January 20, 2016
There’s a group of assertions that have become common, among a fraction of parents who, superficially at least, believe themselves to be taking an accepting approach towards their child’s autism or disability.
They’re not necessarily looking for a cure. They’re not subjecting their kids to 40 hours per week of repressive therapy. They’re not bemoaning their grief for the non-autistic child they lost or the tragedy that their family’s life has become.
They’re just really insistent that autism not be allowed to be meaningful to who their child is.
“But it’s not who he is. It’s just something he happens to have.”
“It’s just part of who he is; it’s not all of who he is.”
“It’s part of her but it doesn’t define her.”
“Autism isn’t him, it’s something that happened to him.”
Lately it comes to dominate discussions that aren’t even about person-first vs. identity-first language choices, so fearful is the notion that autism might have any sway in who a child is.
And in some ways, I am more frustrated with this variety of denialism than with the way more openly hateful outlooks of curebie parents. In some ways, I think the parents who far more openly hate their children being autistic are being more honest, as deeply unfortunate as I find their position, than the ones hiding fear and disgust behind “There’s nothing wrong with my child as a person; this is only a thing that they have. It’s not really part of them.”
“It’s not who they are.”
Because that would be the worst thing.
What if it is, though?
What if they can’t meet your demands that they cut themselves off from that much of their psyches? What if they can’t or won’t hack themselves up that way?
As long as it’s not actually who you are, isn’t actually de-stigmatizing.
Just as long as you can let us believe that this isn’t really part of you is not actually acceptance.
Just as long as it doesn’t have real consequences for how you have to live your life.
Just as long as it doesn’t affect you in any significant, unavoidable way.
Just as long as it doesn’t mean anything to you, let alone anything good.
Just as long as it’s fundamentally separate from you.
If it kind of sounds like “Love the sinner, hate the sin,” that’s because it kind of feels like it, too.
Being forced to hold something true and essential about you at arm’s length for years and years, being told that you’re not really the person you are, that the real you, the correct you, is someone who doesn’t move through the world the way that you do…that you are not really like this, it’s just something that you have….
(Let me tell you something about trying to do this. The horrible part isn’t that it can’t work; it’s that it can, for some amount of time, anyway. The result isn’t a person who isn’t autistic, it’s a person who feels like a stranger or a ghost in their own life.)
As long as your whole experience of the world—the way language and emotion, music and light, passion and movement, space and time work—isn’t really innately woven into who you are…
It’s a variant, not a repudiation, of who you are is not acceptable. You’re only a person if you aren’t like this.
“But it’s not who he is.”
How would you know? (How good were your parents at reading your mind, at knowing how you truly and deeply felt about yourself as a child? How right were your parents about who you’d grow up to be? How psychic about these things are parents, generally speaking?) Would she tell you? Would she have the words to? What expectation have you given her about how you’ll react if she comes to you and says “Yes, it really is?” Have you exposed him to the diversity of first-person viewpoints that would allow him to know one way or the other? Is he allowed access to autistic people who describe their own experiences in various ways? Different autistic people do have different conceptions of what autism is to them. Most say that it is part of who we are, but some don’t; the point is that we all, individually, have the right to make those judgments about our experiences and internal lives and descriptive preferences. Do your children not have the same right to conceive of who they are or aren’t for themselves?
What if it actually is? What are you going to do then?
January 9, 2016
As I see various reactions to things like Donald Trump’s proposal to ban Muslims from entering the country, requiring American Muslims to register and wear ID tags, or the attempts of multiple mayors and governors to exclude Syrian refugees from residence in their cities and states, it’s common to see comparisons between the prejudices underlying those proposals and those that preceded events like the Japanese-American internment of World War 2, or America’s refusal of Jewish refugees from Europe.
These ideas are gaining traction again, it’s said, because Americans don’t know our history.
Takei’s remarks here are worth watching, but I disagree with his conclusions that the problem is that we don’t know this history.
Most everyone putting this stuff forward, or backing the politicians who do, I’m willing to bet, knows about the Japanese-American internment.
It’s just that they have some kind of reason or excuse for why it was justified. Why the human suffering was regrettable, but the reasoning for it was basically sound. Or why maybe it wasn’t right, but it was an understandable reaction. Or why it wasn’t really that bad. Why people were lucky to be in our concentration camps instead of German concentration camps. Or why what they’re advocating now wouldn’t be really, really the same thing.
Or on some level, they think that people who maintain that it was wrong then and it would be wrong now can’t really be serious. That they’re just saying what “everyone” else actually thinks but won’t admit.
I really suspect that leaders who promote these policies don’t fully get that those of us who object to them aren’t just trying not to look racist or sound politically correct–that we really think with deadly sincerity that the protections of the Constitution and ideals of equality before the law apply to everyone. That it is wrong, across the board, to single out a group for stigma or retribution based on their race, religion, or national origin. (Aside from that it has never made us safer.) Always. Not “unless they belong to a group that enough people are afraid of,” or “unless someone else who looked like them committed a high-profile crime,” or “unless their culture is one we don’t understand or approve of.”
I don’t think we don’t know our history. I think a lot of people just believe that their own prejudice is better. This time, their threat perception is accurate. This time, it’s truly necessary. This time, we know who the real wrong group of people is.