings on the Americans with 0:18:24.533,0:18:27.650 Disability Act. So you know of course that 0:18:27.650,0:18:31.976 first time around, the bill didn't pass 0:18:31.976,0:18:37.069 but boy oh boy were we revved up 0:18:37.069,0:18:46.907 and in the passage of the ADA, [br]in the period in which 0:18:46.907,0:18:50.766 once the bill was re-introduced and votes 0:18:50.766,0:18:55.276 were organizing, I remember that we had 0:18:55.276,0:19:00.750 stacks and stacks and stacks of bright 0:19:00.750,0:19:05.472 pink postcards and we were organizing 0:19:05.472,0:19:12.518 folks across the state to develop, 0:19:12.518,0:19:16.887 to sign those postcards supporting the 0:19:16.887,0:19:26.487 passage of the ADA and then you know this 0:19:26.487,0:19:30.357 was sort of a wonderful but maybe a little 0:19:30.357,0:19:36.026 bit misleading experience,[br]we actually were 0:19:36.026,0:19:39.062 successful. The bill got passed! And I 0:19:39.062,0:19:43.671 remember thinking, [br]"Oh, well this wasn't that hard 0:19:43.671,0:19:46.225 I mean, you know, [br]we had to go at it twice 0:19:46.225,0:19:48.607 but well this wasn't so hard. 0:19:48.607,0:19:51.077 Let's take on some more legislation!" 0:19:51.077,0:19:56.055 So it turns out that it wasn't as easy 0:19:56.055,0:19:58.711 as it looked to me. It wasn't just about 0:19:58.711,0:20:03.482 hot pink postcards and meetings and 0:20:03.482,0:20:09.216 marches. That all helped but even that 0:20:09.216,0:20:14.468 sometimes these days, it doesn't seem to 0:20:14.468,0:20:18.750 be enough to change policy. 0:20:18.750,0:20:27.902 So that's my earliest journey to 1990. 0:20:30.516,0:20:33.121 Thank you Marcie. Okay we're going to the 0:20:33.121,0:20:37.319 present now. So just so you know, I do 0:20:37.319,0:20:41.019 have another interview at 2:00, so we're 0:20:41.019,0:20:44.483 going to have 3 more sections: the present 0:20:44.483,0:20:46.488 the future, and the call to action. 0:20:46.488,0:20:50.205 So just to pace yourself within those.[br]--thank you 0:20:50.205,0:20:53.126 OK so the present, has the ADA 0:20:53.126,0:20:55.157 made a difference? Tell us about your 0:20:55.157,0:20:57.778 "aha" moment that told you that the ADA is 0:20:57.778,0:20:59.753 or is not making a difference and to what 0:20:59.753,0:21:02.923 extent based on your passions and areas of 0:21:02.923,0:21:05.585 expertise, where do you see or not see the 0:21:05.585,0:21:08.427 impact of the ADA? 0:21:08.427,0:21:15.254 So the ADA has had a huge 0:21:15.254,0:21:18.095 and sweeping impact 0:21:18.095,0:21:23.157 and it's important for me 0:21:23.157,0:21:26.575 to begin as I talk 0:21:26.575,0:21:30.530 about the present day as we're embarking 0:21:30.530,0:21:35.405 on ADA 30 it's really important to start 0:21:35.405,0:21:39.864 with how much things absolutely have 0:21:39.864,0:21:47.398 changed, you know so certainly some of the 0:21:47.398,0:21:50.652 architectural barrier removal efforts, 0:21:50.652,0:21:54.865 some of the significant improvements 0:21:54.865,0:22:00.542 in equally effective communication, 0:22:00.542,0:22:04.902 some of the requirements around programs, 0:22:04.902,0:22:13.254 you know, all of those have [br]significantly changed 0:22:13.254,0:22:18.485 most--- can't even say most [br]of the time--often 0:22:18.485,0:22:22.299 there have been many [br]really great initiatives over 0:22:22.299,0:22:30.868 the years but we've always had to maintain 0:22:30.868,0:22:37.591 a relentless battle to not 0:22:37.591,0:22:41.742 let anything slip, to not lose 0:22:41.742,0:22:48.501 any sort of momentum[br]towards accessibility. 