How WID Is Addressing Needs of People with Disabilities During COVID-19

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. Hope you're having a great day. Um, I always have to start with my special shout out to Yoshiko. Dart, yeshiko, lead on. And I have to say, before I say hello to all of our friends, I just want to once again send my condolences to Mr. Floyd's family. I know today is the funeral service in Houston, and I just want you to know that all of us at Bender Consulting Services are with this entire civil rights movement and protest to recognize that violence against Blacks in America is absolutely wrong. So, so you know, we're all with you. And a special shout out to two of my good friends, uh, Richard Roberts in Okinawa, Japan, and he is with the Embassy, the State Department, and Gang Yong Cho in South Korea, in Seoul, my other good friend. And why I— and they both work for the State Department. So when I spoke in Asia, I was at both of the embassies and became close friends. I'm mentioning this, I want to— want you all to know that we are figuring out how to have a show from Japan and then from South Korea so we can get the news out to everyone, uh, English-speaking, and figuring out a translation if possible. So really excited about that. I'm so excited about that. And thank you to the countries around the world that listen to the show. Who thought that number one would be China? And I am just with all of you. People with disabilities in China and the other countries really fighting for your life and freedom. And how amazing— I'm talking about the shows around the world that— I mean, the countries around the world that listen to our show when we have an international star located right here in the United States. Miss Marcy Roth is the executive director and CEO of World Institute on disability. And, uh, she's also a great person. You know, she's one of these people, if you say Marcy and you're in the disability community, you know who Marcy is. And I love her. I think she is awesome. And it is a true honor to have us— to have her with us today on the show. Marcy, welcome to the show.

Thank you so much, Joyce, and I love you too. You have always been such a bright star guiding so many important conversations, and I'm just thrilled to have the opportunity to spend some time with you today in my new role.

Well, you know what, all of our listeners in the United States are interested, but we have advertised this, and I know that people with disabilities people with disabilities around the world will really be tuned into this particular show. So, Marci, for all of our listeners, how about if you start by telling everyone what the World Institute on Disability is, known by WID, and also your role, what you do?

Well, and I also want to begin By acknowledging the civil rights leadership of so many people who have joined together to put an end to the violence that people have experienced, particularly Black people, Black and brown people who have experienced police violence that has just never been addressed. And here we are, an amazing civil rights movement that has engaged the whole world. I am grateful for the leadership that folks have shown and really hopeful that all of us are going to take the necessary steps to put an end to the white privilege approaches that are not only seen among the non-disability community, but we in the disability community have engaged in this very same sort of white privilege. And we at the World Institute on Disability have already started taking some additional steps and look very much forward to growing and changing as we go. The World Institute on Disability was originally called to action in 1983, and we have been advancing promising disability inclusion policies and practices globally for 37 years. Our call to action is always revisiting rights and indelibly embedded in our strategic engagements with leaders, allies, and visionaries who share our commitment to innovative solutions We are proud to be disrupting, transforming, and optimizing the future of disability inclusion. We are an organization that is growing. We, you know, taking a very hard look internally at our roots, where we came from, what the organization was meant to be, where we're at now, and where we need to go next. I came on board as the Executive Director and CEO in late September of 2019, so I've been on board for about 8 months now.

8 months, and look what you've already done. Wow. Although no surprise to me. Hey, Marcy, what's the website?

The website is www.wid.org, which is W-I-D dot O-R-G.

Okay, and the reason I'm also bringing that up is if you're listening to the show and you're thinking about people with disabilities around the world, and how they need our support. You can make a contribution to the World Institute on Disability, www.wid.org. You know, I always tell people, people will say, we need, in the disability community, we need to do this and we need to do that, and I want to see this happen and that happen. And I said, me too. Do you ever donate to those organizations? Because guess what? It takes money to run an organization. So I just wanted to mention that, uh, before we go any further. And Marci, it is absolutely a such a great thing having you represent, uh, the United States and the world. You know what I can't believe? I can't believe when you think about it that this was started in 1983 by 3 great disability rights leaders. Think about that though, 7 years before the ADA was signed, and they're thinking about disability around the world. I mean, this is unbelievable when you think about it that way. But what made, what made those leaders decide to do that? Once again, 7 years before the ADA, still so long of a way we had to go in this country. What made them decide to embark on this, and who were those 3 people?

