Mission of the World Institute on Disability.

Welcome to Disability Matters with your host Joyce Bender. All comments, views, and opinions expressed on the show are solely those of the host, guest, and callers. Now the host of Disability Matters, here's Joyce Bender.

Hey everyone, welcome to the show, to all of our listeners in the United States and around the world. Hey, I really appreciate the— let's see, this week was 17 listeners. Last week was 18 listeners. I'm meaning countries, 18 different countries. So from China to Saudi Arabia to United Kingdom. How about that? So I just want to say, like Saudi Arabia, one listener. How about that? One listener. One listener, one listener, you can make a big difference. Do you know how? You can go tell other people not only about this radio show, but quality of life for people with disabilities. How when you have a disability, you should be proud, not ashamed, that you're living with a disability. So, okay, a special shout out to several people around the world. Richard Roberts, in Japan with the State Department. I love him. Gang-young in South Korea. I love him. I've known these two for a very long time and went to both countries with them and spoke through, throughout the country. Cheryl Harris in Tunisia, which is a new friend of mine at the State Department. And, uh, Venghameen in Kazakhstan. Love you all. Oh, you're such great disability rights leaders, and it means so much to me that you're carrying on what we did when I was there. Then, hey, Yesheko Dart, you know I never forget you. On every show, special shout out, Yesheko. And I tell this, but I'm telling it again, People with disabilities, we don't have the same history that other groups have. Do you know what I mean? If you go out and you ask people, you know, who is, uh, Martin Luther King Jr., of course everyone knows. But everyone would know John Lewis. You know, everyone would know— many people that are former or current advocates. Same thing with, you know, the Latina, the Asian, even the Native American community. But here's the thing. Go out and ask them who Justin Dart is. They don't know. That's what I mean. We need to be in the history books. We need to be more well-known. So, yes, you go— I told you what I'd do, and I am doing this on every show for over 2 years right now. Um, and Highmark— oh my goodness, Highmark has been our lead sponsor for 4 years. They are awesome. The CEO was on, if you didn't hear him, he kicked off this month, David Holmberg, a huge corporation, and he took the lead to celebrate the 30th anniversary of hiring 30 people with disabilities and to celebrate the 30th anniversary, and this year same thing, 31, 31. So, uh, they are just such a great company. Wells Fargo is a sponsor, and we are so appreciative also of everything they do to help us. Well, I must tell you that I was so excited to prepare for our guest today because I've known her way back, way, way, way back, like way back 1999. That far, and I love her. And she is a great international disability rights leader. She is one of those people I talk about that if you say, "Well, Marcy said," "Oh, Marcy Roth," you know, they know who you're talking about. And Marcy Roth is the Chief Executive Director of the World Institute on Disability. It is such an honor to have you. With us today. Marci, welcome to the show.

Thank you so much, Joyce. It's so wonderful to be with you. I always welcome the opportunity, and I'm really excited to be with you today at this pivotal time in the world.

Yes, tomorrow— wow, it's a big day— the presidential inauguration. What a big day, and we'll talk more about that, uh, in a little bit. But that is certainly a day in this country that is always such an important day. Um, so Marcy, you first of all have been a disability rights leader well known in the United States for years, uh, with the federal government and elsewhere. You have just You have been a passionate disability rights leader. How about if we begin by sharing your background as an international disability rights leader and your current role to our listeners, not only throughout the United States, but around the world?

That would be great. Yeah. So, I have been involved in disability rights for as long as I can remember. And early in my career, I did quite a bit of work around access to healthcare for children with disabilities in other parts of the world. That was the first opportunity that I had to be working on advocacy issues globally. And then when I joined CASH back in the mid-'90s, my full-time responsibility was advocacy and governmental affairs for an international disability rights organization. You know, over the years, I've been involved in the process of what became the Convention on the Rights of Persons with Disabilities. Then when I went to FEMA, I had the great opportunity to represent the U.S. in the development and implementation of the Sendai Framework for Disaster Risk Reduction. And now, for almost a year and a half, I have been the Executive Director and Chief Executive Officer for the World Institute on Disability.

