SCOTT SIMON, HOST:

Riva Lehrer has been exceptional all her life. She was born with spina bifida, had numerous surgeries, scores of surgeries just to live. She has become an artist, a teacher and an artistic voice, painting portraits of people, flesh and blood people, who like her have challenged whatever we call normalcy to find expression and joy. She's written a memoir, "Golem Girl." Riva Lehrer joins us from the north side of Chicago. Thank you so much for being with us.

RIVA LEHRER: Thank you so much.

SIMON: And we need to understand that term, golem.

LEHRER: There is a very old legend in Jewish folklore about a rabbi who creates a monster out of mud from a river in Prague to protect the Jews who are about to be attacked by a pogrom of peasantry. And so he builds this monster, and it rounds up the miscreants, puts them in jail. In the process, the monster gets bigger and bigger and begins to have ideas of its own. And as soon as it does, the rabbi destroys it, and it falls back into a heap of mud. And so I thought about my life in those terms, in that I was built by others in a variety of senses, but in the immediate medical sense by many, many doctors.

SIMON: Yes. And, I mean - and although you - you know, you certainly speak with respect of the remarkable medical work at Cincinnati Children's Hospital, there was a line that just punched me in the heart, when you say children like me were saved without purpose, at least not any purpose we could call our own.

LEHRER: Well, most people at the time with my kind of impairment or any significant impairment were generally institutionalized. It was imagined that we would never get married, never have families. So we were cloistered. We were out of sight. And so if we were saved, it was because our parents loved us for the most part and because science also wanted to see what it could do. But I learned very much when I was a kid that even though I existed and my friends existed, we weren't given visions very much at all about who we might be.

SIMON: A lot of people may think they know which spinal bifida is. Tell us what it's like to live with, if you could, please.

LEHRER: It affects people in a lot of different ways. It's what happens when there's a gap in the tube that becomes the spine during fetal development. So you might have mobility issues. You might have issues with internal organs. The thing I would say about it right now is because the surgery that allowed me to live had just been invented very shortly before I was born, people like me, we don't know how to age. We don't know what it means to get old. Our doctors are learning on the job about how to treat people who have perhaps lived this long.

SIMON: I sure want to talk about your work, which I find extraordinary.

LEHRER: Thank you.

SIMON: What do you think made you a painter?

LEHRER: My mother was an artist. But when I was a kid and growing up in the hospital, you don't have the rest of the world. You don't have parklands and animals and sidewalks and weather and going anywhere.

SIMON: Yeah.

LEHRER: What you have are people. The landscape, the animals, they're all people. And so I think I fell in love with faces. So when I eventually went to art school, there just wasn't any question that the body and the face was just going to be where my heart would go.

SIMON: And at the heart of your work, I think you'd agree today, are the extraordinary portraits that are called circle stories. They're collaborative.

LEHRER: Yes. So I'll meet someone - and it's not all people with disabilities. What I really am interested in is stigma. And it can be queerness. It can be impairment. It can be a whole range of things. So I'll fall in love with what they do and study their work, watch their performances, invite them to sit for me. And because people who are stigmatized have been presented with terrible images through the history of the media, making them hate themselves, want to be other, the main thing is if they're going to sit for me, I want to give them control over what happens.

So it's a long process. It's interview-based. You know, it's really - once you know how hard it is to be looked at, if I'm going to ask someone, can I look at you, I want that to be something that makes their sense of self better rather than it being another terrible, cringeworthy experience of being looked at.

SIMON: Yeah. Well, for example, could you tell us about a man you painted - it sounds like he has - like, he's very funny, Jeff Carpenter?

LEHRER: Jeff was a stand-up comedian. Unfortunately, I've lost contact with him. But he had had a dreadful thing happen. He was riding his bike down Ashland Avenue, and if I remember the story correctly, he was at a stoplight, and a car pulled up next to him and totally randomly shot him in the head.

SIMON: Yeah.

LEHRER: He ended up going to Cook County Hospital, where they did not do a wonderful job. He lost an eye and had some brain impairment. But when I met him, he was doing really darkly funny stand-up about trying to start to date again.

SIMON: It made me laugh, what you quoted. But oh, my word, it's tough stuff.

LEHRER: Yeah. He was saying that he was trying to start to date again, and, you know, they'd be in the middle of some lovely rendezvous, and his artificial eye would fall out into the soup. And that would be the end of the date (laughter). And so I loved the fact that he was so brave and open about this is what I'm going through. So I did a portrait of him as if he were struggling with invisible angels. But that was the first of now 22 years, I think, of doing portraits of people. And I cannot tell you what an incredible experience the studio is. You sit there and - well, you know. You know. You sit there, and you exchange stories. And...

SIMON: Yeah.

LEHRER: ...People tell you things that light you up.

SIMON: Yup.

LEHRER: But I also get to look at them, and I get to draw or paint them and think about how the story is weaving through their skin. There's nothing like it.

SIMON: Yeah. You had this this book done when the pandemic hit, I gather.

LEHRER: Yeah. I can't have anyone in my studio now. I'm going through a lot of really complicated machinations trying to figure out how to be a portrait artist in a pandemic where I can't get near anyone.

SIMON: Mmm hmm.

LEHRER: I'm working over Zoom.

SIMON: Yeah.

LEHRER: I'm working with photographers in other cities. But, oh, this hurts, Scott. It hurts so much. Mostly, it's like being in a world of mummies. We're all wrapped up and mysterious. We're just walking mysteries.

SIMON: Oh, my gosh. I hope you'll figure out a way to paint many more portraits.

LEHRER: I hope that's where it goes.

SIMON: Riva Lehrer - her memoir, "Golem Girl" - thank you so much for being with us.

LEHRER: Thank you so much. Transcript provided by NPR, Copyright NPR.