As I am one of those who have on occasions turned down offers to speak at
different public events because I have felt them to be exploitative I will
try to put in my twopenniesworth on the issue.
The foundation to this issue is one that I believe also is found as a basis
to alot of other "raw" subjects on this list: for example the "merit" of
being disabled yourself when talking on or researching about disability.
Living with an impairment in a society that by its structure oppresses you
is, as I see it hardly ever considered valuable experience, or for that
matter necessary in DS. To me this is not only strange, seeing as first hand
experience in most other areas of knowledge is considered indeed very
valuable, but it is also something which flaws many of the DS works. This
lack of valuating first hand experience is also extremely "normal" when it
comes to representation and employment in the disability organisations. And
of course I draw the conclusion that this has to do with both DS and DOrg
being part of the basic structure.
I want to make it clear that I do not consider the experinece of going
through every day life with an impairment as something which in itself
constitutes experience that makes you a "disabled expert" or what ever you
want to call it. The valuable experience is that which comes from meeting
these oppressive structures everyday, and being conscious about what you'īre
going through. The process of politicising this experinece is what makes it
valuable in a general way; because this makes the experience a possible
foundation for and force creating societal change. Otherwise the experience
is left on a personal level and as such has value only to the person living
it and his/hers immediate environment.
I have for many years been active in the disability movement in Sweden. I
have also during this time worked as an ombudsman for one of the bigger
organisations. I have had many and varied experiences of being invited to
speak on different issues with a disability aspect. Sometimes these
invitations are to sit as indeed an "expert" on the disability perspective.
In these cases it is the politicised, reflected experience that is sought
and also delivered. This I would call "sharing experience".
However it also quite often happens that an invitation really is nothing
more than a request for an "illustration", a "disabled icon" that will
provide some real life feelings into the event taking place. These
invitations, I might add has mostly come to me in my role as an activist.
The other type is almost exclusively delivered to me as a professional.
Typically for these events you have a few of us representing different types
of impairments (yes you're right impairments - not persons with). We each
are supposed to talk about how it feels to be disabled. (The "disabled
expertise" in these events are almost all the time totally provided by the
ABs.) The experience that are sought and delivered form us are of the
personal, emotional, non-reflective type. It does not provide anything that
enhances societal change or for that matter real understanding to the
structures in society that disenables us. What it does, is to provide the
same sort of cheap entertainment, the sociological thrill that news rags
writing about the accidents of royals or the problems of the rich, provide.
It provides a possibility for the audience to feel the sort of empathy that
"feeling sorry" does, and at the same time they can sit and feel "lucky" not
be us.
Yes, I feel very strongly that this is exploitation! And yes I feel it is
harmful to the disability cause. In fact I will go so far as to call it
sociological pornography.
As to the question of us wanting it both ways. I think you will have to look
at that question from another perspective. Isn't it really others who want
it both ways. To call us experts so that the event will have credibility
("native speakers" so to say), and then to treat us as real life laboratory
objects?
So I guess you who organise events like this will have to agree or disagree
with what I say; and go on and either share experience or exploit. This is
the choice of the organisers. We, the performers have at least the
fundamental democratic right to say: No thanks!
Susanne Berg
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