Into Facing the Pandemic with a Disability
Trymaine Lee: Since the beginning of coronavirus pandemic, we've heard a lot about the most vulnerable among us.
Archival Recording: The elderly and those who have underlying conditions right now should really hunker down.
Archival Recording: We're protecting the greatest generation right now and the children of the greatest generation.
Lee: But there's another group that isn't usually mentioned, people with disabilities.
Andrew Pulrang: I have arthrogryposis which is a kind of a complex set of conditions from birth that affect my musculature and skeletal arrangement and things like that. The way it affects me the most is it reduces my lung capacity.
Lee: Andrew Pulrang is one of 61 million disabled Americans. He lives in New York State. He's a long-time advocate for disability rights. And coronavirus scares him.
Pulrang: I know that I am susceptible to lung infections. So I thought, "Well, this is not gonna be good for me. And I'm really gonna have to watch out for this."
Lee: It's not that a disability alone is a risk factor. But according to the CDC people with disabilities often do have other health conditions that put them at risk. In fact, adults with disabilities are three times more likely to have heart disease, diabetes, cancer, or a stroke.
Another reason many people with disabilities are at higher risk for this virus is that it can be harder for them to socially distance from caretakers, for example, or to wash their hands or wear a mask. Now it's hard to know the full scope of the risk because there's no comprehensive data on COVID rates among people with disabilities. But around the country, some group homes for disabled people have been coping with serious outbreaks. And in California prisons, lawyers who are suing the state say about half of the inmates who've died from COVID had a known disability.
Lee: I'm Trymaine Lee. And this is Into America. Today just a few days after this nation marked the 30th anniversary of the Americans With Disabilities Act, we take a look at how people with disabilities are weathering the pandemic and navigating the future. I spoke with Andrew Pulrang about what this pandemic has been like for him and others with disabilities.
Pulrang: On top of all of the practical issues, I think what people need to realize is that so much of the rhetoric of this whole pandemic has been very devaluing and upsetting for us. From the very beginning we were all told, "Yes, this is bad. But at least it's only elderly. At least it's only people with chronic conditions.
"So you don't have to worry." You, being assumed to be normal people, right. This was told as a kind of comfort. Number one, it turns out not to be as true as people kind of thought. And number two, even if it was, what a horrible thing to say. You know, depending on the type of disability and their own situation, people with disabilities always feel a little bit on the knife edge of being accepted and valued and not.
And this kind of tipped things over a bit, you know, extended way. It made us feel that frankly we're not valued in the same way as other people. That's a real hit to the morale. It makes us feel literally dispensable. And then when you add to that the fear that we had and may have again of literally having decisions made that we're not worth saving.
You know, if I do go to a hospital, am I going to be allowed to have a ventilator if I need one? And is my life gonna be considered worth saving compared to another person with COVID who doesn't have disabilities? You know, are choices gonna be made? There are states that policies on the books to say that it is okay in situations like that to deny care to these people who are disabled and to give it others instead.
And that's terrifying. That is terrifying. Not to mention the fact that people with disabilities include people of color and people who are marginalized in other ways. So it's layer upon layer for them. You know, we're afraid for our lives at this point. And I don't think that's an irrational fear.
Lee: We all kind of had our lives rearranged in different ways. And we've had to kind of alter the way we just go about our daily lives. How is that for you, gettin' outside, goin' around? Like, how did you actually have to, like, you know, cater your life to this new reality?
Pulrang: Well, you know, I was fortunate in a lot of ways that I'm able to isolate myself without too much difficulty. You know, 99% of the time I take care of myself. I don't live with other people. I'm not in any kind of institutional care setting. I don't even have home care, except maybe once or twice a month I hire a guy to come and help me do a few things that I can't do for myself.
I'm able to work from home which again makes me very fortunate. It's just meant that I have kept myself in my place literally in my apartment since mid-March. And I'm making the decision not to go to places with crowds. The most I worry about would be going to the store to get some milk or something.
