“I think that there is a deep pleasure in looking at variants.” An interview with author and artist Riva Lehrer

For decades Riva Lehrer has explored physical identity and the socially-challenged body in her art work. She examines the same subjects in her moving memoir Golem Girlher first book, published in October 2020 and reviewed widely. The title comes from Jewish folklore–a golem is a lump of clay who magically becomes alive. Lehrer sees herself as a golem created a modern medicine. The book was a finalist for a 2020 National Book Critics Circle Award for Memoir and Autobiography, and the first winner of the Barbellion Prize for authors who write about chronic illness or disability. Calling it an “extraordinary memoir suffused with generosity, consistent insight, and striking artwork,” Kirkus Reviews also named it a book of the year. Golem Girl was was issued in paperback in October 2021. Richly illustrated with the writer’s artwork, the book is a layered synthesis of visual and narrative storytelling. She begins with her birth; she was born in 1958 with spina bifida, which is incomplete closing of the spine and membranes around the spinal cord during early development in pregnancy. Fourteen percent of children born with spina bifida die before the age of five. Adults often face serious physical challenges.

Lehrer attended the Condon School for Handicapped Children in her native Cincinnati.The school was one of the first in the United States to offer a general education curriculum for disabled children. There she took up art, and continued her practice at the University of Cincinnati. At twenty-two she moved to Chicago, studying at the School of the Art Institute of Chicago, where she now teaches.  

In 1997 Lehrer began “Circle Stories,” a series of paintings of fellow disabled artists; some of these pieces are included in the book. She came to writing later. She has been been published in the New York Times, TriQuarterlyContemporary Art and Disability Studies, and elsewhere. Besides teaching at SAIC, she is an instructor in the Medical Humanities department of Northwestern University. Her visual works have been shown at the National Portrait Gallery of the Smithsonian, the United Nations, the National Museum of Women in the Arts in Washington, and the Chicago Cultural Center, among others. In January 2022 she and Irina Ruvinsky spoke, over Zoom due to COVID precautions. The transcript was prepared by intern Izzy Wade. As of late September 2022, Lehrer was a dozen chapters into a novel.

Riva Lehrer: That is quite a wall of books. You have out-booked me.

Irina Ruvinsky’s bookshelves

Irina Ruvinsky: No, youve outbooked me by writing a book of your own! 

The first thing that struck me about the book was your unusual use of the most essential element of storytelling, which is language. You do a lot of linguistic code-switching between medical jargon and narrative language throughout the book. In some of the early scenes you describe how your mother needed you to communicate with your doctors ever since you were two or three years old. Were you fluent in this highly specialized medical language from an early age? Do you sometimes feel like you are bilingual?

Yes, I do. As time has gone on, I have had to learn medical language for a number of reasons. Certainly for my own care. The experience of being in the hospital in particular demands it. The history of my medical care goes something like this: “Well, you have X and normally we treat X by doing this, but we can’t treat you that way because you can’t take that drug or you’re structurally unsound or something.” In the past I have been given medications or procedures that are flat out dangerous. So I have to always, always be on my guard, every minute and understand what it is being said!

So your knowledge goes beyond merely acquiring and deciphering medical jargon. Did you have to acquire medical expertise in order to be able to advocate for your own care to avoid being mistreated?

Or killed, yes. 

Yes, or killed! However, as far as I know, there is no patient manual for navigating medical jargon. What’s fascinating is that in your book you do engage in some translation to initiate the reader–who may not be familiar with the jargon used by doctors–into that experience. Did you intentionally set out to decode medical language in the book? 

Well, what happens for a lot of people with chronic illnesses or disabilities is that you often become a translator for family and friends when they are sick. I have helped friends with everything from how to get food while you’re in the hospital to how to talk to the patient advocate. I think it’s automatic at this point. This is just the way that I think. There’s a down side to it, in a sense that you can develop a kind of diagnostic brain where everything is being put through this filter, which makes me wonder if this person has this particular condition, or whether what’s going on with them can be the result of something cognitive, psychiatric, or somatic. So you have to watch out that you don’t treat the whole world that way. This problem of language also came up with my use of Yiddish in the book. I told my press that I was not going to italicize any non-English words. My point was that this is my native way of thinking. If I italicize some things, it’s either because that’s almost always how it’s used in a phrase or I want to emphasize a phrase. For example, Latin phrases were italicized in the book. But if it was something that was part of my native lexicon, then I would not want it italicized. 

