When Judith (Judy) Heumann died on March 4, 2023 at the age of 75, there was a huge outpouring of grief from people around the world: from her family and friends, of course, but also from scads of folks she’d never met, especially from her people in the disability rights movement, which Heumann had played an absolutely key role in nurturing and moving forward for half a century.
If we are to believe the CDC, 61 million Americans (that’s 26 percent) have some kind of disability, whether it relates to mobility, cognition, vision, hearing, self-care, or independent living. And yet, until the last third of the 20th century the disabled were largely out of sight, out of mind, with scarce consideration paid to them in public policy or in public, period.
This was certainly the case when Heumann, the child of German Jewish immigrants to Brooklyn, was born in 1947, and when she contracted polio a year and a half later, leaving her unable to walk for the rest of her life. I won’t retell her entire life story here (I recommend reading her compelling autobiography Being Heumann for that), but suffice it to say she was never afraid to put herself on the line, to the point of putting herself in physical danger or getting arrested, to fight for the right to accessibility and for the right to live a life as full as anyone else’s.
I spoke with Heumann over the phone on August 19, 2021, after securing an assignment from the Zenger online news service in May, and scheduling the interview via her assistant (it was June by then, and given Judy’s typically crazy schedule it would be August before she was free). Even so, when I phoned Judy at the appointed hour she was apparently unaware that an interview had been scheduled, and I had to explain who I was.
This was not an especially high hurdle, as Judy Heumann loved to talk. After some introductory chatting about our shared German Jewish heritage (my paternal grandmother’s maiden name was actually Heumann, which was pronounced HOY-mann in Deutschland, although Judy and I weren’t related) and my autistic son, whose schooling she asked about. Judy, in her matter-of-fact way, also helpfully recommended a couple of people I should speak with for my article (which you can read here). And we were off. (The interview has been condensed and edited for clarity.)
The Odd Interview: The latest news is that Sian Heder (the director of CODA) is going to adapt your memoir and direct a movie based on it, perhaps starring Ali Stroker. That’s exciting. How important is it to you to be played by an actress who actually uses a wheelchair in real life?
Judy Heumann: Oh, it’s essential. We’re hoping that the (film) will have significant representation of disabled people, every aspect of it.
I have to tell you, I admire you very much for your lifelong activism and I know you’d be the first person to say that you didn’t do it alone and that there were so many others along on the journey with you, but you definitely seem to be a leader and someone other people in the movement look up to.
Thank you. Yeah, I mean I’ve been involved in the movement since I was a child, which I think is still true today. I was speaking with a young woman yesterday who is about 23, autistic and a non-speaking person, so they use an augmentative communication device. It’s very exciting to see the continuation of disabled people throughout the generations. I would say, not just continuing to fight for rights, but really to expand and increase the number of disabled people who want to be coming forth, being an active part of making changes here and around the world for the rights of disabled people.
Your framing of disability rights as a civil rights issue, part of human rights, was really revolutionary. Given the attention lately to Republican states attempting to limit voting rights, which puts many communities at a disadvantage, how does your community fit into this issue? How do you relate to that?
We relate very strongly to it, because a significant number of people who will be adversely affected if these laws are allowed to stand are disabled individuals, and then substantial numbers of people who will have disabilities and be poorer and Black and indigenous. So it has a profound effect on our community, and I think it’s an intentional attack (aimed at) keeping people away from the polls. There are many groups that are really fighting against it, and one of the other positives, if you can see anything positive in this, is that the disability community has, really since 1980 and forward, been working more closely with groups like the Leadership Conference on Civil and Human Rights, where there’s an understanding that disabled people come from all communities and that we face the same barriers as others, and really need to be working collaboratively to fight against state, local and federal legislation that can restrict people’s ability to vote; or, conversely, supporting legislation at the national level which would set national standards for voting.
Is there anything in the pipeline among the disability community to specifically fight this, any protests planned?
There’s a lot of work that’s going on. There’s an organization called the American Association of People with Disabilities (AAPD), you can go onto their website, they have a very active program. [She speaks about the AAPD’s REV UP program, which stands for Reach Every Voter.]
REV UP is a nonpartisan activity; it’s helping disabled individuals learn about their voting rights and the laws that exist within each state, and if they’re having problems, how to file a complaint, and getting people actively involved in getting out the vote, with a nonpartisan approach because it’s a nonprofit organization. But it is an issue of deep concern to the disability community.
I wanted to go back a little bit into the history of the movement. I think that for younger people who are just familiar with the way the Republican party is today, they’d be surprised to know that Section 504 was enacted in 1973 under Nixon; Joe Califano, who you had so many problems with, ending up with the 504 Sit-in, was Jimmy Carter’s Secretary of HEW, a Democrat; and George H.W. Bush signed the ADA [Americans with Disabilities Act] in 1990. I say this as a lifelong Democrat, but this sort of contradicts the narrative of Democrats as the party of compassion, doesn’t it?
