Students in the Medical Humanities elective at the NYU Grossman School of Medicine had the opportunity to interview Jim LeBrecht, co-director of the Oscar nominated documentary Crip Camp. The film tells the story of a group of campers with disabilities who met as teenagers at a summer camp in upstate New York in the 1970s and later helped spark the disability rights movement.
The title of the course is “Physicians as Partners in Social Change.” Lucy Bruell, MS, and Steven Field, MD, are the instructors.
The following interview has been lightly edited.
What inspired you to tell the story? Why did you make the film?
I had a sense that there was a story here that I didn’t want to see lost to time. And initially, that story was this exodus of people from the New York City area out to Berkeley, California, a kind of migration. Attached to that story was Camp Jened and what had gone on there.
As a sound mixer for documentary films, I’ve probably mixed 200 In my career, probably seen another 300 or 400 over time. I know the power of documentary film. I really have this sense that people with disabilities are a mystery to a lot of people. What we don’t understand, we can be scared of. And although there have been some other really good documentaries around the experiences of people with disabilities, those that are told from the perspective of people with disabilities themselves have been few and far between. One could look at Jennifer Brea’s Unrest and Jason Silva ‘s When I Walk as important films by disabled filmmakers that came out before Crip Camp.
The origin story for the film is that I have known co- director, co- producer, co- writer, Nicole Newnham, for well over 20 years now. But about six years ago, I took her out to lunch, because she was wrapping up her last film, and I think she’s a great filmmaker. She has this ability to enter communities in an insightful and remarkable way. I feel like after you’ve watched one of her films, like Sentenced Home, or The Revolutionary Optimists, you felt like you’ve been with these people. I said, “Let’s go out to lunch.“ and I pitched her a bunch of different ideas. At the end of the lunch, I said I’d always wished there might be a documentary about my summer camp. I believe there was a connection there to the disability rights movement. And it was rather a unique, unique place–very early 1970s, a summer camp for young adults with disabilities, run by hippies. There was a great deal of joy there. It was really a remarkable place. And that’s where I became politicized. And long story short, she looked into it. I had sent her a link to a Facebook page with a bunch of photos, and she was really hooked on the idea. She said, “I think we should make this film together,” which was a huge honor.
Did the idea for the film come out of finding of the archival footage, or did the idea come first?
We didn’t know the footage existed. I remembered a group of hippie videographers coming to camp one summer with relatively new black and white, portable, luggable, video gear, the Sony Portapack. In fact, I remember them giving me the camera one day, and we did a little tour of the camp. I said “Nicole, the only thing I remember is, I think People was the name of the group.” And she set out to try to figure this out, literally spent about three months almost every night after work, trying to figure this out. And eventually, she came across a recently digitized, videographer magazine or paper from the 1970s. It had an ad in the back for a tape by People’s Video Theatre that said, “Crabs Outbreak at Camp Jened for the Handicapped. $6.95, People’s Video Theatre.” And with that information, she was off and running. She, through talking to various and sundry people, wound up hearing about Howard Gutstadt, one of the people you see in the black and white footage. He lives in San Francisco. She traced him to an anarchist bookstore. They wouldn’t give her his information, but she left a note. Without this footage, we were considering, maybe we should do recreations. Maybe we should find a camp and hire actors with disabilities, that would be a really great thing, and recreate a lot of the stories. And lo and behold, a couple of weeks later, after she had left the note, we heard from Howard. And, indeed, they still had their tapes, and they were getting them digitized. And there were five and a half hours of footage.
Nicole and I went over to San Francisco from Oakland and met Howard at a café, and it was pretty emotional. I mean, I was the guy he had given the camera to 45 years ago. We helped pay to get the rest of their footage digitized, because they didn’t have the money to get all of it digitized. And we worked out a licensing deal. A few months later, we get this hard drive,and it’s just remarkable. There are eleven half- hour videos of the footage they shot at Camp Jened, and it was a little bit ragged in spots, but totally usable. For me, especially, seeing people I hadn’t seen in 45 years and friends that had passed away, it was a really remarkable experience. What was I going to see next? And there was some incredible footage there. Probably the most remarkable was that roundtable discussion, which we called “message to parents,” and Nancy Rosenbloom talking about how she never had any privacy. And then, Steve Hoffman saying “I think I understand what she said.” It was just mind blowing.
What audiences did you hope to reach? What has been the reception to date?
