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1 in 5 people in the U.S. has a disability, a large community that can lead progress and shatter the culture of ableism. In this episode of ALL INCLUSIVE, Jay is joined by Andy Imparato, executive director of the Association of University Centers on Disabilities, to untangle the conflicts preventing the disability community from moving forward.
Andrew Imparato has served as executive director of the Association of University Centers on Disabilities (AUCD) since 2013. As a disability rights lawyer and policy professional with more than 25 years of experience in government and advocacy roles, Imparato has worked with bipartisan policymakers to advance disability policy at the national level in the areas of civil rights, workforce development, and disability benefits. Prior to coming to AUCD, he was senior counsel and disability policy director for Chairman Tom Harkin on the US Senate Committee on Health, Education, Labor and Pensions. He spent 11 years as President and CEO of the American Association of People with Disabilities. Imparato’s perspective is informed by his personal experience with bipolar disorder and he self identifies as a person with a disability.
Jay Ruderman: The disability rights movement is a civil rights movement, but is often not seen that way. Today we’re going to hear from an expert as to where that community stands, and how it could be more impactful.
Announcer: All Inclusive, a podcast on inclusion, innovation, and social justice, with Jay Ruderman.
Jay Ruderman: Welcome to All Inclusive. I’m your host Jay Ruderman. With me today is Andy Imparato executive director of The Association of the University Centers on Disabilities. As a disability rights lawyer, and policy professional with more than two decades of experience in government and advocacy roles, he has worked with bipartisan policy makers to advance disability policy at the national level in the areas of civil rights, workforce development, and disability benefits. Andy, welcome to the podcast.
Andy Imparato: Thanks Jay, great to be here.
Jay Ruderman: I had an incident where I put out a tweet that was pretty innocuous, but I missed a word, and a bunch of people jumped on me and said, “You’re an ableist,” which sort of caught me by surprise. I come from a background in advocacy in the pro-Israel movement, where our mantra was, we have friends and potential friends. Sometimes in the disability community, and this may be in all advocacy communities, so I don’t want to just single out the disability community, but there’s a tendency to get deep into the weeds, and fight amongst yourselves. How do you deal with that in the disability community where people are throwing around very hurtful terms, and sort of attacking their own fellow advocates?
Andy Imparato: Well I guess for me it starts with what is the kind of leadership that we’re looking for as a civil rights movement? I believe Cornell West said, “In order to lead people you have to love people. In order to save people, you have to serve people.” To me, the best case scenario in a leader is somebody who’s going to lead with love, with authenticity, is going to see the good in people, and lift up the good in people, and is really going to be very careful about attacking people individually. It’s one thing to attack somebody’s ideas, it’s another thing to attack them as a person. If you attack people as a person, I would argue it’s generally not very effective advocacy.
Jay Ruderman: Let’s talk about this term ableism. Seems like a strong term to me, it’s like calling someone a racist. I’ve heard it bandied about in the community. How would you describe the term? What are your feelings about it?
Andy Imparato: Ableism is a word that connects us with other movements that are trying to push back against oppression. Yeah, I mean, it doesn’t feel good to be called sexist, or racist, or homophobic, or whatever, but sometimes being able to name something, even if it’s harsh, it can be empowering for the person that’s in the group that has been oppressed.
Jay Ruderman: Do you think that general society understands the term ableism? I mean racism, or sexism is generally well-understood. When you call someone an ableist, do people even know what you’re talking about?
Andy Imparato: I think it’s insider language. I don’t think the average American knows what ableism is. There’s probably some generational differences there. I think people in our children’s generation may have been exposed to the term and the concept of disability as a civil rights issue more than people in our parents’ generation. But no, I certainly don’t think it’s as well-known of a term as sexism, or racism.
Jay Ruderman: During your career, can you describe steps that you’ve taken to fight against ableism?
Andy Imparato: Sure, I mean, I’m a disability civil rights lawyer, so I feel like part of my job is to help people understand what discrimination looks like in the area of disability. One of the stories that I tell a lot when I give a keynote talk, is an experience I had early in my career where I applied for a job with an organization that did advocacy for people with mental disabilities, and I self-identified as a mental health consumer in my cover letter. The lawyer that was screening the resumes talked to one of my references and said, “You know, Andy says he’s a mental health consumer, what can you tell me about that?” That was an illegal question under the ADA, and he was training other people around the country in how to comply with the ADA, and he violated it.
