“Living With” explores the contours of life with chronic illness, from the prelude to diagnosis to new patterns of living, to wrestling with big questions about illness and health.
Laura Mauldin was immersed in Deaf culture from childhood — but she’s not deaf. She went to a school that happened to educate many deaf children, and so she grew up learning American Sign Language. That early experience was formative, and set her on a path to become a professor and writer in the field of disability studies.
Since she was fluent in sign language, Mauldin applied to graduate school at Gallaudet University in Washington, D.C., a university for deaf students. “And I’ll age myself: I totally applied by mailing in a VHS tape of myself, because that’s how you had to let them know that like, ‘Yes, I can come to your school,’ because everything is taught in sign,” she said.
It was there that she developed an interest in a distinction some of her peers were drawing between Deaf culture and identity, and deafness as a medical condition. They resisted being defined as a medical problem, Mauldin said. She wanted to know more — what are the roots of medicalization?
Just a few years later, at 27, a new relationship would transform her perspective. Her partner, J., was diagnosed with leukemia, and later other conditions, and Mauldin became a primary caregiver until J.’s death. It was an intense and traumatic experience she captured in an essay for the Los Angeles Review of Books, “Widow’s Peak,” and one that brought into sharp focus the ways in which caregivers are hung out to dry.
Mauldin is now working on a book, “Care Nation,” about the lack of support for disabled people and, as a result, for their unpaid caregivers, and about her own experience caring for a chronically ill partner. “We have a care crisis because we don’t value caregivers, because we don’t value the people they care for,” said Mauldin, an associate professor at the University of Connecticut. In the process, she has come across dozens of examples of ingenuity that people with chronic conditions and disabilities use to get through the day. What started as a way to immerse herself in her interview subjects’ environments turned into Disability At Home, an online repository of inventive, patched-together methods of getting things done while disabled.
STAT spoke to her about her forthcoming book, her gutting personal essay, and the complex demands of caregiving. This interview has been edited for brevity and clarity:
Your bio says you’ve studied disability through a feminist lens. What does that mean?
Feminist theory looks at how we have these bodies that have these biological features, and then we apply meaning to that. We give it social meaning, and then we’re in a hierarchy based on those physical attributes. I started thinking about, “Well, disabled people’s bodies, similarly, there’s a bodily characteristic here, but it’s the meanings that we apply to that.”
You’ve written about the borrowing and recycling of tools, language, and frameworks between identity groups, like when disabled people use the queer concept of “coming out” to share their disability status, for example. How do you see the borderland between disability and chronic illness, if there is one?
Oh, this is such an important topic, because I think a lot of people who have disabilities don’t identify as disabled, and then you bring chronic illness into it and people are like, “I’m not disabled, I’m just chronically ill.” And then other people I’ve spoken to, like in research for my book that I’m working on, one of my participants, who is chronically ill and disabled because of it, still does not identify as chronically ill, which I think is interesting. And I think it has to do with our own internalized ableism. We so devalue disability that we don’t ever want to associate ourselves with it.
There’s an infinite number of impairments because our bodies can go haywire in an infinite number of ways. But it’s how society treats you based on that impairment status. It doesn’t matter if it’s episodic, progressive, or static, where it’s sort of the same all the time. That impairment, in the eyes of others or in our systems — like Social Security Administration or whatever the system is that you must check boxes — you then become subject to systems that are about excluding and managing disabled people. You may not say, “I identify as a disabled person,” but you’re treated in these systems as such.
“We so devalue disability that we don’t ever want to associate ourselves with it.”
What internalized ableism does is make disability our own individual, isolated problem, rather than a product of a system that devalues your body because you are disabled. But we’re so pent up around that internal hatred of disability that we can’t even let ourselves go there.
How do Covid and long Covid, what some have called mass disabling events, shift that paradigm?
Well, in some ways, everything is the same as it ever was, and in some ways it’s different. So same as it ever was, meaning people are becoming disabled from long Covid, but the systems aren’t funded enough, supported enough, or valued. The systems are not there to step in and support people with long Covid. There’s a system that’s just in shambles because we don’t value disabled people, so why would we value caring for them? And so all these newly disabled people are just finding out all of the things that disabled people have always lived with, which is disbelief, suspicion, lack of supports, all those kinds of things.
