You Have No Voice

It's been a while since I've written about something I've read over at the Age of Autism blog. Frankly, I haven't frequented it nearly as much lately, partly because they have steadily drifted more and more into the fringe, with posts that simply boggle the mind. I will readily admit that I do admire the passion that they bring to the table, but that is no justification for the vitriol, misinformation and outright quackery they frequently promote. What drew me over there this morning was learning that an autistic adult, writing under the 'nym Autistic Lurker, had made some comments there and, as is usual with the AoA crowd, getting piled on, criticised and accused of not being who they said they were. This was on a post by Dan "I can't find the Amish autists" Olmstead titled The IACC (I Am Completely Clueless) Meets Again . The post basically amounts to a diatribe about how the Interagency Autism Coordinating Committee is a horrible bureaucracy (granted) that is wasting its time and money following scientific evidence rather than, as all the folks at AoA just know is true, doing research proving that vaccines did it.

If you're interested in a long, long wall of text that amounts to, "Why won't you do what a very small portion of the autism community wants you to do!?", click on the link above and take a gander. I'm not going to go into detail about it. Rather, I'm going to talk about one of the comments on the post. It's a comment that, when I read it, I was, quite literally, stunned. For several moments, I could do nothing but stare at my monitor. This was followed in quick succession by feelings of disbelief, disgust and outrage. The comment encapsulates the derogatory view that, it seems, many in the AoA echo chamber have of disabilities in general and autism in particular.

The conversation had turned to who was a legitimate stakeholder, with one commenter declaring:

[autistic adults] do not serve a place at the table when they call themselves the 'primary stakeholders' in the debate on relieving, improving autism symptoms. The primary stakeholders would be the kids who can't actually speak (even with assistive devices!), the kids who bolt, the kids who wander, the kids who can't toilet themselves, the kids who have sensory impairments and pain that causes them to scream and wail.

To which another autistic adult, "M", responded that just because autistic adults are seeking assistive efforts, rather than a "cure", for autism doesn't mean that they cannot be stakeholders in the conversation, too. M brought up the example of people in wheelchairs and how they focus on addressing access barriers, for example, rather than stem cell treatment or robotic suits to cure their inability to walk. M asks, "Does focusing on access barriers rather than cure make a wheelchair user less of a stakeholder in discussions re physical disability?"

It's a valid question. In the autism discussion, there is no "I'm more of a stakeholder than you". Everyone has an equal seat at the table, or should. But not everyone shares that opinion; certainly not the AoA crowd. Which brings us to the reason for this whole post. An individual going by the 'nym "Taxpayer to Do-not-cure-my-autism brigade" wrote (in case it goes down the memory hole, this comment was up as of July 12, 2012 at 2:30pm):

You have no voice.

The overall message is hateful, but those last two sentences are what really got me:

unless a disabled person is financially and physically independent they do not have moral right to refuse a cure or treatment. And they especially don't have any right to sit on a panel that was created to COMBAT that disability.

Let that sink in for a moment. Think about the broader implications of that statement. If you are financially or physically dependent on others, you have no voice. You have no say in what is done to you medically. You have no say in what legal efforts are enacted with regard to your condition. You have no say in how to make it better for you to become independent. But don't worry, "Taxpayer" knows what's best for you. (Of course, in a discussion about a U.S. committee, Taxpayer's name links to a U.K. biomed organization and is therefore, presumably, not a U.S. taxpayer. But we'll ignore that for now.)

There are some questions that come to my mind, but apparently either did not occur to or were ignored by Taxpayer. First, how do we determine whather or not something is a "cure" or "treatment"? Who decides? What are the criteria? Does that include the untested, dangerous crap pushed by many in the biomed/alt med sphere, like Boyd Haley's industrial chelator or bleach enemas?

Taxpayer is also saying that if a person has a disability and are not financially or physically independent, they have no "moral right" to refuse a cure or treatment. Keep in mind that his comes out of the same community that is all up in arms about school vaccination requirements being violations of their rights, claiming that it is a forced medical procedure. Let's take this argument to a broader scope. Someone who suffers from mental illness could be forced to take psychiatric meds or even be locked up for treatment in an asylum against their will. If someone is in a wheelchair, they can be forced to undergo a dangerous surgery that might have only a small chance of allowing them to walk again.

But why limit it to disabled people? Why not say "unless a person is financially and physically independent they do not have a moral right to refuse a cure or treatment"? What is it about disability that takes away the right to refuse treatment? There is none. And, with no distinction, my rephrasing would be perfectly valid. So then we can ask further, does this mean that, in order to "cure" a person of their financial or physical dependence on others, we could, say, force children to work? This may be an extreme example of how ludicrous Taxpayer's statement is, but it is a legitimate criticism.

Finally, denying those affected by a disability a say in how research and resources should be directed? Seriously? What utter arrogance to presume that you have a greater say in the matter than the person directly affected, simply because they are unable to exist independently! To deny that person a voice!

Taxpayer appears to be focusing on the name of the law that created the IACC, the Combating Autism Act. More specifically, the term "combat", interpreting it as fighting against, defeating and eliminating autism. But that is not what the law says (PDF). The act repeatedly includes research and information on support services for individuals (both minors and adults) with autism spectrum disorders as part of the mandate for the IACC and NIH. It does not limit the activities solely to a "cure". Finding a cure for autism, if it is even possible, is many, many years, if not decades, off, even if all available resources went into just that effort. But that finer detail is missed by Taxpayer. And what is to happen to all those on the spectrum, and their families, in the meantime? Should the IACC not support and advance efforts to support them? Should they not bother about making insurance companies cover science-based education and treatments? Need respite care? Sorry. We're busy working on a cure. Ways to deal with self injurious behavior? Sorry. Still looking for a cure. Wandering? Deal with it yourself; we're working on a cure. Ways to improve diet? Nope. Too bad. Gotta find that cure. Taxpayer said so.

This attitude is, thankfully (hopefully?), not commonplace among the greater autism community. Comments like Taxpayer's are absolutely disgusting and serve no one. They are certainly not representative, nor do they have the interests of autists and their families at heart. Frankly, I'm rather shocked that Kim Stagliano and the other editors at Age of Autism let it through moderation. This person should be roundly condemned, even by the regulars at AoA. Ten thousand words would not be enough to express my feelings on this. For shame, AoA.

Edited to add: Sullivan at Left Brain/Right Brain shares my disbelief at Taxpayer's comment.