Thirty years ago, East and West Germany reunited after the fall of the Soviet Union. It was 1990, the same year The World Wide Web debuted, plus singer Mariah Carey’s blockbuster hit, "Vision of Love," kicked off her career. And President George H.W. Bush signed into law the Americans with Disabilities Act (ADA) banning discrimination against millions of Americans in education, transportation, and public accommodations. Three decades later, the 1 in 4 adult Americans with disabilities have benefitted from the ADA’s protections. But the benefits are being threatened by the wide-ranging impact of COVID-19, and by the ever-widening inequities in health care and employment. In this 30th anniversary year of the passage of the ADA, the disability rights movement looks back to the bill’s legacy and ahead to new challenges.
Guests:
Kristen McCosh, commissioner of the Disabilities Commission for the City of Boston.
Michael Stein, executive director of the Harvard Law School Project on Disability and visiting professor at Harvard Law School.
Jeffrey Yasuo Mansfield, design director at MASS Design Group and a Disability Futures Fellow.
Plus, American Sign Language (ASL) interpreter, Aaron Wegehaupt, joined to facilitate communication between everyone.
Transcript:
GBH’s Under the Radar with Callie Crossley: ‘Successes And Shortcomings: 30 Years Of The Americans With Disabilities Act,’ December 11, 2020
Clip of 1990s news footage: “For more than 40 million Americans who are physically or mentally disabled, a new era is dawning. A bill nearing passage in Congress would mandate equal access for the disabled. This legislation is a bill of rights for the disabled, and America will be a better and fairer nation because of it. The passage of this monumental legislation will make it clear that our government will no longer allow the largest minority group in the United States to be denied equal opportunity. To do any less is immoral.”
Crossley: Kristen McCosh, you hear that back from 1990 and I am reminded that you were living your life pre-ADA. So this act has had a direct impact on your life. Talk about that personally and professionally.
Kristen McCosh: I had my injury in 1983 and the ADA wasn't passed until 1990. So I went from being a young woman of privilege, living in a home with a family, to instantly becoming a citizen of the United States who had no civil rights. My family found that the systems that we depended on were no longer available. And one of the biggest examples I like to use of a system that was completely inaccessible was school. I was 15 years old and I was in high school. And when you're in high school, everything is a big deal. You don't want to stand out. You want to be accepted. So not only was I dealing with the issues around my disability personally, but trying to go back to high school was nearly impossible. At the time there was only one Boston public high school that was accessible, and it wasn't the one that I attended. So my parents had to advocate with the school system. I did a home tutoring for a year and then we ended up changing my classes around so I could go to school just on the first floor. So it was it was a stark example of how I went from such privilege to having no access and no place in the world.
Crossley: Now, as the commissioner of the Disabilities Commission for the city of Boston, you can therefore really see professionally how the ADA has made an impact.
McCosh: I have and interestingly enough, the ADA was passed in 1990 when I was in college, and then when I graduated from college, my first job was actually with the Cambridge Disability Commission. That was in 1993 when the regulations for the ADA were just being implemented. So I got to participate in their self-evaluation and transition plan, which was required by all municipalities. And then when I came to be a disability commissioner in Boston in 2010, I was able to bring that professional experience, along with all my lived experience and advocacy into the role. So it's a lot of hard work and it's challenging in a city like Boston, because I always say about Boston, the city is an old city. It's a winter city. It's a densely packed city and it's a vertical city. So all these things make access really challenging.
Crossley: So, Michael Stein, pick up on that, because when you went to law school, you're saying the law didn't really exist. And so you were facing a lot of barriers.
Michael Stein: 1985 was when I started interviewing for law school. I met the then dean of students. And when we discussed what my life would be like or what support I may or may not have all before the ADA, I was told that there was only one dorm that had a ramp. That within the dorm itself there would be no adaptations to the bathroom, there would be no access to laundry. I wouldn't be able to use a kitchen. That during the Boston winters where my classmates would go underground into the tunnels, in order to access their classrooms, I would have no access to that. I had to go above ground, through the snow, backwards, you know, uphill, barefoot all that. And I also became the first person with a disability to have become a member of the Harvard Law Review, breaking that glass ceiling after 100 years.
Fast forward 20 years, 2005, which is when I return to Harvard and began teaching disability law at Harvard. And I'm telling this story to my students, a different generation. They had grown up with the ADA. They thought those circumstances were absolutely out of this world. And that's wonderful, because their expectations had shifted 180 degrees. From someone with a disability, not being part of the community, being accommodated or being kind of a burden, to having a professor with a disability teaching them. And they thought that was normal.
