
The Disability Gulag (2003) - luu
http://www.nytimes.com/2003/11/23/magazine/the-disability-gulag.html?pagewanted=all
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stevetrewick
This resonates. When my vision problems were first diagnosed (~1976, UK) my
parents were explicitly told not to 'make too much fuss'about it or I would be
taken away and placed in 'special' care. Being stealth mainstreamed came with
its own baggage of course, though perhaps mercifully I was unaware of this
Faustian bargain until recently.

I was lucky, I learned enough 'hacks' to pass for 'normal' most of the time
which saved me from the thing that makes the gulag in its many forms so awful,
which is that many people, even the kindest most well meaning people, have a
predictable first response to almost any kind of disability or serious illness
which is to immediately strip an individual of some of their agency.

There's a spectrum from over solicitous behaviour all the way through to
making people shit in a pan where everyone can see but it all comes from the
same place. /narcissistic navel gazing

Oh, pro tip: kinda covered in the article, but subtly. If you _really_ want to
piss off someone who has a disability, call them 'inspiring' to their face.
Bonus points if you squeeze a shoulder and wrinkle up your face. Surprised me
too.

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jbob2000
Great article, loved the bits about making the senators uncomfortable, haha.

My significant other works in the field of disability care. It's chronically
underfunded, but one of the main issues as explained to me is the quality of
the labour pool. It's hard to find respectable people who are OK with cleaning
poop and inserting catheters and are also OK with working shifts, sometimes 12
hour ones. And then doing that for minimum wage.

So when I read something like "...they still can't select their own assistants
or decide where they live or with whom." I am tempted to think that it's not
the fault of the aid organizations. They're trying to make the best of their
finances and the labour they have available to them.

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stevetrewick
Somewhat, yes. My own SO works in post 16 education, at the college their is a
vocational 'health and care' track. These are the people who will credentialed
to work in state sponsored or provided care. I would not want many of them to
look after any one I cared for.

I think part of the point the article is making RE this is that given (amongst
other things) the variable quality of this labour pool (and the regulation it
attracts), the ability to select outside of it - difficult as this may be - is
valued.

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mjevans
I think this is partly a knowledge problem.

People don't have knowledge that this even really exists, or what the
expenditures they're asked to fund are actually providing (or not providing as
the case might be).

A transparent (open) budget from taxes to payment might help, as well as an
easy way to compare the typical compensation for this task to others in
society. At that point a more informed, and hopefully more humane, decision
can be reached.

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brudgers
Date: 2003.

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dang
Thanks; added.