0:22:48.501,0:22:53.879 If we look away for a minute, 0:22:53.879,0:22:57.915 our rights will be swept away from us. 0:22:57.915,0:23:01.637 And I can certainly talk about 0:23:01.637,0:23:04.041 the very present day, 0:23:04.041,0:23:10.698 and what I have to say about where 0:23:10.698,0:23:16.971 we are today, is not great 0:23:16.971,0:23:20.462 and so I do want to take [br]a little more time 0:23:20.462,0:23:27.922 to call out the significant progress 0:23:27.922,0:23:36.711 in so many aspects of daily life 0:23:36.711,0:23:41.098 in which we can 0:23:41.098,0:23:50.730 call out failures of ADA compliance, 0:23:50.730,0:23:59.459 enforcement of the law,[br]but it is often times 0:23:59.459,0:24:04.098 in comparison to the examples of where 0:24:04.098,0:24:07.111 it's working, so when transportation 0:24:07.111,0:24:13.529 is not accessible, we're calling it out 0:24:13.529,0:24:19.852 because we know the good and 0:24:19.852,0:24:23.619 promising practices that[br]have been in place 0:24:23.619,0:24:28.585 for transportation accessibility 0:24:28.585,0:24:34.623 make the failures so much more egregious 0:24:34.623,0:24:42.778 in housing, in employment, in the kinds of 0:24:42.778,0:24:48.787 assistive devices that are available, 0:24:48.787,0:24:55.849 the universal design of places and things 0:24:55.849,0:25:09.303 all of that points to the [br]examples of where we 0:25:09.303,0:25:13.365 are getting it right and in stark contrast 0:25:13.365,0:25:19.330 the areas where we are [br]egregiously getting it wrong. 0:25:19.330,0:25:30.801 And I have to say that [br]just very recently, 0:25:30.801,0:25:38.291 I have led my [br]organization's involvement 0:25:38.291,0:25:46.163 in a petition to the US Department of[br]Health and Human Services 0:25:46.163,0:25:50.637 demanding that people with disabilities 0:25:50.637,0:25:58.211 be immediately relocated out of[br]nursing homes and other 0:25:58.211,0:26:07.792 Congregate settings due to the [br]horrific circumstances 0:26:07.792,0:26:10.961 in those congregate settings 0:26:10.961,0:26:16.054 due to covid-19 and the failure 0:26:16.054,0:26:23.290 to provide appropriate protections 0:26:23.290,0:26:30.394 for people with disabilities[br]in institutional settings. 0:26:30.394,0:26:36.462 The ADA back in 1990 0:26:36.462,0:26:42.926 very clearly gave people with disabilities 0:26:42.926,0:26:48.025 significant rights, and... 0:26:51.335,0:27:06.484 even when challenged in 1999,[br]the Olmstead case, 0:27:06.484,0:27:14.254 which was a Georgia case, and two women 0:27:14.254,0:27:19.108 who.. Lois and Elaine, Lois Curtiss 0:27:19.108,0:27:20.909 an incredible woman I've had the 0:27:20.909,0:27:24.972 pleasure of being with on a number 0:27:24.972,0:27:30.509 of occasions, the two of them 0:27:30.509,0:27:35.974 demanded that they had a right to live in 0:27:35.974,0:27:39.589 the most integrated setting appropriate [br]to their needs 0:27:39.589,0:27:45.409 and the decision, the case went 0:27:45.409,0:27:47.782 all the way to the Supreme Court 0:27:47.782,0:27:54.533 and I was among those who 0:27:54.533,0:27:58.629 slept out on the steps of the [br]Supreme Court 0:27:58.629,0:28:02.474 on the night before their case was heard 0:28:02.474,0:28:04.077 and I was among 0:28:04.077,0:28:07.834 the folks who celebrated out in front of 0:28:07.834,0:28:12.031 the Supreme Court on the day that [br]that decision came 0:28:12.031,0:28:15.755 down in favor of Lois and Elaine's right, 0:28:15.755,0:28:20.026 and the rights of thousands, [br]tens of thousands, 0:28:20.026,0:28:24.028 millions of people with disabilities 0:28:24.028,0:28:29.238 to live in the most integrated setting 0:28:29.238,0:28:31.376 appropriate to their needs. 