Artist Riva Lehrer paints portraits of people with disabilities — minus the mock heroics, the ‘freak show’ or the toxic staring

The first time Riva Lehrer painted a portrait of someone with a disability — someone other than herself, she has spina bifida — she painted a Chicago man who had been shot in the head. He was riding his bike on Ashland Avenue when a car pulled up alongside him and opened fire. No one was caught. No motive was determined. He lived but lost an eye, and was left with one socket considerably lower than the other. That portrait, as she describes the painting now, “was neither sentimental nor grotesque, not a charity poster, freak-show banner, monster-movie still nor medical photograph.” The man in the image simply exists, tilted awkwardly, standing in a stairwell, wearing a stripped Oxford.

She followed it with a portrait of William Shannon, a former Cirque du Soleil choreographer who spent a lifetime on crutches because of a disability that kept him from placing weight on his hips. In her image, he’s twisted on crutches, but also graceful and handsome. About 25 years ago, when Lehrer began painting these portraits, the work was regarded by some as niche, therapeutic at best, exploitive at worst. She had a lot of requests to show her work in hospitals and rehabilitation institutes. She often said no. Even now, when I was talking to people about Lehrer, some of those close to her described the portraits as niche.

Groundbreaking, yet niche. Remarkable portraiture, yet sort of niche.

She cringes at that word — niche.

At 62, Lehrer is an accomplished painter, with scores of shows and major gallery representation. She teaches art at the School of the Art Institute of Chicago and Northwestern University. She is a leading activist of Disability Culture. (A pair of her corrective shoes are included in the Smithsonian, as an artifact from Disability Culture.) Her first book, “Golem Girl,” a memoir, was released late last fall to excellent reviews; indeed, next month, it’ll be a finalist for a National Book Critics Circle Award.

“What Riva has been doing for many years, in many ways, is having a conversation with some of our earliest images of disability,” said Rosemarie Harland-Thomson, a key voice in disability justice, as well as co-director of the Disability Studies Initiative at Emory University in Georgia. “She’s done nothing less than retell the story of disability.”

Still, Lehrer assumed that by now, decades after she started, there would be more images of disability in galleries and museums, and no. She’s usually the exception, not the rule.

Though disability remains her subject, she describes many of those she paints now, to use her word, as sharing some imposed stigma — each, in a way, occupies a social niche themselves. Not everyone she paints is disabled. One of her breakthroughs — a portrait of cartoonist Alison Bechdel, a lesbian and author of the memoir “Fun Home,” basis of the Tony Award-winning musical — is in the National Portrait Gallery. But the process strained their friendship. It happens occasionally with her work. She paints those she finds beautiful, but she does not flatter. When that man who was shot saw his portrait, he asked her: “Do I really look like that?”

When Lehrer started these portraits in the mid-1990s, she decided to paint her subjects only after long conversations with them — about how they saw themselves, and about how she saw them. Some of the conversations lasted weeks, months. After painting Bechdel — and incorporating Bechdel’s own imagery into her final work — Lehrer began offering more of herself to her subjects. Whenever they sat in her Edgewater studio, after two hours of painting, Lehrer would leave for an hour. Her subjects could then eat her food, sleep in her bed, use her computer, steal or even alter the work-in-progress.

Lehrer promised not to ask questions.

Alice Sheppard, a disabled choreographer who has been innovative for her use of wheelchairs in dance performances, remembers feeling “unskilled” as a painter, so when Lehrer left her alone, “it became a bit terrifying.” Still, Sheppard set to work immediately tweaking Lehrer’s unfinished canvas. “We developed a degree of intimacy but now I was kind of marking up her work a lot. I drew all these characters in wheelchairs, and then a cascading curtain of feet, so when Riva walked back in, she looked shocked. I don’t think anyone had taken her up on her offer as extensively as I had. So it took her a long time to integrate what I had done with the final (portrait), but Riva figured it out.”

Lehrer fell in love with portraiture as a student at the University of Cincinnati, then at SAIC. She came to recognize “a mutual transformation” at work in every portrait. “When I am in a museum and read the tags next to a work, I wonder about the relationship between artist and subject, and usually there is little of that history explained — what it was like between them, what it was like to sit for them — and based on my experience, the real product of a portrait is always that relationship.”

That’s true of even her self-portraits.

Though she would come to paint herself eventually as she looks — short, pensive and slightly hunched by spina bifida, her spine more prominent, her expression more pained — early in her career she hired “pretty, normal women” to stand in for her own “bodily discomfort.” She assumed people would reject the image if she used her body as it actually appeared. “When I paint disability now, I am feeling pleasure,” she said. “I am not doing it as a lesson. I am noticing how nature comes up with these different ways of making a person, which is remarkable. Some people say, ‘I don’t see you as disabled,’ and I think ‘WHAT?!’ In their minds, being disabled means being incapable of something, and sure, my life has been more affected by disability than anything else — more than queerness, more than gender, certainly more than religion. But then, everything intersects.”

