Jenny McCarthy & Autism Part III: Spokesperson

This is the third and final part of my discussion about Jenny McCarthy. Part I was If We Shame Parents Enough Maybe Autism Can Be Cured, and Part II was Let’s All Be Normal (Acting).

Writing this last post has taken me a very long time, both because of my anger at the way autistics are talked about rather than talked to, or with, or given the opportunity to talk for themselves; and because I keep going over what I have to say here and wondering what makes me think I’m qualified to say it.

I’d like to go back for a moment to the article that started me on this: Jenny McCarthy says her son Evan never had autism.

Actually, let’s just go back to the final sentence: “And though her son may never have had autism, Jenny insists, “I’ll continue to be the voice” of the disorder.”

The way I see it, one of two things is true:

1. Jenny McCarthy cured her son of Autism.
2. Evan never had autism in the first place, but may have had another syndrome, or have been developmentally delayed and “caught up”.

In either case, Jenny McCarthy is not currently the mother of an autistic child.

Tell me – why is Jenny McCarthy the “spokesperson” for “the disorder”? According to her no one in her personal life has it.

Not even delving into the bit where it’s incredibly different to be speaking for and about those who live with autistics and those who actually are autistic, I’m not entire certain what insight McCarthy is offering anyone. The idea that autism is like your child’s soul going away? That the best metaphor for autism is a bus accident? She describes a diagnosis of autism as the worst thing that could happen, and she’s going around and doing the talk shows and is the “spokesperson for the disorder?” How does that even make any sense?

That’s why this post has taken me so long to finish. Every time I start it, I wonder why the hell I’m writing it, instead of pointing people towards the writing of actual autistics.

[Here is a tiny sample:

Just a tiny tiny sample. Each one has a blogroll. There are lots of autistic bloggers, including kaninchenzero and s.e. smith here at FWD. This tiny sample is just meant to be that. I encourage people to leave more links, including to their own blog, in the comments.]

The Times article argues that Jenny McCarthy peddles hope.

Well, here’s my hope: That in the future, autistics will be invited to speak for themselves.

11 Comments

  1. This. So much.

    I hate it when people without disabilities claim to be “the voice” of whatever disability. How about letting people speak for themselves?

    (Says she who is looking for a book on adolescent bipolar disorder written for actual adolescents with bipolar disorder. Granted, I’m 18, so I’m an adult, but I relate more to stuff about teenagers than things written for/about people in their 30s and beyond.)

  2. Well said!

    Have you seen this? Told me a lot I didn’t know.

  3. Although I understand your point that McCarthy is not a good choice for a “spokesperson” for autism, I believe it is important for family and friends of people with disabilities to speak out against any injustice they may see and, in this way, act as advocates. I myself an disabled due to fibromyalgia and chronic fatigue. However, my mother has been disabled due to bipolar disorder for over 20 years. If I myself were healthy enough, I would become an advocate for those with mental illness, who, as many of you know, are marginalized by society. Of course, it is vital that society listens to people with mental illness about issues surrounding their conditions, rather than rely solely on hearsay. However, I see no harm with other concerned citizens speaking up.

  4. But it’s also important to understand that the family members of PWD can best speak to their experience as family members. Sadly, though, the voices of family members are often prioritized over the voices of people with disabilities in the mainstream media, and in certain activist circles.

    I think it’s important for folks who are allied & family members to speak out (certainly I write a lot about accessibility issues of wheelchair users, since my husband is a wheelchair user), but I think it is *more* important to focus on, and trust, the voices of people with disabilities themselves.

  5. This whole series has been great, thanks.

    No one’s saying that non-disabled family members shouldn’t do any advocacy, but I think most PWD would prefer that they do so as allies. That means not using (or adhering to) problematic concepts such as “speaking for people with…”

    In autism I think the privileging of presumably NT parents is particularly problematic because, hello, there are plenty of autistic parents with autistic kids. Yet their voices are lost among NT parents claiming to have “cured” their child.

