Category Archives: identity

“Bad Activist” moments

activism, disability activism, feminism, gender, identity, mental health, resistance, social attitudes

I read a blog post recently by a woman with muscular dystrophy and her experiences going out to eat in restaurants. The author mentioned how wait staff rarely give her a menu, or give her a children’s menu instead of the standard menu. When this happens, she often just looks on with her mom’s menu rather than asking the wait staff to give her her own adult menu. She described that as a “bad activist moment.” While I enjoyed and appreciated the rest of the post, and marveled at the ableism she routinely experiences – wait staff giving her a sippy cup to use?! – the idea of “bad activist moments” particularly stuck with me.

A “bad activist moment,” if I understand it correctly, is a potential opportunity to highlight ableism, educate TABs on the abilities of a PWD, and instruct people on the correct way to interact with a PWD. It could also apply in other contexts – the opportunity to highlight and correct patriarchal or sexist behavior, or racist behavior, or ageist behavior, or any number of other discriminatory and oppressive behaviors. In this context, the person experiencing or observing the problematic behavior is a member of the class negatively affected by such behavior, but it could also, for example, extend to me as a white woman observing behavior that discriminates against Latinos.

I definitely think this idea has value and recognize that the term “bad activist moment” is likely shorthand for “an identifiable moment of opportunity for direct personal activism that I didn’t take” rather than a judgment on whether the person is actually at heart a good or bad activist. But I’m concerned that framing it as a “bad activist moment” suggests that to be a good activist, we must speak up and speak out Every Single Time we observe negative behavior, not just that affecting PWDs, but that affecting or oppressing any minority group or marginalized class. I know that I do not do this and if I did, I would likely suffer significant consequences. I feel I’m already on the edge of being characterized (and thus dismissed) as the girl who has a problem with everything and is hyper-sensitive on these issues and cannot in any way ever take a joke ever – and that’s with me pointing out about 1 in ever 10 problems I see. I worry that if I devoted more time and energy to those issues, I’d be pigeonholed as “politically correct girl” and nothing I said would be taken seriously or considered.

More seriously, though, it is infinitely more risky to raise issues of discrimination and oppression when you are part of the group that is being discriminated against or oppressed. Not only might this require someone who is “passing” to identify and out themselves, but explicitly claiming membership in the targeted group can lead to further discrimination and marginalization. In the racial context, it’s often characterized (and thus dismissed) as someone “playing the race card.” I’m not aware of a similar term in the disability context, but the trope of an “uppity” activist who “thinks they’re entitled to something” extends to all oppressed or marginalized groups. Identifying as such opens a person up to further attacks and discrimination and even physical violence.

Even without these very real risks, I believe that we should all allow ourselves the option to pass up potential opportunities for activism while still considering ourselves to be good and powerful activists. Even if all we did was live our lives as PWDs, that in itself would be an activist act, demonstrating that PWDs have interests, passions, relationships, emotions, LIVES. We would qualify as activists even if we passed up every single potential opportunity to do affirmative activism work.

My ultra-wise co-contributor Chally once told me that taking care of myself was a feminist act. Placing myself at the top of my priorities – even though I am a woman and “should” prioritize caring for others or building a family, even though I am a PWD and thus “have minimal value or worth to society” – is an act of activism. Can I do more than that? Yes, and I do, but I always try to keep in mind that my activism is and should be secondary to my own well being. In part because I’m not going to be able to do any activism at all if I burn out or hurt myself physically or mentally doing activism work. But also because the simple act of prioritizing myself is, in itself, activism.

So take the opportunities for activism that you feel you can. And let the others go by. And remind yourself at the end of each day that you were a good activist that day.

The frustration of incremental progress

activism, identity, media and pop culture, mental health, social attitudes

The place I work does a lot of trainings for other organizations on health care programs. A number of health care programs are available only for people with long-term disabilities, so the trainings always include a fair amount of discussion of what disability is and who is disabled.

My organization is relatively progressive and puts a priority on protecting vulnerable populations. We have a section of the training talking about the government’s requirement to provide translation and interpretation services for people who do not speak English. We discuss programs for minor children who want to obtain family planning or pregnancy services without their parents being notified. We highlight the special rules for homeless people to work around their lack of a fixed mailing address or phone number.

When it comes to disability issues, though, there isn’t always the level of awareness and sensitivity that I would like. Recently, I was sitting with two co-workers talking about potential interactive activities to add to the training. One co-worker suggested making a poster with photographs cut out of magazines that we should show to the trainees and ask them to point out who is NOT eligible for Medicaid (the U.S. goverment health program for very low-income folks).

“We can use the photos to show them that people on Medicaid aren’t just homeless people pushing shopping carts on the street,” she said. “And it’s also good to remind people that you can’t tell someone’s disability status just by looking at them.”

“Yeah,” responded another co-worker. “It’s always good to remind them that someone could have a mental health disability or something like fibromyalgia that you can’t see just from looking at them.”

HURRAH, I thought. People who are aware of these issues of disabilities that aren’t immediately apparent by looking at a photo. People who want to include this information in a training, want to highlight it with an interactive activity, to make sure everyone understands that. This is progress. This is positive.

“We could Britney Spears and Lindsay Lohan on the poster,” my co-worker continued. “Nobody knew how crazy both of them were at first! I mean, who would have imagined that they were so totally loopy and unhinged? They’re SO CRAZY!” And then she and my other co-worker laughed and laughed.

I froze. Do I mention that we don’t actually have access to their medical records or diagnoses so have no idea what’s going on with them other than what’s reported in the not-at-all unbiased mainstream media and gossip columns? Do I mention that if we go by what’s been reported, I have the same diagnosis as Britney and could be considered just as “loopy and unhinged”? Do I distinguish between drug and alcohol problems and mental health disorders? Do I argue that laughing at people with disabilities that way undermines the message they’re trying to convey with the activity?

