9:47pm December 10, 2011

I flinch sometimes when people try to defend people like me.

I’ve said a lot of times before how I can’t relate at all to “sibling issues” or any of the other normal ways people talk about being a family member to a disabled person. Possibly because literally every family member that I can remember right now, immediate or extended, is disabled, often in multiple ways. Not that everyone identifies as disabled, not that everyone comes from a culture that divides people up that way, but in mainstream Western culture, there’s no question about it. (Read The Bones My Family Gave Me for more information on how deeply this has shaped my worldview, and for more detail in general about what I do and don’t mean by this.)

Anyway.

So I have all these reactions to reading stuff by siblings of disabled people, parents of disabled people, etc. And I am often afraid to voice them because it feels like I’m treading on someone else’s sacred ground, and will royally piss them off for coming from what feels like a completely alien culture.

All these people out there seem to have this relationship to their disabled siblings that goes something like: “There’s a lot of things (mostly the things addressed by sibling support groups) that bother me about having a disabled sister, but pick on her or those like her and I’ll kick your ass because that’s just wrong.”

Is it weird that the last part makes me squirm even more than the first part? Even though I’m the first to say that disability-related bullying and abuse is fucking terrible?

IMPORTANT NOTE: The way I react to this is not uniform. There are people who say the exact words above and it does not bother me. My reaction is not to the words spoken, but to what I sense behind the words. Honestly, this goes for most of my reactions, but it really bears repeating here.

It’s so hard for me to put words to what is absolutely a gut reaction on my part. (And a gut reaction to what looks like another person’s gut reaction.) Especially when the other person’s gut reaction is, on a surface level at least, the “right” reaction. And when my gut reaction to their reaction is… well… revulsion, terror, and rage.

I know there’s something to my reaction though, which is why I’m bothering to write this despite what I predict some other people will feel about it.

There’s something in their response to people like me being treated badly, that comes from a view that there’s something inferior about us. This goes double for anyone whose reaction to what I just said is to put disabled people on a pedestal in some way.

Now I recall a mother I knew whose words clarify things a bit: She kept referring to developmentally disabled people(*) as “innocents”.

It’s that. It’s the idea that we are more innocent, pure, or defenseless than other people and therefore it is especially bad to pick on us because we can’t help ourselves. I see it all the time in online debates about the use of the word retard. People outright say that one of the biggest problems with the word is that the people it’s used against can’t defend ourselves. And they genuinely think they’re helping us when they say that.

I’ve spent my entire adult life and large parts of my adolescence in programs wholly or partly for DD people of all kinds. This means that I have related to other DD people, of all ages and abilities, in ways that many family members and professionals, sadly never get to: As people. As equals. As individuals. People that I like and dislike. Most intimate friends and worst enemies and everything in between. People who are loving and caring, hateful and prejudiced, and everything in between. Everything.

And I do find it terribly sad that so many of our family members will never know the many, varied, and above all, equal relationships we have with each other. That’s why we will often deliberately seek each other out even when we are not forced to spend time together: The rest of the world can’t see us the way we see each other. If there’s any tragedy at all in being disabled, that’s it. Not that we are who and what we are, not that some of us are in constant pain, not even that some of us die young… but that in many cases our own flesh and blood will never truly know us, because even if they love us(**) they can’t see past many of their preconceptions. I can deal with constant, severe pain – I have all my life – and even a potentially limited lifespan, but not being truly known even by your family is soul-crushing.

I very much wish we could all be to our families who we are to each other.

I very much wish that many of our families could move past the idea that we are innocent and defenseless.

I very much wish that our families’ reactions to bullying and words like retard came without that weird “edge” to their anger… that edge that seems to mean something important that I can only dance around in words but not fully express. Here are a number of ways people describe us that clue me in that there’s more going on than being justifiably offended on our behalf:

* We’re innocent. Sometimes we are even “innocents”.
* We’re defenseless.
* We struggle so much already, so why add to that struggle?
* The people being offensive just can’t see how many things ordinary people can do, that we struggle with or can’t do.
* They don’t live with disabled people so they don’t see how awfully hard life can be even without being insulted.
* We are the weakest in society.
* We are the most vulnerable in society.
* We are less fortunate than them.
* We can’t help being how we are.
* There but for the grace of God goes everyone-but-us.

I’ve seen all of those. And even when they’re not explicitly used, something about the “feel” of the response – the edge, the particular kind of intensity, slight variations in timing and tone, something else undefinable but definitely present – shows them lurking in the background. I could hear its presence even (actually, especially) if I couldn’t hear the words being used at all.

I can’t explain why that list above bothers me so much, either. I know people will read this and insist that one or more of those statements is true. For many of those statements, I completely disagree. For others, they may sometimes be literally true (for instance I am too physically weak to defend myself against an attacker), but most ways people use them convey something different and more sinister to us than the literal truth. Among other things, there’s pity in there, and as Dave Hingsburger says, pity is prejudice masked as sympathy. People who see us in the ways I described can’t see who we are, and it’s (unfortunately) really that simple. It’s a terrible thing to have a family that can’t fully know you because (paraphrasing Dave again, definitely follow the link for full context) what they see reflected in your eyes is their sad faces.

All I can say is… we really are far more interesting when you begin to know us as most of us see each other. And that’s probably the exact reason I flinch when I detect that undefinable quality in someone’s attempts to defend people like me. It’s because that quality tells me that we aren’t who we are, in that person’s mind.

(*) In the broad sense of the term: autism, intellectual disability, cerebral palsy, etc. But it wouldn’t have mattered if she meant it in a narrower sense, she’d still be wrong.

(**) Please, please don’t tell me that all families love their disabled children. All good families do. But other families relentlessly abuse and even murder us. Some abusive families still love, despite their massive flaws in carrying out that love. That includes parts of my family. But others hate. Truly hate. Hate that we exist, hate that we aren’t the perfect children that they wished for, hate that we take up time they’d rather spend on our nondisabled siblings. Hate.

I have family members – not immediate family luckily – who truly loathe me and I will never confuse that with love. One of my friends loves to remind people, speaking of “sibling issues”, that she is never offered support groups or supportive newspaper articles for dealing with the nondisabled siblings who relentlessly tortured her growing up when she’d done nothing to them. She ended up homeless because her parents hated her, and she’s not the only DD person I know whose family threw them out on the street after years of unrelenting abuse. There are plenty of families who love their nondisabled family members but do everything to remind their disabled family members that we are subhuman and only fit to die as soon as possible. Don’t ever tell me that all families love their disabled relatives. Just don’t. We have the horror stories to prove you wrong.

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