When Lehrer was born, it was not uncommon to regard children with spina bifida as wait-and-sees — if they survived for a couple of years, it might be worth the effort of surgeries. Spina bifida is created during fetal development, when gaps form in that tube that later becomes the spinal column, leaving holes. That said, it tends to affect the children who develop it differently. Sometimes a spinal cord gets pushed outward creating a bulge. Sometimes a person can’t walk from birth. Many develop fluid on the brain. That kind of vulnerability is evident in many of her portraits, though alongside an appreciation for the body.

Her close friend Audrey Niffenegger, author of the bestseller “The Time Traveler’s Wife,” recalled a trip they took several years ago. They were visiting the Mutter Museum in Philadelphia, famed for its blunt exhibitions of anatomy and medicine. She said when they found themselves before a row of jars containing fetuses with spina bifida, Lehrer “got so quiet, in that way people do when realize something and get introspective. She’s never wanted to be defined by (spina bifida) but you could sense a feeling of how things might have gone. If she were born a little earlier, if she hadn’t had her mother, the right doctor... Riva is probably both the luckiest and the unluckiest person I know, all at once.”

Lehrer likes to say she grew up in hospitals. But that’s not quite true. She grew up in Cincinnati and moved to Chicago to follow a boyfriend and never left. That said, she did have dozens of surgeries before she was out of her teens. She still ends up in the hospital with some regularity. Her friend Lawrence Weschler, the author and artistic director emeritus of the Chicago Humanities Festival, said she once told him that if she alerted friends to every time she was in the hospital, “nobody would get anything done. And yet, the most self-pity I have ever seen Riva show was that ‘Golem Girl’ came out in the middle of a pandemic. And she’s right, too — if there hadn’t been a pandemic, we’d be seeing a whole (media spectacle) around her, a ’60 Minutes’ profile, the whole deal.”

Maybe that’s for the best.

Lehrer hates when interviewers dwell on her appearance, and they often do, on her spina bifida, the number of surgeries. “Toxic staring,” she calls it. She presumes they see her in terms of the medical and clinical. When she moves around Chicago, she gets enough of that. She’s heard it all: Are you a dwarf? Why do you walk like that? What’s wrong with you? I’ll pray for you. You’re so brave. She said the first time she did a TV interview, the morning show reporter asked, first question, “Exactly how much pain are you in right now?” Lehrer is used to feeling reduced.

“The typical disability narrative — which is also common in narratives around queerness and Blackness, though that’s been changing faster than disability — remains: You have a painful existence and that pain is the definition of your reality. Everything else is subsidiary. And the truth is, I may have started with a sense of otherness but that otherness also let me see details most people would miss, and it’s been wonderful. The story I sometimes get applied is, ‘Oh, look at this person who all of these things happened to, yet she makes paintings despite it all.’ There is no despite. We all make meaning out of our experiences. Some people say to me, ‘Well, I shouldn’t complain to you. You handle so much more.’ I hate it. It’s often not true. Everyone’s pain is their own. When you talk about a disabled person as just inspiration, a wall goes up.”

She gets the need for drama.

She just wants the context, too.

After all, speaking of drama, the title of her memoir, “Golem Girl,” is a nod to the European folk legend about a monster assembled from mud. “I’ve been protean since the day I was born,” she writes. Many of the chapter titles — “Suspiria,” “Freaks,” “House of Wax” — are horror classics. Jim Ferris, who teaches Lehrer’s work as chairman of the Disability Studies program at the University of Toledo, said he recognizes a need in her story “to claim identity as opposed to have one attributed.” They met decades ago at a conference when both realized they wore unusually large boots, hers for stability, his to equalize the difference in the length of his legs. “Riva and I come from a time, the early ’60s, when people with disability were not expected to be out, obvious and part of the world. And so you get excessively praised for the things everyone does. You become somewhat apologetic for violating the norms of what other people expect from bodies.”

Lehrer’s mother pushed relentlessly with hospitals and doctors, making the case for including her daughter in new treatments. Her form of spina bifida — lipomyelomeningocele — puts a fatty tumor on the spinal cord, threatening to tug the brain stem out of place. Lehrer went to a school for children with disabilities. She often felt cloistered, she said. In the book, she describes one of her teacher watching the students in her school “with a half-smile that had something of the zookeeper in it.” Disability was entirely a clinical issue then, not a cultural or a political one.

Diane Yasgur, a first cousin of Lehrer, said Riva was such a lively kid “that I probably didn’t even realize how often she didn’t feel well.” She describes Lehrer as just a part of the neighborhood gang. “I picture her laughing, and I doubt any of the other kids saw her as disabled. In fact, I didn’t really realize just how much Riva identified as disabled until I read her memoir.”

