Rally Against Institutionalization

Published April 04, 2009 @ 09:51AM PT

While the public is fed the same old "awareness" messages they've heard before, there are things that the public really needs to be aware of regarding autism and developmental disabilities, but which remain largely invisible if you're not in the middle of them. In Yakima, WA last week, self-advocates and allies rallied in front of the Yakima Valley School, an institution (not a "school") to protest the institutionalization of people with disabilities.

During the rally, Elison excited the crowd as she spoke into a megaphone about why "the person with the disability should decide where they want to live."

"How do you want to live?" she asked the group.

"Free!"

Local service providers brought some developmentally disabled people they work with from throughout the Yakima Valley and as far away as Spokane.

"We believe in self-advocacy, so we can teach people with disabilities that they can speak for themselves," said Tammara Allen, an adviser with People First Spokane Valley [ed. link to People First of Spokane Valley] who brought two women she helps. "They shouldn't be locked away in a closet."

Why does this matter, why should anyone care? This isn't heart-warming or tear-jerking, it's angry developmentally disabled adults shouting for their rights--something many people find terrifying. Aside from the fact that autistic people are among the numbers of those who are "locked away" in institutions, and that institutions are extremely costly, much more so than community-based solutions, there is a deep human ethics concern. The conditions in most institutions are barbaric and inhumane.

The ARC of Illinois, among others, sent out a link to the documentary Voices from Howe, an Illinois institution. This is relatively mild material, but nevertheless appalling.

So what about alternatives? This ABC News video Plan to help integrate disabled people, which highlights a woman who has CP and her autistic brother, gives the sketch of some of what Illinois is considering.

More information on the plan referenced in at the youtube site and in the ABC video can be found at gettoknowtheblue.org.

More awareness of social justice issues, please. No human being should be forced to live in institutionalized conditions. The public needs to be made aware of this issue and action taken to deliver basic human rights to all.

(Note: Both videos are fully captioned.)

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Comments (3)

Thank you for posting about this to help get the word out on IL. I live in IL and am very aware of the poor system we currently have in place here. Thank goodness Blago (our former governor) is out before he re-opened the shuttered Lincoln Developmental Center. That is a place that needs to remained closed.

Posted by michelle turner on 04/04/2009 @ 03:43PM PT
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I asked a couple of people who worked in Oregon's institution before it was shut down, what would Fairview had been like if it had been surrounded by homes that were rented exclusively to family members who had relatives living in the institution? They agreed things might have been a lot different.

Why don't people think of these things??? They seem like natural ways to have some very good oversight.

Having a foster home option for my daughter instead of an institution isn't all the comforting.

Posted by B B on 04/04/2009 @ 06:33PM PT
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What about those who are so severely autistic that their own security is at risk living in a "community" setting? And where do they get treatment?

I am the father of a severely autistic boy. I do not want to see him live in institutional care but I also know that group and community homes typically do not have adequate resources to ensure the well being and security of the most severely autistic. What do you say to the families of the severely autistic who have no where to go? Let them be homeless?

1. Death rates dramatically higher in community settings than in institutions

http://www.autism.com/ari/newsletter/104/page1.pdf

2. Re-Open the Institutions - Advocates Reverse Stand as "Community" Tragedy Unfolds, Bernard Rimland Ph. D.

Death rates higher in community settings, access to medical treatment more restricted

http://www.autism.com/ari/newsletter/111/page3.pdf

As the parent of a severely autistic 13 year old boy I take the issue of his future residence very seriously. As a serious autism advocate and as a father I have visited two institutional facilities in New Brunswick Canada where autistic persons have resided and I do not want my son living there as they now exist but I do not want him living in a group home that does not provide proper security, treatment or enjoyment of life either.

Becky B has offered a thoughtful response. Institutions have to be humanized and access provided to family and others but not at the expense of the security and well being of severly autistic persons. More of that kind of thinking is required to address this serous issue.

Posted by Harold L Doherty on 04/05/2009 @ 08:05AM PT
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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.