1 99:59:59,999 --> 99:59:59,999 You'll see in the corner the record button 2 99:59:59,999 --> 99:59:59,999 So you should see that it's recording now, 3 99:59:59,999 --> 99:59:59,999 and I'm going to mute myself now, and 4 99:59:59,999 --> 99:59:59,999 you'll go ahead and do your intro. Thank 5 99:59:59,999 --> 99:59:59,999 you Marcie. Hi there, I'm Marcie Roth, and 6 99:59:59,999 --> 99:59:59,999 I have been workign in disability rights 7 99:59:59,999 --> 99:59:59,999 for my whole adult life, since I was a 8 99:59:59,999 --> 99:59:59,999 freshman in high school. I am currently 9 99:59:59,999 --> 99:59:59,999 the executive director and CEO of the 10 99:59:59,999 --> 99:59:59,999 World Institute on Disability and I have 11 99:59:59,999 --> 99:59:59,999 been working over the years and services 12 99:59:59,999 --> 99:59:59,999 for people living in residential programs 13 99:59:59,999 --> 99:59:59,999 early in my career with people in with 14 99:59:59,999 --> 99:59:59,999 children in school settings, people in 15 99:59:59,999 --> 99:59:59,999 vocational rehabilitation, and then people 16 99:59:59,999 --> 99:59:59,999 in community living environments, then 17 99:59:59,999 --> 99:59:59,999 along the way, I became very involved in 18 99:59:59,999 --> 99:59:59,999 disability rights and very involved in 19 99:59:59,999 --> 99:59:59,999 the early days of advocacy before 20 99:59:59,999 --> 99:59:59,999 the ADA was introduced. And then I worked 21 99:59:59,999 --> 99:59:59,999 for disability advocacy organizations 22 99:59:59,999 --> 99:59:59,999 almost ever since. In addition to my own 23 99:59:59,999 --> 99:59:59,999 disability, I'm also the parent of two now 24 99:59:59,999 --> 99:59:59,999 adults with disabilities. My husband also 25 99:59:59,999 --> 99:59:59,999 has a disability and much of my family 26 99:59:59,999 --> 99:59:59,999 also happen to be people with disabilities 27 99:59:59,999 --> 99:59:59,999 so disability rights is just part of 28 99:59:59,999 --> 99:59:59,999 everything I am and most everything I do. 29 99:59:59,999 --> 99:59:59,999 I did spend from 2001 and onward focusing 30 99:59:59,999 --> 99:59:59,999 very much on what happens to people 31 99:59:59,999 --> 99:59:59,999 with disabilities before, during, and 32 99:59:59,999 --> 99:59:59,999 after disasters. And that's been a real 33 99:59:59,999 --> 99:59:59,999 particular laser focus of mine ever since 34 99:59:59,999 --> 99:59:59,999 and in fact, I've had the opportunity 35 99:59:59,999 --> 99:59:59,999 as an appointee in the Obama 36 99:59:59,999 --> 99:59:59,999 administration to spend just about 8 years 37 99:59:59,999 --> 99:59:59,999 at FEMA, establishing FEMA's Office of 38 99:59:59,999 --> 99:59:59,999 Disability Integration Coordination and 39 99:59:59,999 --> 99:59:59,999 building a cadre of disability experts of 40 99:59:59,999 --> 99:59:59,999 the same pond, supporting governors and 41 99:59:59,999 --> 99:59:59,999 emergency managers and most particularly 42 99:59:59,999 --> 99:59:59,999 engaging people with disabilities and 43 99:59:59,999 --> 99:59:59,999 disability organizations in emergency 44 99:59:59,999 --> 99:59:59,999 preparedness and throughout disaster 45 99:59:59,999 --> 99:59:59,999 response recovery and mitigation. So one 46 99:59:59,999 --> 99:59:59,999 last piece since I've been with the World 47 99:59:59,999 --> 99:59:59,999 Institute on Disability since last 48 99:59:59,999 --> 99:59:59,999 September, my ongoing focus on global 49 99:59:59,999 --> 99:59:59,999 disability rights has really been 50 99:59:59,999 --> 99:59:59,999 something that I've had much more 51 99:59:59,999 --> 99:59:59,999 opportunity to been actively involved in 52 99:59:59,999 --> 99:59:59,999 and I have spent the time since joining 53 99:59:59,999 --> 99:59:59,999 WID building a strategic planning process 54 99:59:59,999 --> 99:59:59,999 and supporting the organization to 55 99:59:59,999 --> 99:59:59,999 establish new priorities, taking a look at 56 99:59:59,999 --> 99:59:59,999 the organization's mission, and very 57 99:59:59,999 --> 99:59:59,999 recently establishing