Month: March 2014

I Am Not A Disease

I was having a discussion on a Think Progress article about vaccine truthers and autism (there is a post coming about the anti-vaxx movement; I just have to marshal enough patience to write logically and not just keymash in sheer rage). The upshot of the article was very good. It suggested that if people are looking for causes of autism, they might do better to look at environmental factors instead of ranting about vaccines.

However, I took issue with some of the article’s terminology. The last sentence of the article reads, “That could have a tangible public health impact, rather than allowing conspiracy theories to overshadow the complicated issues at play when it comes to this disease.”

That word.

Disease.

Autism is, by dictionary definition, a disease. That’s true. The Oxford English Dictionary identifies a disease as “a disorder of structure or function in a human, animal, or plant, esp. one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.” Autism fits that definition if you accept the word “disorder”, which I will for the purpose of this argument.

However, as another commenter on the article stated very eloquently, we have to look at the social implications of the word “disease.” Let’s be honest with ourselves – when laymen use that word, they use it in a layman’s context. As something negative. As something to be eradicated. And when someone is described as “diseased”, they are no longer part of society. They are lepers. It’s okay to dehumanize the diseased, because in most cases, they wind up locked away, or dead, or in other ways no longer part of society.

The text of a Facebook-powered comment from a Think Progress article.

The text of a Facebook-powered comment from a Think Progress article which reads in part: “Gaslighting (that’s the SJW term) or strawmanning or autism’splaning (adopting another SJW term).”

And yet, when us “diseased” try to advocate for ourselves, we get charming replies like the one to the left. For those of you who don’t know, being accused of “‘splaining” something (I think it originally showed up in the lexicon as “mansplaining”, but I’ve also seen “whitesplaning” and “ablesplaining”) means that you are explaining something to someone who already knows in a condescending manner. The thing is, you can’t really do it if you’re not part of a majority. A person of color can’t “color-splain” anything to a Caucasian person; that would imply that the person of color held the position of societal power, and unfortunately, that’s not how it is. For this person to accuse me of “autist-splaning” took my breath away, because it’s blatantly disingenuous and just plain illogical, in addition to being rude.

It also, I admit, bothered me to be called a SJW (Social Justice Warrior). Social Justice Warriors are, frankly, insensitive jerks; they populate more of Tumblr and other social networks than I want to think about. The ones I’ve encountered have hair-trigger tempers, ready to jump down your throat the nanosecond you use a wrong term. I don’t want to do that, though I do want to educate. I’ve been made to feel like complete crap by SJWs too many time to want to do that to anyone. But at the same time, if someone’s going to get defensive the minute anyone even remotely tries to correct them, what the hell are you supposed to do?

If you read the entire thread of that article, I freely admit that I could’ve been more eloquent. Less ad hominem. (I’d rather be that than an SJW!) But my points are valid: Kristin Cavallari and Jenny McCarthy are hateful and dangerous, spreading misinformation about the effects of vaccinations and propagating the idea that it’s better to die from an easily preventable disease than be autistic. Autistics deserve respect and dignity; we are not diseased, and we are not some kind of plague.

The text of a Facebook-powered comment from a Think Progress article.

The text of a Facebook-powered comment from a Think Progress article which reads in part, “I’m sure you were treated badly by people. Get over it – it is part of our human culture to isolate those that are different.”

And then, of course, there’s the enlightened soul who posted this comment. “Get over it”? Really? In 2014? I should just “accept” that it’s human nature to treat the different like crap? I’m sure that’d be so much easier for people like this privileged fuckstick; he wouldn’t have to see anyone outside his comfort zone then. It’s people like this who make me want to be loud and annoying just to irritate him. If anything good comes out of this kind of ignorance, though, it does show me what I’m up against.

I’m not a disease and I’m going to make you see it.

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Some Days

Some days, your patience just runs out.

Some days, you aren’t in the mood to educate the twenty-third person who insists you aren’t really autistic, that you’re doing it for attention. Some days you’re over the ignorant person who sees you stimming and suddenly is done with their drink, running as if you’ll bite their neck and infect them with the scourge. Some days you give up, sure you’ll never find a job because despite your doctoral degree and sterling qualifications, no one wants to deal with your “quirks” and you can’t just become a Wal-Mart greeter because that long on your feet having to deal with people would cripple you.

Some days you see that another parent or caregiver has murdered an autistic, maybe killed themselves too. The comment sections on those articles are rough – if you look at the comments when a normal child is murdered, they’re united in throwing the parent into Hell (massive trigger warning for violence on that link!). But when an autistic child or adult is killed, you see apologism. They say “walk in the mother’s shoes” (massive trigger warning for ableism on that link!). [sarcasm] Cause killing us is a mercy, of course. [/sarcasm]

Some days you might go nonverbal – even us “high functioning” autists have those days. Some days your voice feels too small, so you don’t want to use it, or you feel too scared to even think about letting your little words fly against the overwhelming tide. There are other ways to communicate, but chances are, most people don’t know about them. There’s no money for AAC devices, for letter boards and iPads, for ASL tutors. [sarcasm] That’s not real communication anyway. [/sarcasm]

Some days you want to get involved, but can’t – because the leading organization in this country that purports to speak for us doesn’t want us involved. Autism $peaks has no autistic board members – the last resigned in disgust following Suzanne Wright’s Nov. 11 op-ed that described us as “lost”. We are not lost.

And then you see Congress “Combating” Autism. “Treating” the “national healthcare crisis.”

Has Congress “combated” anything you deal with on a daily basis?

I didn’t think so.

Don’t combat autism. Combat stigma. Combat fear. Combat prejudice and ignorance.

Combat those who think we need combating.

Because most days, I don’t have patience for that crap.