Features / Interviews

Riva Lehrer on Disability, Making Art, and Getting Rid of the Explainy Voice

by Lisa Peet

book cover with painting of woman in read sweater hugging herself whose head is obscured by x-ray reading "Golem Girl: A Memoir" by Riva LehrerThe Golem is a standby of Jewish folklore; Hebrew for “shapeless mass,” it has been brought to life by contemporary writers from Isaac Bashevis Singer to Alice Hoffman. In her memoir Golem Girl, published in October by One World, Riva Lehrer offers it as a disability archetype, and more—from dust and mud, a shapeless mass breathed into life as something magical.

Lehrer was born with spina bifida in the 1950s, a time when chronic disabilities often consigned children to institutions. Instead, her mother—a former medical researcher—made sure she had a formidable education, a rich life, and the medical care she needed. An artist from an early age, in college Lehrer was hooked into disability and queer politics and advocacy, and how these could converge in her own work: “One of the only epiphanies I’ve ever really experienced,” she explained. “It was like falling in love with an entire country.”

Lehrer has gone on to a rich career as a portrait artist and a teacher, exhibiting widely and holding instructor and lecturer positions across the country; she’s currently on faculty at the School of the Art Institute of Chicago, and instructor in the Medical Humanities Departments of Northwestern University. Golem Girl, her first book, is a deeply kind and exhilarating look at where experience, belief, vision, and compassion meet—and why. Bloom’s Lisa Peet had the pleasure of talking to Lehrer in November about how, exactly, that works.


Lisa Peet: First off, how are you doing during this strange time of COVID?

painting of laughing woman with one crutch, the other dropped, in white shift dress, standing among clothes on floor

Circle Stories: Tekki Lomnicki, 1999

Riva Lehrer: I am, as far as I know, still alive. When this first hit, I was terrified that I was going to start losing friends, because so many of my friends are disabled. But what ended up happening, so far, is that we all took it really seriously, and we weren’t the people out there wandering around doing risky things. Most of us deal with medicine on a regular basis, and if we didn’t believe in the reality of science, how many of us would still be here?

The hardest thing, and I just wrote an essay for the Times on this—I’m a portrait artist. For 30-something years I’ve had people in my studio, or I go to them, and they pose for me. They’re very long, intimate sessions, which mean the world to me. And I can’t do any of it. I’m trying to figure out what my life can look like. The essay is about having face hunger, about not just losing the faces of other people but losing my own. I’m 4’9,” I walk with a limp, my spine is curved, I’m unusual-looking, I’m now 62, and I’ve always used my face as a way of mitigating or managing how people react to my body. Now when I’m out in public, I don’t have a face anymore [because of having to wear a mask]—I’m just this body, and people react to me differently.

LP: How have you been dealing with the lack of in-person contact in your work? So much of it is collaborative.

RL: I’m about to start a portrait of Rosemarie Garland-Thomson, who’s one of the top people in disability studies and bioethics, and to do that I’m hiring a photographer in San Francisco who is going to do reference photos. I hate working that way—it’s both technically and emotionally unsatisfying. But I don’t know how long [the pandemic] is going to last, and it feels important to do this because I’m going to be documenting what we’re all going through, which is yearning to see people—being blocked from seeing them, trying to understand what a relationship is from a distance through technology, having our memories of the faces of our loved ones now be flat and framed in glowing squares. It feels appropriate at the moment not to give up, because this is the moment where we’re all trying to see faces.

LP: You talk in the book about your creative process—the politics and advocacy behind it, your thoughts on the bond between artist and subject, and your struggles to get it right. Does writing about making art come naturally?

RL: I’ve been teaching at the university level for more than 20 years. And when you are teaching visual art, especially once you start working with upper-level students, the thing you have to learn to do is to take information that’s completely nonverbal and verbalize it. It’s a long process of learning how to use language to talk about something that isn’t language—so that was good training.

Most of my work is narrative, especially the stories of other people. When I do artist statements and I’m putting down information about self-portraits, I almost always just say “self-portrait,” but when I’m talking about the portrait of someone else, I try and condense something about who they are. It’s a mixed experience, because part of me sometimes wants people to have no information and just encounter the image. But because I feel an obligation to my collaborators, the point is communicating their presence in the world. I’m always involved in something visual that I have to turn into a story of some kind.