Crossley: So, Jeffrey Yasua Mansfield, you are a child of the ADA, meaning that you presumably got most of the benefits of it. And yet when you went to school, you saw where some of the deficits still remains.
Jeffrey Mansfield: I started school in 1989, so one year prior to the ADA passing. And that was a very unique year because the school I went to in Framingham, Massachusetts was the Learning Center for Deaf Children, and it is the first school in the country to be established for a bicultural experience. Everybody used American Sign language, and that's how I grew up. I grew up in that environment where I felt like I could fully participate in my education. The impact of the ADA and that environment felt, to me it felt very normal.
I did start to realize more and more as I grew up and got into college, OK, I have to really start to think about booking an interpreter and arranging my own accommodations. I really had to almost justify each request for an interpreter or each request for an accommodation. And the emotional work is exhausting. However, at the same time, the mere fact that I had the ability to make those requests for accommodations or to demand accommodations was very empowering and really changed the framework for how we consider our participation in society as citizens. As a child of the ADA, I see potential for a lot more change in that next generation. How do we continue to push the needle really to radical accessibility? How do we create an infrastructure that shifts society where accessibility is already the foundational basis or condition, not an add on or an afterthought? I am both very grateful and frustrated by the ADA. However, it's a very, very powerful legislation. And to be in a position at this moment in time where we are now able to ask and demand for more is truly, truly exciting.
Crossley: Kristen, what is chief right now getting people to understand that more is needed for support of people with disabilities?
McCosh: Yes, so the thing that we first focused on as a city was ensuring that people were safe and fed because we know there are people who live in poverty, there are people with different challenges who are city residents. So we had to assure emergency safety first. After you get to that point and things start to stabilize, if you can call it that, is just look at what systems really need improvement. And one thing that stands out in every facet is digital connectivity. So a lot of people with disabilities don't have access to the Internet. They may not have a smartphone, they may not have a computer. And people who used to go to a library or a senior center or a community center to use the digital tools, are no longer able to do that. And now so many things are just delivered online.
Crossley: Because of covid-19 you're saying?
McCosh: Because of covid-19. Right. You can't go to your usual places where you would get digital support. So we really see as a city we need to work on that.
Crossley: Michael Stein, what do you see exposed as a result of covid-19?
Stein: What we saw because of the pandemic and what we're continuing to see is people with various disabilities not having their regular access to health care and being put down the priority list. Many of them at the beginning of the pandemic excluded people with disabilities either overtly, such as the state of Alabama, saying that people with intellectual disabilities should be ineligible for ventilator services or implicitly by putting in conditions like what are your long term survival prospects, which is not the issue for emergency care. Emergency care is meant to fix you up and get you out of the hospital. Whether you live two years or 50 years should be irrelevant. And due to some very good disability advocacy, these CSCs, these crisis standards of care standards, have been amended.
But having said that, you know, people with disabilities are very worried about their health care generally. And that was the circumstance before the pandemic.
They're more worried about it now due to the pandemic. Due to the efforts by the administration to strip the Affordable Care Act, Obamacare, and in particular with people with disabilities.
Crossley: Jeffrey, how would you answer that question?
Mansfield: First of all, I would like to reemphasize what Michael has stated. A lot of our community, especially in the deaf community for many, many, many years of distrust between the community members and medical institutions, has created major gaps in the health care literacy of our community. And so exactly how we partner or bridge that gap is in moments like this with covid-19 because of years of trauma and distrust. Now, all of the sudden, our community is very apprehensive, very fearful of the fact that if we get to the point where we have to ration health care, how does that impact our community? How does that impact us as individuals who are disabled? And now with covid-19 and the use of masks it's such a challenge for deaf people. We are having a very hard time lipreading or attempting to lip read. Our language, American Sign Language is very dependent on facial expressions and now half our faces are covered. As a result, it creates unnecessary anxiety. Not only that, however, today we're more inclined to self isolate ourselves out of fear and in order to minimize or mitigate the spread. But we're already isolated as a community, as individuals, even pre-covid-19. Today, this isolation is becoming enhanced and increased to the point where we are seeing major mental health impact. But we are also a very resilient community.
Crossley: You're an architect. You're working to make sure that the spaces that certainly you oversee and that you teach other people to build have the accessibility that is required. But I'm wondering how you have seen covid-19 impact your work and your students work with covid-19?