Well, Joyce, those 3 amazing leaders— Ed Roberts, who is no longer with us; Zee Hoonan, who is a powerhouse, and, you know, she's now, you know, star of a fabulous award-winning film, Crip Camp, and author of a wonderful book on being human. And she and our dear third leader, Joan Lian, who was, you know, in many ways the operations person for WID. Ed, Judy, and Joan came together and built an organization with the intention of taking research, policy, education, and moving all of those into action. They intended to become one of the first disability-led organizations in the world with a focus not on just talking about what needed to be different, but actually making change. Words into action. And obviously, 7 years later, their leadership was critical to the passage of the Americans with Disabilities Act. And then moving forward, so much of the work that they've done has been has really truly changed the world.

Yeah, no doubt about it. And now you're that changer, Marci. Now we have you in that role. But Marci, you know, you— that the past like 8 or 9 shows, uh, have been on the impact of COVID on the disability community. We are trying to come up with an avenue, a way that people, whether they're deaf or psychiatric disability, or in this case international, would have a place to go to get information. So that is why I started doing this. And I was really excited to have you on so that you could share with our listeners what WID is doing on an international basis for people impacted by COVID-19. COVID-19 because it's everywhere, of course. It's a pandemic, so it's global. And I wondered if there were any countries you could talk about specifically.

Mm-hmm. Well, so when I first started at WID just a few months ago, we had engaged in a fairly robust strategic planning process. As a part of that process, we identified some specific actions that the organization was prepared to take. We had recognized in the work that I've been doing for many years that there are very significant gaps globally in what happens for people with disabilities and disability-led organizations, sometimes called DPOs, or Disabled Persons Organizations, or OPDs, Organizations of Persons with Disabilities. And in the US, frequently referred to as disability-led organizations. Any way you slice it, we're talking about organizations led by people with disabilities and focused on the needs and rights of people with disabilities. So we knew, um, for a very long time that disability-led organizations just never seem to get access to disaster relief assistance in the same way that the larger disability service organizations, the organizations that, you know, have a much more robust infrastructure, bigger budgets, a lot of government funding. We recognize that the folks who are doing the most work on the ground are often not accessing any of the disaster relief funding. So, as part of our strategic plan, we had intended to build over time a collaborative of folks working to close this gap in disasters. Our board approved some steps that we were ready to take in early March, and COVID-19 was wreaking havoc right about the same time. So, the plan that we had that would have spanned a year in the making got, you know, very significantly accelerated. And so, we began by hosting town hall meetings, global disability and disaster town hall meetings. To bring folks together to hear from those local disability-led organizations, those DPOs and OPDs, to bring folks together to hear what's happening and to find out what sorts of supports and resources people are able to access. We've now held 2 town hall meetings. Both of those meetings have had over 300 people register. The second town hall meeting last week, I was thrilled to hear that we had 25 countries represented, and there were folks on from every continent except Antarctica. So, you know, I think it's safe to say that we had a fully global attendance. And so, you know, we're hearing from folks in, you know, across the world about the disproportionate impact of this virus on people with disabilities. So, you know, whether it's the folks in Uganda or the folks in the Bahamas or folks in India or Bangladesh, we've had folks speaking to us from, you know, many places And sadly, the stories are all the same. People with disabilities are dying at unbelievable rates. And the local organizations trying to provide assistance on the ground as usual, are not getting any of the resources that are being made available to the better-connected, better-funded organizations. So, and I want to make a really important point when we talk about what's happening worldwide. I want to make the point that there has been no country with a greater loss of the lives of people with disabilities than the United States. Our loss of disabled lives is gobsmacking. People talk about the deaths of people in nursing homes and congregate facilities, they talk about people who are old. They talk about people who have underlying conditions. And nobody quite seems to get it that those are people with disabilities. Virtually everyone 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, because you have needs that your community has been unsuccessful in either providing to you or providing but in a way that does not adequately meet people with disabilities' needs. For maintaining our health, our safety, our independence, and our dignity. So, you know, we've heard from folks across the planet that people with disabilities are being impacted at extreme rates. And by and large, They're not even being given the respect of being recognized as people with disabilities. So the work that we are doing, and we are about to move into the next phase of our work, we are about to launch the Global Alliance for Disaster Resource Acceleration. This is an alliance of disability-led organizations and funders working together to direct resources to where they're needed most, to those local organizations who time and again are doing the hard work and time and again, not accessing the resources to be able to have the greatest impact. So, much work ahead. Our Global Alliance for Disaster Resource Acceleration, also called DADRA, as an acronym, will be rolling out on July 9th. We have some really wonderful partners who are not just focusing on COVID-19. They recognize with us that we can't keep building solutions disaster by disaster. That we need to build a sustainable process by which we have in place that rapid response ability to support people with disabilities and those organizations as soon as disaster strikes. Our partners In this, we work very closely with a wonderful organization, the Partnership for Inclusive Disaster Strategies. I've had the opportunity to serve in a leadership role with that organization since its inception. And we have a partner organization called ANG Inklusiva, The partnership is here in the U.S. and ANG INCLUSIVA is an organization that is headquartered in Santiago, Chile. We are all working very closely with the United Nations, and I'm actually in my leadership role doing a project with the UN with FEMA and the Office for Disaster Risk Reduction as we speak. Happy to tell you a little bit more about that.