I didn’t say anything. I’d already used up a lot of my “humorless” allotment arguing against using an example of a welfare recipient as a single mother with 11 kids so felt that to make any inroads on this issue, I’d have to disclose my own status, which I just wasn’t willing to do. So I let it go by.

Incremental progress.

I Don’t Trust Myself

identity, introspective, mental health

One of the aspects of my bipolar that I find the most exhausting is the need to constantly monitor my own moods. Even though I am medicated to the hilt and haven’t had a manic episode in 5 years or so, I spend at least part of every day worrying that I am edging too far towards mania or depression.

Part of this is good – I’m attuned to my moods, I know if I’m experiencing a big swing, I can immediately address it with my psychiatrist and adjust my meds or go back into therapy or whatever needs to be done. That has served me very well in the past, allowing me to catch hold of a rope before I slide so deep into depression I can’t manage to do anything to help myself.

But it also means that I have what I think of as a dual consciousness. One part of me experiences things, reacts to them, has emotions. And the other part of me sits back and watches and worries. Is that a reasonable response to the external stimuli? Is that within the normal range of emotion? Am I just a touch too upset about something? Is that bouncy happy feeling I have because it’s a sunny day, or because I’m starting to verge into mania?

This means I’m not sure I fully experience any of my emotions, because a portion of me is always reserved for this meta-cognition, this constant monitoring and evaluation of how I feel. And ironically, it’s the strongest or deepest emotions that cause me the most concern and trigger that meta-cognition the most, meaning it’s those emotions I experience the least. I’m not sure I have any idea what it feels like to be happy without that edge of worry. I’m not sure I have any idea what it feels like to be sad without part of my brain running through my recent sleep schedule and medication dosages.

This is why I value so highly the experiences that force my meta-brain to shut the hell up. The most recent example was a Nine Inch Nails concert where I was pressed between the bodies of strangers, drenched in sweat, with aching feet and legs, but the music and the beat were so loud they filled all available space and my brain was thinking of nothing but screaming along with the lyrics I’ve heard so often they seem like a part of me. I couldn’t feel anything but music and the bass running through my body, couldn’t keep hold of any thought except the words of the song. They filled me up so much that my meta-brain had no room to be separate. And I got some time to simply experience things, to just feel, without that separate evaluation and judgment going on.

I don’t know how to create those experiences for myself – when I’m so overwhelmed by sensory input that the meta-brain that usually sits in the balcony and comments on everything going on gets forcibly dragged to the floor to experience things with the rest of me. But at the same time, I credit that meta-cognition with keeping me safe and protected and getting help when I desperately need it, so I don’t want to turn it off entirely.

I just wish the checks I put on myself to keep myself safe didn’t lead so directly to feeling dissociated from my own emotions and experiences.

Disability 101: Treatment Suggestions and Why They Are Not a Good Idea

101, autonomy, blaming, bodies, identity, life changes, normality, resistance, shaming, social attitudes

I suggested a treatment/”cure” to a PWD for her/his/zie’s condition, and they ignored my suggestion/did not throw themselves at my feet with gratitude/got upset. Why? I was only trying to help!

Many people who do not live with chronic health issues, perhaps in a spirit of wanting to help those they know who are in pain, disabled, chronically ill, or affected by a neurological or mental health condition, may suggest different treatments or ways that they believe the person with the condition, illness or disability should use to “get better.” Many PWDs and chronically ill people, however, have experienced this exact process before, and often to the point where such “well-meaning” pieces of advice get…well, annoying; a stranger, acquaintance, co-worker or relative might suggest something that has been suggested many times before. Such “well-meaning” suggestions may imply some very different things to the PWD, chronically ill person, person with a mental health condition, or non-neurotypical person, namely:

…that they cannot be trusted to manage their own health, disability/disabilities, or course of treatment. Many people with disabilities and chronic illnesses have found treatments that improve their quality of life. Even with these treatments, they will probably still remain disabled/ill or still have their condition; the treatments that they have worked so hard to find, additionally,  most likely work for them. It is not your job, whether you are a friend, relative or other person concerned for the PWD’s “well being,” to bombard them with suggestions for different treatments, or push them to “just try” treatments (some of which may even be questionable in their effectiveness). There is a long history of people with mental health conditions, the non-neurotypical, persons with disabilities and chronically ill people being forced into undergoing treatments, into hospitals, and even into institutions by able-bodied people who presume that those with the health problems are not pursuing the “right” kind of treatment, and that this must be corrected—even at the expense of the individual’s humanity. Unless you are a professional, doctor or other specialist working with the person who has one of these conditions, and/or unless the treatment that they are undergoing is actively damaging their health, it is probably best to keep your recommendations about what course of treatment that you think the individual should be undergoing to yourself.

…that you are frustrated by the individual’s inability to “get better.” You may not say or even think this outright, but in some cases, actions speak louder than words.

…that you want to be given cookies/be thrown a parade/told you are fantastic for suggesting something that, in actuality, has probably been suggested to the individual many times before. In its more severe forms, this tendency is known as the “savior” or White Knight complex. Here’s the problem: Disability, chronic illness, mental health conditions, non-neurotypicality and pain, for the most part, are not things that can be cured. They can be dealt with, but it is oftentimes up to the person with the condition—-with appropriate support from family and friends-—to decide which treatments he/she/zie would like to pursue. Though you might like to, you cannot be the affected person’s able-bodied savoir. It is not the job of PWDs/chronically ill people to make you–an able-bodied person–feel better about yourself, whether by following your every treatment-related suggestion, or being uber-thankful whenever you deign to offer well-meaning advice that is related to their condition(s).

In addition, finding the right treatment(s) to improve quality-of-life can be a long, tiring, and agonizing process for many persons with disabilities, chronic illnesses, health conditions, mental health conditions, and neurological conditions. For many, starting an entirely new treatment for their condition(s) would, on some level, entail starting all over again; since getting to the point to where they are able to function and where their quality of life has been improved takes a long time, do you think that many non-able people would want to start from square one again to “just try” a treatment that’s been suggested, offhand, by a “concerned” person in their lives, that might not even work for them—-or that, in some cases, may make them worse? Because of each individual’s limitations when it comes to things such as time, finances, energy, tolerance/intolerance of additional discomfort or pain, or medication/treatment side effects, starting over with a “new” treatment might actually be a huge inconvenience for some people with disabilities, chronic health conditions, non-neurotypicality, or mental health conditions.