Nicole and I really set out to try to reframe what it meant to be disabled, both for people with disabilities and those without. so I think it was a rather wide audience…we wanted it to be something that the disabled community, hopefully would embrace, which they really have. But, the hope was just, let’s start conversations, let’s try to get people to start thinking about the issues around disabilities as civil rights issues, and not medical issues. And to really have an inside view of this history, who we are. I think that we’ve really done a great deal to raise awareness and make change. We’re seeing that a number of people saw Crip Camp and were affected by it and changed their attitudes.
This has had an effect on Hollywood. We’re hearing about this Crip Camp effect, which, in essence, is people are more willing to hear pitches for documentaries and narratives,and that it doesn’t have to be the same old tropes– gee, I just became disabled, I want to die, or the heroic person overcomes their disability– but stories about people who have disabilities, and it’s not inspiration porn. We were joking that if somebody thought they wanted to have a beer with me, we would have accomplished something. And certainly, I know that was the case for people like Neil and Denise Jacobson. We premiered at Sundance in 2020 in two sold out movie theaters, so easily 3000 people had seen the film. And the following day, Neil and Denise were going down Main Street to go get a mocha, and people were stopping them on the street, running across the street, wanting to have selfies, and had conversations. It said- Wow, we are people that folks tend to shy away from, and here we are being approached with love and respect.
What has been the role of the medical community in the disability rights movement?
This is a tough question. If you look at Willowbrook, those doctors that were there finally felt they had no recourse but to give the keys to Geraldo Rivera, and let him get in and expose what’s going on. And the medical profession, I think, has a fair distance to go still in regard to their belief of what quality of life really constitutes. We certainly saw this, especially in the early days of the COVID pandemic, in which choices were being made about triage. And there were people with disabilities that were being denied care. Because as I understand it, doctors were saying, well, their quality of life was not nearly as good as somebody else without a disability. And that really, really discounted what these people meant to their family and friends. It assumed that they weren’t capable of really participating or giving a lot back, or that they weren’t having lives that were meaningful and enjoyable to them, which was very untrue.
I think the fact that medical students and the medical community are doing things like watching Crip Camp, and really engaging with folks with disabilities in a new way, is encouraging. I can’t walk, but that doesn’t mean that there is necessarily something wrong with me. The point is that I think a lot can be had by really good dialogue between the medical community and people with disabilities, to learn to respect people as being their own owner’s manual like I am. And I think that we’ve heard of other marginalized communities and how tough it is dealing with the medical community if you are a person of color, if you’re LGBTQ, if you’re a woman. So imagine being a disabled woman, who is someone of color who was part of the LGBT community. There are multiple marginalizations going on there. And you don’t want to be thought less of, or have it assumed that you aren’t really a great collaborator with your doctor to figure out the best course of treatment for you given any circumstance. I’ve got a urostomy for urine, and I know a great deal after having changed my appliance for 50 years, what to do in case there is irritation, or if I’m getting a skin infection. Wouldn’t it be great if we all just listen to each other without a lot of preconceived notions?
Do you feel that progress has been made in terms of the medical community’s response to these issues?
I would say that one thing that I want to make sure the medical community is aware of is that there’s an important distinction between disability rights and disability justice. And Disability Justice was a way of advocating and thinking about disability that really came out of a number of people who have been marginalized–. people of color, indigenous folks, LGBTQ– because they felt like the traditional organizations of disability rights were not really understanding their needs or were not really including them in policies and in running the organizations or being on the Boards. So, I think there are important precepts there. And if people want to learn more about it, there’s a group called Sins Invalid. They wrote a really great primer on disability justice.
Is the Center for Independent Living still active?
While the Center for Independent Living at Berkeley is still active, to me, it’s a very different organization than you see in the footage. I don’t see as much in the way of many services that CIL had to provide in the early days. [There’s] no wheelchair repair shop, but then insurance or Medicare tends to pay for wheelchair repairs and such, and there are vendors for that. It used to be a real community center; it’s just not that anymore. I would love nothing better to see it evolve back into being more of a real focal point for the still rather large disabled community in Berkeley and in the San Francisco Bay area.
Since the passage of Americans with Disbabilities Act (ADA), are there outstanding issues that you feel need to be addressed?