In other ways, one might think, “Well, there’s more people experiencing this, so wouldn’t this suggest that there might be opportunity for social change if there’s more people included under this umbrella?” And to that I say: It remains to be seen. I don’t know if you’re familiar with Imani Barbarin, but she’s a really wonderful thinker on these issues. And I remember seeing a tweet from her where she said, in fact, the more disabled people there are, the more virulent the backlash will be and the more oppressive the systems will become, rather than the other way around. I listen to her. [But] I don’t want to be totally pessimistic about it.
We can shift to something more positive, which is “Disability at Home.” Why was it important for you to make that website with a bunch of crowdsourced tools that people were building at home?
I was doing the research for this book and I was about to start, and of course Covid hit. Usually I go and interview people and I see them and I see their world and I see their context. Without being able to do that, I needed some kind of way to understand the context and understand the material world that they’re living in, so I asked them to send me photos. So it was sort of incidental, where I ended up with this enormous — more than 500 images — amount of material to work with.
And I started going through them, and I did interviews with everybody about their photos. We had long conversations about every photo that they sent me. The people I talked to said, “I never thought of this as creative,” or, “I never thought of this as something worthwhile, I just was trying to get through the day.” And I kept responding with, “Oh, my gosh, how did you think of that?” And so then I was like, well, I can’t just hold onto this. It can’t just be me that knows this, like this is my special little treasure chest that I get to keep. And so then I wrote a grant application and got a grant to pay a web designer.
Right now, what are some of the most fertile areas of study for you?
What I’m thinking most about is making sure that I write about, in a very personal way, the rawness of that struggle against our fallible bodies, how we ultimately just don’t have control. And I think that’s something that is a human problem.
But I also think that, particularly as a white person doing this work, and not all of my participants are white, but most of them are, what that struggle looks like is going to be different depending on class, race, gender — all of these things are intersecting. And while a lot of my book tells the stories of white folks who are struggling against this, I do think it’s different in communities of color. It’s my responsibility to confront the ways that whiteness operates in disability. And by that I mean the ways in which independence and autonomy and this “everything you do on your own” value system, which I would call ableist, is also the cornerstone of white supremacy.
Do you identify as disabled or chronically ill?
I don’t know.
Has that ever presented a challenge for you in your work (i.e., skepticism from people in the disability community)?
On the one hand, I don’t think we have to be something to be able to write about it. Nobody would write about anything. At the same time, I don’t know. I struggle with my own PTSD and trying to figure out: Is it internalized ableism that gives me pause, that somehow I’m not disabled enough? I’m just not sure.
I would love to talk a bit about “Widow’s Peak.” It seems like that experience of caring for your sick partner at such a young age was a major entry point for you into the world of caregiving. The essay was heart-wrenching. What drove you to write it and put it out into the world?
I actually had a [book] participant call me the other day and he said, “I just read ‘Widow’s Peak,’ and I had to call you.” And it’s interesting because these are my research participants that I ask all the questions. I didn’t talk about myself with them. But what I was always keenly aware of is that I wanted to do this work so that people didn’t feel alone, because I know how emotionally destroying it is. When I was speaking to him, he said our stories are different; it’s not like we lived the same, parallel experience. He said, “But there were these tiny details and these tiny moments that I hung on to, because I did recognize it.”
And I’ve gotten many emails from strangers, people who just found me and wrote to me and said, “I read this essay,” and they would tell me about their own experience. That’s the reason I did it. It was also a story that I needed to tell about my own coming into having PTSD and having to live with that and figure out what it’s like to live with that for the rest of my life. It was very intense and severe and then waned over time with particular treatments, and now is sort of an episodic thing that I constantly have to deal with but have better tools for doing so.
I wanted to practice writing in a way that gave me some catharsis, but that wasn’t the point. Because that’s not enough, frankly. I don’t think people want to read our journals or whatever. I think people want to find something that looks like them, something that they can hold on to that makes them know that, oh, I am not alone in this.
