Susan Senator

As we have been hearing, Special Olympics is on a tear to get the use of the word “retarded” taken out of usage. I am all for this; I bought my “Spread the word to End the Word” tee shirt, which I and many many others across the globe will wear on March 3 to this end (and to end this).

We have also been hearing about the controversy over some of the proposed changes to the DSM-V (Kevin Leitch does a great job illustrating this controversy), whereby the diagnosis of “Asperger’s Syndrome” will now be folded into the Autism Spectrum Disorder in general. Some “Aspies” (not all!) are feeling uncomfortable or downright angry at being lumped in with the other ends of the Autism Spectrum, with the more severely involved cases of autism. I heard something about how they didn’t want to have the same dx as “adults who needed diaper changes.” Those who have spoken this angrily are being taken to task for their attitude towards severe autism, which frequently is accompanied by mental retardation. (At the same time, the new DSM also proposes leaving out mention of the high numbers of autistics with coginitive delays).

What’s going on is people are being forced to look at something they do not want to look at. Mental retardation can often accompany autism. Mental retardation is a tough row to hoe. But — it doesn’t have to be as hard as it has become. The struggle of having some sort of physical or mental limitation is hard enough, but we always add to that a value judgment. People see mental retardation and its accompanying difficulties as something to be ashamed of. I think we have to acknowledge that and figure out where we go from there.

Since the beginning of time people have been trying to distinguish themselves from others whom they deemed were less than them somehow. Each time this has happened, groups rise up and protest being made lesser. They create awareness. They point out the easy steps towards awareness, towards remedying the pain. We all see the struggles of African Americans, gays, Jews, et al. Change begins with words. Then you get laws in place. Then, at last, you start to get social change. But that takes a long, long time. But — okay, it’s still worthwhile. Separate drinking fountains were abolished by law, Ruby Bridges was given a military escort to a white school. But until enough time and discussion are spent on these issues, you don’t get the change in attitudes. Because even if everyone stops using the word “retard,” there will still be so many who hate the concept of cognitive delay, who feel that it is the worst thing on earth to be that way.

Almost two years ago, I wrote about the r-word debate. There I made the point that yes, it was terrible the way people often unconsciously used the word “retard” as a substitute for “stupid.” Some use it consciously, and they make fun of people with cognitive disabilities purposefully. They see them as beneath them, as sub-human. I wrote,

“when I think about Nat’s loveliness and complexity and I realize that, because of his IQ, others may indeed miss that entirely, I feel it like a knife in my heart. Because Nat is so much more than a test score, or an arrangement of chromosomes. Nat is a regular person, neither idiot nor angel, with flaws and virtues like all of us. I, like all mothers, want others to really know him and to love him, not to revile him.”

But I made another point as well: Is stigma in the eye of the beholder? Or is stigma located in the heart of the stigmatized? Was Hester Prynne degraded by having to wear the A and admit to being an adulteress, or was the shame ultimately on her community for judging her so harshly? We know how that story ends, after all. In the end, wasn’t the point “Let all who are without sin cast the first stone?”

The Special Olympics campaign to end the r-word is only the first step. This is the raising-awareness step.

I will wear my “Spread the Word to End the Word” on March 3, because I see it as the first step towards creating awareness, towards making people really look at the word and think about it.

But — I feel in my heart that ending the word will not end the shaming until we get rid of the hate for difference.