Laurie Toby Edison

Photographer

Our Big Old Crippled Crazy Bodies Are Political

Debbie and Laurie are delighted to have Liz Henry guestblogging here!

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The first time I began to identify as disabled, I learned a little bit about the medical industry and politics, and become a bit more politically radical.

People with spinal cord injuries in the U.S. go through hospitals and rehab, where they meet other disabled people and if they’re lucky come into contact with some of the ideas of empowerment, activism, and independence from the 60s and 70s. Since I ended up in a wheelchair through more of a nebulous possibly-neurological problem, I didn’t have that background. I was helped greatly by contact with the Disabled Students’ Union at a community college and by reading the magazine Independent Living. The NOT-empowering model of disability is to think of people with disabilities as helpless and in need of charity directed by able-bodied people. Empowerment also means fighting a lot of societal message about “normal” bodies, and the ways people look at our bodies, which are sometime obviously different in appearance and ability. We have to fight those feelings in ourselves, and work not to internalize them. Instead, to move forward with positive concepts of disabilities, bodies, capabilities, and how to change our physical environments and our society to adapt to US.

These days, I’m on mailing lists and forums for various neuro problems. I see people getting good information and sometimes, catching that radical wave, especially in the disability blogging world. But there are some terrible patterns I notice, much stronger patterns.

– Many women spend decades bouncing from diagnosis to diagnosis.
– Any neurological or immunological problem that women often have is called a “garbage” diagnosis.
– Many people are told that “it’s all in their heads,” then put on antidepressants or more powerful meds for mental illness.
– Being fat means that most doctors will not look for, or treat, your health problem. Instead, they shame and blame over the fat.
– Doctors almost never take a person OFF a medication. Instead, they keep adding more to the mix.
– Family members commonly place their anger and sadness over their mother or wife’s illness onto her, blaming her for the illness, because of guess why, FAT.

I have abstracted this out of countless emails and forum posts that tear my heart to pieces, from women who are eaten with guilt and shame that they can’t do the laundry or cook or take care of their family enough. Their families are angry with them, and blame them for being fat. Their families, rather than helping them, or consoling them for the confusing round of doctors and pain, are angry with them for not fulfilling their housewifely and mom-ly roles.

Despite the fact that it is normal for our bodies as we mature to NOT look like we’re barely pubescent, rail-thin girls, the systematic lifetime shaming over body shape means that these women have extra barriers in life. They don’t expect decent medical care, or respect from doctors. Being fat, or considered fat, or considering themselves as fat, or all of those things, means they can’t even GET what passes for decent health care in the U.S. today. And their own families subject them to constant and intense emotional abuse.

Often, really, underneath, the doctors hate women, and think of them as crazy, neurotic, aging (which in women is treated like a shameful disease in itself) and too fat. They write women off, and give them garbage surgery and drugs to go with the “garbage” diagnosis.

I am realizing just the tip of the iceberg of how gender, sexism, disease, and fatphobia are linked.

The mailing lists and forums and blogs offer sympathy and empathy, as well as much practical advice and sharing of stories. But what they sometimes lack is political awareness. We need MORE continuity of information, building or synthesis of ideas, compared to what happens in the blogosphere.

Radicalizing yourself to body acceptance and the complete refusal of fat-shaming could save your life. This is probably true for men as well, but I’m thinking about women in particular here.

The Ashley Treatment and people’s reactions to it expose some of those issues. Ashley’s family justified what they and the doctors did, both because it would be convenient, and because they thought that not having breasts would make Ashley less vulnerable to rape. Do some digging and see what disabled people think of that, compared to what able-bodied people say. There is a strong undercurrent that making disabled people (not just girls like Ashley) physically small, and desexualized, would be just SO much more convenient for their family members. If you think on it, this is also a body size and fat issue.

Add race and class into the mix and listen harder to how people talk about the “obesity epidemic” and poverty and you may hear something that sounds awfully like the War On Drugs and its exacerbations of racism, and the institutionalization of racism, of the power of blame and shame.

Anyway, the Disability Blog Carnival is a good place to start to educate yourself about disability issues. Take a look if you have time. It can be very interesting to combine some of that knowledge with the body image politics of blogs like Body Impolitic. Reading in both those worlds has begun to teach me how to name a more complex problem of feminism than I’d been able to name before.

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11 Responses to “Our Big Old Crippled Crazy Bodies Are Political”

  1. Lisa Hirsch says:

    See, for example, the fibromyalgia article in the NY Times, which included a lot of “this isn’t a disease” commentary, and the letters in response, for an example of medical-system denial and what people who have the disease say about that.

  2. Penny says:

    Thanks for the shout to the Disability Blog Carnival! Last edition included a link to bodypolitic–I like finding the ways these worlds can inform and challenge each other too. Lots of common ground to explore. The next edition of the Carnival should be up this Thursday at RynTales.

