Judy Heumann
Washington, DC
“We must have policies and funding that enable disabled people to receive the support they need to live in the community, and that those who provide support services to disabled people are receiving appropriate wages, PPE, and respect for the work they are doing. Living in the community will enable disabled people to be seen as valued members of society.”
Ryan Roach: Could you let us know a bit about yourself and how you identify?
Judy Heumann: My name is Judy Heumann. My pronouns are she/her. I’m a white, disabled, 72-year-old woman using a motorized wheelchair. I had polio in 1949. I am a disability rights activist with domestic and international experience. I consider myself a networker and have been very involved in doing work on cross-disability related issues. I guess for my entire life, very much supporting the expansion of the disability rights movement so that it becomes inclusive of all the groups that in fact encompass our movement.
RR: What has your experience been like during the pandemic?
JH: So I have done a lot of international work for many decades now and my last job before I started with my own company was working in the Obama administration in the U.S. Department of State. So from 2010 to the beginning of 2017, I was doing a lot of international travel. And from 2017 until 2020, March, I was doing mainly domestic travel. My book came out in February, the movie came out in March, and I was poised to be doing a lot of traveling this year, domestically, about the book and the film. So that all got thrown up in the air. And so basically I think what’s been going on this year is, for the first time, I’ve never felt older with everything going on around people who are high-risk. So it’s a combination of the fact that when I had polio, it impacted my breathing. I have never taken extraordinary precautions because I’m basically healthy, but I do definitely have an impacted breathing system. So it means that I’ve really needed to be taking precautions. At the same time, because I’m a quadriplegic, I can’t do many things by myself. And my husband is a paraplegic and he’s had a number of medical issues, so he has two people who come in six days a week to help him. And I have two people who live in our apartment to help, mainly with cooking. And then, during the day, there is Stevie and Becca. We are what I call “the gruesome threesome.” They work on scheduling and social media and emails and all that. They, too, have had to take precautions for themselves and for us. So I think there’s a lot of moving parts. And there isn’t a way that I could socially isolate or quarantine alone or me and my husband wouldn’t be able to survive. So I think it’s one of the issues that many of us face; how do you do your very best to protect yourself? Basic things like taking a COVID test, we have to go someplace to take it, you’re not doing them at home. Or, you know, we have to do one of these packs and you can’t just quickly go and drive in a car and go someplace. I guess another issue for us is Cory doesn’t drive right now, so we’re really kind of stuck. Lots of people are talking about going out in their cars, going here, going there, getting out of the city, but we’re not able to do that. So we’re kind of very stuck. And so, for me, who’s been very much into traveling, and I’m very extroverted as I’m sure you could tell, all of that’s been changing. On the other hand, it’s been an opportunity because I’ve been getting to do many more things than I typically would, although the interaction is very different. You do a lot of things on Zoom and you don’t really get to know a lot of the people you’re talking with. And when I do presentations, which can be from 30 to more than 1,000 people, you basically don’t even get to see them, hear them, touch them, know what they think, see their faces, you know? As you’re giving presentations, do they think that you suck? Or do they really like what you’re doing? Or is there a mixed reaction, you know? You don’t get any of that. So it’s in a nutshell.
RR: What has your experience been like coping during the pandemic?
JH: That’s a very interesting question. I think it depends on the day, you know? I had this great conversation with someone this morning, and they were telling me that one of the things that they’re doing is that every day they’re listing five things to be grateful for. And I thought, “Huh, that’s really interesting,” so I’m going to try to do that. They said to me, “They don’t have to be big things, they can be little things.” And I thought that’s a nice way to look at things. Five things to be grateful for every day. And I told them I’m going to send them to them so they can see what they are. So to me that is something positive. In some way I’m talking to people less because, I don’t know, I’m Zoomed out by the end of the day. But I have some friends, like last night, for the debate, a friend of mine from California and I watched it together. Like, for an hour and a half, and we kind of moaned and groaned and said a few things during the hour and a half. Basically, we were together but we weren’t together. So, trying to create different opportunities. And then, we’ve become friends with different people on the floor that we live on. And they have a five-year-old boy who we’ve become friends with, so we’re kind of an unofficial pod. And we help to take care when his mother needs to do something. Theodore and my husband get along really well, and they’re playing things like push the wheelchair and stuff like that. So an unexpected outcome. And as I said, I’m Jewish, and these last two weeks, with Jewish holidays, I was pleasantly surprised that the services on Zoom were really good. People worked really hard on making them really engaging, which is not easy to do. So I was very happy about that.
RR: Also, for years you’ve been working as a disability rights advocate and you’ve really been in it since the 1970s or even before. How do you think this pandemic is going to impact the disability rights movement?