Well, you know what, Marci, I'm— I should tell everyone, when you hear her talk about this emergency and disaster preparedness for people with disabilities, she is like expert in this area. When she worked for FEMA, that's what she And then when she did consulting, that's what she did. So when you hear her talk about this at all, just know she definitely knows what she's talking about. That's number one. Number two, what you said about these congregate settings, people think there are only old people here in these nursing homes, and there are old people, but there are also young people or younger people people with disabilities, but as you said before, they all have disabilities. So when all these people are dying, it's people with disabilities dying. Uh, and same thing, you know, in many other congregate settings. So I'm really, really glad, really glad you brought that up. But right now on the half hour is our news break, Advocacy Matters, with our great anchor lady, Perijude Radesic. Welcome, welcome, welcome with our news break for the day.

Joyce, thank you. We appreciate the time on your show. And today we want to talk about Black Lives Matter and justice in policing. Many disability organizations have issued statements in support of Black Lives Matter and have mourned the death of George Floyd. Disability Rights Pennsylvania has. I know Bender Consulting has. And on Saturday, disabled people gathered for a Black Disabled Lives Matter march. And if you didn't know that and you want to follow the videos and reports from the March. You can do that on Twitter. You just use the hashtag that the organizers developed, and it's #BlackDisabledLivesMatter. Now, we must finally embrace a reform agenda to end racism, and at the top of that list is police reform. We know many Black Brown, and disabled individuals have lost their lives and have been brutalized at the hands of law enforcement. Calls for justice in policing have been out there for so many years. We hope that now is the time for change. Here in Pennsylvania, just yesterday, the House Legislative Black Caucus took control of the rostrum to highlight the need for change, and they asked for a special session of the legislature to look at policing reform. Pennsylvania House Speaker Turzaj said he would work on the issue with the caucus. Other states and municipalities will be moving to reform how emergency services and policing can happen in our communities different from how it's happening now. In Washington, D.C., the House and Senate Democrats released legislation, and it's called the Justice in Policing Act. Now, if you wanna find information about this, it's on our website at disabilityrightspa.org. Org. It's up there now. You can go to the disabilityrightsba.org website. You can find a link to what the House Legislative Black Caucus did yesterday. There's a news source there. And you can find a link to the legislation and a summary of the bill that the House, Senate— House and Senate Democrats released yesterday. So, there's a hearing tomorrow Wednesday, June 10th at 10:00 a.m., the U.S. House Judiciary Committee is going to hold an oversight hearing on policing practices and law enforcement accountability. That hearing, again, be— begins at 10:00, and there is a link to that hearing on our website under this segment. So really, I— what I want to do is encourage you to read the links that we have on policing reform. The protests are going to continue. Join one. 76% of the American public is behind Black Lives Matter and the change that's about to happen. So educate yourself on justice in policing. So Black Lives Matter. We know disabled Black lives matter. Get involved, speak out against racism, and commit yourself to be anti-racist. Visit disabilityrightsPA.org for all of this information discussed on the segment today. And remember that advocacy does matter in all of this as well. Thanks, Joyce.

Oh, it so does. It so much does. And thank you, uh, so much, Perry Jude. DisabilityRightsPA.org. Go Go to that website, read what we— what Perry has out there. I'm just so proud to be on the board of this organization and so embrace, as you said, Bender Consulting Services so embraces what you're saying. So thank you so much for being with us.

Hey, thanks Joyce, and all of you have a good week.

Thank you. You know, there's something you said, Marcy, that I hope happens, and that was when you were talking earlier about sharing, uh, you know, your sorrow and embracement of what the Floyd family went through. You were saying, and now we must take steps for change. That is my question. You know, it's absolutely unbelievable how the world has embraced this. Unbelievable. And I'm so thrilled about that and behind our, you know, our protesters, because that's what makes America the country that it is. What do you think will be— what do you think can happen to keep this going afterwards? You know what I mean? What you said about taking the steps we need to take for change.