  3. Penny says:

    Uh, I meant “body impolitic” of course–sorry!

  4. annaham says:

    This is a fantastic post. I will definitely be linking to it in my next links-roundup post!

  5. Lynne Murray says:

    I totally agree with Liz that some of the more strenuous “help” offered to a disabled person is a way of control not only of the person being “helped” but also of controlling the fear of the reacting person’s worst nightmare. “That could be me, so I’d better distance myself immediately, or at the very least put a barrier up to protect myself.”

    One thing I discovered this past year when I lost my primary client and had to scramble for anything to pay the rent, was how many people expected me to go on disability–and how they advised me to shred my life in order to do so. Age, weight, arthritis and RSI from 35 years of keyboarding make me not competitive in the places I used to look for work when things got rough. But what shocked me was when I asked around to see if anyone had any work, how ready some people I had worked with (or employed, such as my tax attorney) were to tell me essentially, “Go away, your bad luck may be contagious.”

    They also added advice about where I could go. Two of them seemed to enjoy suggesting I get rid of my cats (everyone I know is aware that my cats are my family, so that was sadism in action) so I could move into Section 8 Housing, go on welfare and crash on someone’s sofa until I could get disability. Totally aside from whether I ever do any of those things (so far, no), what most offended me was how entitled these acquaintances felt to solve my problems by dismissing me.

    It felt identical to encounters I’ve had with people who decided they were staging a much-needed intervention by saying: “I see that you are fat and for your own good I must tell you that your body is unacceptable the way it is. So go on a diet and don’t come back till you’re thin.”

  6. Liz says:

    Lynne: Yes, and it’s amazing how middle and upper class people don’t know that, in order to qualify for damn near any sort of help as a disabled person, you have to make no money at all, and have no resources, and give up quite a lot of control over your life.

    Also, when I *did* get disability it was about 4 or 5 years after I applied, and I only got it with legal help from an Independent Living Center lawyer who took a quarter of the money, and the money for something like 2 years of my disability was what… maybe $5,000?

    There’s no such thing as “help to tide you over while you figure out how to reorganize your life.” No… instead, to be disabled and receive any help from government, or disability agencies, it seems that you have to enter and remain in abject poverty, and agree to be a specially powerless disabled-people underclass.

    Some people manage it and make it work, with what I think are efforts that amount to a full time job.

    Recently there was a really good, long, comment on Pandagon recently from Leora, explaining her interactions with disability/medical “benefits”. I’ve read so many other stories… the requirements on people to be “homebound” are especially vile and amount to a life sentence of house arrest or imprisonment in an institution. I’m not even ranting here; it’s true.

  7. Stef says:

    Radicalizing yourself to body acceptance and the complete refusal of fat-shaming could save your life.

    Thank you for saying this. I do this as a matter of survival, but with all the fat-hating messages out there, and with well-meaning and caring friends lacking understanding of what fat people go through at the hands of health practitioners, I sometimes do it with a feeling of profound isolation. I really appreciate the reinforcement that (a) I’m doing the right thing and (b) it’s really hard to do.

  8. cripchick says:

    a friend and i were talking today about how much the ashley x treatment really sparked disabled people to action; i know a few people that actually started blogging because of it and organizations that got jump-started around it too. it should be interesting to see how it affects the direction of the movement and how people fight it, especially with new technologies and “cures” coming about every day.

  9. shiva says:

    Awesome post. I don’t think i’ve commented here before, but the reason i added Body Impolitic to my blogroll is precisely because of the ways i think all these issues intersect – and it makes perfect sense for the disability rights/acceptance movement, the trans/intersex rights/acceptance movement, and the fat acceptance movement to ally together under the same fundamental banner of acceptance of bodily difference and liberty of self-determination over one’s own body.

    (Also because, as a neurodiverse (autistic) person, who never had many of the assumptions that neurotypical people tend to have to be educated out of, i NEVER saw why “fat” should be an insult, or indeed anything other than a simple, completely morally neutral, description of the shape of a person, or why (what looks like) very nearly everyone in Western society is obsessed with not wanting to be or be seen as being fat… when, y’know, fat/thin is to me just like short/tall, blue eyes/brown eyes, whatever…)

  10. MLO says:

    You know, this really strikes a chord with me as a lot of newly diagnosed food allergics (yes, it is a disability) find they lose or gain a lot of weight when first adjusting their diet. As time goes by, their body readjusts to what its set point is – but this is often the first thing a new member of our community finds themselves commenting on.

    It is sad that they don’t comment on how they have energy, can breathe, are not constantly cramping in the bathroom, etc. No, it is all about how they are suddenly thin.

  11. Michaela says:

    See, for example, the fibromyalgia article in the NY Times, which included a lot of “this isn’t a disease” commentary, and the letters in response, for an example of medical-system denial and what people who have the disease say about that.

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