  6. Oh, and I think that the reason why the media doesn’t seem to call McCarthy on the incoherence/inconsistency of her story is because of the prevalent idea that being a parent to a child with a disability makes her such a Special Person that almost anything she says about her personal experiences is beyond reproach or questioning. For most other stories (I’d like to think) there would be at least some journalists questioning the obvious contradictions in what she’s saying.

  7. Yeah, and indeed there is a huge problem with organizations by family members of people with mental illness. Like NAMI. That can be incredibly oppressive of actual people with psych conditions. Sane problem different impairment category. Lots of damage done.
    .-= Amanda´s last blog ..What I mean by “beneath” words. =-.

  8. Thank you for this post.

  9. And a number of us read and comment here.

  10. To expand on what Anna said: It can do rather a lot of harm when family members’ voices are centred and actual autistic (or whatever disability) people’s voices aren’t heard. This is the status quo with autism “awareness” — groups like Autism Speaks occupy nearly all the space available. And what Autism Speaks says about us is vile. Their core message is autism — our autism — fucks up their lives. Because media access is finite and biased (and access to funding even more difficult to come by) currently non-disabled advocates crowd out disabled self-advocates. Even the best-intentioned of them do harm simply by being another barrier to access. The worst do active harm by not only denying us the opportunity to speak for ourselves but by giving strength to bad information and negative perceptions of us.

    Family members and other non-autistic people might have a conceptual model of autism as an overlay that warps the person we really are. People who want cures — and there are some autistic people who want a cure for themselves; we aren’t monolithic any more than any other population — believe if the autism were taken away we would become more ourselves. (This is the charitable version. The less charitable version is the first paragraph.)

    Most of us who live with autism by actually having it tend to perceive it as a component of our identity. It’s a rather large component of our identity as autism is a mode of cognition. It is at least as pervasive and defining as sexual identity: If it were taken away we would be someone else. And it is all too likely that any ‘cure’ would not be an actual treatment for people with autism spectrum disorders but a way to prevent autism by genetic testing in utero and selective abortion much the way foetuses with Trisomy 21 are aborted at a rate of somewhere around ninety percent when diagnosed in utero. (They’d have had an unhappy life anyway, says the rationalisation.)

    Centring the voices of family members leads to campaigns like Bring Change 2 Mind where the normal people get t-shirts that identify them by their relationships. The ill people get t-shirts that label them as their conditions. A person with schizoaffective disorder is labelled ‘schizophrenia.’ A person with post-traumatic stress disorder wears a t-shirt with ‘post-traumatic stress disorder’ printed on. They aren’t people; they’re diagnoses. We don’t know the ill people’s relationships without the normal people being centred.

    These are not abstract matters; these have potentially lethal consequences. Because white voices are centred in mental health professions non-white people — especially black people in the US — are more often given scary labels like schizophrenia where white patients presenting with similar symptoms and case histories are diagnosed with less scary mood disorders. They are labelled as violent when they are not. Because male voices are centred women are more often diagnosed with personality disorders than with trauma disorders. Because het/cis/binary voices are centred variant sexualities and gender identities are labelled as pathological.

    Because neurotypical voices are centred autism is portrayed as something monstrous evil irredeemably destructive something kin to demonic possession. Because neurotypical voices are centred it is perfectly acceptable for autism advocacy groups to advocate for our genocide.

  11. My daughter’s autism spectrum diagnosis was one of the best and happiest moments of my life. After years of watching her be unhappy and fighting with school officials because of her strange behavior and visiting one expert after another with no results: we had an answer for where the disconnect between her and society began and we had a set of tools to help her be happier. Also, I finally could force her school to accommodate her needs. I love her just the way she is and I only want to help her change to the extent that it improves her quality of life by her standards.

    Why would anyone be devastated by the diagnosis? Isn’t the devastating part the unexplained symptoms and not knowing how to help your child? The diagnosis, if accurate, is the begnning of real hope.