“Leah Jane is an Über-liberal, nerdy, feminist, American-Canadian, secular humanist, skeptical, pansexual, overeducated, intellectual, philosophical, artistically inclined, white-tea drinking, loudmouthed, agnostic, politically correct, mordant, autistic Jewess who likes to draw, write poetry, study languages and smell flowers. She runs her blog, The Quixotic Autistic as a way to cope with a world that seems to want nothing more than for her to speak, but tells her to be quiet and let the neurotypicals talk when she tries to.”
Today, being the usual news hound that I am, I stumbled upon this story on NPR:
The main focus of the article was on the bacon, of course. We are living in the culture of bacon mania, and the bacon related products available, bacon soda, bacon shrimp, bacon egg cream, deep fried bacon…. You get the idea. Two, count ’em, TWO sentences were devoted to the charitable intentions of Bacon Palooza, and if you’re seeing me write about it, you can already guess what the charitable cause was: Yup, autism. Specifically, to “raise money for kids with autism”.
Well, that’s great! They can buy new horse dolls, a new Thomas the Tank toy (I personally want Hiro, the first Japanese one) Wait? What’s that you say? It’s not actually going directly to kids with autism or their families? According to the website, the charitable proceeds go to unnamed nonprofit schools in the NYC area, and there is no list of schools in NYC area that will receive the donations, only to say that any one that is not fully nonprofit will not be included.
Now, I tend to be skeptical of all autism-related charity work covered in mainstream media. Most of the time, it ends up going into the yawning jaws of Autism Speaks, an organization that puts the P in problematic with their pity-based fund raising and having only 7 cents of every dollar raised go towards assisting autistic families. The My first gut instinct upon any story related to autism is to immediately check out where the funds are going, to reassure myself that it’s not Autism Speaks, Defeat Autism Now, or Age of Autism getting the money. This first test was passed, so I let out my bated breath and relaxed…. But then realized my brain wasn’t done overthinking it. A few things were still bothering me, big time, so it’s time for me to address it before the party hats and bacon themed party favors are broken out.
I don’t have a problem with the nature of the fundraiser. I’m not the biggest fan of bacon, being an on-again-off-again vegetarian and a general worry wort about blood pressure, nitrates, all that good stuff. But I am not an anti-bacon crusader, and don’t mind it being used to promote charitable causes.
But in this case, as evidenced by my need to google and double-check the sources of the charity and where it planned to send the money, the fact that this was all about OMG bacon so hip and yummy, the food of the geeks and hipsters!!1 overshadowed the charitable cause itself. The word “autism” was mentioned twice in the entire article, once at the beginning, and once again at the end. There was no information given about how the money would help the children with autism in the entire article, or even what autism is.
By now, the public is probably well aware of media depictions of autism, with the number of diagnoses going from 1 in 150 to 1 in 110 and growing more considerable with every press release. But there’s still very little public knowledge about what autism is, and what people with autism need in their lives to thrive and flourish in our communities. It’s still mostly “Oh, that’s the kids who flap their hands and can’t talk, right?” or “Oh yea, I saw a special on Oprah about it, isn’t it caused by vaccines?” So it goes. But when you start talking about stimming, or the pros and cons of ABA, or services for adults on the spectrum, you’re treated to a blank stare.
I guess we’re not as cool and important as bacon though. Fair enough. People just can’t get enough of bacon-flavoured vodka, even if it means giving up space in the article to talk about how the bacon will be beneficial to those on the spectrum.
Another thing which irked me in the extreme was the focus on kids with autism. Remember how I said that this was going to schools? Well, that’s fine and dandy, except for the fact that this does exist in a culture where adults with autism are either ignored or stigmatized out of existence, and very few charities ever pay attention to the need for funding and programs for adults on the spectrum. Whatever’s to blame for this, whether it’s a different set of attitudes between how adults and children are perceived, the burgeoning number of new diagnoses of children, or something else I have yet to dream up, I don’t care. It’s enough to make me feel like the day I turned 18, I stopped being relevant to all these people who claim to care about the well being of people with autism.
People with autism do not suddenly turn into neurotypicals when puberty or a particular birthday comes around. We need support and services just as much as children do, if not more so, because many of us (in fact, over 90% of us) are unemployed and do not/cannot depend on our parents to support and guide us. Why are we not focused upon once in a while when there’s a charitable event for autism going on?
I could go on all day. I could talk an ear off about my negative opinion of separating children with autism into specialized schools, since it makes autism mysterious and unknown to neurotypical children more than if they were to learn side-by-side with aide support, or how tacky I think it is to throw charity events and pat ourselves on the backs while failing to address genuine inequality in the treatment of non-neurotypical persons both during and after childhood, and how the problem of lack of funding for services and families with autistic individuals goes beyond what money spent on fatty pork products can fix.
But there’s only so much I can say. I suspect if I mouth off anymore, I’ll end up with a piece of bacon stuffed in my mouth to keep me quiet. I’m not very kosher, but I’m one hell of a kempfer.