Which, yeah, you've done so much. You know what, Marci, as you were talking about CRPD, Could you give like a quick update to our listeners as what CRPD is and where the United States is on that?

So the Convention on the Rights of Persons with Disabilities is a global treaty. Um, that treaty focuses on a list of very important areas in which countries or member states of the United Nations agree to plan for and address the the needs, rights, and opportunities of people with disabilities who number well over 1 billion people. And the U.S. was— the U.S. did not sign on to the Convention on the Rights of Persons with Disabilities, the CRPD, until 2009, and I think it was still 2009 because it was after President Obama took office. And I'm sorry, it must have been— yes, 2009. And then we are one of a very small number of countries that have not had our Senate go on to ratify the convention. So, I know that this new 117th Congress is another opportunity for the United States to join the rest of the world in ratifying the Convention on the Rights of Persons with Disabilities. We're very hopeful that that will happen.

Oh, I hope so, because, you know, we're considered a leader in the world. We must sign on to this because, you know, it's human rights in all of these countries for people with disabilities. So, You know, that will be a great day for all of us. Well, you are the CEO of WID, the World Institute on Disability. You have an unbelievable history at WID. Would you mind sharing that?

I would be proud to share WID's history. So, WID is one of the oldest disability rights organizations that was founded by people with disabilities and continually led by people with disabilities. WID was founded in 1983 by some folks who you are certainly very familiar with, and I would guess many of our listeners are as well. Judy Heumann, Joan Léon, and Ed Roberts. The three of them built an organization, and, you know, imagine back in 1983 the notion that people with disabilities would be leading a global organization. Was something that I think even in the disability community, I don't know that there were a lot of folks who envisioned that people with disabilities would be assuming that sort of leadership role. And even unfortunately to this day, there are many organizations that are for people with disabilities, but not led by people with disabilities. So, you know, WID has always had a commitment to advancing the rights and opportunities of the billion people with disabilities worldwide. And it was the vision that Judy, Ed, and Joan had all those years ago to bring research and policy into action. And over the years, what the organization has really focused on is operationalizing inclusion. You know, it's great to talk about inclusion and how the imperatives for inclusion, but how do you operationalize that? So, over the past years since I came on board, we have been focusing in several key areas, and I'm sure we'll have an opportunity to talk a little bit more about that. But this organization has an incredible history, and, you know, one of the lesser-known facts about WID is that Ed Roberts was recipient of a MacArthur Genius Award, and that award helped to fund WID's launch and early success. Ed will be honored once again this year at Robert's Day. Is January 23rd, this coming Saturday. It was his birthday, and although Ed left us way too young, back in the '90s, folks around the world still celebrate his birthday on January 23rd.

Wow. I didn't— I'm sorry to admit this, I did not know that. That is really awesome, January 23rd. How do people, like, in the— how is that made known to people in the disability community? Such as, well, sure, many of my employees over the years do not know that.

Well, um, so Ed Roberts Day actually became a legal holiday. Um, there was both California and U.S. House of Representatives' acknowledgment of his contributions to global independent living. And in fact, there are folks who celebrate this distinction that he brought to the world through an annual acknowledgment. And so, you know, some of the young leaders in California have taken a particularly active role. There's an organization in California that's part of the California Foundation for Independent Living Centers and the organization called Yo! Disabled and Proud has really led the way in celebrating Ed's legacy. Pretty, pretty great stuff. And, you know, I also have to share that that last night we learned that Crip Camp, which of course featured Judy Heumann very significantly, and the story of her role in advancing the rights of people with disabilities, last night she was— or not she, Crip Camp won yet another major award in the International— what's it? The International Documentary Association, I think. Something like that. A very big deal. So, you know, this is a big week for the history of disability rights, and it's a very big week for the future of disability rights.

Yeah, wow. You know what, Judy Heumann's book, Being Human, is so good, and it talks about WID. I almost cried when in the back she included me with all the disability rights leaders. I was so honored for her to do that. But if you have not seen Crip Camp on Netflix, you are missing a really great film. So if you haven't seen it, Crip Camp on Netflix, you've You gotta got watch it. It is just a tremendous movie. Hey, Marcy, you mentioned that WID is undergoing a significant transformation over the past year. I have heard you say WID is focusing its resources on disability advocacy gaps. Could you talk about that and tell us what that means and what you're going to do to implement a strategic action plan?