An earlier version of this piece was posted at Faces of Fibro on July 6, 2009.

Disability 101: What is Able-Bodied or Abled Privilege?

101, blaming, bodies, identity, intersectionality, mental health, normality, ,

What is able-bodied or abled privilege?

The term able-bodied/abled privilege refers to the numerous benefits—-some hidden, many not—-that many societies and cultures accord to able-bodied and/or abled people. Despite many folks’ paying lip service to notions of equality for PWDs, the chronically ill, people with psychiatric conditions, and those with chronic health conditions, abled privilege still exists, and there are still a lot of people who are resistant to the idea of a truly equitable, accessible society. Able-bodied and abled privilege is often hard for non-disabled people to spot; yet, in the words of the famous Palmolive dish soap ad, [YouTube link] most of us are “soaking in it.”

Many cultures have social expectations, structures, cultural mores, and institutions that are set up to accommodate able-bodied and/or abled people with the most ease; this is, of course, problematic for those who do not fit the standard of “able-bodied,” or “fully able,” whether in whole or part. Able-bodied or abled privilege also encompasses things like not having to worry about one’s energy level and/or pain level on any given day, the possible negative reactions of others to one’s needs due to his/her/zie’s disability or chronic condition, being stared at or questioned about (with varying degrees of invasiveness) his/her/zie’s disability or condition by strangers, her/his/zie’s ability to move for long distances or on a variety of surfaces without inconvenience/discomfort/pain and at a pace considered “appropriate” by others, being able to make decisions about the course of one’s medical, psychiatric, or other type of treatment without being questioned by others as to whether he/she/zie is making “the right choice” or can make a “rational” decision about his/her/zie’s own treatment-related choices, or being ignored by able-bodied people when one needs assistance in public; these kinds of able privilege masquerade as “the norm” for those without disabilities. For more examples, see Rio’s update on Peggy McIntosh’s famous article “White Privilege: Unpacking the Invisible Knapsack” [link goes to Amptoons].

An earlier version of this post was originally posted at Faces of Fibro on May 6, 2009.

Guest Post: Sex and Scoliosis

bodies, guest post, identity, intersectionality, life changes, social attitudes, , , , ,

This is a Guest Post by Atlasien. It was originally published here.

I’m a multiracial Asian-American woman, Southerner, third-culture kid and mommyblogger. I’ve been living in the Atlanta area for more than a decade now. I mainly blog about race and foster care adoption. My husband and I have a 7-year-old son that we adopted as an older child. I enjoy this blog, and I’ve learned a lot of important stuff about disability issues by reading here.

What does scoliosis have to do with sex?

There are a lot of connections. I guess I’ll need to start by explaining scoliosis. It’s a common disorder, but one that is often very misunderstood by the general public, as well as many non-orthopedic doctors. Most people vaguely remember a scoliosis check from their school days. Sometimes the kids are lined up in a row, and told to take off their shirts and bend over while a medical professional inspects them from the back. The experience is obviously rather humiliating and tends to cause a lot of nervous laughter.

Scoliosis — a sideways, left-right asymmetry of the spine — is the most common form of spinal deformity. It can also be accompanied by other forms of spinal deformity, like kyphosis (AKA hunchback) and extreme lordosis (AKA swayback). It sometimes comes as a package deal along with disorders of connective tissue, or with cerebral palsy and spinal bifida. In those cases, scoliosis is often diagnosed at a very early age.

The other kind of scoliosis, the much more common kind, seems to come out of nowhere. It’s known as adolescent idiopathic scoliosis or AIS. “Idiopathic” is from the same Greek root as “idiot” and basically means “we have no idea what causes it.” Though recent research has shown that it’s actually genetic, and they’ve even tracked down the genetic location (but only if you’re white, which is bizarre, because there isn’t any significant racial/ethnic difference in prevalence rate). Someone with this kind of scoliosis (usually a girl, as the incidence of more serious curves among women is 7-10 times that of men) is born with a normal-looking spine. Before puberty, the spine begins to bend and curve. Maybe it stays there… maybe it gets worse through puberty. Then maybe it stays there, or maybe it gets a lot worse close to menopause. Without major surgery, it’s essentially a one way road. In scoliosis vocabulary, when curves get worse, it’s called “progression”. “Progression” is bad. Arresting progression is good.

According to this NIH resource, “Of every 1,000 children, 3 to 5 develop spinal curves that are considered large enough to need treatment.” If you adjust for sex, the rate climbs up to almost 1% of all girls. I don’t know of any source that says actually how many girls receive treatment of which types. Treatment means to watch, take lots of x-rays, determine progression, and if it looks like progression is, well, progressing, to brace. Or in very serious cases, go directly to spinal fusion.

A pre-teen girl, front and back view, with her face obscured. She has a metal brace that has one rod running up the front to a metal collar, and two rods in the back. There is a fiberglass girdle across the abdomen and down to the hips. There is a strap hooking to both sides of the metal rod in the front. Descriptive text provided by Don.

That’s the “Milwaukee” variant of brace. It’s the kind I had. It’s made from hard plastic and steel. It’s expensive, ugly, frightening, and extremely uncomfortable. The family nickname for my brace was “The Iron Maiden”. You can climb into it and strap it on and off, and adjustments of the screws will accommodate changing body shape during puberty. I think you’re supposed to wear it until a few years past puberty, when your spine growth finally halts. The brace is an old form of treatment and it’s shown to be moderately effective at arresting progression.

