As the Americans With Disabilities Act marks its 31st anniversary this week, Reset takes a closer look at what progress has been made in the advancement of civil rights for people with disabilities — and what work still needs to be done.
GUESTS: Karen Tamley, president and CEO at Access Living
Barry Taylor, vice president for civil rights and systemic litigation at Equip For Equality
The following is a lightly-edited transcript of the interview:
Host Susie An: This is Reset. I’m Susie An, in for Sasha-Ann Simons. 31 years ago, Americans with disabilities saw a major win, gaining protections and resources with the signing of the Americans with Disabilities Act.
Clip: President George H.W. Bush: Three weeks ago, we celebrated our nation’s Independence Day. And today we’re here to rejoice in and celebrate another Independence Day, one that is long overdue. And with today’s signing of the landmark Americans for Disabilities Act, every man, woman and child with a disability can now pass through once closed doors into a bright new era of equality, independence and freedom.
An: That was President George H.W. Bush back in 1990. And this week, on the anniversary of the signing of that sweeping civil rights law, President Joe Biden reaffirmed his commitment to the ADA and said there was still more to be done.
Clip: President Joe Biden: Thirty one years ago, after its passage, many Americans have never lived in a world without the ADA. Generations have grown up not knowing the time before it existed. But many of us can still recall an America where a person with a disability was denied service in restaurants and grocery stores and could be. Or where an employer could refuse to hire you because of a disability. We’ve made important progress, but we still have work to do. We have to keep going to ensure that every single American has a chance to contribute their talents and thrive and succeed.
An: Has the ADA been fully realized? What progress still needs to be made? Joining me now is Barry Taylor, vice president for civil rights and systemic litigation at Equip for Equality, an Illinois advocacy organization advancing the rights of people with disabilities. Barry, thanks for being here.
Barry Taylor: Hi, happy to be here with you.
An: Also with us is Karen Tamley. She’s the president and CEO for Access Living, a Chicago-based disability and rights service organization. She was also there when the ADA was first signed in 1990. Karen, welcome to Reset.
Karen Tamley: Thanks for having me.
An: Well, Karen, let’s start with you. More than three decades since the ADA. What’s on your mind this week as you reflect on the progress made so far?
Tamley: I think the ADA anniversary is always a time for reflection to see how much progress has been made since it was signed into law. And as you mentioned, I had the opportunity just out of college — when I was doing an internship for a disability rights lawyer in Washington — to attend the signing ceremony. And little did I know at the time how significantly just the stroke of the president’s plan would dramatically change my life and that of the lives of so many millions of others with disabilities.
I’m a wheelchair user. I was born with my disability and grew up in a time before the ADA when there was very few expectations for disabled people, very few opportunities or accessibility. You know, [when] I grew up I couldn’t ride the public bus with my friends because they didn’t have lives. I couldn’t cross the street, my wheelchair. Since there were no curb ramps, I routinely had to be carried into stores and restaurants because they weren’t required to be accessible. I wasn’t even allowed to go to my neighborhood school and in my early years because of my disability. But the ADA really changed all that. And my life now is so different than it was before 31 years ago when the law was signed.
An: Barry, I want to turn to you. Can you give a brief summary of what the ADA covers?
Taylor: Sure, the ADA is very broad in its coverage in that it really covers all aspects of society. It covers employment, both private and public employers. It also covers private businesses that are open to the public. It also covers state and local government services, including public transportation, and also includes telecommunications. So, you know, the main thing that the ADA is trying to do is to ensure that people, disabilities are integrated into our society like anybody else. And by having this broad coverage, it really covers all aspects of life.
An: And are there current legal challenges to the ADA, Barry?
Taylor: You know, over the years, there have been some challenges to the Americans with Disabilities Act. One of the most common ones we’ve seen is requiring a notice period before people could bring suit against a business. But fortunately, Congress has recognized that it’s really not something that’s necessary. And for other protected classes, you don’t have to give notice of racial discrimination or national origin discrimination. Why should there be such notice of the ADA requirements? And, you know, we’re celebrating the 31st anniversary — it’s been around a long time. Businesses should be aware and should be in compliance with the ADA. So that’s one of the main things that we’ve seen. But as I said, that hasn’t been successful. And Senator Duckworth was incredibly, I thought, thoughtful when she opposed the last attempt to pass such legislation. Mm hmm.
An: Well, Karen, you mentioned your life before the ADA and a little bit of the change after. Talk a little bit more about how things changed after the ADA. What was possible that you couldn’t do before it?
