Autism

First Person Cut Consequences

Published June 24, 2009 @ 11:44AM PT

an empty room in a house. there is a fireplace on the wall to the left.  there is a door on the wall to the right. the room has a brown abstract print carpet and blue and white wall paper and a white ceiling and trim. The U.S. budget cuts to particularly adult supports and services is something I've been following a lot, my interest admittedly in part out of anxiety at having my own (already really poor) "support" situation become completely untenable.

What those news stories I post about all have in common is they were written by an outsider reporter, by someone who is covering the protest, the town hall meeting, or the legislative decision, not by someone who is participating. The news stories may have quotes from a parent or professional (and occasionally, very rarely, from a self-advocate), but they are not first person accounts.

No one asked us, a blog entry by KibbutzAmiad on DailyKos, is a first person account. It is a first person account by a support worker that includes the perspective of people who are affected by the budget cuts, but who were, for various reasons, not part of protests, town hall meetings, or giving input into legislative decisions.

Long quotes are considered bad form. But KibbutzAmiad's post is so powerful that deciding what blurbs to crop out was beyond even my brutal editorial sheers. Do read the whole thing as well; this is still only an excerpt.

Imagine being told that you will lose your means to get to work, your home, your means to grocery shop, and all the people that make up your daily life. Imagine being told this and being unable to read, unable to do your own banking, unable to take care of yourself in the ways most of us take for granted. You can't just move home with mom and dad - you are 40, 50, or 60 years old and your parents, if they are alive, are in no position to take care of you. You have questions, you have terrible fears, and none of the people you have relied on and trusted to help you have any answers.

So the past two weeks have been extremely difficult for all of us. Every single person I work with is facing the loss of all the structures and components that make up their life. They are all terrified. They all feel helpless, and angry. These are people who have spent a lifetime struggling to cope with a society that tells them daily that they are less than "normal", not worthy of much. Yet for the most part they remain polite, and friendly, and optimistic. But this has gutted them.

Today I went to visit one of them, a 43 year old man named Will. Will looks ten years younger than his actual age. Unlike many of the people I work with, he is in good shape - he is careful to work out regularly and eat as well as he can on his budget. He works at a discount store and does a good job, taking the train to work and back. He smiles a lot, and makes an effort to be friendly, even to strangers. This takes some extraordinary optimism on his part because strangers have not always been kind to Will. He does not look "disabled". But he cannot really read or write, and has an IQ in the low 60s. He cannot drive or pay his own bills or - most significantly for him right now - handle the complexities of his medical treatment for stage IV melanoma. All of those tasks are currently handled by the staff that supports him. All of those services will end July 1.

..."No one asked us", he suddenly said, quite forcefully for him - he's very soft spoken normally. "No one asked us if it was okay to do this. No one asked us ANYTHING and we're the ones who are hurt by it. It's not right. No one asked us."

No, they sure as hell did not. In this nation, when changes in public policy are made, who gets asked? The rich and the powerful. Those least affected are carefully consulted and their best interests put front and center. But as Scarlett O'Hara succinctly put it, it's a sight easier to steal from the poor and weak than from the rich and strong.

I've followed the situation in Oregon through my state's self-advocacy channels, testified before legislative groups twice, and done what I can to prevent the loss of funding which, ultimately, for all the enmasse protest of thousands in my state, I have zero control over. Sometimes it seems like whether we are asked or not, we will all still lose. How can we fight this more effectively, before it is too late?

P.S. Many thanks to the reader who brought the Daily Kos entry to my attention.

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Comments (1)

  1. Twyla Ramos

    This is incredibly sad.  Thanks so much for posting it, and for your advocacy!

    Posted by Twyla Ramos on 06/27/2009 @ 03:49PM PT

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Author
Dora Raymaker

Dora is committed to improving quality of life for individuals on the autistic spectrum--including herself! She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network's Board of Directors.

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