Three images of the back of a young woman. In each, there is an obvious curvature of her spine. It's an S-style curve. The middle portion of her back, around the shoulder blades, is off-set to the right, while the shoulders and hips line up relatively evenly. Descriptive text by Don.

Many girls experience horror and anger when they find out what bracing is going to mean for their lives, and that it won’t even fix them, it will just probably keep them from getting any worse.

It was easier for me to accept my fate. First of all, my mother also has idiopathic scoliosis, and her curve was fairly serious. Hers is comparable to the woman pictured above. She had not been treated as a girl, and her scoliosis had slowly progressed as she went into middle age. She eventually had a spinal fusion — two long steel rods screwed into her spine — and was in the hospital for two weeks. So I had a strong motivation to make sure my curve didn’t progress as far as my mother’s. She was also a positive role model for me. I saw her as an active, glamorous woman who refused to be limited by scoliosis. I tried to adopt the same stoic attitude toward my own scoliosis. Second of all, my orthopedist said it was OK to only wear my brace 12 hours a day, which meant I slept in it, but I didn’t have to wear it to school. I think he may have subscribed to the philosophy that although the brace should really be worn 23 hours a day, there’s so much social stigma attached to it that many girls rebel, and won’t wear it at all, whereas a private bracing regimen has more likelihood of consistent follow-through.

I don’t know if it would have made school any worse. I’ve written before about the extensive racist abuse, and sexualized racist abuse, I got in late elementary and middle school.

I was harassed so much in the locker room my first year of middle school that I refused to change my clothes at all. P.E. was a living nightmare full of verbal attacks and physical threats from larger girls. I spent much of my time desperately thinking of ways I could get a medical excuse. Unfortunately, aside from my scoliosis, I was healthy as a horse. I refused to participate in activities anyway, and sat with the asthma-sidelined section. I’m still bitter about this experience because it taught me to associate healthy athleticism with emotional trauma and racist bullying. Maybe if I’d had my brace on, I could have gotten my coveted medical excuse.

It was something I never, ever thought of at the time, though. The orthopedist’s word was the word of law. And the brace was something to be hidden. I think this is a common tendency among brace-wearers. Girls that age don’t want to be seen in a brace. For photos, they’ll take off the brace. If they’re told to wear it to school, they’re mocked and stared at. At the time, I considered myself very lucky that I was able to hide my brace from other kids my age.

I don’t know much about disability theory and disablism, but I’ve been reading through blogs about it, and it’s very interesting in relation to scoliosis. I don’t identify as a disabled person/person with disabilities, and I don’t think many other people with idiopathic scoliosis do. But many of us have also gone through an intensely emotional adolescent period where we’re viewed as disabled.

One of the hallmarks of disablism is that it strips away sexuality. The prejudice against disabled people includes thinking they are not supposed to exist sexually, have sexual desire or be desired.

Being braced means going through puberty strapped and screwed in to a weird exoskeleton that incarnates the negation and emprisonment of your sexuality. Your breasts and hips are starting to grow. They might start to bump painfully against the brace. So you have to visit the doctor — often an older man — who adjusts your screws to accommodate your new growth.

The brace seems anti-sexual, but it also has positive sexual connotations. The light at the end of the dark tunnel is that the brace will “keep you normal”. You’ll get through puberty and enter into sexually desirable womanhood without too much spinal deformity… the brace will preserve you. The brace probably becomes the most significant physical object in your life, for good and for evil.

I certainly didn’t receive any counseling about my scoliosis. I don’t know if it’s common today to have counseling as part of the bracing process. If it’s not, it should be. Girls who have gone through bracing feel like it’s them, alone, against the world. Although it’s quite a common experience, by medical and social tradition, the disorder is isolated and hidden.

This study showed that bracing doesn’t affect self-image much. However, it also takes places in Sweden, where school environment I’m sure is quite different than in the U.S. This other U.S. study tells a somewhat different story: “Scoliosis was an independent risk factor for suicidal thought, worry and concern over body development, and peer interactions after adjustment. CONCLUSION: Scoliosis is a significant risk factor for psychosocial issues and health-compromising behavior. Gender differences exist in male and female adolescents with scoliosis.”

After bracing, scoliosis, and deformities of the spine in general, become almost invisible. It’s extremely rare to have a spinal deformity so pronounced that anyone can tell by looking at you when you have clothes on. People with idiopathic scoliosis “pass”. People have known me for years, even decades, without knowing I had scoliosis. Then one day they’ll see me in a bathing suit — and not even the first time they saw me in a bathing suit, but maybe the first time they really focused on my back — and they’ll burst out with something like, “OH MY GOD DID YOU KNOW SOMETHING IS REALLY WRONG WITH YOUR SPINE!!”

Once it stops being invisible, it’s all of a sudden very, very visible. I guess it’s sort of like shaking hands with someone and suddenly realizing they have six fingers.

If I’m not experiencing any back pain, I rarely think about my scoliosis, although I sometimes worry about my future. Pregnancy is not a risk factor for progression, but menopause is. Right now, my thoracic curve is 36 degrees. If it gets past 40, I might need spinal fusion surgery. This is a mostly safe procedure, but it’s still really scary, and involves weeks in the hospital. Click on the following link if you’ve seen enough David Cronenberg movies that you think you can handle it (link to nightmarish spinal fusion surgery image). Spinal fusion partially reverses the curve, arrests or slows down further progression and relieves chronic pain. You’re still reasonably flexible afterwards, but there are potential complications, and I’m not considering surgery at this stage. If I refused surgery, and my curve happened to progress further, I would start to have more pain and diminished lung capacity. Past 60 degrees, I might start to experience severe and constant pain in my back and/or ribs, and my internal organs would get squeezed together and I might start to have breathing problems. Past 80 degrees I might have lung AND heart problems.

But I don’t stay up night worrying about the risks of progression. Many people have more uncertainty about their medical future than I do. For example, if I had diabetes, I might worry about having a foot amputation.

