Sunday, March 17, 2013

Imagine this...

Imagine this: you are a constant target for hatred, and you are vulnerable, and it's not your fault at all.

Imagine that the government has the power to control how much money you make. So if the government spends too much, they might decide to cut your budget to just below what you can live on.

Imagine that your cultural identity was constantly used against you, and you weren't allowed to be bothered by it.

Imagine that your family could decide at any moment that they were tired of you, and send you to live in a home where you were likely to have your opinions dismissed, have every aspect of your life controlled by other people, be physically and sexually abused, or be drugged into placid compliance. And nobody would bat an eyelash. Nobody would speak out, even if they knew what was going on. The government and local authorities just looked the other way.

Imagine that based on your skills and deficits, or your personality, people complained all the time about you being allowed to work - even though you were good at your job and hadn't done anything wrong. And imagine that these people could actually decide that you had to work in a separate environment if it came to that.

Imagine that people tried to keep you or your children out of their schools and classrooms.

Imagine that every time you ate out, without fail, random strangers would offer dirty looks and snide comments. saying things like, "Those kind of people should be kept away, locked up, not be allowed in public."

If someone wanted you to be stuck at home for the day, or forever, or be locked in a closet, it would be really easy for them to do so. If everyone around you seemed to move faster, or speak more quickly, or allude to things you didn't understand at all - and they used these skills to trick you and manipulate you.

Maybe when you asked to be allowed on an airplane or a bus, people acted like you were being ridiculous, or called you a crybaby, or gave you ridiculous solutions that weren't even really solutions, like, "How far is it on foot?" or "Can't you just drive?" when they were neither driving nor walking themselves. People also constantly assumed that you had no dignity or privacy.

What if you were never taken seriously? What if you and your people were continuously abused, taken advantage of, exploited, and marginalized? The people you depended on could use your dependence against you, and you couldn't escape? What if someone took away your legs and locked you in your room? Imagine if people were offended by you just existing.

Imagine that out of all the people who made all of the decisions about your life - your income, your right to work in a mainstream setting, your right to education - none of them were really like you, or understood you. They didn't know anything about your people. They didn't even try. And everyone thought it was okay for you to constantly be at the mercy of people who didn't understand your culture. Imagine that everyone else held power over you.

What if this was your life?

You would protest. You would start a riot. You would move to Canada!

This is my life. I live my life knowing - expecting - that others will use slurs based on my identity as a disabled person, and I am supposed to be okay with that. That people will give me strange looks, or make snide comments, and I am not allowed to make a fuss. Somehow, I'm supposed to think I deserve it. Retards can't complain. Cripples can't pitch a fit. After all, they are letting us live here, right? Isn't that enough?

If my care provider (my mom, in this case) decided that she didn't want me around anymore, I would have no place to go, no job - no adaptive skills, which means job skills and life skills. This includes kitchen safety, cleanliness, hygiene, emotional management, not accidentally walking into oncoming traffic, not being financially abused, not being raped, and filling out applications, paperwork, rent stuff, tax stuff, job stuff, and whatever else I need.

I also would have no services for my disability. Why? Because according to the government, I'm not disabled enough. Oh, sure, I qualify for developmental disability services. But a person with a high IQ can't possibly have low adaptive skills, of course, so I don't qualify for SSI. And if you don't have SSI, guess what? You aren't allowed access to voc rehab (job skills), full access (care providers, life skills training, other services) and you're not allowed to move into a group home. Can't manage your own apartment? Oh, well, burn it down, then. Kitchen safety is overrated. You know, fire, pestilence, crap like that, not our problem. Can't keep a job? Oh, sucks to be you. Yeah, wish there was something we could do, but unfortunately... you don't qualify. The good news is, guess with no job, you can't pay for the apartment that you can't live in on your own. Whew! What a relief! Now you can live in squalor on the streets for free, instead of in a four-story building where you have to pay rent. We'd let you move into a group home, but, you know... you don't qualify.

There is no way around that for me. Leaving home = living hell.

Oh, they're also trying to rush me out of special ed. Darn us almost-disabled-but-not-quite-disabled-enough people who can talk and brush our own teeth, stealing all that government money. There's some law that I have to get all my credits within the first year if I want my standard (regular ed) diploma - and since they didn't really give me much in the way of transition services before graduation, I have... drumroll please.... diddly-squat life skills. Woohoo!