0:28:32.485,0:28:36.994 Given that we are 21 years [br]after that decision, 0:28:36.994,0:28:43.080 yesterday the American Civil [br]Liberties Union 0:28:43.080,0:28:47.608 submitted a petition, [br]and the World Institute 0:28:47.608,0:28:50.462 on Disability joined a number of other 0:28:50.462,0:28:56.856 disability organizations in [br]bringing that petition 0:28:56.856,0:29:01.481 demanding that people with disabilities 0:29:01.481,0:29:05.243 be immediately relocated 0:29:05.243,0:29:09.030 out of these congregate settings. 0:29:09.030,0:29:15.462 Tens of thousands of people have died in 0:29:15.462,0:29:20.052 the last hundred days, the genocide 0:29:20.052,0:29:23.662 of people with disabilities because of 0:29:23.662,0:29:28.396 the failures of implementation of that 0:29:28.396,0:29:33.949 Olmstead decision, and the failures of our 0:29:33.949,0:29:39.862 government to provide the kind of supports 0:29:39.862,0:29:42.489 and services that enable 0:29:42.489,0:29:44.502 people with disabilities 0:29:44.502,0:29:49.008 to live safely and with the support they 0:29:49.008,0:29:50.865 need in place in the community 0:29:50.865,0:30:01.051 and, very infuriatingly our continued 0:30:01.051,0:30:05.200 persistent calls for 0:30:05.200,0:30:09.096 people with disabilities to be 0:30:09.096,0:30:13.138 adequately served in these.. 0:30:14.114,0:30:17.857 in disasters have been ignored, 0:30:17.857,0:30:23.473 and the bottom line has been [br]that again over the 0:30:23.473,0:30:28.608 last hundred days tens of [br]thousands of people with 0:30:28.608,0:30:31.278 disabilities have died. And when I was 0:30:31.278,0:30:35.556 called on, saying that those were 0:30:35.556,0:30:38.099 people with disabilities, I have had 0:30:38.099,0:30:41.364 conversations with a number of senior 0:30:41.364,0:30:45.004 government officials who, like, why are 0:30:45.004,0:30:48.125 you saying people with disabilities? 0:30:50.071,0:30:54.071 and you know, these were old people with 0:30:54.088,0:30:58.088 underlying conditions living[br]in nursing homes 0:30:58.088,0:31:01.958 and in long term care facilities. 0:31:01.958,0:31:04.287 Well you don't go to a nursing home 0:31:04.287,0:31:06.899 because you're old, you go to a nursing 0:31:06.899,0:31:09.766 home because you have a disability and the 0:31:09.766,0:31:12.286 supports and services you need to stay in 0:31:12.286,0:31:14.876 the community have not been given to you. 0:31:14.876,0:31:22.026 And the vast majority, [br]some would say, all of 0:31:22.026,0:31:25.766 those deaths in congregate facilities are 0:31:25.766,0:31:29.041 people with disabilities, most of them 0:31:29.056,0:31:34.776 black and brown and people living in 0:31:34.776,0:31:41.406 poverty. And the failures of Americans 0:31:41.406,0:31:44.318 with Disabilities Act, the Olmstead 0:31:44.318,0:31:48.357 decision, and our government's 0:31:48.357,0:31:54.284 will to monitor and enforce this law 0:31:54.284,0:31:58.287 and the Rehabilitation Act have a 0:31:59.334,0:32:03.464 devastating impact on where we are today. 0:32:03.464,0:32:07.497 And the death of many of our siblings. 0:32:07.497,0:32:11.527 Without any end in sight. 0:32:12.778,0:32:17.870 Thank you Marcie, Ok. So next on [br]to the future. 0:32:17.870,0:32:20.099 With the work you've been doing, 0:32:20.099,0:32:23.187 you've seen a lot of terms [br]in progress and barriers. 0:32:23.187,0:32:25.492 If you could pick one thing[br]to change 0:32:25.492,0:32:28.639 or that needs to occur to have[br]access and equality 0:32:28.639,0:32:30.259 --I know that's hard-- 0:32:30.259,0:32:34.639 one thing to have access and equality[br]present in the lives of people 0:32:34.639,0:32:38.764 with disabilities what would that be? 0:32:38.764,0:32:44.095 The one thing that must happen: 0:32:46.784,0:32:52.911 people with disabilities have [br]civil rights protections by law, 0:32:53.932,0:32:57.882 and the one thing that[br]must happen 0:32:57.882,0:33:03.378 is that their rights are monitored 0:33:03.378,0:33:08.390 and enforced without exception. 