Since I grew up with scoliosis, it’s taken me a while to understand how it looks from the outside. Aesthetically speaking: not good. We’re conditioned to associate left-right symmetry with health and general well-being. People with moderate scoliosis, like me, often look symmetrical from the front, but asymmetrical from the back, and I suppose that seems eerie and perhaps even deceptive and sneaky. There’s a lot of really negative associations in popular culture (e.g. Hunchback of Notre Dame). When mean-spirited people do “retard” imitations they’ll often hunch up one shoulder and stagger in order to simulate a deformed spine.

I don’t talk about scoliosis casually because a) I don’t have any major health problems because of it, so there’s not that much to talk about b) I’m afraid of it being used against me. I’ll put it on medical history forms when I know I can be assured of privacy. It was used against me recently when I applied for private disability insurance. I thought it would be a good idea to have a separate private policy in case I lost my job for any reason. I did a ton of research, spent a lot of time talking with the salesman, and ended up with a quote that specifically excluded anything going wrong with my reproductive system AND my back. I changed my mind and decided it wasn’t worth buying since so much of my body was apparently un-insurable. They excluded my ENTIRE BACK. Hypothetically speaking, if I got in a minor car accident, and as a result developed the exact same kind of back problems that anyone without scoliosis would develop, nothing would be covered. What a terrible deal. No thanks!

The health implications of my scoliosis are not that extreme, and I don’t need any accommodations to perform any major life activities, which is why I don’t consider myself disabled.

– I have foot pain in my arch if I don’t wear comfortable shoes. I can wear platforms, but I can’t wear high heels.
– I have to be a bit careful doing things like yoga and pilates.
– I have to stay reasonably active in order to be 100% pain-free. When I get too sedentary, I start having back pain and rib pain. If I ever had an illness that forced me to rest all the time, I’d be in big trouble. Exercise and stretching are highly effective for scoliosis back pain. Other options I would consider to control pain if it ever got worse include drugs, physical therapy and adult braces. There are a gazillion alternative health “cures” for scoliosis back pain suffering, but they strike me as being of very dubious efficacy.
– I have to watch my posture
– I have to watch my weight. Excess weight leads to back pain. Being underweight might be even worse, because being underweight is connected to bone density loss, and people with scoliosis have lower than average bone density anyway.

None of these problems are really unique to scoliosis. Plenty of able-bodied and disabled people have back pain or foot pain.

This link from Eurospine.org sums it up: “Progression of scoliosis can involve an aesthetic problem and lead to functional problems. Respiratory disorders may develop in large curves greater than 80 [degrees]. Nonetheless, the mortality rates and vital prognosis in individuals with scoliosis are comparable to those of the general population.”

It’s the “aesthetic problem” of scoliosis that’s unique. Like I mentioned before, left-right symmetry is wound up with definitions of health and beauty across many different cultures. People like me are aware of this on a subconscious or barely conscious level. 99.99% of the time I forget that I don’t fit that symmetrical standard. Every so often I’m reminded, and it feels a bit painful. There are subtle psychological effects. Vague feelings of being a secret curved impostor in a straight-backed world. Times when I feel like my spine is an enemy working against me… times when it hurts to breathe and the pain makes me feel angry at my spreading rib bones, and I wish I could reach inside of myself and squeeze them back into place. Sometimes I’m bitter about the inches of height I lost to scoliosis.

Back to sex. Even without bracing, there’s still a sexual paradox when it comes to scoliosis. Have you ever seen a picture of a woman with scoliosis and/or kyphosis that was not anonymous, depersonalized, clinical, grim and depressing? Like the photos I included above? Scoliosis is profoundly unsexy.

On the other hand, when women pose provocatively, they often throw one hip to the side and put one shoulder forward.Why is that pose sexy? Maybe it makes us look femininely defenseless and vulnerable, as opposed to a masculine, stick straight pose. That’s going along with a typical sexist definition of “femininity”. There’s another less sexist possibility… the pose is also highlighting the flexibility of the spine. So in that sense, the woman is showing off her body’s capacity by bending in a certain way.

There’s a comic book artist, Rob Liefeld, who was (in)famous starting in the 1980s for drawing unrealistic women. The conventions of drawing women are in comics are easy to criticize, but Liefeld’s stuff is… well…I guess you’d have to see the spinal curvature to believe it.

Iconic Rob Leifeld drawing of a super heroine. She's posing facing right, turning her head over her shoulder. She has an impossibly-narrow abdomen, and spine curvature similar to severe lordosis, an inner curve of the spine. She is not wearing very much clothing. Description by Don.

That’s supposed to be sexy. For the audience of predominantly young men who made Liefeld very popular, it must have been sexy. This is a funny analysis of the above drawing by a group of women comic book artists:

Take note of Avengelyne’s waist and how it is thinner than her head. Minus the hair. Note how it hangs beneath her ribcage like a suspension bridge, rather than actually supporting the top of her body. (Her torso must be kept afloat by those helium breasts.) Note the scoliosis gone grossly untreated. Note the little leather bags which wouldn’t fit around a normal person’s wrist. Especially note that the artist put her in the most obvious POSE to exaggerate the spine: a profile shot with negative space between her back and arm. That’s correct – our intrepid heroine’s spine would appear yanked. Avengelyne is a SWAYback™.

The humor is partly at my expense. But I can’t help laughing. It’s a highly sexualized image, but not one that I identify with in any way.

But here’s a poster image I ran across that uses stupid sexist humor to make fun of a real woman, and I don’t find it funny at all.

A woman is facing straight on the camera, with her weight obviously all on one side. She's curved her body to look like an S. Text reads: Scoliosis: Making an otherwise beautiful girl look pitiful. Image is from Motivated Photos.com, description by Anna

It really illuminates the double standard that women are subjected to. You’re supposed to be sexy so that you please men. But if it looks like you’re trying TOO hard, men (and other women) will make fun of you. If you don’t wear makeup, you’re a [insert homophobic slur]. Wear too much makeup, you’re a [insert transgender-phobic slur]. Curve your back, look sexy. Curve it too much, it looks like you’re deformed. Argh!