Andy Imparato: I was in DC interviewing for other jobs. I asked them if they wanted to talk to me. They had me come in, and we went through the whole interview. They never asked about me being a mental health consumer. So at the end, I said, “I just want to take this opportunity to answer any questions. I know you talked to one of my references. Is there any questions you have for me?” The lawyer that had violated the ADA didn’t say anything. The other lawyer looked nervous, and she said, “Well is there anything you want to tell us?” I started telling them about my experience with bipolar disorder. I tried to link it to the mission of the organization. The other lawyer said, “Oh come on Andy. We all see a therapist. Why is that relevant?”
Andy Imparato: I saw that as a challenge that my disability wasn’t real, or significant. So I talked about aspects of it that I wouldn’t normally talk about in a job interview to try to get over that hurdle. Then it was like a light bulb went off, and she saw I really was bipolar, and she talked about a staff person they had had who was bipolar who was inappropriate at staff meetings. So in her mind, I either wasn’t really disabled, or I was so disabled that I was no longer qualified or desirable for the job.
Andy Imparato: So that’s one form of ableism where we make people get over one hurdle, and then immediately go into the category of unqualified. You forget the fact that I went to Stanford Law School. You forget that I did a prestigious clerkship and fellowship, but now I’m just the bipolar person who’s going to be inappropriate at staff meetings. That’s an example of the kind of fears, myths, and stereotypes connected to a diagnosis that you could call that ableism.
Jay Ruderman: There’ve been more, and more artists who’ve come out about mental health issues, whether they be athletes, or entertainers, singers, actors, there seems to have been a parade of well-known celebrities in our society coming out and talking about their own mental health, and the challenges. How do you see this as a mental health advocate? Is it a positive thing? Is it reducing stigma in our society?
Andy Imparato: I think it is. When you have prominent in people that have achieved success in their careers, talking about their mental health disabilities, it helps people understand that it’s possible to have a lot of success professionally, and live with a mental health disability. It makes it easier for the next person to be open, including people that aren’t celebrities.
Jay Ruderman: Let’s talk a little bit about the disability community, because the figures that I’ve seen is that universally 20% of our population has some form of a disability. Yet, there’s a lot of fractionalization within the disability community, people tend to identify by their disability. Talk a little bit about your experience working, especially in Washington, with a very fractured disability community. I guess, my follow-up question is how can we reach our potential? How can the disability community be more powerful?
Andy Imparato: When I worked for Senator Harkin the first time in the early ’90s, when he was the chair of the Disability Policies Sub-Committee in the senate, and again, Massachusetts Senator Ted Kennedy was the chair of the full committee, his staff director Bobby Silverstein said to me, “We have three goals in this sub-committee, keep the disability community together, keep the disability community together, and keep the disability together.” From his perspective, and chairman Harkin’s perspective, the only way we were going to be effective in doing disability policy is if we found ways to keep the disability community from fighting with each other.
Andy Imparato: We tried to pick issues that could bring people together. We tried to resolve conflict, and bring people around a table, and find ways forward that everybody could live with. We did not want open conflict to be playing out on the hill, because we knew it would get in the way of legislative accomplishments. In some ways, I feel like the Americans with Disabilities Act was a highpoint in terms of the community coming together, and staying together around a pretty complicated bill that had a lot of compromises built into it. I think that was a testament to Senator Harkin, Bobby Silverstein, Tony Coelho, the people that worked on that bill found a way, Pat Wright, you know, from the outside, was working for the Disability Rights Education Defense Fund, they found a way to resolve conflicts within the community for the most part. The community was pretty supportive of the legislation, certainly when it passed.
Andy Imparato: Again, for me this comes back to leadership. I think we need leadership in the disability movement that knows how to bring people together, but I feel like every civil rights group has fights within the group. I don’t think it’s unique to disability. We are very diverse. Sometimes the issues for one part of the community create issues for another part of the community. I think a good example of that is curb cuts. When we put in curb cuts for people in wheelchairs, there were blind people that were put at risk because they were using the curb with their cane to know when they were about to walk into the street. We had to figure out a workaround. Now we have curb cuts that have bumps in the curb cuts so the blind person will know.