That’s a really helpful insight into reading your book. Also, on the subject of language: At the end of the book I found this line where you express a wish for a different kind of language for medicine, one that lets us describe (and be described) with clinical accuracy and as fascinating and wonderful phenomena.”  You talk about the idea of somehow reimagining” that language. What do you think that might look like? What purpose would this new language of yours serve?

Well, it would bring in poetic wonder into our conversations about illness instead of using medical terms in a strictly pejorative or negative fashion. When we think about what nature does to the body, either in utero or through the arc of one’s life, especially when things “go wrong,” we get new insights into what it means to have a body. We could start with embryology or the inner workings of the endocrine system to illuminate our understanding of the body. I am thinking a lot these days about the problem of normalization in the case not only of disabled people, but anyone who’s different, anyone who is the only one of their kind in a general context. I think that there is a deep pleasure in looking at variants. If a doctor says to me something like, “The curve of your spine is really interesting, it makes me think of a river, or a snake in action,” or anything that would be a metaphor, that would make me feel like part of nature instead of an unnatural aberration.

Since you brought up metaphor, I should share that I teach a class called Illness as Metaphor. Obviously I borrowed the title from Susan Sontag who was deeply critical of the idea that we should be talking about illness and the experience of pain and suffering in metaphorical terms. But I agree with your point that the language of medicine, which is predominantly rational, doesn’t really capture what it feels like to be ill, what the subjective experience of pain and suffering is really like. What role does metaphorical language serve for you?

Well, I’m obsessed with metaphors and symbols and I discuss them at length in my book. I’ve thought a lot about kids’ books and how when kids start reading they engage with talking animals or talking toasters or any impossible creature that becomes animated or verbal. Those are fascinating to me because those books are often about looking outside the self, building empathy, learning from experience, that kind of thing. What’s happening in that moment is the child’s mind is presented with an impossibility or a paradox, since there are no talking toasters. As the child learns to imagine the possibility of talking toaster they enter into an alliance with that object. 

I absolutely agree with you. I think it requires imagination, it requires literature, in order to be able to describe the experience of impairment and disability. And the awakening of that sort of imaginative power within us is something that I think we usually easily access as children, but gradually lose access to as adults. 

I think the point is to learn how to transcend your identification. It would be easy for a little boy to identify with another little boy in a kid’s book, right? But what does it mean for a little boy to identify with a talking girl turtle? Those to me are the starting points of metaphor and symbol. By taking something out of the rational and empirical context you’re creating in the self a channel towards this useful dislocation so that you learn to encounter the world as not yourself, but as someone else. I’ve never seen anybody talk about that channel, that dislocation. So when I use metaphors in my visual or written work, I am thinking about how to offer a way of relating that makes that possible.

This reminds me of a short story by Gabriel García Márquez,The Old Man with Enormous Wings.” The Old Man does not speak the same language as the other characters in the story and his nature remains opaque and resists explanation. In contrast, the other character in the story is Spider Woman, who was turned into a spider as a young girl for disobeying her parents. While the Old Man is someone who is mistreated and dehumanized, the Spider Woman is treated with empathy and compassion because there is a moral reason for her condition. Do you think that disabled people share similar challenges when it comes to recognition, empathy and compassion? 

I think that’s right. A lot of stories of disability, like that story I tell in the book about the Condon School substitute teacher Ms. Brody, who called us the “wages of sin,” is about struggling towards some kind of explanation. I mean, that is the most toxic form of it. But the other thing about the Márquez story, as you describe it, is that the girl had a “before” body and that she had a comprehensible identity before anything happened to her. Whereas with the Old Man, we don’t know. Was he born like that? Did this happen to him? I think that the story of the “before” body is very common in literature about impairment. So the reader can step in and identify first with the whole, perfect body and then you have a catastrophic event and the story of overcoming it. 

Speaking of perfect bodies, lets talk about sex. In the book you turn to your sexuality and talk about an awakening of sexual desire. Why were your caretakers so extremely uncomfortable with the idea of Eros and disability– the possibility that the impaired body can feel and express desire?  By revealing some very personal, intimate moments of your life, have you tried to demystify that taboo?

The book is about the experience of embodiment and how people around us–society, family– try to normalize us, often with good intentions. There are moments in the book that are about disgust in response to sexuality and disability, but when it comes to the subject of impairment and sexuality I don’t really have an agenda. I don’t want to prove anything or demystify anything or bring anything to light. I really don’t. I just want to show that this is what it’s like to be embodied.

