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The Importance of Advocacy

August 6, 2011

Last week I wrote the following post on Countering (at blogspot) and it generated some debate in the comments, which I will let readers go over there to read, if they are interested.

Inclusion is important; it’s something I believe strongly in, but there’s a difference between being inclusive and promoting and supporting debunked modalities and the people who make their money off of this woo. So, I ask you, what would you think?

What would you think?

If you realized an autism self-advocate advocated specifically for a debunked treatment like facilitated communication?

If you realized that a self-advocate who represents an organization speaks at conferences on facilitated communication?

What responsibility does a disability rights advocate have to ensure that the practices he or she endorses are sound practices?

We already have too many autism organizations explicitly endorsing various forms of pseudoscience and quackery (NAA, ASA).

What would you think if you realized another organization you supported because of its self-advocacy role also endorsed some of the same quackery? Not only endorsed it, but embraced it, used it in PSAs. What would you think?

Would you stand up? Would you ask what’s going on? Would you look more closely? Would you care?

Would you shrug it off, claim it represents inclusion, and let it go?

Would you label it political expediency and the price one pays for being a vocal advocate, that these disability rights advocates go where the audiences are? Would you give the person a free pass?

Would you?

Why?

Why would you give this a free pass?

Why would you sit silently by and allow a method that argues that what an individual can communicate on his own is so inadequate that co-opting that communication is acceptable, even preferable?

Why do you?

Is it a lack of understanding?

Is it wishful thinking?

Is it because the stories that come out of facilitated communication from its proponents are so feel-good you get emotionally invested in it that it’s hard to imagine that there are people who intentionally con others?

Is it because you are afraid to call this out? Be seen as a killjoy?

A commitment to disability rights, to protecting and standing up for those who are different, ought to mean a moral and social responsibility to protect, not exploit, those who are most vulnerable. It ought to mean acceptance of severe disability rather than embracing fairy tales that if only the right person holds onto the disabled’s arm, the person’s true intelligence will finally be revealed.

Honoring humanity means accepting people as they are, no matter how severely disabled, as people of value and worth independent of their capability to communicate or their supposed “intelligence.”

If we cannot accept people where they are for who they are, we can not work with them to help them learn new skills. Instead, by cheating with facilitated communication, one is denying the person his autonomy, his chance to learn and grow at his own pace, to achieve his own milestones.

Endorsing facilitated communication is denying the disabled individual his value, his worth, and his autonomy.

What would you think if you really considered the implications of an endorsement of facilitated communication by a “disability rights advocate”?

Well?

 

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2 Comments
  1. usethebrainsgodgiveyou permalink
    August 6, 2011 11:22 pm

    I don’t know why your post made me think of Dr. Rimland, but it did. I became aware of the battle he fought with the psychiatric establishment to eradicate the erroneous thinking of one Bruno Bettleheim. He began the ASA from my understanding. Yet, in his later years he seemed to become totally wrapped up in woo, so much so I just had to quit looking towards his ideas. It’s hard to judge a person for their wayward ideas, when their intentions speak so loudly of the good they have done. I was glad I read his book before I read Bettleheims.

  2. usethebrainsgodgiveyou permalink
    August 6, 2011 11:24 pm

    What I’m trying to say is, look to the total package…and then decide.

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