Thanks to my brief readings of disability theory, I realize that making fun of people with spinal deformities isn’t something I should just accept as the natural order of things, especially because this humor is connected to moral judgments of disability. That is, the idea that physical body difference reflects some kind of moral failing. When it comes to scoliosis, I think the general public halfway believes that scoliosis is the fault of the person’s family. There’s a myth that giving young kids backpacks that are too heavy will make their spines curve (totally not true). When people are adults, “she should have had that corrected” is sometimes an assumption. A lot of people don’t realize that the only sure way to even partly reverse a curve is spinal fusion, which also leaves a giant seam-scar running up your back. Another judgment is that a person with scoliosis must be poor. It’s true that I’m very lucky I had access to bracing; if I wasn’t born into a middle-class family in a rich country, my curve would be a lot worse by now. So there are major class differences in scoliosis, but ultimately, we’re all in different positions on the same boat because there is no way to permanently and completely reverse adult scoliosis.

Thanks to flickr, I did actually find some images of scoliosis that I think are beautiful and help affirm positive self-image and sexuality. I wish I’d found a greater variety of body types, but these images are great to start off with. Some are post spinal fusion.

First, here’s the typical clinical picture. It shows everything that’s wrong with the body.

A woman is facing away from the camera, with arrows pointing to various parts of body to describe them. Head not centered over body. One shoulder (right) higher. One shoulder blade (right) higher and possibly more prominent. Spine obviously curved (to the left). One hip (left) more prominent. Unequal gaps between the (left) arm and the trunk. Description by Anna

Now here are the flickr pictures. They show the open possibility and vitality of a body with scoliosis.

Man with scoliosis facing away from the camera. Someone has drawn his spine on his back with make up.
black and white photo of a woman facing away from the camera, wearing only a towel or blanket. Her spine is curved, and her scars are visible.

man facing away from camera. The photo is in a mirror. One can see both his scoliosis scars from surgery and his elaborate arm tattoo.

woman facing away from the camera. She is caught in the middle of dropping an apple behind her back, both arms curved behind her.

woman facing away from the camera. The image is otherwise in black and white, except for her vivid red hair and lips. She is wearing a black dress with part of the back cut out. It clearly shows the curve of her spine.

photo is in black and white of a woman's lower torso, with a pronounced rib-cage and a pierced belly button

woman facing straight on the camera. She is wearing both a brace, as described above, and a purple corset.

woman facing left from camera, with back facing camera. She's wearing an back brace, and balancing on a small ball.

It’s heartening to see a bunch of pictures like that. There are more photos at this link.

When I walk, my right hip swivels a bit higher and wider than my left hip. I’ve had people tell me it looks sexy. I’ve had people ask if I’ve hurt my foot. Neither reaction bothers me anymore. The way I walk is just the way I walk. It gets me where I need to go.

Acknowledgements for this post: thanks to Thorn for commenting about this issue, and mentioning how it negatively affected your adoption homestudy due to ignorance on the part of the social worker. Also thanks to Deesha Philyaw on Twitter for mentioning the Judy Blume book about a girl who goes through bracing: Deenie. I wish I’d gotten a chance to read that book when I was a girl, and it sounds really interesting.

Cast in Bronze

identity, military, Uncategorized,

Yeah, I know that this guy’s uniform is jacked up. I know you can’t wear your collar standing up like that no matter how cold it is, and that your pockets are decorative only. Were I doing an inspection, The Lone Sailor here would probably not pass. He would be called to re-inspect later.

But I marched past a replica of this statue every day for some of the longest weeks of my life. He was a proud symbol of everything we hoped to achieve, and everything that everyone before us had achieved. It was an image we had hoped to live up to. A symbol of what it meant to be a Sailor. To wear even the lowest uniform and to even be graced the swab the decks was to be a proud member of the United States Navy, and that alone was worth singing “Anchors Aweigh” with a hoarse throat.

The Lone Sailor statue is cast from the hulls of ships long past, giving it the truth behind that sentiment. Lives lost and watery graves. Also, strength of the future. A symbol of strength that will endure the weather, a hint that from here on we would be perpetual, like the water that carries our ships.

Being a Sailor meant more to me than I ever expected, and no matter what happened since, it is something I will always carry with me. It was a part of me, and it continues to be, like that damned statue w/ his jacked up collar and his damned hands in his damned pockets. I have pride in that part of my life, no matter how it ended, no matter how it was cut short. No matter how the career I wanted was yanked out from under me and no matter how I feel betrayed by the very body that carried me through those days of training and “snow watch” at Great Lakes, I was a Sailor, it is a part of me that I treasure. It is a strength that can not be taken from me.

I hope that you get a chance to pay a thankful word to a Veteran today (or tomorrow depending on where you are). Whether a thank-you for what they have done, are doing, or will do (because, Active Duty are Veterans too), remember that their service meant something to them in some manner also. It wasn’t just a pay check or a call to duty. In some way it became a part of that person. It wasn’t just a uniform we put on or stamped dog tags. It was a part of our person. Something we will always carry, but not like a weapon or a line. It changed us. In our very inner most being, it changed us, hardened us and gave us the strength of dozens of ships to endure, even if it isn’t obvious to one who hasn’t served.

You don’t take that off.

It is cast on us, like bronze.

Cross posted at random babble…

Getting It Wrong: Rate Your Students and Ableism

accessibility, bad advice, blaming, bodies, identity, language, normality, shaming, social attitudes, , ,

[Possible trigger warning for upsetting and ableist language]

As some of you may know, I am a graduate student getting my Master’s Degree in Women and Gender Studies. I currently have vague career aspirations of getting my PhD or at least remaining in academia in some capacity; my academic interests primarily have to do with feminist disability theory and the body.