Lee: So how do you actually handle that? Because we know some people have taken kind of a cavalier attitude towards what we're seein' happenin'. But you need milk. You need bread. (LAUGH) You need eggs, right. You need food. So what do you actually do in those situations?
Pulrang: Well, two or three times I have sat in my car before going into a place that I would usually go to and seen three or four people go in and out without masks. And I just turn around and went to another place.
Lee: Say, "No, not for me. Not today." (LAUGH)
Lee: So Andrew, you use a ventilator at night. First, just a quick explanation on what a ventilator means in your case. And then how this has impacted yourself during the pandemic.
Pulrang: Okay, well, a ventilator is otherwise known as a respirator. It's a machine that has a hose on it that attaches to a tracheostomy that I have. A lot of people use them all the time. In the hospital, you're on it all the time until you're off. But I use it at night to supplement my nighttime breathing.
At the very beginning, you know, I made an effort to talk to my ventilator supplier about, you know, anything I should be doing differently. If there were any concerns on their end about my ventilator and keeping it supplied and keeping it with me. I mean, at the time it wasn't completely out of the possibility that with a shortage of ventilators that they might confiscate ventilators.
You know, somebody who only needs it at night might have to give it to somebody who needed it all the time. My ventilator company said, "No way. Your ventilator is your ventilator. And there's no way that they would take it from us/you." And I was like, "Oh, that's great. That's good to hear."
At the same time even then I was like, "Well, that's what you say. (LAUGH) What if the state comes and says, "No." What are you gonna do? I don't think that particular thing happened anywhere. But it was part of the discussion. And it's part of what made this whole thing scary for me.
Lee: We've heard a lot about vulnerable populations. You think about nursing homes. You think about people who live in densely populated cities where it's hard to get away from people. People with pre-existing conditions and smokers and diabetes. And while we know that people with disabilities, right, you can't lump 'em into a monolith. But from everything you've heard, have disabled people been hit harder by COVID? Because I don't hear much about that at all.
Pulrang: Yeah, I think the most noticeable effect has been in nursing homes, group homes, any congregate care facilities. Almost by definition the people there are people with disabilities. We may tend to think of them as a separate type of population. But those are people with disabilities.
If they weren't, they wouldn't be there. And the devastation in those has been really horrific. And the way I look at it, that's my community. I don't live in those places myself. But, you know, I've known people that did, known people that worked really hard to get out of those places and live more independently.
But the people that are still there have been hit extremely hard. And it's been devastating. The real problem is that the model itself of congregate care is really bad particularly in epidemics. I mean, there's only so much that you can do to make it safe in an epidemic when you have, you know, scores of people living under one roof, possibly hundreds, being served by scores, maybe hundreds of other people who come in and out every day from the community, all living in a variety of places and locations, interacting with hundreds of other people.
The math, if you start adding up the math of that, of those interactions, it's terrifying. Now I would have to say that I come from a part of the disability community that is very skeptical of congregate care anyway. There are a whole boat load of reasons that we would like to see that model reduced greatly if not done away with. So we come in with, you might call it, a bias. But it think this just highlights another reason why that whole model of congregate care is problematic and really needs to be looked at as a whole.
Lee: After the break, more on the broader issues people with disabilities are facing during the coronavirus pandemic. We'll be right back.
Lee: Do you feel like public officials and elected officials have been taking disabled people into account over the course of this pandemic?
Pulrang: I really don't think so in the way that we would need to see. I mean, I think that they're aware obviously that people with disabilities and chronic health conditions and age and all of the above are at higher risk. But that's not the same thing as going to us and our groups and saying, "Well, what do you think? What do you think should should be the high priorities?" They really haven't done that, at least not that I've seen.
Lee: Yeah, why not?
Pulrang: I think the short answer is ableism. It's basically a pervasive and largely unconscious idea that people with disabilities are not people that you consult. Hopefully they're people that you care for, but you don't consult them. It doesn't occur to people to ask us what would be better. And this is not the first time that that's happened. That's a very common thing.