Glad to talk about that. And, you know, the— there are many disability advocacy organizations doing amazing work here in the U.S. Locally, state, nationally. There are lots of global disability advocacy organizations doing great work. It— having worked in disability advocacy for longer than I'd care to admit, I have always recognized how important it is to focus in the areas in which there are holes, in the areas where there are gaps, and not to, you know, add the voices of one organization to areas where there's already great leadership underway. It's important to us that WID is not an organization that is competing for limited resources. Rather, we want to be focusing on building additional opportunities for disability-led organizations. So, our strategic action plan focuses in 3 key areas. First of all, we focus on opportunities for accessibility solutions. And that has included, for example, a very robust and growing user testing program. We do lots of user testing where people with a variety of disabilities, people with a variety of accommodation needs are paid to test, you know, whether it's digital accessibility or goods and services. We have a remote and onsite testing program. And this is an area in which we're filling a gap. We also provide support to large national and global conferences to support their accessibility by assisting people who have an interest in those topics to attend and to have the accommodations that they need in place. and also to have onsite support, or in these days, remote support, to make sure that all conference attendees have accessibility to fully participate. In the area of digital systems and tools, WID has a longstanding program called Disability Benefits 101, and this is a program that is state-specific and benefit program-specific, and it enables people with disabilities to get the information that they need to make key decisions about working, about the benefits that they might be eligible more about the services that might be available to them in order to facilitate their ability to work. And then, an area that is a new area for us, as you know and as maybe some of your listeners know, I've worked in the gaps around what happens for people with disabilities before, during, and after disasters for a long time, since, in fact, the September 11th terrorist attacks back in 2001. And WID has now begun a focus on emergency preparedness, disaster risk reduction, and climate adaptation. So, filling lots of gaps in those areas, but working to build capacity among other organizations, not working in competition with those organizations. So, one key area is our work in launching the Global Alliance for Disaster Resource Acceleration, which began back in July of last year. And the Global Alliance for Disaster Resource Acceleration, which is also known as GADRA, has brought together folks from in 69 countries at this point who are focusing on directing disaster resources to disability-led organizations on the ground in disasters, accelerating the resources that these organizations need in order to meet the needs of their community. And I'm happy to tell you more about that.

Wow, that is awesome. You know what, Marcy, something I've always liked about you is that too many people with disabilities, they're in silos, and I don't know why we do that, but you've always been one to work with other people, partner with other people, just the way you described, and You know, you're a good example for others. But hey, it's on the half hour. It's time for Advocacy Matters with our own anchor person, Perry Jude Radesik from Disability Rights PA. Perry, you with us?

Joyce, I, I'm here and it's good to be with you.

It's always good to hear you, Perry. So So, Perry, what's our news for today?

Well, this is about the presidential transition and people with disabilities. We know that tomorrow, uh, President-elect Joe Biden and Vice President-elect Kamala Harris will be sworn in as our 46th president and vice president of our United States. But who actually runs the day-to-day operations of the government for President-elect Biden happens through a long administrative transition process. Some of it happens before the swearing-in ceremony, and some happens in the months ahead. Now, traditionally, this gives the incoming president time to screen and select people who are going to run our federal agencies. Now, this week, the USAID Senate has started hearings on President-elect Biden's top cabinet picks. We're talking Secretary of Treasury, Homeland Security, Secretary of State, and on Thursday, the nomination of Peter Buttigieg to be the Secretary of Transportation. So, these top-level picks are having their hearings now. Now, people with disabilities are more organized this transition year than ever before and are actively recruiting talented individuals to serve in this new administration in either appointed service, boards or commissions, or other types of positions. Now, at disabilityrightsPA.org, we have a link to a couple of important pieces of information. One, it's the 46th Disability Job Opportunity Project, and that's where you can go and learn more about how people with disabilities can become involved in the new administration and to throw in your resume, uh, for a position or board or commission. Now you also have to go to buildbackbetter.gov and apply first for one of the open positions in federal government. So, you got to go to these websites, learn about this process, and if you're one of the individuals who are thinking about serving in the new administration, these are the places you go to. Also, on our website, we have a link to the Plum Book, and this is a book that's all the available appointed positions in federal government. And even if you can't go to D.C. and relocate to D.C. to work in the administration, maybe you might want to think about serving on a board or commission. And I'm going to tell you, there are lots of boards and commissions that directly impact the lives of people with disabilities. That's like the Amtrak Board of Governors, the Committee for Purchase from People Who Are Blind or Severely Disabled, the Equal Employment Opportunity Commission, Legal Services, the U.S. Commission on Civil Rights. I could go on, but the full list is at buildbackbetter.gov. We know advocacy matters, so really, if you have the skills and experience and are thinking about wanting to join the new administration or serve on a board or commission, you got to go to our website at disabilityrightspa.org and find the links to Build Back Better and the 46th Disability Job Opportunity Project, Joyce.

