We Need to Talk About Fear

Actually, I need to be doing so many other things, but the topic of fear has been laid on my heart like a brick.

Fear as it pertains to disability is somewhat of a given. It’s fear of the unknown, It’s also fear of letting go of long-held and abided-by beliefs and stereotypes. It’s all-encompassing and ever-denied by many ablebodied people. And I want to talk about why it’s so damn prevalent.

My experience with people that fear me (and they exist by the truck load) generally shows up in one of 2 shitty ways:

1. The person straight up says, “Your disability scares/confuses me.” Other versions: “I’ve never had a friend in a chair before,” “I don’t think I can be what you need.”

2. The person says I’m awesome, that they won’t treat me differently, or pity me, or whatever, and then treat me differently anyhow.

These are umbrella generalizations of the way fear is communicated to me, but they’re good starting points. Both are awful to hear, in any form, and both speak to a much bigger problem:

An inability to ask questions.

As a society, we’ve started to put on big “accept-everyone-as-they-are” uniforms, These uniforms are one-size-fits-all and comfy as all get out. They’r less constrictive, and represent a common agreement among many of us to be less judgemental. But when it comes to disability issues, these suits fail us. They fit all wrong, taking in and letting-out in all the wrong places.

I can’t keep up with my own weird metaphor, but what I want to say is this–We need to do the leg work before we become accepting of disability. (ahahah, leg work. Disability. #ableistlarry expressions). How can we possibly accept without knowing exactly what it is we are accepting?

I recognize that it’s not for others to judge us, and that asking too many questions, or the wrong questions, exposes an entitlement on the part of the asker. But I think that our overall frowning on said questions has made way for deceit and confusing behaviour when people feel afraid of disability.

This means that day-by-day, people say stranger and stranger shit, to cover the things they cannot ask and mask the guilt they feel around being unable to accept parts of disability. “I don’t think I can be what you need,” (which is both presumptuous and sets a harsh boundary), is born of an inability to explore, perhaps a lack of want-to-know. The question, if it were able to be stated without fear might look many different ways, like:

– How the fuck do you get through life?

– So, like, do I have to help you with a lot, or?

-How severe is your disability?

As much as I roll my eyes at disability questions (can’t I just forget about it for like, one day?) I’d take this over the alternative. Because disability is not an abstract concept. It isn’t socially constructed as race is. There is a very real, pretty poignant difference here, and just as I deserve to be treated as a person, you deserve to know what being friends with me might mean.

Now that it’s finished, I’m not sure I agree with this post. Thoughts?

Having “The [Disability] Talk” With Kids

My friend Thom and I had just finished our weekly swim, and entered the spacious unisex change-rooms at the Y. When I say unisex, I really mean unieverything. One change-room that not only houses each gender, but also each age and family size, from parents with  kids to groups of teens that insist on changing in the open, despite obviously vacant private cubicles.

On this particular afternoon, we shared the room with a woman and child . Thom and I were chatting, when a little girl’s voice cut into our conversation.

“Why are they both riding those?” She asked, pointing hesitantly at our wheelchairs, and looking blatantly at her current caregiver for answers.

I smiled slightly at her cute curiosity and Thom and I continued our talk. I asked Thom to repeat himself, as he has a speech impediment that causes me to miss what he says sometimes. That, and sometimes it’s entertaining to watch him never loose his cool, in situations where most people would turn punch red and yell, “Bitch are you deaf?”

Thom started his sentence over, when the little kid interrupted again—

“Why does he speak like that?” she asked, looking at us and vaguely aiming the question in her gaurdian’s direction

The woman looked at us and smiled gently, as if to say, Excuse her, she’s little and knows not what she does.

“Why does he talk like that?!”the girl asked again, this time to the open air, because her guardian was barely acknowledging her question.

This is beauty of the developing child’s mind: they pass no judgement, only raw want-to-know.  The kid wasn’t saying, “What’s wrong with his words?” or, “What’s wrong with that girl’s feet?” She was only asking why. No preconceived notions. No  leading and loaded stereotypically-based questions. Just triple-distilled What’s up with that?”

Feeling a tinge of  sympathy for this curious child, I asked Thom if I could answer her question.

“Tell her I’m drunk.” He dared.

I promptly ignored Thom’s advice, approached the girl and smiled, “Hi.” I said. She smiled shyly and began to repeat her million-dollar question.

“–Because some people have trouble getting their tongues to move how they want them to, which can make it tough for their words to sound like our words,”I offered. I cringe now, looking back on it, at my use of us and them in my attempt to be simplistic for this kid. Hopefully she didn’t judge me for it.

“Oh. But why?” She asked again. The woman she had first aimed all her unanswered questions at seemed to come alive with a response:

“You know how you say marshmallow  like it’s marshtallow?It’s kinda like that.”The woman gave me a big, toothy, See?I’m-not-ignorant-after-all smile.

Image

And you thought their only function was to turn kids into The Devil’s spawn.

“Oh.”The girl’s big blue-green eyes blinked-in this new information, and she smiled at me, “Ok.” She then launched into a long story about snow, speaking mostly to the woman she was with, but checking every so often to see if I was listening.

Just like that this kid forgot  about difference. For now, our half-assed explanations were enough, and she could go back to discussing wintery white stuff in the excited way that only kids can, after four months straight of it.

This brief experience made me think about the way we discuss disabilities with children, and how much of an impact the implications of what we say must have on the way they come to understand physical differences. How do we explain it to kids when we barely know how to talk about it with each other? How do I say to a pigtailed 5, 6, or 7 year-old that, “I can’t walk because my legs don’t listen to me the way yours do,” without making disability sound innately negative? How do I, and everyone, work towards neutralizing notions of disability when it is So.Very.Ingrained as this sad, limiting, thing?

Hoohum, the questions without answers continue to multiply. Suggestions?