Saturday, July 7, 2012

Countdown to the ADA anniversary of July 26 - AAPD Speaks to Sue Swenson - (video)

The American Association of People with Disabilities (AAPD) released video's leading up to July 26, (in 2010) the 20th anniversary of the ADA....



YouTube Uploaded by AAPDvideo on Jun 30, 2010

TRANSCRIPT

Hi, my name is Sue Swenson. I am a mother of three sons. My middle son, Charlie, is an adult man who has multiple complex developmental disabilities, born in 1982, so before the ADA. I'm a Minnesota native, but I've been in D.C. since 1998 when I came -- actually, I came in '96 to do a Kennedy Fellowship in the U.S. Senate and in '98 I came back to do a White House appointment in the Administration on Developmental Disabilities.

What does the 20th anniversary mean to you?

I am really excited about the 20th anniversary of the ADA. First, because my son was born before it passed, and some of us from Minnesota happened to be in D.C. in 1989. We did manage to meet with the second senator, the junior senator from Minnesota at that time, Rudy Boschwitz, and turned him around. There were about 14 of us, half people with disabilities and half parents. So my introduction to the ADA was really very much about different parts of the disability community all working together, including families. Sometimes families are seen as outsiders a little bit, because we don't really understand disability when our kids are born. We are thrown into a medical model right away and it's kind of hard to fight your way out of that. To me the 20 years of the ADA has meant my coming of age with understanding what a disability culture is or what a disability paradigm is.

What changes have you seen as a result of the ADA?

One of the key changes that I have seen with the ADA was after the Supreme Court Olmstead decision, [which] really reached out in the developmental disability community and said, no, it's not okay to take people who have complex disabilities and hide them off to the side in some institutional setting, that really people had the right to the least restrictive environment or the most integrated setting or, in my mind, what do we need segregation for at all? So I think we have to start with full inclusion, full belonging and move from there. Of course there is no reason you can't be a little bit beyond compliance with the law. So I am always working in that space, trying to help people understand that just the compliance level with ADA is really not what we are looking for. We are looking for a vibrant and inclusive society that brings everyone into the fold and into belonging. And I think that we are starting to see that, I think it used to be harder in school, it used to be harder in communities to look at inclusion.

What still needs to be done or changed regarding the ADA?

As a society, we are so fast. Everything is so fast with us that 20 years seems like, "Hey, we should be done." And we're not done, we're not going to be done with the ADA. The Universal Declaration on Human Rights says that we have the right to a revolution. And I know I don't look like much of a revolutionary, but in many ways I am, and I think many of us who live with disabilities in our lives are revolutionaries. Not in the political or military sense, but in the social and cultural sense, and there are many changes that need to happen, coming in behind ADA. Reaching out to families, to help them understand that there are guideposts here. The wisdom of people with disabilities can help us figure out what do we want for our kids when they grow up. How can we begin to use the ADA to understand things like special education? Are we using our time with an IEP to really develop accommodations for our sons and daughters? Moving from that medical model of, say, therapy, cure, into more of an ADA world that says, what accommodations would allow my son or daughter to live with freedom, equality and liberty in the United States?

For The American Association of People with Disabilities (AAPD):
http://www.aapd.com/

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