This is something I've been grappling with for some time now, not mere,y in
terms of disability rights. I'm not getting any closer to an answer, but here
are my thoughts, for what they are worth. It does, though, mean quite a long
post.
Like it or not, there is a problem of perception, at least in Anglo-Saxon
societies, when someone who is being treated badly speaks out. It does not show
the right sort of "stiff upper lip". It is difficult to put the message across
without being assumed to be "whining". Also, there is a tendency, in the ears
of those listening (assuming anyone does), to discount self-reported bad
treatment by at least a half, and probably more. This leads to exaggeration on
the part of the reporter (I have this reliably from activists in several areas
of lobbying), which leads to further discounting, and so on. Of course, this
means the worse the treatment, the less it can be spoken about, because it gets
discounted in proportion to the reported harm!
Also, there is a natural tendency on the part of the person being harmed to want
the entire harm to go away as quickly as possible. This again can sound like
over-reporting, and discounting, which leads to more urgent responses, which
sounds like over-reporting ... you get the idea.
Okay, this is where "representatives" come in, professionals skilled at putting
across a message (or so they tell us), and we are all of a sudden in the realm
of "victim culture". Charities/groups are set up that depend on the existence
of whatever it is in order to exist. It is in the interest of all those
employed in the upper reaches of the charity to maintain the existence of the
harm, and to keep talking it up so that the discount keeps rising, and less is
done, but their jobs are secure! (Think about it: when did you ever hear of a
charity that represents a particular group say "Our job is done, we are
disbanding"?)
Now we come to the further problem of those who cannot, for whatever reason,
communicate for themselves, but who are being harmed in some way. This affects
the disability movement, because not being able to communicate is a disability
in human society. They *need* people who can communicate, and therefore do not
suffer the same problems. There cannot be the direct link between the harmed
and the reporter, no matter where on the disability spectrum the reporter is.
Colin is in this position at the moment - he cannot know of the problems of
someone who has no ability to communicate, because he can communicate. However,
someone must, and Colin is as good as, if not better, than someone else, but
the argument that he presents about representation means it cannot be him ...
The point is, I think, change requires a variety of approaches, and players with
different skills and views. Saying "X cannot speak for Y", only means something
if Y can speak for him/her/themself in a way that others understand. For
instance, I don't think slavery would have been abolished if it had been the
slaves fighting for their own liberation. Even if X does have the ability to
communicate effectively, it does not mean that they should not learn different
ways of doing it, depending on the audience, etc, and in some situations, that
may require letting someone speak on their behalf.
Just my thoughts - I'm sure there are many people who have studied this in depth
who will point out the error of my ways!
--
Jeremy Wickins,
PhD Researcher,
School of Law,
University of Sheffield,
Bartolome House,
Sheffield. S3 7ND
UK.
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