Actually, Lehrer herself didn’t realize how much she identified as disabled until moving to Chicago. “I would hide my body,” she says. “I could fit a marching band in my clothes. It was a camouflage. I didn’t know anybody in Chicago like me, for a long time. Denial gets strenuous, and every now and then, you catch glimpses of yourself.” She writes in the book about attending a disability picnic in Rockford and scoffing that she was nothing like these people — she was queer, she was cool, she wore leopard-print tunics.

This was the mid-’90s.

By the time she found herself to the backroom of the Victory Gardens Theater for a meeting of the Chicago Disabled Artists Collective, she was exhausted from the years of trying to fit in. They used words she had never heard, like ableism. They claimed “Disabled” (always capitalized when referring to identity) as part of political language. They bonded over a lack of accessibility in arts institutions — that attending art school for Lehrer meant having to stand for six-hour painting classes. That so many of her new friends would be artists in Chicago began to seem preordained: “Imagination rules our lives. Even after we’ve reinvented how to shop, how to get to our jobs, how to find a job, our bodies decide what you could do on Monday is no longer doable on Wednesday.” When she began painting portraits, her first subjects were the members.

Lehrer moved through her snowy Edgewater neighborhood the other day without pause or slip, balanced on a cane, though otherwise showing no strain. When there’s no snow, she doesn’t use the cane. Her hair is red and silver, and her soles are so thick, it would be easy to assume she’s just another cool aunt. Her boots — which help because her hips are not aligned — read as Doc Martens with Gene Simmons heels. In rare instances when she teeters, strangers are fast with the inevitable wisecrack: “Maybe don’t wear shoes that tall if you can’t walk in them.”

Her apartment is classic artist eclectic — a lampshade covered in decorative ravens, a John Denver painting in the kitchen, a human skeleton (not real) in the living room. Her studio, though, has the rigidly organized feel of an arts supply storage room. She said she’s more and more enticed by writing lately, partly because “there’s less cleanup afterwards.” On her easel, one of three portraits she’s making of Sharrona Pearl, an associate professor of medical ethics at Drexel University and theorist of the body and face. Because of the pandemic, Lehrer is asking her subjects to sit for her via Zoom, so those portraits of Pearl around her studio include her computer’s screen, the browser borders, the tabs, etc. She hates working like this. Because of her spina bifida, she’s uncertain, vaccine or not, when she’ll have live subjects again.

On the plus side, sales of her work are up.

Brian Gillham, director of Chicago’s Zolla/Lieberman Gallery, which represents Lehrer, finds her art “in many ways quite classic, beautifully crafted portraiture, and even if the subjects were more standard, we would have sought her out.” He’s not alone. Dorothy Moss, curator of painting and sculpture at the National Portrait Gallery, said Lehrer “has become important in advising us on artists who represent disability. There’s a lot of work like this being made now but frankly, institutions need to do better (about including it). I see things are moving forward, but it’s happening because of someone like Riva who’s behind pushing that change.” (She’s also been advising the Ford Foundation and National Endowment of the Arts on Disability Culture.)

Lehrer’s portraits often feel akin to paintings by Black artists such as Chicago’s Kerry James Marshall and Barack Obama presidential portraitist Kehinde Wiley, who place their Black figures inside an art history framework more typically white, male and European. “Using portraits to do it makes so much sense,” said choreographer Alice Sheppard, “because especially in the world of disabled people, it’s about representation, and Riva’s work is not abstract or conceptual.” The disability is there, as is the person, one not outweighing the other. “I see Riva in conversation with classic European art,” said Emory’s Garland-Thomson. “Her portrait of (Chicago playwright) Susan Nussbaum — I don’t know if Riva intended it, but I lined it up alongside Picasso’s portrait of Gertrude Stein, and they’re a lot alike, except one is Stein, and one is a Nussbaum in a wheelchair.” The point is subtle, she said, “but that’s a painting doing work in the world.”

For her part, Lehrer says the paintings are activism, though not necessarily political activism.

“It’s about changing how people who are different are seen. But it’s always about the context of the images.” If the image disrupts your understanding of the person being painted, then it may be activism. This often requires a deliberate and matter-of-fact approach. At Northwestern she teaches first- and second-year medical students a course named “Drawing in a Jar.” The jars contain fetuses, the same kind that left her speechless and contemplative that day in Philadelphia years ago. Indeed, one or two jars always contains a fetus that had spina bifida.

She knows what the narrative around these jars would be if she wasn’t in the room.

“Someone would show these (jars) as mistakes — ‘We’re showing you because medicine is trying to fix this. It’s shocking, it shouldn’t happen and it probably won’t in the future.’ What gets forgotten is that people do live like this. So I tell my students about what it means to live with this, and I talk about the wonder of what the are looking at.

“In these jars, they see how a body is put together, relationships to other vertebrates, antecedents. What they should not see is a disaster but a symphony. All these bodies are notes in an orchestra, each one a different sound. We don’t shove them into the land of the tragic mistakes. And we won’t hide them away. We live, like everyone, in parallel.”

cborrelli@chicagotribune.com

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