Tamley: Yeah, I mean, now I can ride any bus, public bus in the country because they’re all equipped with ramps. I can cross pretty much every street because there’s curb ramps, right? You know, I have a daughter who also has a disability. And the thought of sending her to a separate school just because of her disability is really unthinkable now. And, you know, and not just for me as a wheelchair user, but the changes have been significant for people with so many other types of disabilities. You know, the communication act that’s that’s now required — captioning and sign language interpretation for individuals who are deaf and hard of hearing, and access for folks that are deaf or blind and low vision. You know, just opening up a program to people with disabilities. There’s just been so many changes that, you know, the life that my daughter now is experiencing is so different than the one that I grew up in.
An: Well, President Biden this week talked about COVID long haulers and his commitment to making sure they could potentially have protections and resources through the ADA. Barry, what kinds of symptoms could fall under the umbrella of disability?
Taylor: So the definition of disability is very broad. You have to show that you have a physical or mental impairment that substantially limits a major life activity. And what President Biden and the Department of Justice and Department of Health and Human Services said was that people who have long COVID, it’s likely they would be covered under the ADA. There is no, per se, disability, but what the president and the guidance say is that long COVID is a physical impairment. And so then all people would have to do is show that because of that impairment, there’s substantial in some type of major life activity. So an example that was given as somebody who might have lung damage as a result of long COVID, they would just need to show that they have a substantial limit in the major life activity of breathing or lung functioning, and then they should be covered for a while. The ADA was interpreted very narrowly as far as the definition of disability, but Congress fixed that back in 2008 with the ADA Amendments Act and basically said that people shouldn’t spend a lot of time proving they’re covered by the ADA and we should instead focus on whether they’ve been treated differently because of their disability.
An: So given that, is there a kind of threshold a person would have to legally meet to qualify or or is it, as you say, just making sure that they, you know, haven’t been treated differently?
Taylor: Yeah, there’s still you still have to prove in court that you have a disability, but what Congress said is: We don’t want to spend a lot of time doing that. Before Congress acted, some cases were requiring people to provide experts and a lot of testimony. And Congress said, you know, we just want people to not be discriminated against. We don’t want to spend a lot of time proving you have a disability. You don’t spend a lot of time proving you’re covered by racial discrimination or religious discrimination. You just put forth some information and you move on. And that’s what Congress said. So you still have to show your substantial limitation in a major life activity. But again, the standard is fairly low these days. And really what Congress wants the courts to focus on is if people have been discriminated against or not.
An: This is Reset, I’m Susie An in for Sasha Ann Simons. And we’re talking about the Americans with Disabilities Act. The landmark civil rights legislation was signed into law 31 years ago this week. On Monday, President Joe Biden reaffirmed his commitment to the law, and announced that his administration is working to include people grappling with long haul COVID symptoms under the protection of the ADA. Our guests are Karen Tamley CEO and president of Access Living, and Barry Taylor, vice president for civil rights and systemic litigation at Equip for Equality.
Karen, do you think the spirit and goal of the ADA has been fully realized?
Tamley: Well, I think that the ADA did more than just dismantle barriers. It really got us to really transform how we think about disabled people and the disability community. I think the ADA was instrumental as one of the most sweeping disability civil rights laws in our lifetime to really shift our thinking away from disability, from a medical model or a charity-based model that we as a community need to be fixed in order to participate in society, to be more of a white space mindset that we are community deserving of civil rights and that it’s not our disabilities that prevent us from, you know, having equal access. It’s the world that’s putting the barriers before us. And so I would say that and, you know, yes, we’ve made so much progress, but we still have a long way to go. There’s so many things that still need to be addressed. Many long-standing disparities that were really amplified as a result of the pandemic. Issues like poverty, widespread poverty, unemployment, the disability, racial wealth gap is significant. More opportunities for our community to live independently in the homes and communities of our choice with the supports that we need. We still have very much of an overreliance on institutional services and care rather than home and community-based services. So that is a huge area that needs to be worked on. But we were really thrilled to see President Biden talk about investments in home and community based services.
The other area, which I think has really revealed itself during the pandemic, as well, is just the digital divide and how the digital world is now becoming our new front door of how we do business and where we get our information. And to me, it’s almost the same as putting a ramp or widened door into a building. It’s how we access public accommodations through digital platforms and through websites. And there’s still a lot of work to be done to not only make the digital world more accessible to people with disabilities, but to address the digital divide and the sheer number of folks in our community that don’t still have Internet connectivity or devices to get what they need
An: So still more work to be done. And you also mentioned President Biden’s recommitment, but do you think that his recommitment goes far enough?