for particular areas 58 99:59:59,999 --> 99:59:59,999 of focus for the organization as we move 59 99:59:59,999 --> 99:59:59,999 forward. Thank you Marcie. Excellent, okay 60 99:59:59,999 --> 99:59:59,999 I apologize that my neighbor is chipping a 61 99:59:59,999 --> 99:59:59,999 lot of brush today, so it's making a lot 62 99:59:59,999 --> 99:59:59,999 of extra sound whenever I unmute, but 63 99:59:59,999 --> 99:59:59,999 don't worry, it won't interfere with your 64 99:59:59,999 --> 99:59:59,999 recording. Okay, so the first question is 65 99:59:59,999 --> 99:59:59,999 about the past. So tell of your first 66 99:59:59,999 --> 99:59:59,999 memory realizing that there were 67 99:59:59,999 --> 99:59:59,999 accessibility issues, discrimination, or 68 99:59:59,999 --> 99:59:59,999 lack of inclusion. What is your personal 69 99:59:59,999 --> 99:59:59,999 story or connection with the American with 70 99:59:59,999 --> 99:59:59,999 Disabilities Act? What do you remember 71 99:59:59,999 --> 99:59:59,999 about the day that it was signed, if 72 99:59:59,999 --> 99:59:59,999 applicable? And what was the impact on 73 99:59:59,999 --> 99:59:59,999 you and on others? Remember to tap 74 99:59:59,999 --> 99:59:59,999 something so that the camera shifts to you 75 99:59:59,999 --> 99:59:59,999 before you start. 76 99:59:59,999 --> 99:59:59,999 I first became aware of disability at a 77 99:59:59,999 --> 99:59:59,999 very young age. I had a best friend in 78 99:59:59,999 --> 99:59:59,999 first grade. His name was Gregory, and he 79 99:59:59,999 --> 99:59:59,999 and I were just wonderful friends. We 80 99:59:59,999 --> 99:59:59,999 spent a lot of time together, and then all 81 99:59:59,999 --> 99:59:59,999 of a sudden, one day Gregory was gone 82 99:59:59,999 --> 99:59:59,999 and I didn't know what happened to him or 83 99:59:59,999 --> 99:59:59,999 where he went and it wasn't until many 84 99:59:59,999 --> 99:59:59,999 years later that I found out that Gregory 85 99:59:59,999 --> 99:59:59,999 had Down Syndrome, and he had been removed 86 99:59:59,999 --> 99:59:59,999 from my kindergarten class and first 87 99:59:59,999 --> 99:59:59,999 grade I think it was at that point. And 88 99:59:59,999 --> 99:59:59,999 apparently he had been sent to some other 89 99:59:59,999 --> 99:59:59,999 school, somewhere. And the loss of his 90 99:59:59,999 --> 99:59:59,999 friendship was pretty surprising and 91 99:59:59,999 --> 99:59:59,999 I didn't understand you know where he went 92 99:59:59,999 --> 99:59:59,999 Looking back on it, it was kind of 93 99:59:59,999 --> 99:59:59,999 peculiar that we didn't just get to still 94 99:59:59,999 --> 99:59:59,999 be friends 'cause he didn't move away, he 95 99:59:59,999 --> 99:59:59,999 just stopped going to my school. But I 96 99:59:59,999 --> 99:59:59,999 remember just being confused and then just 97 99:59:59,999 --> 99:59:59,999 over the next number of years, I lived in 98 99:59:59,999 --> 99:59:59,999 a town that was also the home of Save the 99 99:59:59,999 --> 99:59:59,999 Children, and I was always very interested 100 99:59:59,999 --> 99:59:59,999 in the work that Save the Children was 101 99:59:59,999 --> 99:59:59,999 doing and I am embarrassed to admit that 102 99:59:59,999 --> 99:59:59,999 my earliest involvement in humanitarian 103 99:59:59,999 --> 99:59:59,999 work was from a very charity-model 104 99:59:59,999 --> 99:59:59,999 approach, and I spent a lot of my 105 99:59:59,999 --> 99:59:59,999 childhood raising money for Save the 106 99:59:59,999 --> 99:59:59,999 Children and getting involved in other 107 99:59:59,999 --> 99:59:59,999 activities that were very much following 108 99:59:59,999 --> 99:59:59,999 the charity-pity model and certainly not a 109 99:59:59,999 --> 99:59:59,999 model that uh making space for and lifting 110 99:59:59,999 --> 99:59:59,999 up other people with disabilities. The 111 99:59:59,999 --> 99:59:59,999 onset of my disability wasn't until many 112 99:59:59,999 --> 99:59:59,999 years later, but when I was in high school 113 99:59:59,999 --> 99:59:59,999 I had the, I had a requirement to do