Andy Imparato: I think generally if people trust each other, and love, and respect each other, you can work out differences. It does require taking the time to build relationships.
Jay Ruderman: Let me ask you a question about another division I see in the community. When I’ve met with members of congress in general talked about the disability community, and they will relate to me that some activists will come and ask about benefits, and some activists will come and ask about rights. They’re both important, I mean, people need benefits in order to survive, but they need rights in order to prosper in society. How do you see that division? How could we bridge the gaps there?
Andy Imparato: I think the ADA has a vision that people with disabilities should be able to participate fully in all aspects of life. I think the healthiest way to think about benefits is what are the supports that people need to be able to participate fully in all aspects of life? The benefit system that we have now, which dates back … the definition of Disability and Social Security Act dates back to 1956. It has this bizarre notion that the only people who should get supports from the government are people who can’t work. Most people with disabilities want to work, but we have a benefit system that was designed to support people who can’t work.
Andy Imparato: The whole concept of not being able to work because of your disability is 1950s thinking. Our field has evolved. The real question is what are we willing to do to support somebody to work in a competitive environment? Are we willing to provide a job coach if that’s what the person needs? Are we willing to provide assistive technology? Are we willing to provide carving out a job around the abilities and skills, and interests of the employee? I think I’ve spent a lot of time and energy trying to change the definition of disability in Social Security Act, because I do think that creates a serious problem in terms of people not being able to work to their full potential.
Jay Ruderman: Do we still have organizations within the disability community that are supporting a sub-minimum wage for people with disabilities who are working, and others who are fighting against a sub-minimum wage?
Andy Imparato: Yeah, I mean, the way that I would frame that is there are, depending on whose numbers you believe, about 400,000 people working in environments that are segregated where their employer has a certificate, where they can pay them less than minimum wage if their productivity justifies being paid less than minimum wage. The people that are advocating to move away from sub-minimum wage in my organization, AUCD is one of them, we feel that sub-minimum wage is inherently wrong, and that the whole concept of a minimum wage is that everybody who works should be paid a federally guaranteed minimum wage, which is what we’ve established is the least amount that you could pay somebody and not exploit them.
Andy Imparato: The folks that are advocating that we’re not ready to move away from sub-minimum wage, in my experience, they don’t necessarily love sub-minimum wage, they’re worried that if you take away that option, that those people that are working in those environments, a good number of them are not going to move into a competitive job, they’re going to move into adult daycare, or day-habilitation, or whatever the terminology you want to use. But they’re basically not going to have any work.
Jay Ruderman: Are they advocating for more gradual approach?
Andy Imparato: Yeah. I think people that I have a lot of respect for, like Senator Casey, are advocating for a gradual approach. They want to have a process for moving people out of segregated settings where they’re paid less than minimum wage into competitive jobs, and the right supports around them so that they can be successful.
Jay Ruderman: There’s a lot of talk about intersectionality in our society. How does the disability rights movement fit into intersectionality? Are we an effective part of the conversation?
Andy Imparato: Well, as I understand that term, it was originally developed by an African American woman who was talking about being a woman, and a racial minority, and some of the unique challenges that come from those two marginalized, or discriminated against groups. As a white male with a disability, I don’t know that I’m an expert on intersectionality, but the way that I think of it, in terms of our modern disability movement is there are more activists of color with disabilities who have a stronger voice, in part because of social media. People like Alice Wong, or Valisa Thompson, or other folks that have used these platforms to really shine a spotlight on issues that weren’t getting the level of attention without social media.
Andy Imparato: Like one area where I see it playing out is in the autism community. There are a lot of autistic activists who are also transgender, or members of the LGBT community. I’m seeing a stronger alliance between our movement and the LGBT movement in part because there are so many autistic people who are engaged actively in both movements. That to me feels healthy. I think there’s still room for improvement in terms of civil rights groups affirmatively recruiting people with disabilities who are part of their group to work for their organizations, and reflect that perspective. I feel like there’s an opportunity in the broader civil rights community to embrace disability, and there’s an opportunity for the disability community to be more intentional about embracing people from diverse backgrounds.
