Welcome

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.

Feelings

"Can I say something?" she said as she sat down in one of my office chairs. I swiveled away from the computer screen and saw that she was bringing me the photocopying I had requested. I could tell from the look on her face that something was bothering her.

"Is everything alright?" I asked, concerned. I like her. She is a woman with a disability who works at the front desk, who answers phones, does photocopying and jokes with Joe every single time she sees him. I've never said it, but I like the fact that the office has people with disabilities working as full time employees. It seems odd that agencies that serve people with disabilities often don't employ them. Anyways, as I said, she looked like something had upset her.

"I don't like this," she said, her finger tapping on something on the front page of the photocopying, "I think this is just wrong." I couldn't see what she was pointing to so I asked her to let me see what brought such strong emotion into her words. She handed me one of the photocopies and asked me to read it, "Do you see what's there?"

I looked at it and at first I could see nothing. I've photocopied this many times before. It's a very old article that was written by Susan Ludwig and myself that described a feelings education curriculum. My eye dropped down to the title of the article. She saw that I'd skipped down and she said, "No, up here," and reached to point to the word "Retardation". The Journal's name, Psychiatric Aspects of Mental Retardation was blazed across the top of the paper.

"This word is wrong, it hurts people. I don't think it should be used."

OK, she's right. I explained to her that the article was nearly 20 years old. That the journal had changed it's name so that it no longer uses the word. That it comes from a time when that word was more commonly used.

"It doesn't matter," she said, resolute, "it hurt people then and it hurts people now."

I apologized for the fact that she had had to look at this word as she made the photocopies. It was thoughtless on my part and I won't ask her to do these again. She nodded, brusquely, and rose to leave. "People shouldn't use words that hurt," she said as she left.

I held the photocopy in my hands. I looked at the offending word. A word that has caused so much pain for so many people. A word that flies out of the mouths of teens at an alarming rate. A word used by professionals to distance and degrade ... a word with history.

One of the first times I ever met Susan Ludwig, she told me that she was teaching a class to people with disabilities. She had come up with a curriculum to teach feelings, to recognize feelings - to identify feelings in others and to speak up with feelings had been hurt. I remember, all those years ago, sitting with her as she explained the curriculum to me. I was taken by it's simplicity and it's power. Together we wrote up her work and had it published. The goal was to help people with disabilities, a people who were programmed out of 'anger' and drugged into 'happy' to understand that their feelings were legitimate.

At that time, all those years ago, I couldn't have imagined a strong, powerful woman sitting down and telling me that her feelings mattered, that words hurt her, and that things needed to change. A woman who tapped at an offensive word on a page of photocopying and explained how she felt about having to see that word. Wow.

Somehow, somewhere, I know Susan Ludwig is smiling.