My name is Faye Ginsburg and I am the co-director at the Center of Disability Studies at New York University, NYU, and I am the David B. Kriser Professor for Anthropology and I run the Centre for Media, Culture & History.
I have been doing a lot of work developing disability [activism] on the campus. The provost has made a commitment to the diversity. I had a Twitter campaign; I discovered how bad our infrastructure was so I would take pictures of the outside sign of the bathroom with the wheelchair accessible sign and then inside, you could see this is not an accessible toilet. I had the campaign going; every Monday I would send it to the Provost and the Dean and then after a couple of weeks, the Provost finally said, ok. We had been running an infrastructure committee at NYU. Then we realized we had some funding 10 years ago and we were about to run out and they told us to write a proposal and we did and so this is the 2nd year of funding so far that we’ve had for the Centre of Disability Studies: We started a minor 3 years ago. We have a fantastic group of undergraduates, that started something called the Disability Students Union; we support them. We run a monthly seminar, we do public events like Disability in the Arts. We have, as kind of resident fellows, Simi Linton and Kevin Gotkin, who are doing the Disability Arts in New York City, the really incredible wheelchair dancer and choreographer Alice Sheppard, we have just been through the paperwork to make her a fellow for this new project she is working on. We work across four schools —Arts & Science where I am located, Steinhardt where Media, Culture & Communication is located, Tisch School of the Arts which has been really robust, especially in the film school, The NYU Tandon School of Engineering, and their really great group there, the Ability Project, they design stuff and hack with occupational therapists and budding engineers and clients from United cerebral palsy.
In North America, most disability studies have been lodged or started in the humanities. We actually have almost nobody in the humanities. We are very heavily media, ethnography, film production and analysis, Mara [Mills] does histories of media technologies for the deaf and blind. I am doing ethnographic work on disability worlds, in NYC, looking at familial imaginations and arts and working with another person who is looking at science labs that study brains. We do all kinds of stuff. Hardly anyone doing the classics like literature or history which is interesting.
I came here because I am super interested in disability arts and it looked like a great line up. And I also have spent since 1988 done tons and tons of work with Indigenous media artists in particular. I am very close with Arseli Dokumaci. I ran a big international conference in March and she came to it. It was very intense, there were 18 scholars for a week.
I got into this, as most people do, either through their own embodied, mind-body issues or through those of someone they love. So, I have a daughter with a very rare condition, so that’s what got me involved, first as an advocate then as a scholar and researcher and advocate in other ways. One of the things that becomes very obvious to people once they enter into this kind of universe is that there is a huge amount of creativity involved in being disabled. I actually include myself as that, because I feel that I am so much a part of my daughter’s circumstances. I have always worked with activists through all my other research.
I was involved in a group in NYC, which started with film festival called ReelAbilities, which was a natural extension of the work I had been doing with Indigenous filmmakers. That has been very robust. This will be our 11th year. It’s an interesting model. We have a primary site and then we invite any group in the 5-borough area to be an off-site location for screening films that we have selected for the festival.
I think that, what, film, performance, dance, all those things can do is really invite people in to the experience of disability, or what some people call disability expertise and difference. The creativity involved in that is, really, not just unthreatening, but allows people to have a sense of the difference—if they haven’t encountered that themselves—and if they are part of the disability world to feel very addressed and excited about the difference that disability can make and living life with a difference.
I like the way the conference from everyday life with the kind of work Arseli Dokumaci work has been doing—the creativity of how do you open a jar when you have rheumatoid arthritis and to some of the more overt art practices like the Deaf musicians and blind artists and so forth that we have been encountering here.
To be a more accessible future, is to continue the process, I see, even as a teacher. So, when I grew up it was before the ADA (The Americans with Disabilities Act) before people had legal rights to go to school. When I grew up in my little neighborhood in South Chicago, I never saw anyone with a disability. My daughter was born in 1989; the Americans with Disabilities Act passed in 1990. Suddenly, there were entitlements for people go to school by the 1970s but they were unevenly applied, that’s really the law. She grew up in a different world. She has a rare disorder. It’s not entirely invisible, but not entirely visible. She has a feeding tube and things, so we had to do workshops at her school. I was so impressed with how easily the kids accepted it. Once they had an explanation—and they do need to be invited into that thing‑—then, they were all her supporters, wanted to help her on the stairs because she has poor balance, etc. So now I realize I’m seeing those post-ADA kids in my classes. It’s a different universe. They grew up with siblings that didn’t get institutionalized. They are themselves people with different disabilities, visible, invisible, emotional, whatever who feel able to be in university or to be in public space. And I think that, more than anything, more than any law, or more than any sort of public demonstrations probably has more impact on social change by just the experience of what a friend of mine calls the ‘Proximity to Disability’. It’s there. It’s around, it’s part of everyday life. When I teach my Disability core class, I show them stuff from the Holocaust, because people with disabilities were the first people to be taken away and killed. We had the scandal at NYC in Willowbrook which was a horrible institution. It’s interesting because they look at that like it’s from a far distant planet, like they can’t imagine and I can imagine! Obviously different generation.
I think the world is really shifting. There is much more work to be done. It’s interesting but film is not being addressed here. There are huge battles still for appropriate casting, for example. That is still a big struggle. Films made by, for, about, with, people with disabilities… But I do think that the recognition of disability as just a fact of life to be included, it’s just much more wide-spread then it used to be. It’s not to say we don’t have more work to but then the next stage is that disability artistry has something to contribute to the arts, something to contribute to a more expansive and inclusive way of understanding humanity like all good. That will take longer.
We just had a workshop with the disability arts network with people like Alice Sheppard and curators and other folks, about 50 people there, and everyone was saying of the difference from five years ago till now in terms of presence and in terms of things happening—like, art shows and dance events, theatre pieces in a place like New York city where there is high density, it’s very astonishing.
I feel very optimistic. There are many things I feel pessimistic about, but I do feel optimistic about this. Also, disability is an equal opportunity issue. It’s not just on the right or just on the left.
George H.W. Bush died today. He was the president that got the ADA through. He had a child with issues, and he was incredibly supportive of getting that legislation through. It was mostly supported by Republicans. Interesting day to reflect on being here and how far people have come, in North America, I should say.
There is definitely hope! Oh my goodness. Just the amount of recognition and support to walk into a room where you not only have French and English and Indigenous folks but also sign language in both dominant languages of Quebec; everybody is making it work. It’s very fun to be in that kind of environment. I think people feel very welcome and supported.
Faye Ginsburg is founder and co-director of the Center for Disability Studies at New York University where she is also the founder/ Director of the Center for Media, Culture and History as well as the David B. Kriser Professor of Anthropology. Her writing and programming focus on the work of cultural activists and projects of social transformation, from her early research/writing on the US Abortion debates (Contested Lives) to her longstanding writing on/programming with Indigenous media-makers to her forthcoming book (with Rayna Rapp), Disability Worlds: Personhood, Everyday Life and “the New Normal” in the 21st Century.