I was an undergrad when I discovered Rate Your Students, a blog for college professors and TAs to rant, with anonymity, about the wonderful world of academia–including its apparent hordes of clueless undergrads. I can’t quite remember how I stumbled upon it, but I found it very refreshing. I was probably what the RYS denizens would call a “special snowflake”, or “snowflake” for short–that is, an overeager student who is convinced of zie’s own specialness (however, my low self-esteem may negate such a categorization)–but I found the site a welcome break from dealing with fellow undergrads at my school, many of whom, I felt, fit the “snowflake” categorization perfectly.

Given my disability and resulting limited energy, during this time I was  privately contemptuous of those whom I percieved to be slacking and getting away with it, particularly when I was assigned to work with them on group projects or in discussion cohorts. Inevitably, I would be the one who led the group in discussion–even when I had been the only one to have done the reading–or the one who would do most of the “group” project planning and resulting work. I do not say this to toot my own horn; this information is meant to be context for the reasons that I started reading RYS in the first place.

After this week’s posts on accommodation(s) for students with disabilities, however, I am seriously rethinking my earlier enthusiasm for the site. One professor sent a query to the other readers of the site:

How do you teach a student…who clearly has severe intellectual developmental issues? How do you make sure the other students aren’t held back? What if your course is a small seminar course, not a large course? You have to spend a lot of one-on-one time with one at the expense of several. Why doesn’t the university provide resources for you and this student?

Am I bad teacher for not knowing how to deal with this? Or for not wanting to?

The responses are a motley bunch (the [+] markers denote different responses from different folks), ranging from the awesome to the somewhat reasonable to the awful:

Anyway, I don’t think too much of students who come to me with a letter demanding time-and-a-half on tests. Nor do I pity the poor fucktards when I think of their asking a future boss for time-and-a-half on a project. There are some students who are truly disabled, and truly need accommodations. But ADD is a sad joke. It puts us at the beck and call of every spoiled tool whose parents can find a quack to label the kid as ADD.

I am an academic. I am also a person with disabilities. I know, furthermore, that “difficult” students exist, and in some cases, universities do not provide clear policies for faculty when dealing with students with disabilities. Professors, however, are not usually assigned to be the disability police, and with good reason (see above). From the glut of postings on this topic, the message that I am getting–as a person with multiple disabilities, both physical and other–is that I do not belong in the academy. People with severe emotional or mental health issues, apparently, do not belong in the academy because they freak out the “normal” folks. Furthermore, if I choose to disclose my disability to faculty, I may be subject to disbelief and doubt, due to their past experiences with disabled students. Hell, someone might even rant about me on RYS if I piss them off enough!

I respect the fact that RYS is a site for professors to anonymously vent; all of us need those spaces. Some of us, however, are both hopeful professors and people with disabilities.  Privileged displays of ableism like the above are asking some of us to side against our own, which many of us cannot do.

The Disabled Label

identity, , , ,

I’d been diagnosed with my first chronic illness for a good ten years before I took the label on. This was partly because I didn’t make a connection between chronic illnesses and disability. That’s an experience I share with a lot of “invisibly” disabled people. Disability is all deafness and wheelchairs and that sort of thing, right? Not so much. I also didn’t take on the label for so long partly because I didn’t experience my condition as disabling for most of that time. A bit annoying, sure, but it wasn’t that bad until a patch about four years ago, and then it increased last year, and then my health got shot all to hell again this year. It’s only been in the past couple of years I’ve been able to approach myself as disabled.

So what changed? To gain access to some services, I had to fill in some forms marked “disability”. That was cool, I could handle being lumped in with disabled people, oh wait maybe that means this qualifies as a disability, oh no I’m one of them, stop being a bigot they’re disabled not monsters from the black lagoon – hey. Maybe I am disabled. Maybe that describes what I’m going through. Maybe this will allow me to explore opportunities and internal spaces I’ve been shutting off. And that’s okay.

Before I got there, I had to overcome a few things. As any “invisibly” disabled woman will know, there’s an idea of the “whiny woman” in your way. The “whiny woman” is that silly broad who always complains about her aches and pains, but who we all know is just looking for attention. The idea of this imaginary woman is put on to us, used to delegitimise our voices, our experiences, our pain. When I ask for disability-related help, I am keenly aware that whoever I am asking may well be thinking of me as a fluttering fusspot, not a person with needs. I did not want to be that whining woman, I did not want to make a fuss. And isn’t that just typical? Women are so often told, implicitly or explicitly, that we shouldn’t draw attention to ourselves but should go about things quietly, carry on, don’t demand anything for yourself. This is, of course, on top of the disability stigma: disabled people are subhuman, better off dead, unlovable, disgusting. Which hasn’t been the case for a single PWD I’ve met, or anyone, in fact. It’s nasty lies, it’s some people’s horrible perceptions.

I came through all that and accepted what I’d always known, always thought about other PWD but couldn’t yet apply to myself: those things aren’t true, we are all wonderful people deserving of life and love and whatever we want for ourselves. And when I finally took on the disability label, it was a relief. Here were a term and history I could apply to my experience. It was liberating.

I came to realise that nobody could force that identity on or away from me. No matter what anyone else thinks, whether they see me as disabled, whether they think I’ve been faking the whole time, this is my label to claim or discard as it suits me. If, one day, I find an identity of ‘disabled’ no longer suits me, no longer applies to my experience, I can let it go.

How do you relate to the label of ‘disabled’? Did you grab it with pride, wear it with shame, are you considering claiming it, do you reject it for yourself?

Why I Identify As Disabled

activism, identity, language, mental health, social attitudes

For a long time, I’ve struggled with whether or not to identify as ‘disabled’ (or as a ‘person with a disability.’) It’s only very recently that I’ve identified myself that way in my own thoughts, and even more recently that I’ve begun identifying that way publicly. (As in, my name listed as a contributor to this blog was pretty much my first public identification as a person with a disability.) Because I know a lot of other people who are unsure if they qualify as a person with a disability or are reluctant to identify as such, I thought it might be relevant to talk about some of my hesitations to identify this way and what finally convinced me that I do identify that way and why it was important to me to do so publicly.