Lee: You know, we've seen the videos by now, at least I have, of, you know, people actually getting into fights with, you know, shop workers and restaurant workers 'cause they refused to wear masks.
Archival Recording: I have a breathing problem. My doctor would not let me wear a mask. So anyone harassing me to wear a mask, you guys are violating federal law. Because that's not okay. (INAUDIBLE PHRASE)
Archival Recording: Because I have a medical disability. (INAUDIBLE PHRASE)
Lee: And one thing that I saw come out of this is a lot of people are pretending they have some sort of disability so they can avoid wearing the mask in different establishments. What do you think about that? How does that make you feel?
Pulrang: It makes me feel sick to my stomach. It makes me incredibly anxious and upset, but maybe not for the reason that you might think. One of the most common forms of ableism that people with disabilities experience is having our disabilities questioned when we try to get some kind of an accommodation.
Whether it's parking in a handicapped parking spot, you know, having a guide dog in a coffee shop or, you know, any kind of reasonable accommodation. If our disability is not immediately apparent or doesn't fit the idea of what some observer feels is a valid disability, so many people feel free to question us and say, "You're a faker."
So it's not just that people are faking perhaps for their own political and whatever reasons. They don't want to wear a mask and they're using testimony an an excuse. It's that it feeds into this general distrust that everyone already has about disability.
Now the technical side of it is that if you really can't wear a mask and there are people with disabilities that make wearing a mask very difficult or impossible. If that's the case, that still doesn't give you the right to endanger other people by going inside a store and shopping like everyone else.
Under the Americans With Disabilities Act, what it would say is, "You can get served in some other way." If that was the case, and you really had other people in mind, you would say, "Can I tell you what I need and have you get it for me, bring it out to me? And I'll pay for it here out on the sidewalk or have it delivered."
But simply waving a card under somebody's nose and saying, "You can't stop me because ADA," that's just not a thing. That's not a thing for real under the ADA. I don't walk around with an ID card that says I'm disabled so that I can get special treatment. I have to negotiate that myself.
Lee: You mentioned this earlier that you're able to work from home. I'd imagine that'd be a great move for a lot of folks who are disabled to be able to be in a position to work from home.
Pulrang: I think it's something that a lot of disabled people want to be able to do. And in fact one of the things I've heard a lot of from other disabled people is they're kind of like rolling their eyes a little bit saying, "Oh, now working from home is okay and (LAUGH) perfectly fine."
You know, how many years have I tried to get my employer or perspective employers to let me work from home? But, "No, no, no, you have to be on site. No, no, no, you have to get here at a certain time of day no matter what's goin' on with your disability." But now it's perfectly okay for everybody.
So I think there's a little bit of resentment about that. Having said all that, I think it's also important to know that a huge of number of disabled people are not able to work from home and are in fact essential workers who will have to face, if they haven't already, the dilemma of whether, "Do I risk my health even more than other people because of my disability because I have to go to work?
"Or do I essentially lose my job?" Will there be any flexibility there? Will workers with disabilities have any additional flexibility to say, "I'm not ready to come back yet. And how do I negotiate that with the employer?" Learning what we can do and what we can endure, and when I say we, I mean everybody, through these changed circumstances, hopefully will give people a sense of flexibility that lasts. Whether it does or not, I don't know.
Lee: Andrew Pulrang, thank you so very much for joining us. I really appreciate it.
Pulrang: I appreciate it too. Thanks very much.
Lee: Andrew Pulrang is a disability rights advocate and freelance writer. Into America is produced by Isabel Angel, Allison Bailey, Aaron Dalton, Max Jacobs, Barbara Raab, Claire Tighe, Aisha Turner, and Preeti Varathan. Original music by Hannis Brown. Our executive producer is Ellen Frankman. Steve Lickteig is executive producer of audio. I'm Trymaine Lee. And we'll be back tomorrow.