Mansfield: In regards to space, we're now more aware of how we move, how we use space to socialize. We are now looking at prioritizing public spaces and access to public spaces that are going to be safer and more equitable. There are opportunities there as we retrofit our spaces and as we consider infectious control in new buildings and new spaces. There are opportunities there to also integrate that thinking with accessibility - how we make spaces that increase the level of trust and, you know, as mentioned, bridging that gap between the different communities that the building intends to serve.
Crossley: I'm Callie Crossley and you're listening to Under the Radar with Callie Crossley. My guests are Kristen McCosh, commissioner of the Disabilities Commission for the city of Boston. Michael Stein, executive director of the Harvard Law School Project on Disability. And Jeffrey Yasuo Mansfield, design director at Mass Design Group. We are also joined by American Sign Language ASL interpreter Aaron Wegehaup, who is facilitating communication between everyone. We're discussing the 30th anniversary of the Americans with Disabilities Act.
So I want to turn to something else. The ADA was born out of advocacy, but it seems to me that people with disabilities have really made themselves visible through a kind of advocacy that was not in place prior to the ADA. That in fact, the legacy of the ADA, is that people with disabilities are empowered to really get out there and make everybody else hear what the issues are and see them in very real ways. Is that right, Michael Stein?
Stein: I would say that we were blessed by the ADA in 1990 at a time that social consciousness was not raised regarding the role of persons with disabilities in this country. So what we saw is with the disability rights community circa 1990, no marches on Washington. We didn't have the mall filled with people with disabilities. There has not been, there is not, a national figurehead regarding persons with disabilities. And so the law in many ways predated the social consciousness raising. But what it did, on the other hand, was it gave a goal for the disability rights community to aspire to, to work on and to follow. And so in the years following the ADA, what we're seeing are groups claiming their rights. If we were to reflect for a moment, we would see that the move towards same sex marriage and same sex rights has been much, much faster, being accepted and being indoctrinated in law and indoctrinated in our culture than has been disability. So we're still a work in progress as far as changing attitudes. And I think that lagging behind has been reflected in things like our employment rates and the idea that the ADA is still, for many people, a matter of inclusion, meaning tolerance rather than a matter of belonging.
Crossley: Jeffrey, would you agree with that?
Mansfield: Absolutely. I think what the ADA was very successful in achieving was establishing a minimum expectation. Understanding that we also acknowledge that it is the bare minimum and that's never going to be enough. it doesn't allow you to thrive fully. I think we as a disability community are being tolerated versus celebrated. I think today we're at a point where we can acknowledge that these are our rights as citizens, as a human. At the same time, we're moving more towards the disability injustice, where we have rights that are not always transitioning to equal justice. We're now demanding equal justice. And I think that's the next step in this movement.
Crossley: Kristen, same question to you about the ADA's impact on advocacy, but I first want to reference the recent agreement announced by the Justice Department with the Massachusetts Department of Children and Families. It corrects a policy by DCF which caused parents with disabilities to lose their children assuming they couldn't care for them.
McCosh: Yes, exactly. And that was a landmark case. And so that just goes to show the importance of the law, of the actual letter of the law of the ADA. But I think that Michael and Jeffrey both made a good point about inclusion. The way I tend to look at it in my role at the city is there's a difference between access and inclusion. And we strive for both. Access is the bare minimum and we don't ever strive for the bare minimum in anything we do. We're always striving for more. So what I work on in my office is what we like to call ideal accessibility. So one example I like to use is if you're building a new building, it would be accessible if you create a set of stairs and a ramp, but it would be much more inclusive if you built a flush entryway that everybody could go in together. There was a meeting one time last year at the Boston Public Library. And the library is an old existing building. So they've done a lot of great work on access upgrades. But some of the things remain in place that aren't ideal because it's an old building. So one example is at this meeting, they advertise it to the disability community and they have it in a meeting room that was totally accessible. But the access was of an incline lift. So it goes up the stairs. And to try to get 30 people into this meeting who all use wheelchairs, one at a time, on an incline lift, was just so distracting and really undignified. And although it met the letter of the law, it certainly wasn't inclusive. So in my role, I try to institute policies that strive for inclusion. And although you can't mandate exclusion, you can certainly enact policies and procedures that will identify what's not inclusive and strive to achieve that goal.