Wow. And you know what? That is so very important. Marcy was an appointee in the Obama administration, as we mentioned, at FEMA. But we've got to see leaders in those appointee positions. So, you know, if you're listening, And once again, please go to disabilityrightspa.org to the link and, you know, check that out. You know, get involved, apply. We need more people. The other thing that I like that Perry Jew talked about was that there are commissions and boards. So it isn't just Assistant Secretary secretary of an agency. It's far— there are far more opportunities. I hope you take advantage of that. Why? So we have a voice. And Perry, thank you so much for keeping us up to date and providing that great news, and we will look forward to talking to you next week.

Sure, take care, Joyce.

And Marcy, that is so important, isn't it?

Oh, it's very important. It was great to hear from Perry, and she's absolutely right. Opportunities abound. Certainly, the imperative for people with disabilities to be serving in the senior leadership roles and as well many opportunities throughout this new administration for people with a variety of skill sets. And I think we're going to see— I'm hoping we're going to see lots of folks with disabilities serving throughout this administration.

Me too. Me too, I'm so hopeful. You know what, one thing you are extremely outspoken about, uh, and at times angry about is COVID and the disability community. Um, would you talk about that for us and tell us about the role that WID plays?

Uh, yes, um, I am I am very outspoken, and I am furious. First of all, when people say about COVID you know, "Gee, we couldn't have seen this coming." Actually, having worked at FEMA for almost 8 years, working in the federal government, I know for sure that the government agencies did see this coming, and we spent many years practicing through exercises and discussing the impact. And my role when I was there was to work with the community, with disability community leaders, and to support the federal government to be prepared to include people with disabilities at the table and in all of their actions, regardless of what the disaster was. So, you know, we find ourselves, unfortunately, at a place where not only did they not implement plans that were in place, they have essentially disregarded people with disabilities who, you know, we've been hearing for, you know, almost a year now that COVID disproportionately impacts certain people. And then, you know, The list usually is, you know, uses terms like the vulnerable and, you know, people who are old and people with, quote, underlying conditions. Well, the fact of the matter is they are almost always referring to people with disabilities who have or should have had civil rights protections, and the unbelievable disproportionate death of people in congregate facilities. It has been widely told that 40% of the deaths have been in nursing homes. So 40% of what is now 400,000 deaths. I mean, we're talking about a massive number. 160,000 people with disabilities. Have died in congregate facilities, because virtually everybody in a nursing home is a person with a disability. You don't go to a nursing home because you're old. You go to a nursing home because you have a disability and you have not been able to get the support and accommodation that you need in order to live in the community, despite your legal protections under the Americans with Disabilities Act, under the Rehabilitation Act. So, here we are. At this point, we've had 2 or 3 people dying every minute for the last number of weeks. Of that number, as many as half of them, maybe more, were people with disabilities. And we are even today still not talking about the disproportionate impact of COVID on people with disabilities. The Partnership for Inclusive Disaster Strategies, which I launched when I first left FEMA, and which has subsequently, since I came to WID, been led by Herman Parodi and Shailynne Sluzales. The Partnership for Inclusive Disaster Strategies has been bringing disability leaders together every single day since February 28th of 2020. So, almost for a year, we meet every single night, 6:00 PM Eastern. That includes Saturdays and Sundays. That includes every single holiday. We have been meeting for an hour every day since the beginning of COVID And we need to identify problems, to brainstorm potential solutions, how to work with government, how to work with the healthcare system, how to work with the nonprofit and private sectors. And unfortunately, till this day, our government has failed miserably. And as a result of that, thousands— 160,000, probably far more— have died without the legal protections that they— that we have fought so hard for and were not made available to them. It's disgusting. It's disgraceful. It's inexcusable. The resources that we put in place at FEMA, the resources that should be in place at the U.S. Department of Health and Human Services and in many other places throughout the federal government have failed miserably, and people with disabilities have paid a terrible price. This is true globally, and certainly people with disabilities have been horrifically excluded around the world. But those numbers are worse absolutely nowhere than here in the U.S. Wow.