I’ve been getting a lot of emails from my readers, Mostly from people who had a child with spina bifida who did not survive. But one came from a woman whose grandson has a musculoskeletal condition that has nothing to do with spina bifida. She expressed how terrified she was for him and the teasing that he’ll get as he gets older. I was worried that her concern for her grandchild would unintentionally make him feel ashamed, like he is a mistake.

I wrote her back and said: “I understand, but his first experience is going to be your feeling of fear. Instead, you should try to see this as a very practical problem, a series of practical problems. This isn’t a catastrophe. It’s not a tragedy. This condition causes physical asymmetry. Try to be playful with it, have some fun with costumes, turn it into something cool and interesting. Treat each body part as endowed with special power that others don’t possess.” Anyone you care about is going to experience pain in their life. Disability pain is not worse. It isn’t a bigger tragedy than something that might happen to anyone else. My main concern would be about access to proper medical care and social access for this child.

In the book you talked about the idea of not having a strong sense of bodily affiliation, both your own and other peoples. How does it relate not only to your sexuality, but to your experience in a more general sense?

The experiences of so many people are not my experiences. I go out in the world and the world is not built for my body at all. I’m continually baffled by what people think I am. It’s not like I’m hideously shunned, but reactions to me are often hesitant or confused. I published an essay in the Times about how the Corona virus has stolen my face from me. It was about what it’s like to be disabled with a mask.

I wrote about what it is like for me as a portrait artist not to have faces to look at and not to have faces in my studio, but also how my face has always been a tool I use in order to manage people’s reactions to my body. It’s one of the reasons I’m hyper-verbal. It’s one of the reasons I watch people so carefully. All it takes is for me to sit down in a wheelchair to be treated like I’m completely nonverbal and incompetent to manage my own life. 

My face is this mask that I live right behind, it feels like the real me is just right behind my face. So I’m trying to manage the world through facial expressions and language. Having a mask on is making me aware of how hard I work to reach people. For example, this winter I was out at the lake. I take a walk every day by the lake and a lot of the paths were blocked by ice and snow. I got stuck and I fell. I had a mask on and five people passed me by while I was yelling for help. 

That is shocking!

Not for me, this happens a lot. When someone finally stopped to help me he looked completely freaked out. Because I have to wear sunglasses outside and I had a mask on I couldn’t make eye contact with him or use my face to communicate. I am perceived as a cipher and I have this body that apparently is disturbing for people. At that point I felt at the absolute farthest point from being human. I felt like I’m just a scary object. This has been my experience not only with sexuality, but also just my everyday experience. Like that little bit of a flinch I get when I walk into a clothing store. It’s like bouncing a quarter off of a sheet, you get a reaction and you know where you fall.

As a bizarre corollary to that, people who know me recognize me immediately because I’m so identifiable. 

I think of you as very identifiable because of your signature ombre red hair color. Was it an homage to the French director Agnes Varda? 

No, I’ve been doing this a long time and it started out originally as an ode to Susan Sontag. I like the artificiality of it. I like the fact that I’m not pretending to look younger. I’m playing with what it means to be old. 

So speaking of faces, I would like to ask you about portraits. Portraits are your specialty. You’ve painted self-portraits, you’ve painted portraits of other people. Do you think of your memoir as a kind of a self-portrait? How is it different from creating a visual representation of yourself? Do you find yourself relying on similar techniques in writing that you reach for in painting? 

Well, I’ve found that my approach to symbols and metaphors is pretty similar. The most frustrating thing for me was writing a self-portrait without referencing other people. To me my portrait is composed of other people. When I was doing the book, my editors and I kept having the same fight. They kept saying, “We want to know your story.” But I insisted that the story of the other people in the book is my story. 

On the other hand, I’ve always felt like one of the failings of my portraiture is loading it up with too many words, too much explanation. Being able to then turn to verbal language helped me lift some of that linguistic burden from my painting. I am trying to cut down on how much explaining my artwork is doing. Unfortunately, my portrait subjects often want an explanation. So, I’m trying to find a balance there.

I wanted to ask you about your depiction of your mother. You make her seem like a kind of Aristotelian “unmoved mover” who at times kept you alive almost through a sheer force of her own will. It reminded me of Proust’s relationship with his mother. Losing her devastated him, but also liberated him to become an artist. I was wondering whether or not you had a similar experience with the loss of your own mother. 

