This is going to seem like an odd analogy, but bear with me for a bit and you’ll see what I’m getting at.
Like autism, asthma comes in a spectrum, ranging from people who cough a bit longer than usual when they get a cold and aren’t bothered otherwise to people undergoing transplant evaluation because of the severity of their asthma and everything in between. As a kid, I was on the severe end of the asthma spectrum. As an adult, I’m pretty much dead in the centre of it. Like autism, asthma often becomes evident in childhood, and like autism, asthma can cause parents trouble, heartache, and suffering on behalf of their kids. I have lost track of the number of times my parents found themselves in the ER at 3AM because I couldn’t breathe. It sucked for me, yes. But I’d by lying if I said I didn’t think it sucked for them, too.
Like autism, asthma has some stigma and prejudice to it. Not as much, to be sure (I’m unlikely, for example, to get arrested for public intoxication if I’m jittery from Ventolin, but that’s happened to autistic people for being autistic in public), but try to argue with me that there’s no stigma to asthma when I’m having a flareup at the gym and four different well-meaning condescending jerks tell me that I shouldn’t “let” myself have an asthma attack or that I need more willpower or what have you. Tell me that when someone tells me I’m using my asthma as an excuse the third time I have to go for inhalers the day after I get over a cold. Try to argue there’s no stigma when I have four chairs worth of elbow-room on all sides in a packed cafeteria because I’m daring to take my inhalers in public. Try to tell that to undergrad me when I got ejected from class because I was having a flareup and was coughing a lot (the prof refused to believe I wasn’t contagious and told me I should be home in bed. Now, I’d know to go to the accessibility centre to protest that, but I was ignorant of my rights at the time). Or try to tell that to kid-me when the teacher made her wait through an asthma attack till passing out because “If I let you go get your inhaler, everyone else will want to go, too.” There’s stigma and prejudice. That teacher nearly killed me because of it. Other kids have died from it.
But unlike autism, asthma awareness campaigns do not focus on the parents of kids with asthma to the exclusion of the kids themselves. They don’t focus on kids to the exclusion of adults (though, I admit, they do seem to forget that young adult asthmatics like me exist – it’s all children, teens and seniors in the majority of the ads). They don’t pretend that those with mild asthma aren’t asthmatic enough to need help or education, and they don’t paint asthmatic kids as a burden or a drain on society. Asthma awareness campaigns focus on lessening the stigma and removing the sense of people with asthma being somehow other or less, whilst also educating on the correct way to respond to attacks in hopes of preventing another Sam Linton. Autism Speaks, on the other hand, focuses on increasing the stigma and scaremongering for more funds.That’s not okay. ASAN and AAC have issued a joint statement, and the Autism Women’s Network has issued their own on the issue that inspired this post (short version: surprise surprise, once again Autism Speaks decided they have the authority to speak for people like me without our permission).
Leaving out my many and sundry other issues with Autism Speaks (and they are legion, including but not limited to: their support of child killers and attempted child killers, their erasure of autistic advocates, their support of abusive and harmful actions in the guise of “therapy”, their historical association with pseudoscientific movements like antivaxers and DAN, their current association and partnership with the torture-as-therapy-advocating JRC, and on and on and on it goes…), I have a Big Fucking Problem with how they collect their money. There are ways of raising awareness and funds without stigmatizing and dehumanizing those with a condition. They do it for asthma, for cerebral palsy, for Down syndrome, for cystic fibrosis, for MLD, and for dozens of other conditions, some of which, unlike autism, are progressive and terminal. Why isn’t Autism Speaks doing that for autism?