Vaccine Fear-Mongering Is Not Disability Activism

Thank you to the lovely Miss Crip Chick for alerting me to this story.

A media network which claims to be "for people with disabilities run by people with disabilities" has decided to take on the autism/vaccine issue in a podcast, and it isn't pretty. It can be found here and here. How bad is it? Well the podcast:

-Says that "vaccines have destroyed a generation"
-Cites Dan Olmsted and Jenny McCarthy as authorities, including the whole "Amish don't vaccinate and they don't have autism!" mythology
-Advocates "non-invasive" forms of chelation
-Fear-mongers about the "autism epidemic"
-Says that parents wouldn't want an autistic child because we adversely affect their "mental health." Also, we're very "unpredictable" and get set off by "unpredictable" things, which makes life too difficult for our poor parents. (Actually, it's called sensory overload and difficulties dealing with change.)
-Equates "learning" with autistic kids becoming more "normal."

And that's just in the first ten minutes or so. I didn't have the stomach to listen beyond that. For me, it's really disheartening to see such an ableist podcast from a source that's supposed to be by and for PWD (people with disabilities). I don't want to unload on the guy, but I do think he would do well to learn more about neurodiversity and the perspectives of actual autistic people. I encourage any readers interested to write him or comment.

Ableism in Inauguration Coverage

Like many others, I was heartened to witness President Obama's inauguration yesterday. I dearly hope that the new administration will bring about needed change in many areas of policy, including disability policy in particularly. Unfortunately, some members of the media used the occasion to promote the same old ableism. As Laura Hershey puts it:

I never thought I’d be sticking up for Dick Cheney. But his appearance at the Inauguration today, riding in a wheelchair pushed by several Marines, has elicited so many nasty, disabiliphobic comments, that I find myself… well, not exactly defending Cheney, but at least defending the dignity of wheelchair use.

There are many negative comments to be said about Cheney, most of them entirely deserving. But using a wheelchair is not a metaphor for something else, and there is nothing inherently undignified about it. Being Dick Cheney is undignified.

Follow up on Baron-Cohen

Given my recent criticism of Simon Baron-Cohen's comments on prenatal testing, I thought it only fair to link to an article posted yesterday in which he claims that his views were mis-represented. Despite my disagreements with Baron-Cohen on certain issues, I really appreciated these comments and basically agree with the sentiments behind them. Money quote:

People don’t have to earn their right to life by having the skills to make a contribution. They have a right to life. Period.

Amen.

Autistic Kids and Expectations

I highly recommend Lisa Jo Rudy's recent post, "Do we expect too much from our autistic kids?" The post has several excellent points about the various double-standards which go on with regards to autistic-identified kids as opposed to "normal" kids. Rudy writes:

Most of these kids, ages 6-12, had their noses buried in Gameboys or the equivalent. Few conversed. I said hello to one or two; none made eye contact and only one mumbled a return greeting. There was no possibility of conversation.

These typical kids spend virtually all of their time moving through a series of activities that are wholly planned and managed by adults. Any time that is not managed is spent in front of the TV or the computer, or on a cell phone. In general, these kids take ordinary classes, finish school when the school bell rings, take part in extra curricular activities of their choice, and have few additional demands placed on them - of any sort.

Amazingly, I saw no concern on the part of their parents that these kids were not making eye contact. No one seemed to care that they were not conversing. There was no expectation that they'd make their own beds or meals - or even speak on their own behalf to a clerk or waitress.

It's as though autistic kids are expected to be more "normal" than "normal" kids. True "normalcy" as defined by many behaviorist programs does not really exist.

Autistic kids, it seems, are expected to use every situation as an "educational" experience in Being Social and Being Appropriate--even though social situations cause us sensory overload and we are far more likely to have social anxiety, as a group. And, as Rudy says, most "normal" kids do not spend their lives Being Social and Being Appropriate. It is truly unfortunate that some autistic people face even greater social pressures due to their diagnosis alone, when the right response to autism identification would be to alter social expectations to be more autistic-friendly. Instead, it seems as though autistic kids too often get saddled with unreasonable expectations by anyone's standard. We typically need more alone time and more time to unwind--not less. Scheduling therapy session after therapy session often prohibits that. (Then, of course, there is the tendency to classify everything autistic kids do as somehow "therapeutic," even if it's playing legos.)

Autistic children are kids. Unfortunately, the autism "treatment" rigamarole too often doesn't allow them their childhoods.

More Baron-Cohen Shenanigans

I've critiqued Simon Baron-Cohen in the past, and I think it's time for another such post. Barron-Cohen was recently interviewed by BBC on the subject of prenatal testing for autism. Various notes from the article and audio interview:

-Joy Delhanty brought up the issue of genetic testing being used for "individual families," versus the test being "society-wide." I'm skeptical. With so much autism hysteria being whipped up these days, it's easy to see how people with no family history of autism whatsoever may demand this test. I also note that for Delhanty and SBC, mass availability of prenatal testing means society-wide testing. What about families' choice to not test? When women are pressured by their doctors to test, as is the case for Down's Syndrome, that definitely is not free choice.

-Accuracy of testing was not mentioned. This is important, since it's very likely that a prenatal test for autism would have a high rate of false positives and false negatives. There are, after all, non-genetic causes for some people's autism. (i.e. prenatal rubella). What might happen if an autistic child is born to parents who thought they had "screened out" for that? This may be especially relevent to families who have one or more autistic children already and use the test. I realize that it is a bit presumptous for me to comment on this, as a non-parent. However, the fact remains that families who specifically want a non-autistic child may very well end up with an autistic one, especially if it runs in the family, even with a (fallable) test.

Besides, any non-autistic child may still be(come) disabled either through birth or circumstance. Disability is a natural part of human variability. It's not going away anytime soon just because we have new, shiny technology. It is foolish to believe we can control the outcomes of our progeny, and I worry about an ableist culture which gives the false impression that we can.

-On a completely different topic, I notice that SBC is still clinging to the "nine to one" male/female ratio for Asperger's Syndrome. How does he account for the fact that the ratio is much lower for other diagnostic categories? Moreover, the feminist in me was simply screaming at this whopper:

And why, in over 100 years of the existence of the Fields Medal, maths' Nobel Prize, have none of the winners have ever been a woman?

How very scientific. I'm sure that has nothing whatsoever to do with social conditioning! SBC's "science" is, as I tried to show in my preceding post about him, rather dubious. He has a habit of assuming his conclusions, without utilizing proper scientific caution. As an autistic woman, I'm tired of this "expert" telling me that my mind must "really" be like that of a man. My brain's just as female as my privates, thanks. SBC's refusal to acknowledge autistics who fall outside his own stereotypes--women, talking autistics with learning disabilities, visual problems, dyscalculia, those of us who aren't math people--is grating. The spectrum may be "variable," but SBC represents it as male, math genius "aspies" on the one hand and nonverbal (and therefore unworthy, in SBC's view) autistics on the other.

-Which leads to SBC's problematic assertions about autistic "talents," as though "talents" and "contributions" are somehow the only things which justifies our existence. There are many "normal" people whose contributions to society are questionable at best--Paris Hilton comes to mind--yet their value is not contingent on "contributions." (Of course, the idea of "contributions" itself is highly subjective.) Mr. Barron-Cohen, many of us aren't particularly good at math or computer programming. Many of us may even seem to have no "talents" from the perspective of your closed mind. We do not need to justify our continued existence in the human gene pool. It's great that you're raising awareness of the ethical issues involved in genetic testing for autism. But I'm not sure I want this kind of "advocacy."