JH: So I think the movement has, over the last couple of years, really been expanding. The racial diversity and somewhat the representation of people of different types of disability has also been expanding. But the overall effect of COVID, I think, remains to be seen. Because there are many implications as a result of COVID that we’re not really hearing people talk a lot about. And by that, I mean a combination of the financial impact that COVID is having in our towns, our cities, our states, our federal government, countries around the world, what’s going on with climate change, and the impact of climate change on disabled individuals and new populations of people that are acquiring disabilities in countries where there’s only been some basic work done on rights of disabled individuals. The Convention on the Rights of Persons with Disabilities, I think, is very important. But really understanding that in many countries, it’s really just kind of the beginning of where things are going.
And from a financial perspective, I think there are many implications. One of them is that the disability community in the U.S. and countries around the world have really never spoken about the adverse effect of nursing homes and other institutionalized settings. And so, on the one hand, I would like to be able to say that an outcome of COVID will be that people recognize that living in segregated institutional settings is harmful to the health of people living in these institutions and working in these institutions. On the other hand, as a result of the budgetary cuts, are we really going to be moving in a direction which is looking at closing down nursing homes, closing down segregated living environments and ensuring that people can be living in the community with the appropriate staff who are getting appropriate wages and being able to be more a part of the community? I am very concerned that that is not going to be an outcome. So I think we’re really going to need to be looking in states where Medicaid dollars are being cut and people are being put at greater risk. Also the whole issue of work. I think at least one million disabled people have lost their jobs as a result of COVID, and the world of work was changing prior to COVID. And the issues in the disability community have only marginally been addressed. And my concern about that was, and is more now, that if disabled people are not being included in the discussions about workforce development, then, as jobs and careers disappear or change, our disabled individuals – and again, very broad term, right? Disabled individuals: 61 million in the U.S., at least one billion internationally. So these are some of my concerns. On the other hand, I do think that one of the issues we need to look at is what’s going to be happening to locally based disabled organizations. You know, the centers for independent living around the United States are all relatively small, but I think, by and large, provide important support in their communities. And they were too small by and large before COVID, but now, as you’re looking at budgets potentially being cut in Medicaid, in independent living, in a whole host of other areas, you can also see workforce reduction and fewer services being available for disabled people.
And I don’t like to talk only about services, because one of the values of these disabled-run organizations is the ability for people who have disabilities to meet other disabled people. And in times like COVID, but not of course exclusively COVID, it’s really important that people have the opportunity to be able to speak with people who may have a disability similar to theirs.
And another whole issue is we have no idea about the long-term implications of people who have COVID. And we won’t for a while. And, you know, like we were discussing earlier, Ryan, where groups of people with what I would call disabilities, you know, “chronic illness,” who, for whatever reason, don’t want to be identified as having a disability. I think that, you know, how people approach these discussions – I think it is very important and it’s possibly a good learning time.
RR: During the pandemic, the government and media have deemed the chronically ill, disabled, and immunocompromised communities as “vulnerable.” What are your thoughts on the terminology of “vulnerable”?
JH: I mean, I guess in some way I do feel like we are vulnerable. The question is, does “vulnerable” mean that you give up control? And I think they’re different issues. You know, one can be at risk or vulnerable. If you’re allergic to nuts, you are vulnerable if you’re going to be eating them. You need to know what’s in the food in order to ensure that you’re not at risk. I think you might use a different word. But I think the issue in disability is whether these words, whichever they may be, are resulting in people thinking that we are less valuable. And that when measuring my life compared to somebody else’s life, and nobody will know me when I go into a hospital by myself. So I think that’s really my bigger concern, is how do people, in this case, in the healthcare system, view our lives in comparison to others? And if they view our lives as – let’s not even say less valuable, let’s just say that they believe that they have limited resources – they’re going to put those resources on people they believe are more likely to be able to benefit and return to some degree of normality. I think those are all my big concerns: That we need not to be judging the value of one person’s life over another. And the other thing myself, my husband, and others have been talking about, which we typically don’t, is about if we wind up being in the hospital, COVID or not, what is it that we want to have happen to us? Do we have it written down? How are we giving that information? Do we have people that are there if we can’t speak for ourselves? Who are the people you want the medical professionals to be speaking with? And I think COVID has really, for some people, made us look at issues that we wouldn’t otherwise be looking at. It may be because I’m older also – younger people may not be thinking about some of these issues, and you can understand that too. I have lots of sensitivity to a lot of other words, but I think, depending on how it’s used, I’m okay with it.
RR: Over the past few months, media correspondents and politicians have continuously talked about “vulnerable” populations, yet rarely invite anyone from these communities to represent themselves or their communities. Why do you think that is?
