Patsy et. al.
I share your wish for a life functioning better from a purely practical
perspective. But as you write, there are two sides and two solutions to most
of this. On the one hand it would be more practical to be able to jump onto
the bus like any non-disabled commuter. On the other hand there do exist
accessible public transport - just not where I live and at a level which I
can use. Life is full of practical problems and a lot of them could be
solved from the second perspective by societal change. Cure is not the sole
solution to everything.
I usually wheel around in my dreams, when it so to say "works" being a
wheelchair user. Then when I encounter practical problems dreaming, these
are often solved by discharging of the wheelchair. For example in a stress
dream I had where I was chased through a warehouse - very flat and level
floor and I'm rolling along nicely, though with much more speed than I would
be capable of if awake. Then suddenly the exit is blocked by a staircase.
The solution in my dream was to climb the stairs with the wheelchair on my
back, sit down in it again at the top of the stairs and continue rolling.
Maybe this can be interpreted as a wish for a cure, but in reality a lift
would have worked just as good. I think the cure-wishes are an interaction
between the resources available for independent living/ access to society
and the life-choices we want to pursue. And, at least for my part, how
impatient we are and how we perceive the different solutions as possible at
all or within what timeframe. I find medicine a new and not very advanced
science, so that makes me disbelieve theories of medical progress for most
of the time. Community and building of societies on the other hand is far
more complex and so it carries more "hope", in my world, for a solution to
these practicalities. I don't feel guilty for advocating societal change and
hoping for it. And I don't think anyone should feel guilty for wanting a
cure.
I grew up in the "Bible belt" of Sweden so I have had a long thought about
guilt - in many areas outside disability. It took me a long time to get on
top of it. Now I just consider it a manipulation technique, where others
want to make me do things I don't want because they want it in a specific
way. The media, or the dominant ideas voiced in this, want me to hope, fight
and work for a cure because it suits the dominant perceptions of the perfect
solution. In the same way, I think we should acknowledge that, there are
ideas and groups within the disabled community which uses the same tool to
make us feel guilty for not wanting the perfect solution of "the accessible
utopia". At least not wanting it enough to forget our longing for another
solution, whichever it is.
A friend of mine wrote an essay a couple of years back where he stated that
he as a person with hearing impairment doesn't miss the sound of speech but
the possibility of communication with others. So while the solutions might
differ we all share the dream of participating in communal life. It
shouldn't really be about the means to the end, should it? It's the end that
counts. And instead of guilt I think it should be about responsibility.
Responsibility for the solution to inequality and ostracism should be put on
those with power to change the situation which causes it. The practical
problems might be ours, but their solution is bloody well the responsibility
for everyone in society.
Making people feel guilt, I think, is a tool others use to picture it the
other way around. The problem is theirs (and its name is their costs for our
"impairment"), but the responsibility for the solution is ours. Why don't we
just become "un impaired" and solve their problem. And of course we are all
part of community so we are taught when to feel guilt and thereby censor and
correct ourselves to fit in with the dominant ideas. None is free from this
and just now I have this nagging voice in my head saying "This is an
academic list. What are you doing preaching about this stuff in this forum?
Shouldn't you just shut up?" The dominant ideas within research shouts to
me: "This is an academic forum. It's not allowed to be personal." Another
voice responds: "It's my life, my right to participation that's researched,
why shouldn't I be personal?"
The fundamental question - do we have to become parts of our whole to be
parts of communities?
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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