Saturday, October 8, 2011

Self-Advocates and Parents

Autistic self-advocates and parents of autistic kids do not always make eye contact (autism in-joke). Jean Winegardner writes at The Washington Times:

All too often, self-advocates*—individuals with autism themselves—feel that parents of children with autism don't want to hear what they have to say. "There is a saying amongst developmentally disabled activists," writes one such activist in a recent blog post. "It goes like this: 'Some parents just want disabled children to speak and disabled adults to shut up.'"

These are harsh words, but they are at the heart of a conflict that recently came to a head over this very issue: When it comes to the developmental disability rights movement, who should be leading the way?

The Thinking Person's Guide to Autism, a website devoted to providing information about autism from autistic individuals as well as parents and professionals, saw a conflict unfolding on the internet last month between a parent advocate and a self-advocate and stepped in to offer them a do-over of sorts. The result has been a series of blog posts which have run over the past two weeks, with voices from many corners of the autism community writing, commenting, arguing, and hopefully listening to each other.

This particular dust-up began when parent advocate and author Robert Rummel-Hudson, who blogs at Fighting Monsters with Rubber Swords, wrote a post about a movie that used the words "retarded" and "Downsy." After describing that language as offensive to parents of children with special needs, he came under fire for having left out disabled people themselves.

Blogger and autistic self-advocate Zoe Gross, who blogs at Illusion of Competence, responded with her own post making the point that when writing about offensive language such as this, it is important to talk about the fact that these words are hurtful not just to relatives of disabled people, but to disabled people themselves.

Watching this unfold and spiral into unpleasantness, the editors at Thinking Person's Guide to Autism (TPGA) wanted to open a forum for Robert and Zoe to talk with a fresh start. "We both wanted a do-over," says Zoe, "so we agreed to come on TPGA and have the conversation again, with more people and less shouting, and see if we couldn't make something positive out of it."

Left Brain/Right Brain weighs in:

If you ask me, “who should lead the autism rights movement?” the answer is simple. No one. Emphasis on one. As in no one person can or should. We are talking about too diverse a group of people for any one person to lead.

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That means we need people, plural, call them leaders if you will, who will represent the self-advocates. We need people who will represent those who, for whatever reason, can’t or don’t self-advocate. Most of all, we need these people to work together. To not only be the allies of autistics, but allies of each other.

There are many things that parents like myself—parents of young children with great challenges—should realize. This, of course, in my own humble opinion. I’ll list only a few.

It is in our children’s own best interest to be allies with self advocates. They not only can teach us things, but the fact is our kids are the minority. Seriously. First, there is a big population of unidentified adults out there. Kids are the minority, even amongst autistics. Even if you have problems accepting that, the “classic” autistic kid is the minority even amongst the autistic children of today. For example, most parents report their autistic kids are getting letter grades. Only 2.4% were reported by parents as “can’t speak”.

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We don’t need a leader. We need leaders. Thousands of them. That’s why it’s a “movement” not a political party.