Steven Brown, part 10 of 12: "Institute on Disability Culture"

Uploaded by ItsOurStoryProject on 20.07.2010

bjbjm One of the things I talk about frequently at WID is at WID there are people of various
religions, ethnicities, sexual orientations, gender identification, I mean people who were
heterosexual, homosexual, transgendered, all sorts of people, but most of them were from
this country and so one of the things that happened the first few times I talked about
disability culture at WID, was one of the reactions was we don t think there can be
a disability culture because we are American and I heard that and it stunned me, it really
stopped me and I remember it because it happened so often. And I wondered why in the world
people were saying that, how does being American stop there from being a disability culture?
And what I finally got was disability was such a negative connotation for people, especially
people who were lesbian or identified as already being away from the norm, not to mention having
a disability, that they didn t want to add disability to the negative stereotypes and
connotations that people already saw them as. So I sort of went from there to well,
if that s going then what people need is to have pride in what they are, as a person with
a disability. So, when Lillian and I started the institute in 94, we had moved from California
to New Mexico, and we partly did that with the purpose of when we got there that we would
start the institute on disability culture. So, we had to think about what we wanted to
institute to say so we came up with the mission statement of promoting pride in the history
activities and cultural identity of people with disabilities throughout the world. So
a small mission statement. Then we did promoting disability pride as our motto and put it on
our business cards and we had shirts that said promoting disability pride , one of the
wonderful things that happened was I have a friend who is the director of the independent
living center in Houston and she started a mobile center, she got a bus that acted as
a mobile center and she asked if she could put promoting disabilities pride on the side
of the bus, so she did. So then, I started writing a lot about disability culture and
Id been talking about it for about 5 years and writing a little about it. And people
kept asking me for a one-sentence definition. And I say, uh... I can talk about it for an
hour and I can write about it, I had writing a monograph about it at the time. But a one
sentence definition, I don t know if I can do that. So, I sat down one Saturday morning
in New Mexico and I tried to come up with this definition. And I wrote an article that
didn t come up with a one sentence definition, it came up with a one paragraph definition,
that I then had to put on my business cards so id actually have that with me when people
asked me about it. So this is what it is: people with disabilities have forged a group
identity, we share a common history of oppression and a common bond of resilience, we generate
art, music, and literature and other expressions of our lives and our culture infused from
our experiences of disability. Most importantly, we are proud of ourselves as people with disabilities.
We claim our disabilities with pride as part of our identities we are who we are. We are
people with disabilities. Now at this point I might be able to lop off that last sentence,
but I ve read that so many times I have to keep it on there. So anyway, I got a lot of
thinking about that from reading people like James Baldwin. James Baldwin, if you don t
know, is an author who was black and also gay and he was actually one of the first people
who talked about what eventually became black is beautiful. There is a book he wrote called
no name in the street and if you read the last 20 pages of that book and you substitute
non-disabled for white, and a person with a disability for black, you almost have the
exact same 20 pages. And what he is talking about in that part of the book is that, I
ll put it into the disability context that people with disabilities are not going to
integrated into society the way we would like to be as long as we are trying to be non-disabled.
So if you drool, and you try to hide your drool, if you walk funny, you have a funny
gait , if you use a communicator to talk, a voice synthesizer to talk, and your trying
not to use that, if you try to hide the aspects of disability, there is no way you can be
integrated the way we as a move we should want that to happened, because we want to
be integrated the way we are. And I order to do that I think we have to have pride in
who we are. So I don t think only people with disability should have pride, I think everybody
should have pride. And I don t think you should have pride only in the disability aspects
of who you are, but if you don t have pride in the disability aspects of who you are,
you are probably not going to have pride in other parts of yourself as well. Pride became
and has become very important for me and my work. And then to make this even longer, Lillian
started talking about the journey from disability shame to disability pride. And that was really
important I think because I tend to talk about pride, but because of her experiences she
started to talk about shame and how many of us with disabilities have been ashamed of
who we are as people with disabilities and of course we have good reason for that. We
have been taught to be ashamed of our disabilities, if we have pain, we are taught to hide it
and say oh its not that bad, I can go on, and there are plenty of other examples that
seem to be escaping me right now. But because of the way society has looked at people with
disabilities over the centuries, we ve to hide our disability conditions and if you
try to hide something, how can you not be ashamed of it? So one of the things we talk
about now in this journey from shame to pride is that even if you have pride, if you ve
gotten to that place, it doesn t mean that you don t take a step back and have shame
about certain things. So, it is a journey for many of us from disability shame to disability
pride, but is not a journey from A to B and your done at B. Frequently you go to Z or
one or whatever, it is a zigzag path. And so I think that is also very important to
remember. gdb& urn:schemas-microsoft-com:office:smarttags State urn:schemas-microsoft-com:office:smarttags
place well I first saw ED, I think, I knew about him but I first saw him at this actually
wonderful conference called beyond survival that was held in Denver in 19 Owner Normal
Owner Microsoft Office Word Microsoft, Inc well I first saw ED, I think, I knew about
him but I first saw him at this actually wonderful conference called beyond survival that was
held in Denver in 19 Title Microsoft Office Word Document MSWordDoc Word.Document.8