Thursday, January 04, 2007


The news was buried in an email. But there it was. I read it over and over and over again. My grin grew wider each time. It couldn't possibly be true. But it was.

"The American Association for Mental Retardation" is no more. They, this week - a couple days ago, have officially changed their name to "The American Association for Intellectual and Developmental Disabilities" ... further their influencial journal is no longer "Mental Retardation" but instead "Intellectual Disabilities". Hip Hip Hoorah.

I know nothing of the story, the struggle for name change, who led what campaign, how this came to be. And it doesn't matter. What matters is that we take another step away from a past that institutionalized, sterilized and brutalized people with disabilities. This is a giant step on that path.

Several years ago I appeared on a morning radio show discussing the case of "Eve" here in Canada. This was a case wherein a woman with a disability fought for her right to resist sterilization that her family had requested. A ground breaking case that ended in assuring that people with disabilities were heard by the courts as a people.

The interviewer asked me what this case meant. I could bearly hear the question. I had sat down in front of a huge microphone. The interviewer was in another room but I could see her through a large glass window. Just before going to live to air she said, "Just ignore the mike and talk to me."

Just ignore the mike? It was the size of a watermelon on steroids.

My mind raced. What did it mean? I knew that I was there in my capacity as a person who worked in sexuality and disability. I knew that's what they wanted from me. But, I panicked, "WHAT DID IT MEAN" the question screamed in my head.

My mouth open and I answered. "It means that we are slowly laying down the tools of the past. Institutionalization. Sterilization. Segregation. We are slowly giving them up. We are begining to understand that we serve people. People who need support. Not incarceration. Not surgery. Not separation. We are just beginning to understand the road that we are on. This means that we are beginning to give up power that we never should have had in the first place."

The interviewer looked at me. Where the hell did that come from? But she asked another question and we went on.

Later, I had a beer with lunch and vowed never to do live radio again. A vow I would not keep.

But I believe this. I believe that we are slowly giving up power. That we are slowly realizing who the people are that we serve. That we dare to desire to walk a different path. That we dare to be in a different relationship with those on that path. That we dare to determine a different destination.

I believe that The American Association for Intellectual and Developmental Disabilities (I can't believe I just said that) took a huge step on that road. They furthered the purpose and the journey.

Thank you.

From me.

From all the self advocates who have hated those words.

From every parent who ever had to comfort their child victimized by those words.

From everyone on the path.

Thank you.

It's weird. I find myself crying.


Anonymous said...

Dear Dave,
I read your blog yesterday and celebrated your words.
Later that day I heard the most terrible news story on the radio and T.V. here in Briton.
Parents of a young woman with learning disabilities and physical disabilities ( in America ) have decided it is their right to have their daughter have a hestrorectomy. They will with the support of thier doctor continue to give her hormone drugs to stop as they see, growing into a woman.
They have set up a website, which I am yet to visit.
I am so angry and upset by what these parents think is their right, to keep thier adult daugher a perpetual child in their eyes and their other comment was it was easier to lift her!
Some so called expert from an ethics journal seemed to think this was fine as the young woman had a mental age of very young child!
I heard on the radio this morning a British parent had come out in support of the America parent.
How to you make these people understand : They should give up power that they never should have had in the first place.
Amanda P

lina said...

one of your most moving pieces yet!
What an amazing day - really what a day we should all celebrate!
Another small step on a journey - but one not to be forgotten!

Dave Hingsburger said...

Amanda, could you send me more information on this. I haven't heard the story. You know my email address, send what ever references you've got. Thanks! Dave