Daily Archives: 1 December, 2009

Poetry!

creative work

I’ve been thinking a lot about disability and creativity. Harnessing our energies and letting them into the universe, finding ways to express our experiences. I wanted to share a few poems I’ve found by disabled women.

“Naked, at 45” by Tracy Koretsky

Like pampas grass, whose blush fades, whose reeds
desiccate and snap, or like the house left to weather,
sinking, soft edges fraying…there is no fresh metaphor
for my body, aging. An ordinary body.

(Read the rest of “Naked, at 45”)

“You Get Proud By Practicing” by Laura Hershey

If you are not proud
for who you are, for what you say, for how you look;
if every time you stop
to think of yourself, you do not see yourself glowing
with golden light; do not, therefore, give up on yourself.
You can
get proud.

(Read the rest of “You Get Proud By Practicing”)

“every morning at 9 am,” by cripchick

i wrap my hand around her
skinny denim thigh
preparing myself for what will
come next

(Read the rest of “every morning at 9 am,”)

Do you have a favourite disabled poet or poem about disability?

Guest Post: Disability and Aging

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by Laurie Toby Edison and Debbie Notkin
Body Impolitic

Laurie: I blog with Debbie Notkin at “Body Impolitic” where we talk about body image issues in the broadest sense. I’m the mother of two daughters and I live in the Mission in San Francisco. I’ve published two books of my photographs: Women En Large: Images of Fat Nudes (edited and text by Debbie Notkin) and Familiar Men: A Book of Nudes (edited by Debbie Notkin, text by Debbie Notkin and Richard F. Dutcher).

Debbie: Along with my work with Laurie, I’ve has been an in-house and consulting editor of science fiction and fantasy at Tor Books. I help organize WisCon, the world’s first feminist science fiction convention,and I’m chair of the motherboard of the James Tiptree, Jr. Award, supporting science fiction and fantasy that explore and expand gender. My day job is as a contracts manager for a nonfiction publishing company.

We were very pleased to be invited to blog about the intersection between aging and disability, in part because we think it’s a smaller intersection than is generally perceived.

We are 67 and 58, respectively, and both of us are able-bodied, and active. Not because “70 is the new 50” but because our bodies work just fine.

The stereotypical intersection between aging and disability is the cultural expectation that they are the same thing. Whether people are saying “After 40, it’s patch, patch, patch” or just looking surprised if a woman over 50 lifts a 50-pound box, the common assumption is that age and disability are irretrievably linked, just as youth and ability are perceived to be irretrievably linked. While 75-year-old marathon runners and charmingly fragile disabled teenagers both show up as role models, old people who walk to the grocery store and people in their young 20s who are frequently unable to leave their homes because of chronic pain are equally invisible.

Living in our bodies is a day-by-day, minute-by-minute experience. In our experience, and the experience of our friends who are our ages or older, aging does entail additional maintenance time and energy. More small things about our bodies need attention than they did 25 years ago. We go to doctors more often. We have more routine tests. We have excellent memories, but we lose words more often than we used to.

These things, however, are not disabilities. Conflating age and disability is not only dishonest about the realities of aging, it is also disrespectful of the realities of disability. We can both go where we want to go, and get in to the buildings or transit vehicles when we get there. Neither of us is in the kind of pain (physical or mental) that keeps us from living able-bodied lives. To describe our minor aging issues as disabling would be to undercut and undervalue the real disabilities that people live with every day.

At the same time, the stigma of aging (which is partially fear of death and partially the culture’s definition that beauty must be youthful) puts a disturbing spin on diseases and conditions which are associated with aging. If someone over 60 has mild to moderate arthritis, almost everyone (including her) will view it as evidence of her body’s degeneration and eventual demise, while if someone under 40 has mild to moderate arthritis, it will be just something she has to live with, and not evidence that she’s falling apart. This distinction is so endemic in the culture that one of the major medical problems with aging is that people expect their aches and pains to be permanent, and thus don’t address them. One reason people disguise some of the things that happen to them as they age, just people who can sometimes disguise their disabilities, is that we are treated so differently in the world if we tell the truth about our bodies.

As fat activists, we’ve known for years that a fat person should always ask a doctor “What do you advise your thin patients with this condition?” Similarly, an older person should always ask a doctor, “What do you advise your young patients with this condition?”