Yeah, I remember, Marcy, when I first heard you talk about the slaughter, and I said, "What slaughter?" And you said, "Of us." people with disabilities in these residential settings. And I remember when you said, you don't go there because you're old, you go there because you have a disability. And by the way, listeners, it's not all older, elderly people. It is not. So don't think that. You're wrong if you think that. Well, Marcy, thank goodness we have you out there speaking for us. I did want to talk about the inauguration tomorrow. I am so excited, but I am somewhat fearful. I thought about, you know, God forbid anything would happen, as happened before, any of the buildings, or outside, or anywhere in those buildings, which, which I know you've been in many times. Do you believe, and I'm meaning across the United States, these capitals Do you believe they have evacuation plans in place if something would happen and a person has a disability and they have to get them out?

So, let me say, having worked on evacuation planning with our government for many, many, many years, long before I went to work for the government, and long since I've left the government. And the answer, unfortunately, is a resounding no. Have we made progress in some areas? Yes. Can any state, can the federal government, can any local community say we are sure that our whole community will get the information that they need to be able to take actionable steps to take their own personal protective measures? Can we say that people are able to get the information they need in accessible formats? No. Can we say I would say that building evacuation, multi-story building evacuation, or accessible transportation for evacuation, are we there yet? Absolutely not. Are our shelters accessible? Nope. Is our temporary housing accessible? Nope. Is there progress in all of these areas? Yes. But whether it's the legal obligations or whether it's just good practice, these are areas in which we need to be 100%. We don't have any room for some people to not get some life-saving information. We need for everyone to be able to safely evacuate a building. And in the middle of a disaster, there's always going to be a need to do differently than you planned. But if you don't have a plan, then surely you've made an assumption that not everybody is going to be able to evacuate. So, you know, before the next disaster or before the next concurrent disaster with COVID we have so much work to do. In order for people to get information that's accessible to them, that they're able to take action, that they're able to move safely, that they're able to shelter safely, and that they're able to return home after a disaster, or that they're able to move on with their lives when the unthinkable has happened.

Well, guess what? I see a role for WID. I see a role. We got to get WID. And by the way, everyone, I am very honored to be on the board of WID. And just as Marcy's talking, I'm thinking, wow, we need to get in front of senators and different people and talk about like the Smithsonian, all these buildings, if there would be a disaster, how are you gonna get people with disabilities out of there? So, you know, I see a big role for WID there, Marcy.

Well, it's great that you said that because, in fact, Joyce, a bill has been introduced twice in the 115th Congress and in the 116th Congress This bill is called the Real Emergency Access for Aging and Disability Inclusion for Disasters Act. The short version of that is READI, R-E-A-A-D-I, for Disasters Act. That bill has a variety of provisions in it that would address some of these very key shortfalls. Obviously, it didn't pass in the— didn't pass in the 115th. It unfortunately also didn't pass this past Congress. But we are very hopeful that Senator Casey, who was the original author of the REDI Act, Senator Langevin and— I'm sorry, Congressman Langevin, and a number of House and Senate bicameral bipartisan cosponsors will once again work together to make sure that this bill gets reintroduced and this time gets passed. The bill—