JH: Because I think it’s relatively new. That pre-COVID, that was beginning to happen. And I think it really depends. So there’s an organization in Chicago called Access Living; it’s a center for independent living. They have been very active with local media. They have a communications director who has a disability, and I know that a few months ago, they were working with their local PBS affiliate on stories relating to disabled people who were affected by COVID. So there are examples where community-based groups are reaching out to the media. I think when we look at representation of the disability community, it’s not that COVID hit and people stopped doing things that they were doing before. I mean, engagement of disabled people and appropriate representation in the media is something that has been being discussed for many years. And while there are some small changes happening, there hasn’t been any earthquake in this area. Therefore, I think the kind of normal groups that the media would be working with, you know, they didn’t know them before and they don’t know them now. That’s why I think disability rights organizations are so very important, and they are stronger and are more important, I think. Not that smaller groups aren’t important, but my point is the stronger the groups, they’re more able to really speak about issues like representation in the media. So I was a senior fellow at the Ford Foundation, like, 2017 through 18, and the area that I was working on had to do with the representation of disabled people in the media. So I did this paper with two colleagues called Roadmap to Inclusion: Changing the Face of Disability in Media. And right now I’m working with a couple of other colleagues through an organization called DREDC - Disability Rights Education and Defense out in California, and we have a project that’s called the Disability Media Alliance Project. That project is one of many, but this particular project is looking in journalism, advertising, television, independent filmmaking –representation of disabled people across the board. And I think people are starting to look at the issues of journalism because there are many different groups of journalists – women, Black women, Latina women, this group, that group, the other – but there are no groups on disabled people. And so one of the things we’re working on is helping to support the development of a group of disabled people in journalism, both to be able to expand the number of disabled people in journalism, but also the authenticity of journalism representing disability issues. But I think the other issue in journalism is, and it really gets back, Ryan and Connor, to this issue that we’ve discussed a couple times, which is people not identifying as having a disability. And I think one of the values of laws like the Americans with Disabilities Act was that disabled people had to come together. And while we’ve been separated for so long, and the interventions that we need may be different, but, at the end of the day, discrimination is what we’re fighting. And so, being able to get the point across in the media, broadly speaking, that the absence of appropriate representation of disabled people not only means that we, as disabled people, are not hearing about ourselves and learning about ourselves, but it also means the general society is not learning about us. They’re getting, in many ways, very negative messaging: Everything from no messaging at all when you look at how the media talks about things like underlying conditions – underlying conditions are disabilities. People who are Black and brown and are poor are at higher risk. People who have diabetes and other conditions relating, those people are dying at a higher rate than others. We should be saying that they’re disabled individuals, and it’s not being said enough. So there are all these different areas that just need to be lifted up meaningfully to become inclusive disability. Right now I think most people don’t notice when disability isn’t there, or don’t notice when disability is inappropriately addressed, or in an ableist way addressed.
RR: During the pandemic, society has been able to accommodate the general public with accommodations, like work from home, that have been asked for previously by the disabled, chronically ill, immunocompromised, and neurodiverse communities, yet these communities were typically denied. Why do you think society has been able to accommodate the general public when these accommodations have been denied previously?
JH: Because it was a minority group asking for things and it’s no longer a minority, so I think businesses have had to make changes that they previously thought they couldn’t make. For me, one thing that’s important is, as we move out of COVID sometime in the next year, I don’t want people to be believing that disabled people should only be working at home. That’s a whole other area of concern for me. So I think the way you posed it, as, “Why were people being denied things that now people are getting,” that to me I think is really the relevant issue, and how are these changes going to be looked at within companies? Not only why were these kinds of accommodations denied previously, but what have they learned and what needs to be carried forward? I think people that are working at home now also are not getting things that they may be getting in the workspace, even from an accommodation perspective. So I think it’s a very important question. Many people are asking it, and, again, I think it really in part relates to the changing world of work and what are things going to look like in the future? And what kind of accommodations are we going to be looking at? And for whom? And some of them are disability-related, and some of them aren’t.
RR: Moving forward, how would you like to see society and the government start to respond to the COVID-19 pandemic?
JH: The government needs to ensure that our society understands what the COVID virus is, and how to protect ourselves so that we can limit its spread, thus reducing the number of people who become infected, and also reducing the number of people who are dying. Government and the general society need to understand that the largest number of people who are dying are those with disabilities. We must ensure that we strengthen our healthcare system by guaranteeing that all people are insured. Additionally, we must have policies and funding that enable disabled people to receive the support they need to live in the community, and that those who provide support services to disabled people are receiving appropriate wages, PPE, and respect for the work they are doing. Living in the community will enable disabled people to be seen as valued members of society.