You recount your former partner’s experience with leukemia and heart failure and a couple of other conditions. What big questions or insights did that offer you about what it means to be ill?
There’s just so many different diagnoses. There’s so many different ways to experience the total calamity that is our bodies. That’s the thread for me across all the work, is thinking about the fallibility of our bodies and the way that they become injured or decrepit or simply changed, you know? I think it’s easier to go to the grief with illness when you know it’s terminal or you know it’s progressive — it has a shape to it. And with disability, particularly kinds that are episodic or static, the shape is more yet-to-be-determined.
I don’t know why it’s my personality to do this, but if there is some kind of struggle or wound to go into and investigate, I want to do it. I can’t help it. And I want to know how we, as humans, try to grapple with the failure of these bodies that we have to exist in.
Every time we don’t talk about it, we leave it up to these systems to make things harder on us because nobody wants to look it in the eye. And that’s why we have systems that penalize, exclude, don’t support, are actively hostile to disabled and ill people because we just can’t look at it. I don’t think that we can collectively care for each other until we can actually, in our own individual lives, face these facts. So I feel a little bit like carrying the flag of doom and gloom, you know, like, “Here I am! We’re going to talk about these really hard things!” But the reason I want to talk about them is so we can actually address them and it doesn’t have to be this hard.
You wrote about feeling “demoted” from lover to caregiver and becoming, ultimately, a life-support system. Was that hard for you to admit?
Absolutely. I wrote around it and I wrote around it and I wrote around it. And my current partner looked at it and said, “I think this is what you’re saying.” So he really helped me say it in a straightforward manner, own up to it. And it felt awful to say it because you’re not supposed to.
At the same time, I didn’t really have formal help. It was all on me. In other words, there’s both cultural and structural reasons why I was demoted. Writing the book now is trying to hold those things and trying to understand and show how that experience of me feeling demoted was partly because of things outside of me. I didn’t have any help, so of course I would have to take up all of this labor.
What would it look like if we had help? Would I still be able to maintain my role as a partner in a better way without having to feel demoted? I would venture to say yes. I was losing my own life in this process. It was just being whittled down to this one thing that I had to do.
“ I was losing my own life in this process. It was just being whittled down to this one thing that I had to do.”
I imagine there are many people who feel that way but feel like they’re not allowed to. Thinking even of marriage vows — “in sickness and in health” — and like, what does that mean? That you need to shoulder whatever, individually, independently?
That comes up in the book over and over again with my participants. One of the things I’m writing about in the book is the way in which marriage and these vows are actually used as a way to provide cover for state abandonment. We make people feel that it’s all on them as an individual and we do it through these elaborate rituals and vows.
What are some of the common threads that you hear from people who are in caregiving roles about their needs, their desires, the ways they’ve been neglected?
One I’ll flag, that I think piques people’s interest and anger, is affairs and sex. That’s a big one for spousal caregivers. That’s a big point of contention, around whether or not you’re allowed to cultivate a dating life outside of your partner who you’re caring for, and what that looks like if you do. That comes up a lot. A lot of people deal with that by completely shutting down that part of themselves. And that’s a huge loss and something that is definitely part of the grief that is experienced.
It is controversial. There are very different views about this, ranging from, “Got to do what you got to do,” to, “Nope, this is your lot, this is what you have accepted. You must accept this and live without that portion of yourself” — both of which are really tough.
“One of the things I’m writing about in the book is the way in which marriage and these vows are actually used as a way to provide cover for state abandonment.”
What is the big argument you’re making in the book?
Trying to link America’s care crisis, our lack of support for caregivers, and interpreting that as actually a lack of support and hatred for ill and disabled people. … There’s some steps that we have to take to go to that point and really confront ableism if we have any hope of getting out. I think things are very siloed. Care advocates are advocating for caregivers and disabled folks are advocating for disabled folks. And I think sometimes we don’t see those things as connected as they are.
Want to share your story of living with a chronic illness? Email [email protected].
STAT’s coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.
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