So for WID, you know, it has— we were very much internally discussing our own racism, our own actions, and what we needed to be doing differently, and have been seeking guidance from some folks who we respect very much and want very much to help us to be very intentional in the next steps that we take. And we have some important work ahead of us. What I hope we will all be driving towards in this call for significant reform is that as we make progress progress with law enforcement reform. As we look at some of the suggestions that are underway, you know, moving mental health support services away from a primary police function, moving the support for people who are homeless away from a primary law enforcement responsibility. We need to make sure that those kinds of resources are then provided by culturally competent providers. We will not be doing anybody any favors if we just replace one wrong approach with another wrong approach. You know, having more social workers doing this work does not mean that people with disabilities are going to be less likely to be institutionalized. Having resources for more staffing or community resources doesn't mean that people with disabilities are going to get the home and community-based services and supports that enable them to live their lives in the community. And so, you know, among the many challenges that we have ahead of us to make sure that George Floyd's death was not just simply a rallying cry, a shiny object, and then we move on to the next thing. This needs to be an opportunity for real change, and that real change must be real for people with disabilities. That, that change must be felt by Black people with disabilities, many people of color with disabilities who continue to get the very worst that our systems have to offer.

Oh, that's so terrible to think that.

Yes, yes. It's going to be a real challenge for disability leaders to persist in ensuring that the larger community doesn't continue to discard, devalue, discriminate against people of color with disabilities.

And I so agree with you. Marci, I wanted to give you time to share with our listeners any ideas you have regarding COVID-19 and the disability communities and what you've done in emergency preparedness. You know, is there any ideas you have that you'd like to share?

Mm-hmm. So, so the first thing I want to say to you is thank you. Is while some folks will say, "We just never could have seen this coming," that could not be farther from the truth. We absolutely saw this coming. As a matter of fact, in my years at FEMA, we regularly participated in exercises and discussions around pandemic, and it was always my responsibility to try and force people where I couldn't get them to just come along, to force the issues around how we were going to accommodate the physical program and effective communication access needs of people with disabilities. In a pandemic. Needless to say, you know, my work was not effective, and heaven knows the work at PAM today has not been effective. People with disabilities have not had the kind of access that we are entitled to here in the U.S. under the Rehabilitation Act, under the Americans with Disabilities Act, the Pandemic and All Hazards Preparedness Act and its revisions. The failures of our government to address the requirements that go along with the use of federal funds is just egregious. The institutionalization of people in environments where infection control was already a huge and under— under-recognized problem. Certainly, there has been a failure of monitoring and enforcing civil rights protections. And globally, obviously, there has just been a total failure. But we are now in a position where, you know, a couple of things. Number one, we don't have to go back to the way things were. We don't have to stay stuck where we are. We can, in fact, move forward. We can lean into this horrible time as an opportunity to make real change. So, you know, to the credit of the folks who are in the streets as we speak, to the leadership who are doing the very important work of calling for change, and as we are very much still in the middle of this pandemic, the change can really make a huge difference. That being said, and this is my second point, there are many, many, many of us who are now coming to terms with the fact that we are the sort of new host homebound. I would never in a million years have thought that I would describe myself as someone who is, quote, homebound. It is antithetical to everything that I have ever believed. I hate the term, and I always would have said, you know, anybody who can't leave their home, you know, we need to make sure that there are supports in place for them to do that. Well, many of my dearest friends and closest colleagues and I are coming to terms with the fact that we may not be able to leave our homes for a very long time to come. And there is a disproportionate impact on us regardless of the resources that someone may have. The decision that others are making to be done with COVID the decisions that others are making to, you know, get on with life, without considering the fact that we are still very much in the thick of an absolutely brutal disease means that for many of us, we literally won't be able to go anywhere for who knows how long. And this is a very important time for disability leaders to talk about what our next steps are. How do we make sure that people with disabilities who are— who have worked so hard to try and change the employment angle, what are we doing to make sure that remote work becomes a standard? What are we doing to make sure that when people need to spend extra money to, you know, have groceries brought in or when they need to spend extra money for the personal protective equipment that, you know, maybe they can finally begin to get their hands on? Are these— are Are these expenses, are these resources, are these processes that once again people with disabilities have to navigate on our own, or can these become community-wide efforts to make sure that everyone has the opportunity to be a fully participating member of the community? Tough question.

