Susanne,
Thank you for crystallising the notion in my head, but have not been able to
put into words. Indeed more of this type of response will help, us to help
others move forward.
Thanks.
----- Original Message -----
From: "Susanne Berg" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, October 14, 2004 11:31 AM
Subject: cure and identity
> 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]
>
>
>
>
> ________________End of message______________________
>
> Archives and tools for the Disability-Research Discussion List
> are now located at:
>
> www.jiscmail.ac.uk/lists/disability-research.html
>
> You can JOIN or LEAVE the list from this web page.
>
________________End of message______________________
Archives and tools for the Disability-Research Discussion List
are now located at:
www.jiscmail.ac.uk/lists/disability-research.html
You can JOIN or LEAVE the list from this web page.
|