0:33:10.630,0:33:15.790 Following the law is not enough, [br]we need universal 0:33:15.790,0:33:20.126 design to be the standard, we need 0:33:20.126,0:33:27.049 accessibility and accommodation[br]to be readily available, 0:33:27.049,0:33:31.237 but we must have 0:33:31.237,0:33:34.476 monitoring and enforcement. 0:33:34.476,0:33:38.786 Every federal dollar is supposed [br]to be spent in 0:33:38.786,0:33:41.886 compliance with the Rehabilitation Act. 0:33:41.886,0:33:47.493 And between what the Rehab Act and [br]the ADA require 0:33:47.493,0:33:57.080 there should be, no rue for[br]people with civil rights protections 0:33:57.080,0:34:00.980 to be repeatedly denied 0:34:00.980,0:34:06.970 and unable to fully participate 0:34:06.970,0:34:11.110 in home and community life. 0:34:13.060,0:34:21.431 Monitoring and enforcement [br]must be the floor 0:34:21.431,0:34:28.026 I have a ceiling, but enforcing[br]these civil rights laws 0:34:28.026,0:34:31.676 is absolutely the floor. 0:34:31.676,0:34:33.967 Thank you. So what can we do? 0:34:33.967,0:34:37.526 What steps can we as community members[br]take right now? 0:34:38.776,0:34:44.893 So what we can do right now is,[br]you know, 0:34:44.893,0:34:48.969 one of my favorite sayings,[br]"never give up, never give in." 0:34:48.969,0:34:53.045 Another of my favorites, [br]"nothing about us without us." 0:34:54.185,0:35:02.013 We as disability community leaders[br]need to stick together, 0:35:02.013,0:35:10.421 we need to center our work[br]around people 0:35:10.421,0:35:14.788 who are multiply marginalized, excluded. 0:35:16.228,0:35:21.498 We need to be sure that we are not wasting 0:35:21.498,0:35:28.776 our time with infighting, and with 0:35:28.776,0:35:36.268 a kind of divisive childish behavior that 0:35:36.268,0:35:39.927 some folks are still stuck on engaging in, 0:35:39.927,0:35:46.177 we absolutely must reach a hand forward, 0:35:46.177,0:35:50.217 reach a hand back, stick together 0:35:50.217,0:35:56.097 and continue relentlessly 0:35:57.844,0:36:11.884 to work towards the realization [br]of the goal 0:36:11.884,0:36:16.697 that the ADA was written around and so 0:36:16.697,0:36:22.243 many of our siblings have fought so very 0:36:22.243,0:36:27.973 hard for. We've lost a bunch of those 0:36:27.973,0:36:37.403 hardworking visionary leaders; [br]many of them 0:36:37.403,0:36:42.653 have been lost in recent years, [br]some of them 0:36:42.653,0:36:49.543 have been lost along the way, we have an 0:36:49.543,0:36:55.503 incredible legacy to care for, we have 0:36:55.503,0:36:59.703 huge opportunities to work towards, 0:36:59.703,0:37:03.930 technology has the potential for leveling 0:37:03.930,0:37:07.223 the playing field if in fact people have 0:37:07.223,0:37:11.983 real access and the World Institute on 0:37:11.983,0:37:15.953 Disability and our commitment to 0:37:15.953,0:37:19.413 work in partnership with other 0:37:19.413,0:37:22.473 disability lead organizations and 0:37:22.473,0:37:28.866 our allies to make communities 0:37:28.866,0:37:32.615 stronger, more resilient for the whole 0:37:32.615,0:37:36.360 community because when we get it right 0:37:36.360,0:37:39.990 for people with disabilities, I think 0:37:39.990,0:37:44.130 the whole community not only benefits 0:37:44.130,0:37:50.240 but is stronger for our leadership, 0:37:50.360,0:37:59.130 our contributions, our expertise in 0:37:59.130,0:38:04.830 what it takes to make daily life [br]work for everybody. 0:38:07.807,0:38:09.963 Excellent, thank you.