Yeah, tough question, but so right on. And we do need our disability leaders and thought leaders to take this seriously because what you said is so true. And how long could this go on? We don't know. But, uh, and Marcy, thank you for being one of the leaders, uh, bringing this forward because really the leaders need to get together and start working on this now, because the now could be a long time, as you just said.

Mm-hmm. Mm-hmm. Exactly. And, you know, COVID does not exclude us from concurrent disasters. We have already seen a number of, fortunately, fairly small events, But, you know, it's hurricane season. It's always earthquake season. Mm-hmm. There are many disasters that will really push us to make some value decisions about how we take care of each other, how we value human life, how we— invests in the health and safety of the whole community. And, you know, WID is proud to stand with a small group of organizations working together to keep our focus and keep getting ready and staying ready. And I am hoping that the significant changes that our communities are embracing will have the kind of staying power that will actually benefit the whole community.

And I'm also glad, Marcy, that you brought up about we are still in the middle of this— brutal virus, COVID-19. And we are, because it is already spiking in different states, one of which is where our studio is, Arizona. And, you know, I heard— you know how people will say, oh, if you're out in the warm air, hot air, you know, this goes away. Well, that must not be true. Because it's Arizona where it's spiking. But I'm glad you brought that up because, uh, folks, it— coronavirus did not go on vacation. It's still here, and you need to be cautious. So many of us with disabilities, there are underlying, uh, comorbidities, and you've got to be careful, no matter who you are, no matter who you are listening to the show, because It's a pandemic and it is not going away. And with all the reopenings and, uh, you know, the mass gatherings and congregate settings that have started, you're going to see a continued surge of this. So please wash your hands, wear the mask, stay home as much as you can. But you've got— if you're going out, and I understand why you want to go out, but you've really got to be careful, really careful. And Marcy, one other thing you said, you know, people with disabilities, we've got to stay united. This is one of our problems, not being united, because right now, how the heck would we know what's going on if we didn't all communicate. And by the way, Marci, what is your email at WID?

Mm-hmm. My email is marcie@wid.org. That's M-A-R-C-I-E at W-I-D.

And you know, I'm giving you that because if you're listening and you're interested in some type of webinar or, you know, Zoom meeting, whatever it would be with Marcy as a presenter, you know how to get through to her. With technology today, thank goodness we are able to communicate unlike in 1918 with the Spanish flu. Which was horrifying, but you know, we have a way now. We've gotta keep in touch. Hey, Marcy, before we close the show today, I do have a question. Sure. You're so passionate and kind, so you had to have a role model along the line here. Who is your role model or models?

Well, thank you very much for asking. That, and thank you for the kind words. And, you know, I've been thinking about, you know, I've had some amazing role models along the way, but really my role models these days are our young and powerful emerging leaders. You know, I look to them because I'm learning every day from them. I'm learning how we're navigating these very tricky times. You know, I'm sure she'll be very embarrassed for me to say this, but, you know, recently I commented to Maria Town that I wanted to be her when I grow up. And I meant it. You know, I look to the leadership of the folks who have been taking on the Crip Camp and, you know, the Crip Camp Impact Campaign. And, you know, I just love I love that they are taking forward something that began in the '70s and they're now taking those emerging leadership lessons and moving them forward into the future. Actions that will propel us forward. So, you know, Stacey Milburn, the loss of Stacey is just devastating. The incredible leadership of Angel Miles, Andrea, the work that they're doing, with Crip Camp is just fabulous. They've not made it at all trite. They've actually made it extremely meaningful. And so, you know, there are so many of the emerging leaders. John Parodi and Shailyn Lozales, who I have had the pleasure of working with for several years now, their leadership role both in the U.S. and globally around disability inclusion in disasters. You know, I— these are the kinds of role models models that I am learning some really important new lessons. I wish that, you know, when I was at the beginning of my journey, you know, I wish that there had been a larger circle. I wish we had had better communication. I wish that there were more people who had the opportunity to—

but you know what, Marcy? You know, you know, you know what though? Remember what you said? We do now, thank goodness. And I have to end the show with a quote that fits our occasion: No, no, we are not satisfied I will not be satisfied until justice rolls down like waters and righteousness like a mighty stream, said Martin Luther King Jr. This is Joyce Bender, America's Voice, where disability matters, at voiceamerica.com. Don't miss next week with Sherrell Barber, the daughter of Reverend William Barber. Talk to you then.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific time and 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.