Well, it was such a long time ago. I was an adolescent while Proust was in his forties. No, there wasn’t an immediate effect. If anything, for a long time I wouldn’t tell anybody that she had died. But I think I was struggling with the truth about what happened to her. In college I did a couple of really painful, small works about her. Then I ran away, I couldn’t do it. It wasn’t until I was the age that she was when she died that I did the self-portrait of the imaginary tattoo of my mother on my arm. I’ve thought about doing more images of her, but, actually, I just can’t. Writing about her was how I approached it. There are two or three portraits of her included in the book, but each one is incredibly hard for me to look at. What’s interesting is that when I was younger, I looked a lot like her. But as I’ve gotten older, I started to look exactly like my father.


I barely see her in my face anymore. I can see a little bit in the upper shape of my lip and if I’d gained weight, you could see it more. But right now, I’m pretty thin and the bones that are showing up are my father’s. They say that most babies look like their fathers. It’s a biological adaptation so that the father is more apt to claim the child as their own. I don’t know if that’s true or not.

I’ve heard that it’s true.

When I was really little, when I was born, I did look like him. And then as I started to grow up, I started to look like my mom. But I’m also now getting glimpses of my grandmother. I’m really fascinated by that, because it’s this whole other track of selfhood. When you look in the mirror, you can trace your antecedents coming up from the depths.  I would like to write a piece about faces. I’ve been thinking about the way that a face is like Loch Ness, about how things rise up from the depths over the course of your lifetime. I always talk to my father about this. It’s like we have a thousand faces as we grow up and have a different face every month. I did a portrait of a woman over the course of her pregnancy once and it drove me up a fucking wall because every time she came to sit for me, she was different. 

You changed the epilogue to reflect the pandemic.

I was wondering if you had a chance to add a chapter on the pandemic, what would the title be? Your titles are great.

Fuck you Assholes” basically. I was on the radio briefly on Friday with Allison Arwady, the head of the Illinois COVID Task Force. We discussed how when the pandemic started. disabled people were told to go shelter, lock themselves away. There were rumors that we might not get medical treatment. We heard that our quality of life was deemed to be limited and that respirators were going to be taken away from us to care for patients with a higher chance of survival.

At the same time nobody was talking about the fact that if you’re locked away, you need some form of assistance. Most people with severe disabilities have to rely on personal assistants and we would be at risk of COVID exposure if we continued to use them.  No one raised it as a problem. We haven’t been able to see our doctors. I’ve been handling all of my medical problems by myself, either over the phone or not at all. When the vaccine was developed with a tiered release, there was no mention of disabled people.

So, after all these months, and all these messages of how much danger we’re in, and the terror we’ve been living with and how long we’ve been waiting, there’s no mention of us. That would be my last chapter. We are locked away. No one can see us. We can’t come out and protest. We’re totally terrified. We’ve been dealing with this forever. People are dying all over the place and we’re still not real to you! We’re not important! Our society is perfectly content with jettisoning us. 

How are you staying occupied during this difficult time? 

I’m doing research for my next book.  

Is it going to be fiction or nonfiction? 

Yeah, it’s fiction. I’m gonna be a weirdo and try to do fiction even if I have no idea how to do it. I am researching brain diseases for my new character and trying to read through some of the literature and understand if my character has this particular brain disease, trying to get it right. But eventually, there’s going to be a chapter where she starts to take puppet lessons. Apparently, when you first take puppet lessons, they give you everyday objects, and have you turn them into characters. There’s this moment after my character has her first lesson, where she steps into her apartment and she sort of falls back against the door because, all of a sudden, everything in her apartment seems to be calling out to her to tell its story. It’s like this tidal wave of insistence that, you know, would never have occurred to her before. But it’s partly because she has been taken back to that kid place where everything is imminent. 

You seem to be relying on magic realism and invoking the Freudian concept of the “uncanny” in your approach to the new work. It strikes that the “uncanny” can be the perfect way to approach the topic of disability since it also appears strange, which requires us to be able to see the other person’s experience from a vantage point that is different from our own. 

Well, I’m very interested in the uncanny. But this next book is actually not about disability. It’s about grief and struggling emotionally to process the fact of death.  Death is something you cannot argue with. It’s death and time, right? They’re functions of each other. Something happens in this character’s life and she can’t process it. I’m really, really fascinated by that. The way that people think about meaning in the face of death.


Irina Ruvinsky is a professor of Philosophy at the School of the Art Institute of Chicago. When she is not shaping young minds into brilliant critical thinkers, she enjoys long walks with her mini dachshund. Her work has appeared in Eclectica magazine.

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