Taken Over by the Fear

I have come to the conclusion that people who have not had a lot of exposure to disability are not just ignorant. I think that they are afraid of the disabled, and not in the way other people have said. I don’t think it’s a fear of the unknown or the ‘that could be me’. I think it’s because of the token factor.

Let me explain. In media that attempts to portray both the abled and the disabled, often there is one disabled character. The “token”. Except there isn’t just one person, one type of disability in the real world. There are as many, if not more, different types of the disabled than the abled. We work through it in different ways, and have different needs. This scares people because it means that there is not one fix-all solution.

In my battles with various disability resources my mom is often saying: “they probably don’t have many cases like yours”, which is true. I’m a product of the generation just starting to, and starting to be able to, raise their disabled kids to have the same expectations as the non-disabled.  I need help to make that happen, but not the sort of help they are used to getting. I don’t need the PCA/note-taker/tuition sort of help. I need the luggage-shipping/laptop/application fees sort. Unlike some of the others with disabilities, usually not physical, I cannot work and attend school. At the same time, undergraduate is not my end goal. I have more than that to give.

There it is. What I have to give. People with disabilities have things to give, the same as the non-disabled. The trouble is, the support to do these things is different for each person. A non-disabled artist can wait tables and then go home at night to create. Then they become a success story, or they fail and find a different route. But if you don’t have the physical stamina to do both, then you cannot do either. Social Security does not give the money per month that a minimum-wage, part-time job does. Even with Medicare, that’s not enough for a dreaming twenty-something, and so without finding their own way the disabled are not allowed this path. Oh no! one shouts. Taxpayer money should not go to people who may not succeed!

Maybe that’s it, then. Maybe many of the abled are afraid of taking a chance. The disabled take chances almost every day. Eventually you grow numb to the fear, even if you’re always afraid. And, if you’re like me, you don’t accept the contingency plan they give you, the one that is based around what you cannot do. You alter the one based around what you can do, combining what is possible and what is practical. You do this, in the hopes that one day they will stop being afraid and then you will be able to do what is imaginable. You tolerate the college disability coordinators who are better with learning disabilities than physical ones, and the doctors who are used to the ones who don’t talk back. You encourage the next generation, because eventually hope will win out.

And I’m not saying every disabled person has a talent for the arts, or is above average in skill. Not every abled person is, nor does every abled artist have the chance that they could have. However, they should have that chance, or be allowed to do what they can succeed in doing without question. That’s all I’m hoping for.

My mom says I’m not practical, but when I jump I usually land on solid ground. Maybe this dream will too.

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5 Responses to “Taken Over by the Fear”

  1. Meg Says:

    Yup. I’ve said this for years… disabled people are seen as an “Other,” which leads to the perception that we’re all the same because we’re all different (from “normal” people). And that false dichotomy of “same differentness” leads to fear when ABs actually interact with us and realize that our needs are not one size fits all… and that leads to us being robbed of chances, and working ten times as hard to get half the breaks. Most of the time I’m not too bitter about that… I think it just caught me offguard, moving from my teen years to adult. “The system” – IDEA, ADA, health care, etc, worked wonderfully for me as a kid – so wonderfully that I rarely thought about it at all. And then I aged out and all of a sudden encountered the attitude of “prove it (before we help you),” “grovel,” and “why should we help *you*?”

    The shame of it is that that societal attitude that makes it so hard for us to succeed is the same factor that’s preventing most disabled people in the US from ever *achieving* a widely recognized role model status. It’s not that we can’t do it… but trying to do it as a part of “the system” is difficult to impossible, so most of the disabled role models out there are people who came from affluent families who had the option of skirting the system when they needed to.

    Which means the rest of us have nothing but sheer guts and our dreams to carry us through.

  2. Danielle Lavigne Says:

    Perfectly worded. A+

  3. zissou delal Says:

    hi!
    I have just discovered you blog and was quite sad to see that you haven’t posted anything lately. I hope you are doing well!
    I have just been diagnosed with eds and I would be so interested in talking to you, I am just so amazed by your willpower and yess that all.
    best
    zissou

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