LP: When did you decide to write a memoir, and why now?

RL: It started out kind of as a document. I had arranged with my family to be my executors, and I thought if anyone wants to find out about my work, there should be a coherent document that my family can use. I started writing that, putting together lecture parts and stuff that I had done. [With] the lectures, at times I would use very personal stories to make a point, and people liked them. So as I was gathering the stories of these other people, my story kept getting dragged into it.

And something came up and I thought, I should ask somebody in my family about that—I’m not sure what actually happened. I can’t remember what it was. But whatever answer it was that I got, it was something I had no idea about. So that led me to try to talk to the older members of my family before they weren’t around anymore, and that’s when I started finding out a lot of stuff about my mother. That’s what really got things going.

painting of woman from chest up with short brown hair and a rat tail over one shoulder, glasses, black tank top


I talk about being constructed by medical people and by my mother, but if I had never gone [to my first meeting of the Chicago Disabled Artists Collective], if I had resisted going and told Susan [Nussbaum] No, forget it, my life would be completely different. As I started writing, it got really clear to me that what I was trying to do was write a book about how we treat each other as embodied beings, and how we pressure and manipulate each other into conforming so that our own anxieties are set aside. That’s more important to me than the story of Riva Lehrer. I’m not that interesting. But I think that some of the experiences I’ve had can help people think about their own embodied lives, and those of people around them, and maybe have a little bit more freedom, or at the least self-knowledge.

painting of two legs from knees down, orange tube socks, thick soled black orthopedic shoes, on dirt ground surrounded by grass. This is the continuation of the upper part of painting above; there is a gap between upper and lower halves

Circle Stories: Riva Lehrer, 1998

LP: I would really like to see this book, with its wonderful vein of radical body acceptance, in the hands of teenage girls (and probably boys) everywhere. But who were the readers you were thinking of when you were writing?

RL: That was tough. If I had written this just for people with disabilities it would be a completely different book. I knew I was writing both for a general audience and for people in my community— including people in the queer community, not just the crip community. I would write it for the general reader, but then I would nod as much as I could to the people in my own community so that it wasn’t just what we call Disability 101. There’s a fair amount of 101 in there—there was no way around it, like the chapter about [disability] language. I couldn’t not put that in, partly because it was such a transformative thing for me, making the point that you get a different set of words and holy shit, your perceptions just turn inside out.

LP: You’ve been making art ever since you were young, but have you always written?

RL: No, not like this, though I’ve been writing lectures for 30 yrs. That was actually one of the hardest things about writing this, because there’s an explainy voice in my head when I sit down to write, and I didn’t want that. I wanted story voice. Finding story voice took me quite a long time.

I had a good initial editor, Goldie Goldbloom. Goldie’s fantastic, and I did a few private sessions with her and then I took a couple of group workshops, and I read a lot of memoir and memoirish stuff to think about when I cared about a story and when I didn’t. It took me 6-1/2 years, and if you saw the early versions it would make your head hurt. So I was not writing like this out of the gate.

It was interesting—I started to hear a noise when it was bad. I would hear this noise in my head when I would reread something, almost literally like a warning bell, except more like a bunch of broken bells all going off at once. Not literally—I wasn’t having audio hallucinations—but it was close to that. And I started to trust that, that when I started to reread something and I felt like that noise was coming up, it was a problem.

LP: How hard was it to pitch the book?

RL: I’d been invited to apply for a MacDowell [Colony fellowship]. I thought, I’ve never had time to write more than maybe a couple of hours a week—I wonder what it would be like to have several weeks where you’re just writing? At the same time, I was invited into a really prestigious studio program here in Chicago, and I had to make a decision. If I did the studio program it was a two-year commitment, and I knew I’d never do the book then. So I asked them if we could delay for a couple of months to let me go to MacDowell.

Toward the end [at MacDowell] I did a reading of an early version of the Winter Walk chapter, about mom’s surgery. I told people about being invited into the studio program, and I said, I need you to be really, really brutal and tell me if I’m basically a hobbyist—that’s OK, I’ll go do the studio program, this has been amazing, I loved meeting you all. I had no perspective. So I did it, and everybody was like, No no no no, you have to write this, which I had not expected. In the middle of all that Rosemarie, whose portrait I’m about to start, called me because Peter Catapano at the New York Times had been doing this series of people writing on disability for the op ed pages, and said, I want you to write an essay.

