The thing that amazes me in connection to cure issues is the ill-defined or
maybe I mean illogical question of whether I wouldn't rather be cured than
mobility impaired. For me it's not really a question of impairment or not,
but what it would cost me to change who I am. I guess this might be the
difference between impairment and disability. If my SCI had only resulted in
an inability to move certain parts of my body I would have no problems with
the cure approach. But the fact is that it has provided me with an
overwhelming amount of experience during the last two decades which I
wouldn't have if I hadn't injured myself. So the question seems to imply
that I would value mobility more than this part of my identity.
If I hadn't injured myself I would probably work as a legal official in some
area, maybe within the welfare system. I know I was not focused enough to
really go further. I would have 1,7 kids, a husband and five weeks vacation
at the summer house. The person I am today finds this prospect devastatingly
boring. This is a result of becoming a disabled person and the way this has
shaped my life.
So when someone ask me if I don't want to be cured I hear them say, don't
you want that "devastatingly boring" life. And the answer would be NO.
Because the real question is: Who am I if I'm not a disabled person? Who
would I be if you take that part away from me?
Added to this is the question: How much of my life (years) and energy would
I have to spend to be cured? What would I have to sacrifice (in development
on other areas of my identity)? Reeve, according to articles, have spent
nine years to move a finger. Life is not forever. It is now. So I guess my
answer would be: When I die I would not want the epitaph "here rests a
person who finally managed to pull her pants up by herself". Maybe I'm
greedy, but I want more for my life. And isn't the issue that doing is
being, or becoming the result of what we chose to do.
So I wonder if this really is an issue of how identities are perceived or
created. Maybe waiting and working for the cure is a disabled (or do I mean
disabling) identity created by ideology within our society. And, thus, by
even answering the question of wanting a cure, we are entering this arena.
Maybe the real answer should be: I'm a disabled person. This is part of my
identity. I can't wish to be someone I'm not. I can't sacrifice who I am to
become the one you want me to be.
The question is the answer, in this case. And I think the appropriate method
is to not succumb to it.
It would be interesting if we were able to research how identities of
persons with impairments are created. How ideologies within political
systems, policies, welfare etc. interacts with media and cultural
portrayals; how economics and division of resources define the possibilities
and limits. For me this is the real challenge of disability studies - the
basic structures. I guess I'm trying to say that I wish we could focus less
on policy oriented specific research and more on the ground level behind
policies. So maybe I want the epitaph "here rests a person who tried to
figure out why everyone thought it vital that she could pull her pants off
by herself". :-) After all if it takes a decade for a finger ...
Written by someone who heard about the rat being able to walk again, as
early as 1982.
Susanne
-------------------------------------------------------
Susanne Berg
Luntmakargatan 86 A
113 51 STOCKHOLM
Sweden
telephone/fax +46 (0)8 15 73 54mobile phone +46 (0)70 515 73 56
e-mail [log in to unmask]
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