I guess I could just keep my modified (special ed) diploma. Then I would get all three years of transition services. Oh, but wait... that's right. If you only have a modified diploma, you can't apply for FASFA. Can't afford to go to college? Oh, well, you took the "special" route. No college for you, I guess. Also, some jobs won't hire someone who has only a modified diploma - such as crossing guard. Can't be a crossing guard if you're a speddy. My choice is diploma now, no transition; or diploma never, no opportunities. It's either live independently, or get my degree. It's either my future, or my future.

This is daily life for me. Power. Nondisabled people making decisions about the most important aspects of my life. Power vs. vulnerability. Me, having no options. Lacking equality.

Ability privilege - all the perks of being nondisabled.

This was, and is, life for the basement of horror survivors- locked in a basement dungeon, kept in attics, chained to boilers, defecating in a coffee can, naked, beaten, tortured and burned, with someone else keeping them in circumstances most people wouldn't keep animals in, so that they could steal their money. Unable to protest or escape because of their disabilities. Unable to have prevented being taken advantage of in the first place, because of their disabilities. Next time you feel like complaining about our government checks, or our jobs, or our education, or our existence, consider the obstacles that we face constantly, things that probably never even occurred to you.

Yes. We spend every day contending with power imbalance. Our lives are at the mercy of nondisabled people's opinions of us.

Imagine that.


  1. We have to do better by you and by all autistic people. Thank you for this.

    1. I'm glad my post moved you. Thank you for your comment and, more importantly, your commitment.

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  3. First off, this hits home, and VERY hard at that. While I'm self-reliant enough and have some "life skills" picked up here and there, I've experienced this "too smart to get support" issue for as long as I've lived.

    Unfortunately, our society is so stigmatized into believing that "different is bad" that we're just caught in a closed loop, with no support to "life skills" programs, slim-to-nil support with education, and absolutely no help negotiating personal issues or even day-to-day tasks.

    If only the educational system would actually produce skilled, educated tradespeople, instead of trying to craft "well-rounded" people for the general workforce who are--oftentimes--not well-rounded but also vapid, inconsiderate, and egotistical.

    Only under those circumstances would more attention be paid to people who need life skills, as oftentimes those people are passionate and have a will to learn, and thus could be taught those skills in conjunction with their education.

    When I'm old 'n grey, have built or upgraded all the railways I felt were needed, and hold a teaching job in the engineering department of an esteemed university, this is going to be my unspoken policy--assuming the primary and secondary education systems are as anemic as they are now, I would step in myself and provide them with life skills myself. That is my personal promise to help break the stigma and obstruction society calls "disability".

    I'd like to see anyone else who comments here, too, to come up with one little thing they would do to end the negative connotation of disability in their own little way.

    1. I'm very glad my post resonated with you. That is what I aim for. Please hold on to your dedication! :)

  4. Oh, this so hits home for me. I have never gotten to work. I have spent my whole adult life on gov't aid. I too have been ridiculed, and told i don't matter, that i am dirt, that i'm just a freeloader. I am always alone because most of my family will not acknowledge and accept me either.

    I am autistic, and i am 52 going on 53. I live in Central CA, and have lived and enjoyed living here my whole life, but guess what? I dream of moving to Rhode Island, because i hear they have all kinds of good services and healthcare there that i can;t get here. It is also pretty there. The only thing is they don't have the nice Meditterranian climate CA has. But at least i would have services there.

    It should not have to be this way for us autistics.

    1. I think I have seen one of your posts on Facebook, and one of my friends shared it. I'm sorry you're going through all that. I hope you can find services.

  5. As someone who doesn't understand, I'd like to.
    Reading this really upset me.
    I'd like to know HOW you can be so self aware and yet not have the skills to be self reliant? (Not being mean, just wondering)
    I'd hate to live the way you do, and I'm sorry that you feel so much uncertainty in it all. :(
    Hugs from Australia

    1. It's because IQ and adaptive skills are not the same thing. There are different types of cognitive abilities. Philosophy and introspection are completely separate from adaptive skills, executive function and sensory/cognitive processing. Think of Carly Fleischmann. She's severely Autistic and speaks by typing. Yet, she is quite intelligent and speaks a lot about her Disability and how it affects her. And honestly, I know you didn't mean to be hurtful, but I get a lot of garbage from people about knowing my weaknesses and being able to describe my condition, and I'm constantly being made to feel like my disability is somehow not legitimate if I can talk about it. It's like a person who can't draw saying "I can't draw." That doesn't mean they can secretly draw. It means they know they can't draw. But a lot of people "interrogate" me with questions meant to undermine my disability, as though to somehow discover the "truth" about my secret potential if I just "try" hard enough. I get grilled about the legitimacy of my disability by a lot of people who should be supportive - teachers, close friends, family members.

      Thank you for the (((hugs)))