Well, I think it’s fair to say that discrimination against disabled people cuts across all communities. I think there are no illusions that one political party or the other completely gets it. I think the reality is Democrats understand many of the major issues that we deal with, and are learning and are willing to learn, as opposed to — like you, I am a Democrat, I’ve become more and more disillusioned by what’s been going on in the Republican party…especially around states like Texas and Florida. Your governor [Abbott] hates the vaccine, gets COVID and then gets medical treatment that 99 percent of the state can’t get, and doesn’t see himself (as) other people see him, as a hypocrite.
Not to mention that Governor Abbott is in a wheelchair but couldn’t have less compassion for people who are disadvantaged.
Have disabilities, yeah.
I remember when there was such a thing as a liberal Republican, but that seems to be an extinct species.
Kind of an oxymoron!
What still needs to be done in the disability rights field domestically? Have you had any contact from anyone in the Biden administration, which is staffing up at OSERS [Office of Special Education and Rehabilitative Services], your old place of business?
They are staffing up in the specifically disability/government areas, but they’re also bringing disabled people on beyond typical disability jobs. I think people are feeling very much like they’re a door which is definitely open, and the administration has been putting forth financing efforts to ensure that money will be put in to help ensure that more people are able to get personal assistant services or (be) eligible for Medicaid, and they’re working on voter rights issues in a way that we’re very comfortable with, and on and on.
When COVID came out last year, the current administration was not in place; one important aspect was (that) the disability rights community has become stronger over the years, and that laws like ADA and 504 are being enforced more. We were able to see HHS, for example, come out with a policy statement to ensure that disabled people who contracted or were at risk of contracting the virus would not be considered — you know, one of the things that was going on at that point was who should get treatment first. And there was work going on that would have had disabled people not being seen as equally valuable to non-disabled people, and I think we were happy with the fact that HHS came out with an interpretational policy in 2020 that really helped ensure that states were not able to implement policies that could more adversely affect disabled people. I think groups like the Disability Rights Education and Defense Fund out in California, that was formed in 1980, has become a pretty strong organization that in California, for example, was able to fend off legislation and policy interpretation that could have more adversely affected disabled people.
I think what we see now is a stronger disability community, talking about what needs to be happening. One critical issue is, our community needs to continue to grow. Those people with invisible disabilities need to feel safe that they can talk about (them), talk about what is working and what is not working.
We represent, like, one in four (people) according to the CDC, and if we can get our voices out there and the voices of family and friends who understand what it is we’re needing — we’re talking about rights, and the ability to not only move about our communities but also to be able to get appropriate training, education and jobs, and to be able to feel comfortable in our communities where people don’t fear us or question our ability to appropriately contribute.
What is your experience of the pandemic as a disabled person? I was thinking maybe one of the small ‘blessings’ of COVID is that it’s given the non-disabled a taste of what it’s like to be shut in. But has it been isolating for you, or freeing, or what?
I wouldn’t say freeing! (laughs) No, I’m an extrovert by nature and so I think it’s been a mix of — because I use personal assistants it’s meant that I am always relying on other people, and in the beginning before there was the vaccine, being at greater risk because nobody was vaccinated and what could come into the house we didn’t have much control over. So I think feeling vulnerable, my husband and I both have disabilities so we definitely were cautious and still are…My thought is that I’m no different than many other people. You like to be out and about, be able to do what you want to do on a regular basis, then this is very restrictive, appropriately so. I guess because I had polio in 1949, I also feel very concerned about people who are unwilling to get the vaccine because we shouldn’t be divided over advancements in science that can prevent death.
I think recognizing what we’re calling long COVID and the long term impact that COVID will have on a certain percentage of people, which is very similar to polio, person by person things are different. I very much value my life as a disabled person, but, you know, you wear a seatbelt and you don’t allow people to drink and drive — all these things to prevent people from dying and causing disability. I think it’s both sad for the individual people and their families, but then (also) for our country overall. It’s deeply concerning to me how there’s been this distrust that’s been dealt about people’s views towards public health. In the end, it’s having a negative effect on our entire community from an economic perspective as well.
Did you ever hear from Joe Califano again after the sit-in? He never called to apologize or anything?
No, never. He didn’t have to apologize, but in my view it would have been very appropriate when they signed the regulations to invite some of the leaders in from an organization called the American Coalition of Citizens with Disabilities, and say, “Glad this is happening, now we’re going to work together in implementing it.” It never happened, for many reasons. I just got a letter of apology from the ACLU like a week and a half ago. In the book I mention how I had spoken to the ACLU when I was in college, saying that I was concerned that I might be denied my (teaching) license because of my disability. And they told me, ‘Well, if anything happens, call us.’ So after I was officially denied my license, I contacted the ACLU in New York and said, ‘I’ve been denied my license; I was told to contact you if that happened and I’d like to come in and meet.’ And they called me back and said no, there was no need for a meeting because I hadn’t been discriminated against; I was denied my license because I couldn’t walk. Anyway, about 10 days ago I got a letter from the head of the ACLU apologizing. Which, 30 years later –
Better late than never, I guess.
Well, I very much appreciated it.
I know you have to go, so I just want to thank you very much, it was wonderful to talk to you. I would like to see you at the White House receiving the Presidential Medal of Freedom in the not too distant future.
Thank you! Stay in touch.
The Odd Interview 