The ADA specifically did not include air travel. And I can’t use my wheelchair on an airplane. I can’t use a bathroom on an airplane. And because I can’t walk, I have to be strapped into an aisle chair and taken out of my seat and lifted out of the aisle chair, or I can do it on my own most of the time. It is precarious. It’s demeaning. And right now, actually, I can’t use an aisle chair. The way my body is shaped I have to sit sideways and put pressure on my knee, so I’ve got a pressure sore on my knee. I cannot travel by air right now. And it’s really horrible. I have to say, there’s really no excuse beyond people not willing to be concerned about the cost or losing seats on airplanes. I’ve got to bring a bottle with me in my knapsack and flying cross country, I’ve got to empty my bag into this bottle. The other issue with airlines is wheelchairs and mobility devices get broken all the time, maybe 20 to 30 wheelchairs and the like every day. And the airline industry really hasn’t done anything to improve this. If we were breaking 20 ankles a day, for non- disabled air travelers, by virtue of just flying or mismanagement, there wouldn’t be a problem here.
There was a story recently of a woman whose chair was destroyed, and the airline really dragged their feet. She was in an ill-fitting wheelchair for a while, got a pressure sore and eventually died from it because they didn’t want to spend the money on replacing her wheelchair. And by the time they came around to do it, it was too late.
I think that the quality of care and support disabled individuals get varies wildly from state to state. You can get good support for getting up in the morning, having an attendant help in New York, and you can’t get that in Texas. Just the enforcement of the ADA; who else has to sue for their civil rights like this? And anyway, so many businesses try to not really comply with the law.
Those are just some of the issues. We are so underemployed, and we’re a community that wants to pay taxes. I would say that a lot of us have been fighting to make sure that disability is part of Diversity, Equity and Inclusion (DEI) training and add the A for access. It’s no longer, oh, we forgot. It’s no longer valid to say that we just don’t do that. To not have disability be a part of your DEI at this point is appalling.
How did the Obamas come to executive produce the documentary? And what stage of the production did they become involved?
Nicole and I had been at this for a while, probably a year and a half, two years, maybe a little bit longer. We had a wonderful executive producer on our film, who really dug in and did a lot of good work– Howard Gertler–and Howard had heard about the Obamas starting their Higher Ground production company in association with Netflix. And very early on, Howard met Priya Swaminathan, who is the one of the principals of that company, and he said, you need to see this trailer for this film. And she said, look, we don’t have offices yet. And then a month or two later, we had a sales agent, and he bumped into Priya at Toronto International Film Festival, and she said, okay, okay, I’ll take a look at the trailer. She called Nicole and I couple of weeks later and said, “I don’t know what you guys have done, but I can’t stop watching this trailer.” And she came up to Berkeley, spending the day with Nicole and I and our editor Andy Gersh and talking about what we had to work with. We discussed collaborating because she really wanted Higher Ground and herself to roll up their sleeves and do the same with Netflix. Obviously, they said yes. And really, we were the first project that they got involved with. American Factory was released before our film, but that was a film they purchased at Sundance. So we were right there at the beginning for Higher Ground.
Who came up with the title Crip Camp?
Well, if you asked Denise Jacobsen she’s going to tell you that she did, I don’t quite remember it that way. I’ve been friends with Corbett O’Toole, who’s in the film, for decades. And I remember one of our earlier conversations, she said, “Hey, did you go to Crip Camp?” And I kind of went oh, did you mean did I go to a summer camp for people with disabilities? And so that’s really the first time I heard it. I really quite liked that. And in reality, why do we use that term or that word? We wanted to reclaim the word crippled. When folks started using the word crip, –literature is crip lit, and the community is crip fam– it was a way of saying, look, I’m political, I’m an activist. I’m taking this word, and it indicates that it’s where I’m coming from, and I’m active. For me, disability is my culture; I identify as disabled. I share a common set of experiences with other people with disabilities who have been othered and discounted. I feel like there is a real cultural community there. And, people on the outside might think, what do you mean, you’re proud to be disabled? What do you mean, there’s a Disability Pride Parade? I mean, isn’t it the most horrible thing that could happen? Or aren’t you ashamed? And it’s like, no. There’s some badass folks in my community, and you see that in Crip Camp with Judy Heumann and the people that took over that federal office, that these are people that are full of joy, incredibly savvy, and absolutely, rock solidly committed, because it’s literally so often these things that we advocate for are life or death situations.
Thank you, Jim, for making Crip Camp and for sharing your insights with us.
Crip Camp can be viewed on Netflix. Please read Carol Schilling’s annotation in the LitMed Database.