I bet it will. It's going to have to because look what just happened. Look what just happened at the Capitol. So you're in the Capitol, you're a person who is blind, uh, or you're in a chair or you're deaf, whatever it is, how are you going to help get people out of these buildings? They need a plan. So You know, I'm so proud that Senator Casey is our senator. And there you go, WID has a big role. And by the way, if you're listening right now, remember the show is on demand. Make sure you tell your friends about this very important show today. You can go to Apple, Spotify, and subscribe to Disability Matters with Joyce Bender on voiceamerica.com. And you can be sure that I will be making that clear on our social media. One last thing: when you're hearing this, I'll bet you're saying, wow, yeah, we better have a plan at these Capitol state buildings, all these buildings in DC. We need a plan to get people out. You know, you can't do all these things without funding. So Marcy, what is the website in case someone is listening to the show and wants to make a donation, whether it's $5 or $5,000? Where do they go?

Well, thank you for asking that, Joyce. Uh, please go to wid, w-i-d, dot o-r-g. WID.org. And we welcome support. We also welcome partnership. The Global Alliance for Disaster Resource Acceleration is a partnership of a number of wonderful corporations and foundations. In fact, the Bristol Myers Squibb Corporation and the Bristol Myers Squibb Foundation were our first member of our founders circle. And I know, Joyce, you have as well had a great opportunity to work with them. And they Among the support that they have offered us, 2021, they are offering a double match to their employees who donate to WID. It's really incredible. It's— we're very, very grateful to them and to all of our Founders Circle members and the other folks who support the work that we do. And as well, I want to give a shout out to the folks who support our sibling disability leader organizations. Disability organizations that are led by people with disabilities are very often not supported in the same way that disability services and disability, you know, the organizations that are for people with disabilities and not led by people with disabilities. So, we always appreciate that kind of support.

Well, you know, why I'm bringing that up is people always sit back and they talk about, "Oh my God, yeah, people have to do this. They need to do this." But, again, you can't do that without money. You know, without revenues, with only restricted funds, you may have hundreds of thousands of dollars and not be able to turn on the lights. So make sure that you consider making that donation. Don't consider, do it. By the way, Tina Marie Duff is that superstar at Bristol-Myers Squibb that made, helped make that happen with Marci. So thank you so much. Hey, Marci, we only have about 3 minutes left in the show, but I did want to ask you, are there specific priorities for the Biden-Harris administration from WID?

You bet there are. So first and foremost, let me say I would say that we share the incoming Biden-Harris administration's priorities. In fact, we think that these priorities are focused very much on the inclusion of people with disabilities as both as recipients of immediate and sustained change, but also in key leadership roles in making change. So, the Biden administration priorities are, you know, COVID-19, economic recovery, racial equity, and climate change. Well, these are priorities when it comes to serving people with disabilities. And the work that we are already doing focuses on each of these areas. People with disabilities who are multiply marginalized, Black, Indigenous, people of color, people experiencing poverty are always disproportionately impacted in the shortcomings and failures of our government. And among WID's other priorities, we have got to improve the civil rights complaint process, which right now depends so heavily on people already having been harmed. We have got to make it possible to get on the front end before people are hurt. We need to ratify here in the U.S. the Convention on the Rights of Persons with Disabilities. We need to monitor and enforce Section 504 of the Rehabilitation Act and throughout the Rehabilitation Act because every federal dollar needs to be spent in compliance with physical access, program access, effective communication access, and there is a huge hole in the monitoring and enforcing of these laws.

And Marcy, Marcy, I want to tell you something. I love what you're saying because those things, you know what they are? Quality of life for people with disabilities. And thank you so much for being with us today, Marcy.

Thank you so much, Joyce. I love you. You're magnificent. And we're so excited to have you joining the board of the World Institute on Disability. Thank you.

We love you. Love you too. Love you too. And we end every show with a quote, and today that quote is, "It is not possible to be in favor of justice for some people and not be in favor of justice for all people," said Martin Luther King Jr. This is Joyce Bender, America's Voice, where disability matters, at voiceamerica.com. Talk to you all next week.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific Time 2 PM Eastern time for another installment of Disability Matters, right here on the Voice America Variety Channel. We are the leader in live internet talk radio. VoiceAmerica.com.