Self-Advocacy Outside the Blogosphere

Stories on the Internet are what blogging is all about. Read, react, re-post (only this time with feeling!). This is, well, what we're all here for. But it also means that certain ideas, attitudes, types of stories, and misconceptions that do not reflect off-line reality get recirculated and ultimately believed to be true. It's a self-reinforcing, or positive, feedback loop of inaccuracy.

One of these misconceptions, peculiar to autism articles, is that self-advocacy is something only people without intellectual disability or complex support needs are able to engage in. The irony of this is that the intellectual and broader developmental disability self-advocacy communities have well-developed models to successfully enable self-advocacy for people with intellectual disabilities or complex support needs; in my area, self-advocates with ID have accomplished far more at this point than self-advocates who are on the autistic spectrum but who do not have ID.

Self-advocacy organizations for people with intellectual and other developmental disabilities began in my state in the 1970's. While the original People First organization is now defunct (though their web site lives on), the organized ID/DD self-advocacy community is currently active in the form of Self Advocates as Leaders, which influences public policy, provides self-advocacy training, and publishes self-advocate stories. That group is affiliated with the nation-wide ID/DD self-advocacy organization Self Advocates Becoming Empowered (look up your own state's chapter!).

The model my local group uses is the inclusion of skilled support staff who enable people with ID or complex support needs to participate in self-advocacy activities. These staff assist with tasks like organization, transportation, and translation, but they do not make any decisions--they simply facilitate our ability to make our own decisions. It is of importance that these support people have training and passion specifically in the area of encouraging self-advocates to speak their own minds. This is important because speaking up for one's self is something which regular support staff often do not want "the client" to do.

This is one model and example, but probably not the only. The People First movement has been around for a while.

Before accepting an assumption that people on the spectrum with ID or complex support needs can not self-advocate, it may be worth looking outside of the "autism community" at the broader ID/DD community. It may be worth looking outside the Internet too. Instead of stating "someone like that can't--" ask "has anyone like that ever--?"

There's a lot of experience out there we can draw from if we look to what is happening outside the blogosphere. The Internet is big. The world is bigger.