Do disabled people experience the flip side of this stigma? Not being disabled ourselves, we can’t speak to that, but readers of this blog surely can. We’d like to know: Does being disabled sometimes get transformed into being treated as if you were aging? And if so, how does that work?

***

It comes down to rejecting stereotypes: the two stereotypes of aging are the ever-increasing decrepitude and incapacity on the one hand and the cheerful, active grandparents in the Depends commercials on the other hand. Like stereotypes of disability, or of women, or of people of color, these are not true. The truth is much more layered, complicated, and different for every individual.

Recommended Reading for December 1

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Disability 101: The prison of ‘special’

Society expects that all people with disabilities will be loving and joyful and cooperative and that our very presence will bring inspiration and hope. That is our role. Everyone around us can feel good because of our loving presence.

Bull hockey. It is our prison.

We are not allowed to be contrary. We are not allowed to formulate an opinion that might be controversial. We are not allowed to protest. We are not allowed to complain.

No seat for disabled students on AMS Council [University of British Columbia, Canada]

Arts representative Matt Naylor explained that he opposed the motion partly because he was concerned that creating the seat would be out of line with the faculty-based system of AMS Council. “Creating any kind of non-voting seat for a specific constituency that isn’t one of the faculties has a lot of problems. We, as faculty representatives, should be the voice for all of our faculty, and we should be considering what is best for the society holistically,” he said.

“Creating special seats for special groups specifically dissuades that because they are responsible for articulating a viewpoint, and not articulating what they think is best for the entire society, so it creates a really fractious system.”

Naylor added that problems regarding representation lie in representatives’ engagement with their faculties, and not necessarily the structure of AMS Council. Councilors should make a larger effort to engage their constituents to make sure everyone’s voices are being heard.

Disability Fail of the Week

I’ve only ever used a wheelchair for a few weeks at a time, but I have made extensive use of walking aids like crutches and sticks. You have no idea of the panic that used to come over me whenever someone took my crutches away, saying, ‘I’ll just put these over here, out of the way. Just ask me when you need them.’ Because no matter how helpful and well-intentioned the person, taking my walking aids away took away my independence; my autonomy as a person. Without them I might as well have been tied to whatever chair I was sitting in. Taking my walking aids away made me dependent on THAT PERSON, and if they left the room or were busy or distracted (because this was most often said by a teacher in a classroom setting) I was left immobile and helpless. And yes, from time to time we all find ourselves in situations where we’re dependent on others, but for disabled people dependence is so often all that’s expected of them, so often the norm, that any time someone takes away some of their hard-fought-for Independence, it’s that much more hurtful. It’s bad enough when you’re prepared for it – when you’ve made the conscious if reluctant decision to trade a little of your independence for someone else’s convenience. When it’s unexpected, sprung on you because ‘those are the rules’ that can’t possibly be modified or tailored to your individual needs, it’s unbearable.

Not Taking Care Of Yourself

When you’ve been been taught thoroughly enough that you’re Just Not Trying Hard Enough by people sufficiently different that they cannot tell when you are putting in insane amounts of effort, you may start believing it. You may have trouble telling what your own limits are, much less working out a more suitable way to approach things based on how your brain really works. You may feel like you’re Not Really Trying up to the point that you collapse.

This is exactly what got my mother (not on the Spectrum, but not neurotypical either) into the state she ended up in. She felt compelled to ignore any kind of limitation–including chronic pain from undiagnosed bone cancer–until she just collapsed. Between years of getting dismissed by doctors, and refusing to see that she had any limits whatsoever–which also helped keep her from getting the care she needed–she spent years with a very poor quality of life, then died at 60. That really opened my eyes to the fact that I was running breakneck down the same path, and it scared the hell out of me. Especially since I’ve got the same kind of high pain tolerance, and my reactions are similarly atypical.

Denigrating Self-Diagnosed People Means Denigrating All Of Us

In certain circles of the Internet, it’s become fashionable to make fun of people with “Ass-burgers,” particularly those who are self-diagnosed. (I prefer to use the term “self-identified,” and will be using both terms here.) One needn’t look any further than various snark communities and “humor” pages. When called on their ableism, people who make these kinds of remarks tend to defend themselves by saying something like, “Oh, but I don’t mean to make fun of the real Asperger’s sufferers! I’m just talking about the people who self-diagnose just to have an excuse to act like a jerk.” Leaving aside the obvious ableism directed towards officially diagnosed people–you know, we “sufferers”–there are numerous other problems with that formulation, which I’ll try to cover in this post.