Tamley: I think what he did was really, really important. First, just reaffirming the administration’s commitment to the ADA. You know, when he was Senator Biden, he was one of the co-sponsors of that ADA. And so, you know, he’s knows about the law. And he’s a strong longtime supporter of the ADA. But we were really pleased to just see, you know, the pronouncements and that were talked about this week on Monday about investing in the caregiving economy, about eliminating the sub-minimum wage. Unfortunately, a lot of people don’t know that it’s still legal to pay disabled people less than a minimum wage. And his administration is committed to eliminating that. He talked about investments and more special ed teachers and the caregiving economy, home and community services that I mentioned. And again, what Barry talked about with the guidance around longhaul COVID as a disability is really, really important to so many people that are now emerging in our community. So we were really pleased to see the announcements that President Biden came out with. But we also know that there’s a lot more work still to be done.
An: Well, I want to ask you both, when it comes to additional protections, what would you like to see on a policy level from lawmakers, particularly in Chicago and Illinois? Barry, I’ll start with you.
Taylor: Sure. There’s two that come to mind. One is, I think one thing that pandemic also revealed was the importance of people to be able to vote by mail because of concerns about being in-person for voting, but for folks who are blind or have other disabilities, you know, they haven’t been able to vote privately and independently because ballots have not been able to be sent, marked and returned privately and independently because they haven’t been able to done that digitally in Illinois. And so one of the things I think that a lot of us are going to be working on in this next year is to get legislation passed to ensure that all people, including people who are blind and have print disabilities, will be able to vote privately and independently.
And then the other is a national bill called the All Stations Accessibility Program, or A.S.A.P. And that’s trying to do is, I think, really supplement what the ADA has already provided. The ADA provides that certain stations like train stations and L stations in Chicago have to be accessible. And the CTA has done quite a bit. But there’s still a number of stations that haven’t been made accessible yet because they’re not technically required by the ADA. And also it requires a lot of funding. And so this new legislation that Senator Duckworth is taking the lead on would provide grants to transit organizations to make sure that the remaining stations are made accessible. Mm hmm.
An: I think immediately of the Belmont Blue Line stop, which they poured tons of money in and is not accessible. Well, Karen, same question to you. We’ve been talking about a recommitment on a federal level to boosting protections for folks with disabilities. But is there something you’d like to see done locally with lawmakers here?
Karen: Yeah, I mean, first, I would echo the two things that Barry mentioned: voting access and the concerns we have about the erosion of access for people with disabilities. But also as a wheelchair user, greater investments in our public transit infrastructure is absolutely key to the independence of our community. So those are two things I would echo.
But I think also, broadly, really thinking about some of the root causes of what’s led to the high unemployment rate of our community. I think, you know, I’d like to see greater investments in education for students with disabilities. You know, greater investments in infrastructure generally, as well as investments in affordable and accessible housing, as well as community-based services, particularly in our state of Illinois. So those are some of the things that I think are really essential for our community to have equal access and live out full lives in the community as well.
An: As we wrap up here, I want to ask you both, what do you want people to think about when it comes to allyship? Barry, I’ll start with you.
Taylor: Well, I guess I just would back up what Karen said is that disability should be seen as a civil right, just like other protected classes, and that people shouldn’t be pitying people with disabilities or thinking about, you know, how they can assist them medically. It’s about not only removing physical barriers, but also attitude barriers and removing those and just thinking of people’s disabilities as any other citizen and having them be part of our rich fabric of society here in Chicago and Illinois. It’s part of diversity. And not only do the people with disabilities benefit when they’re included, but all of us benefit by having a diverse society, including people with disabilities.
An: And Karen, I’ll give you the final word.
Tamley: Sure. I mean, I think we need to remember that disability is the one community that anyone can join at any time, right? Due to accident, injury, illness, aging or being born with your disability. And we are one of the most diverse segments of our population. We intersect with so many other communities, right? So I would say advancing disability rights are advancing rights for all of us, no matter what stage of life that we’re at, whether it’s now or into the future. And when we think about advancing accessibility and inclusion, we open up worlds for so many people and we make products, places and spaces that are going to be usable and inclusive for every single person. So there’s all the reasons that we should all be investing in and getting behind advancing disability rights and upholding the promise of the ADA.
An: That’s Karen Tamley, the president and CEO of the Chicago-based disability and rights service organization Access Living. We’ve also been speaking with disability rights attorney Barry Taylor with advocacy organization Equip for Equality. Thank you both for speaking with us.