My first reluctance came from what seems to be a very common concern – I did not think I was disabled ‘enough’ to identify as a person with a disability. At this point in my life, my disability is fairly well managed by medication and the approximately 900 million hours of therapy I’ve been through. My psychiatrist sees me once every 12 months to check on my blood levels and spend 10 minutes with me checking in, and other than that, I’m totally disengaged from the mental health care system. (Except for the pharmacy.) To everyone except those who know me extremely well, I pass as neurotypical. I work full time at a professional job. I live independently and manage my own household and finances. I often have days where the only thing relevant to my disability is the 30 seconds at night when I take my pills.  Surely I cannot be disabled!

But I realized that view erases the very real aspects of my disability that I continue to experience. The periods in my past when I was more severely impaired by my disability (including my hospitalization) still exist and are still a part of me, no matter how well managed my disability is now. And the cyclical nature of many mental health disabilities means that while I’m at a relative peak now, I could find myself in a deep trough at any time. And there are limitations involved even with the minimal treatment I’m receiving – I have to make sure I have a dose of meds with me in case I sleep at a friends’ one night, I have to deal with the punishing withdrawal symptoms when I forget to take a dose on evening, I have the dry mouth and the flaky skin and the lump of belly fat that are side effects of one of my meds. (And there’s my monthly tangle with the pharmacy refill system.)

More importantly, I know that if I tell anyone my diagnosis, if they find out about the hospitalization or the 900 million hours of therapy or the meds I’m taking now, I change in their eyes. It’s easier for them to dismiss my emotions as an artifact of my disorder and thus irrelevant. It’s easier for them to patronize me because they assume I’m not capable of taking care of myself. However I think of myself, I know they will think of me as a person with a disability. (Actually, I suspect many of them would think of me as a “crazy bitch.”)

I’ve also struggled with identifying as a person with a disability because of the split between mental and physical disabilities. Even when I began identifying as a person with a mental health disorder, I still didn’t think of that as being a person with a disability. I thought people with physical disabilities focused mainly on physical access issues, which weren’t at all relevant to me. I don’t need reserved parking spaces, I can walk up stairs, I don’t need a special restroom.

Then I realized how artificial the distinction is between mental and physical disabilities. When I have a panic attack, it affects me physically. When I am depressed, I have no energy and I can’t walk up stairs. I also realized the enormous overlap – lots of people have both mental and physical disabilities, and it’s common for the treatments for physical disabilities (like narcotic painkillers) to have cognitive effects. I also started talking to people with physical disabilities and heard them concerned with much more than physical access which, while very important, is not the sole focus.

All of that is not why I began identifying as a person with a disability, though. I thought of myself as an individual struggling with a very specific and individualized problem. I know other people with the same diagnosis as me, and all of us have had very different experiences and very different approaches to treatment. So I thought of myself as an exceptionally special snowflake that had some exceptionally special difficulties for me to go through, difficulties that nobody else had or would experience. So I thought about my mental health issues as they affected me personally, how they had changed my life, how they had made me the person I am today. But because they were so inherently unique, because nobody had gone through exactly what I’d gone through, I tended to think of my disorder not even in terms of my diagnosis, but in terms of “the very special snowflake disorder that only applies to me.”

Thinking of it that way meant that all the negative reactions I got, all the judgments I got, all the dismissals and marginalizations and refusals to take me seriously, all the hoops I had to jump through to get what other people had – they were just about me. Personally. They were not about how people responded to mental health problems, they were not about how people respond to and discriminate against people with disabilities as a group, they were about ME. I had brought them upon myself because of my disordered behavior, because my special snowflake-ness was so annoying or intolerable that people had no choice but to write me off.

Amandaw recently told me that she thought of disability as a political identity and I strongly agree. Thinking of myself as part of a group of people who routinely encountered oppression on the basis of their disabilities meant that the reactions I got, the disregard, the disgust thinly veiled as pity, the refusal to deal with my emotions and ideas – that wasn’t because of me. That was because I was part of a group subjected to systemic and institutionalized discrimination and oppression. And it was wrong. But it wasn’t until I started thinking of myself as part of that group and thinking about how these systems affected all of us that I needed a term for “people who are discriminated against or oppressed by our culture and institutions in the same way I am.” It wasn’t until I started thinking of it as a group issue, rather than an individual issue, that I needed a word for that group.

These systems that oppress us don’t care one whit about my special snowflake-ness. They don’t care about how well I’m doing now. These systems exclude and marginalize and dismiss and mock me based on my disability status without taking into account any of the individual variations in my life and my disability. And when I hear a caseworker explain that “you can always tell who is crazy because they live in cardboard boxes and tell people it’s a palace and they’re the king,” it feels like a slap in the face whether or not she knows I’m disabled. It’s about the systems, the institutionalized attitudes. It’s not about me.

Even after realizing all of this, I was still reluctant to identify publicly as a person with a disability. I would share details of my mental health history and the effects of my mental health conditions, but I still wouldn’t come out and identify myself as a person with a disability. At least, until I began talking and working with the amazing women who are my co-contributors on this blog. Because that’s when I realized that identifying publicly gave me power. Gave us power. Allowed us to come together as women who experience oppression and discrimination on the basis of our disabilities. Allowed us to work together to identify and address these problems, to find others affected in the same way, and to come together to try to change things. Thinking of myself as a super special snowflake made that kind of collaboration and support impossible, because nobody could be in my special snowflake group with me.

So while I’ll always think of myself as a pretty damn special snowflake, I also now think of myself as a woman with a disability. And identifying that way has allowed me access to power and support that I don’t think I could have found otherwise.

Note: I’m going to moderate this comment thread with a heavy hand to ensure that there is absolutely no policing of disability. If I self-identify as a person with a disability, I do not owe you the information of my diagnosis, my health history, or my therapy records to ‘prove’ that I am disabled. Similarly, I will respect how others self-identify if they are doing so in good faith and expect other commenters to do the same.