So the essay goes out. And unbeknownst to me, my best friend, Audrey Niffenegger, sent it to her agent without telling me. Her agent, out of the blue, calls me and says he really loves this, and it says at the end I’m working on a book—is that true? And I’m like, Kind of?  It took us about six weeks to put together a book proposal. I didn’t even know about book proposals. It didn’t even occur to me to look for an agent. He sent it out to his people and it started to go to auction, and then there was a pre-empt by One World. It was all a shock. When he called me, I was teaching a class at the School of the Art Institute—we were over at the museum. I pick up the phone and he tells me what they paid for the book, and I passed out in the gallery of European painting at the Art Institute of Chicago. I woke up with my largest male student holding me, going, Are you OK?

LP: Are you working on something new?

RL: I am. Fiction this time. I’ve never done fiction before, so this is even stupider. I don’t know if I’ll pull it off or not, but I’m going to try.

LP: What are you reading now?

Support Independent Bookstores - Visit IndieBound.orgRL: Some of my favorite writers are David Mitchell, who has become a friend. Richard Powers. My favorite semi-recent memoir is H Is for Hawk, by Helen Macdonald. I used to read a lot of mysteries—now most of them really bore me, except I still love Tana French. I read Heavy, by Kiese Laymon, We Cast a Shadow, by Maurice Carlos Ruffin—that was great. I just picked up the new Susanna Clarke, but I haven’t read it yet.

Support Independent Bookstores - Visit IndieBound.orgI like books that take a genre and do something fresh with it. And I like books that take me someplace I haven’t been. Chris Adrian, I love him. Hilary Mantel, Lawrence Wechsler. Philip Pullman’s actually really influential for me, mainly because of my obsession with symbol and metaphor. One of the things I think about how that stuff works—I feel like you have to earn your symbolic structure and your metaphoric language. Pullman is somebody who understands how to earn your metaphors.

LP: In the book, you’ve done a great job communicating about where your art intersects with your disability and queer activism and your love of storytelling. I like hearing how that fluidity has entered into your writing—can you talk a bit about how your sense of narrative informs your art practice?

painting of naked woman holding BDSM gear with a chain with nipple clamps dangling around her neck, she has shoulder length blonde hair and a large scar bisecting her stomach. She stands against a peeling white wall with shards of colored glass on wood floor

Carrie Sandahl, 2017

RL: One of the last installations I did, the painting of Carrie Sandahl in BDSM gear, I did at a museum where on one wall it was just [the portrait of] Carrie with two speakers. Her partner, who’s now her husband, came and taped every single one of our portrait sessions. Sometimes he was there and sometimes he just left the equipment. So we had hour after hour of our conversations, and the speakers were playing snippets. And there was a whole wall of documents that she and I had done separately, talking about the experience of spending an entire summer with each other, and about our experiences of embodiment, or pain, or sex.

And then in the far corner I took the chair and the heating pad and the footstool and the little rolling table, the physical setup that Carrie had sat on during our sessions. Our disabilities are not the same but they’re similar, so I was taking care of her physical needs very much in the way that I take care of my own. I wanted the presence of that comfort corner, the proof of the care I was taking of her, and the sense of intimacy—just this little chair with a bunch of pillows on it. It felt very homey. And for opening night, I had plates of the cookies that she liked to eat, and mugs of the tea that she liked. I wanted to pull our relationship into an equal place, along with the actual result in painting, so that anybody in there would be thinking about what it was like—not just to sit for me but to have that be such a long period of deep exchange. The person isn’t just sitting there like a houseplant. They’re talking.

What I value are the connections I make with the people. That’s the point of what I’m doing. What drives me crazy is that when you see a portrait in a museum, you just see this picture of a person and the artist seems to be gone, and the relationship certainly doesn’t seem to be there. For me, it’s the relationship that’s changed my life. It’s the exchanges I’ve had with people. You go with where you find your love.

Bloom Post End

Lisa Peet is the News Editor at Library Journal and a card-carrying bloomer herself.

All paintings ©Riva Lehrer.
Photo of Carrie Sandahl painting by Tom Van Eynde.
Photo of Riva Lehrer by Nathan Keay.

Click here to read Lisa Peet’s previous features

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