Crossley: So often what happens in a pop culture setting has almost as much impact as some legislation. 30 years ago, people with disabilities were not visible in pop culture, just living their lives. But today there is a very popular reality show called Rolling with Cole and Charisma. Here is Cole Snyder, who is quadriplegic, and Charisma Jamison, who's able bodied, answering questions about being an inter-able couple. They were recently married in November.
Clip of Cole Jamison: “On our flight here, the flight attendant, as I was being transferred into our seat on the plane and Charisma was helping break down my chair and take the batteries off, the flight attendant said, ‘Oh, is she or your nurse or your aid?’ I said, ‘Oh, no, that's my girlfriend.’ And she kind of looked at me like, ‘Oh!’ So there's an assumption there that she's just helping me.”
Crossley: Here's something else I want you to listen to before you answer.
The new audio listening guide for the Guggenheim Museum is another example of changes we take for granted now post ADA. The guide called Mind's Eye, a sensory guide to the Guggenheim, New York, was designed for the blind and low vision community. But as Marilee Talkington, one of the guides actor narrators who is blind, explains in this clip, it's been embraced by those who are not disabled.
Clip of Marilee Talkington: “I love these moments when they were talking about the low walls and how they weren't smooth. It's not perfectly smooth, but feels very comfortable in our hands. That's the voice of actress Maggie Gyllenhaal narrating there. Running our hands over it. We find it's pitted and uneven, like an orange peel or a cantaloupe due to the many layers of paint used to touch up the walls to keep them bright. I feel good that I'm able to access what most people visually access. The sensory guide, I feel is used for this, for my community, but it's actually for everybody.”
Crossley: It seems to me that so many of the changes that happened because of the ADA, and they were mandated changes, have really become a part of all of our lives. And at the same time, it seems to me to have brought a more cultural acceptance, if you will, to the disability community. What do you think, Michael?
Stein: The history of disability in this country and elsewhere is one of invisibility. The social media you've played for us is enormously important. Being able to see people with disabilities living otherwise, quote unquote, normal lives is really the mandate of the ADA. We tend to forget that there are many devices designed specifically for people with disabilities that are now simply a part of mainstream culture. Email, the Internet, jacuzzies, and we can go down the list of things, which people take for granted and people enjoy, which adds to their lives and which are universal. Things like accessible restrooms, those single restrooms. Those restrooms are also being used by families, when you have a parent with a child with a different gender being able to take them to the bathroom, I certainly do it for my kids. But they're also now being used by the trans community and by others. So if we think about disability as a mandate for inclusion, as a mandate for redesigning society, as a way to include everyone, then everybody wins.
Crossley: Jeffrey, do you agree?
Mansfield: Absolutely. Absolutely. I think the one thing the ADA has done really well is bring a spotlight to an experience of the people who are disabled and to actually have a value in the legal setting. If you look at it historically in the history of our society and institutions, everybody is based on margins. We're away from the public consciousness.
However, with more and more inclusion and with the ADA, that binary divide has become more and more integrated and the disability experience is now being more and more normalized. It's becoming a part of daily life versus something that is separated and pushed far, far out on the on the horizon of locations. It's now being integrated in our day to day lives. Not only that, but the disability perspective is now more and more being put front and center. The ADA has truly given the necessary push for things like this to happen, and I think it's overall very powerful in itself.
Crossley: And Kristen, you get the last word.
McCosh: So when you look at the history of people with disabilities, you know, culturally, it had so many negative connotations. It was a source of shame for many families. They kept disabled children hidden away. It had a lot of religious connotations, like it was seen as a curse. I mean, it was just no real obviously no pride and no real acceptance. So that's one of the biggest cultural shifts I see today, both personally and professionally. Personally, I was injured in a diving accident and a spinal cord injury back then, 35 years ago was not something that you saw every day because people couldn't get out, because movies weren't accessible, the MBTA wasn't accessible. So you really didn't have an opportunity to go out and be seen in public. And so that gives you a personal sense of shame, like, do I not belong? So when you look at today now, this generation of people with disabilities, it's just a totally different attitude for them personally and also for society. I myself am personally in an interabled marriage. And when I first started dating, my husband this was twenty five years ago, and we always joke that for the first five years dated, he carried me around on his back because nothing was accessible. But now when we walk together, we'll see a restaurant and if it has like one step or a threshold, we get angry because I have too much agency and too much empowerment to feel bad about myself. And rather, I say, you know, this isn't acceptable in 2020.