Jay Ruderman: In social justice, often disability is left out, is the onus on the overall social justice movement? Or is the onus on the disability community to be more included in that movement?
Andy Imparato: I mean, my feeling is that we as disability activists need to be present and heard from in every social justice movement. We exist in every social justice movement, we need to assert our place and draw connections between whatever the issue is, and the organizations that we work for that we’re part of, and disability issues. Immigration’s a good example, there are lots of immigrants with disabilities who are going to be affected by this public charge rule that the White House has supported. It’s a rule that’s basically designed to exclude people with disabilities from coming into the country if there’s a chance that you’re going to be on benefits, we don’t want you as a citizen. That’s a disability issue, and an immigration issue. I think there’s a real opportunity for the disability community to work with immigrants’ rights communities to make sure that we don’t have this kind of discrimination in our immigration policy.
Jay Ruderman: Andy, one last question about the political power of the disability community. We know that special interest groups and minority groups carry a lot of influence in our political system, and I’m not talking about democrats and republicans, but just overall influencing our country. If 20% of our country has some form of a disability, how do you see the community coming together and really elevating its political impact?
Andy Imparato: Well, I think some of it has to do with what do we mean when we say the disability community? If you mean people who are protected by the Americans with Disabilities Act, and their families, it’s a huge population. Most of the people protected by the ADA don’t self-identify as a person with a disability and don’t have a strong disability identity. I feel like one of the things we have to do is come up with language that brings people together around that identity. One of the things I did when I was at APD, is I started talking about people with disabilities and chronic health conditions, because most people with chronic health conditions were protected by the ADA, but they were more comfortable calling their thing a chronic health condition, then they were calling it a disability.
Andy Imparato: I mean, this is a communications issue, it’s a marketing issue. We have to come up with a way of talking about the population that we mean when we say disability community, so that they think that they’re part of the population, and they’re willing to connect with each other around the issues. The Affordable Care Act could be an opportunity. There are pre-existing conditions, people with pre-existing conditions are protected by the Americans with Disabilities Act, but they may be more comfortable calling themselves people with pre-existing conditions than they are people with disabilities. There may be an opportunity if you look at the midterms, health care was the big issue for a lot of democratic candidates who won. If we can organize this pre-existing condition population as a political force that may become an opportunity to get a lot more people engaged on disability than we’ve been able to so far.
Jay Ruderman: I think supporting disability rights is something that everyone can get behind, not just because of self-interest, but because it’s the right thing to do, and people with disabilities are a large segment of our population, but I’ve heard it been said many times, that the disability community is the one community that most of us, if we live long enough, will join. There’s also a self-interest in supporting disability rights because as we age, or at any moment, anyone of us can develop a disability.
Andy Imparato: Yeah, that’s right. I mean, if you think about how we sold the health care bill when President Obama was working on it, he talked about covering the uninsured, and he talked about bending the cost-curve that we were spending too much money on health care, and this would help us rein in the cost. What I think would have been more effective is to say we need a health care system that’s there for you when you need it the most.
Andy Imparato: Elizabeth Warren, when she was a law professor at Harvard called me once when I was AAPD just to make sure that I knew that one half of personal bankruptcies were people that couldn’t afford their health care bills. We can say you’re all going to become a person with a disability at some point, but I think a lot of people are going to have a hard time understanding that. But we can say we need policies in place so that if you do find yourself in a situation where you have $100,000 health care bills, you’re not going to have to declare bankruptcy to get the health care that you need to survive.
Andy Imparato: That’s a disability issue, but it’s also a human issue. I think that’s what you’re getting at. We’re all human. We’re all going to find ourselves benefiting from accessibility whether we call ourselves people with disabilities or not. So let’s create a human-friendly policy so that everybody can participate no matter what happens to them.
Jay Ruderman: Well thank you Andy Imparato. You’re a wise man. I appreciate you coming on the podcast, and disseminating some of your advice and experience. Look forward to working with you in the future.
Andy Imparato: Thank you Jay. It’s my pleasure.
Announcer: All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple podcast, Google Play, Spotify and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org/allinclusive. Have an idea for a podcast? Be sure to tweet @JayRuderman