Tag Archives: self-acceptance

Recommended Reading for Wednesday, October 20, 2010

Good Day, all. It’s been a stressful week at Chez Anna (I’m putting this together at 5 a.m. my time) so forgive me for oversights, please.

Kali at Brilliant Mind, Broken Body: I am not your metaphor

This is something that has bothered me for a long time, and actually led to one of the very few spats between the boyfriend and I (quickly mended, once we both cooled off a bit). I really hate the use of disability-based metaphors. Hate them, hate them, hate them. I believe that they’re part of what makes disability such a fearful, distorted, tragic cloud to people who are able-bodied.

It’s all well and good to say they’re bad, but I think it makes more sense if I actually go through some of the more common disability metaphors so you can see what I mean

DeafMom:Embracing My Deaf Self

My life took an interesting turn at that point. Once the grief subsided and I dried the tears, I entered a new world filled with deaf and hard of hearing people. It wasn’t easy– because I had spent the previous 19 years of my life hiding my hearing aid and feeling quite uncomfortable with anything that reminded me that I was “different.” It took awhile for me to learn American Sign Language and get to the point that I embraced a deaf identity. Once I did, there was an amazing transformation in my life: Yes, I am deaf and gosh-darn-it, that’s perfectly ok.

shiva at Biodiverse Resistance: When Will We Be Paid For The Work We’ve Done?

There are several horrible things here. First, the uncritical use of the term “trainable”, dating from the workhouse-era classification of intellectually impaired people into those who could be “trained” to do “useful” work (often with “training” methods that basically amounted to torture) and those who could not (particularly disturbing coming from a “special education” teacher!). Second, the assumption that her “functioning level” (a heavily loaded and problematic term in itself) will never change throughout her lifetime, and that, despite Brown demonstrably being in reality an adult, her “functioning level” is that of a child, meaning that Masaki buys into the “eternal child” stereotype of learning-disabled people – historically and still used to deny them adult sexualities, adult roles within families, and all the basic rights, freedoms and responsibilities that anyone else is assumed to gain automatically on reaching chronological adulthood – which is perhaps even more disturbing as an attitude held by a teacher whose pupils she considers herself “mentor and so much more” to. Thirdly, the glib “wouldn’t it be nice” comment, which is more patronising “inspirational” crap, making disabled people into ciphers of innocence rather than real, flawed and complex people.

MarfMom: A Call for Posts

A Call for Birth Stories From Women With Disabilities

Whether you knew about your diagnosis ahead of time or not, whether you had a vaginal birth or a c-section, I want to hear your story. Positive birth stories are awesome, but if yours wasn’t what you hoped please feel free to submit it too because I want to keep this blog real and the reality of having a disability is that sometimes our deliveries are complicated. I’m going to leave the term disability open-ended, but I’m basically looking for high-risk pregnancies (or what would have been if you’d known your diagnosis). You don’t need to have a connective tissue disorder.

Anne at Where’s the Benefit: The Damaging Effect of how People Perceive disability benefits

If you are one of society’s more vulnerable members, you will have to fight for everything and wade through reams and reams of red tape. That is the experience that many of us have. And people who become eligible for disability benefits and try to claim them are often completely shocked. Some do not have the energy, emotional strength and/or intellectual capacity to go through all of the form-filling and bureaucracy involved in applying and apppealing.

But so long as the myth persists that it’s simple and easy to apply for disability benefits, people will believe that anyone who says it’s not is making a fuss over nothing, or sticking up for so-called scroungers – and when people become eligible for these benefits and try to apply, they will continue to be absolutely gobsmacked when they find out how difficult it is.

In The News

Canada: The National Post: Bygone Braille. “Advocates blame funding shortages, not enough qualified teachers, and decisions by administrators to deny Braille instruction to children with low vision because of an emphasis on encouraging these students to read print. Educators say this assessment couldn’t be further from the truth and argue that today’s diagnostic tools have honed the art of identifying those who truly require Braille instruction and those who don’t.”

Australia: Australia Misses the Plane on Accessible Tourism. “Based on general population statistics of age acquired disabilities the total expenditure of this group in the travel sector is likely to exceed 22% in ten years time. Not only is this relevant to Australia’s domestic tourism market but the majority of Australia’s inbound tourism is sourced from countries with similar age demographics.”

UK Learning Disability Coalition protests in Birmingham at Government cuts. “The campaigners from Birmingham, many of whom use social care support, held up “Cuts Incident” boards displaying the frontline services which they fear will be affected by the Government’s Budget and Comprehensive Spending Review and subsequent cuts that will be made by local councils.”

From Sea to Shining Sea: Bad Ass Disabled Vets Refocus Their Military Training

Military personnel learn to apply their earliest military training to many parts of their lives. From the first moments of boot camp our lives are broken down and that training is ingrained into our very being. We take that training with us long after the uniform hangs unworn in the closet and the neckerchiefs lie in the drawers. Even today, I can write a business email in all acronyms, because it is still the most formal and proper way I know. One time we “tossed racks” because Kid couldn’t find something and insisted it wasn’t in her room. I can fit many t-shirts in a drawer or suitcase, thanks to a certain Chief, who, incidentally was not my division chief, but who seemed to think the sun shone from my arse nonetheless.

For some, it helps to pull us through the unexpected twists that life hands us. I am sure I am not the only person who will endure more pain than is required before complaining because I believe it is expected.

For Marc Esposito, a 26 year-old Air Force Sergeant and member of a special tactics squadron until his humvee hit a roadside bomb, his training helped him focus trough the year of rehab at two separate medical facilities, including the Walter Reed Medical Center, where he re-learned how to walk.

Now he is using that focus — that training — to ride with Sea to Shining Sea, to raise awareness for the Special Operations Warrior Foundation for wounded veterans, and in his own words,”[T]o hopefully show any kind of disabled American you are still capable of doing amazing things […] and hopefully change the perception of what it means to be an athlete.”

Sea to Shining Sea is a group of 17 cyclists, most of them disabled veterans, who started the journey of some 4,000 miles from San Francisco on 22 May, by dipping their wheels in the Pacific Ocean, and plan to end it by dipping their wheels in the Atlantic in Virginia Beach on 24 July. They have averaged about 50 miles a day.

Some people don’t understand that the training doesn’t leave you. It isn’t something you take off, and in some cases, this is a very good thing. The drive it takes to recover, the intensity it takes to stare illness and injury head on, the nerve it takes to accept that your career may be forever ended or changed … all of that comes from the part of you that is broken down and rebuilt ahead of time. All those weeks, months, years ago when you step off the bus and dress to that line for the first time. They rebuild you up, and it becomes a life skill that you use to accept, use, and build upon.

And it allows you to meet any task head on, using whatever you have left.

Sometimes all you have left is enough and you have no other desire but to give it.

Because that is all we know.

We know to take what we have left, and give something back.

Sea to Shining Sea is nothing short of Bad Ass, and I am not doing them justice, because I have struggled over days to write this post. I have wept a little at what these people have done with what they have kept and done. I am so proud of them, and so humbled to know that they, through their hardest, darkest times, have pulled through because of a common link and have spun it around to something positive, and to something healing, and are finding a way to use it to raise a positive message for disabled veterans everywhere.

Thank you to s.e. smith for the link, because ou is always looking out for me.

Where There is No Pain

I am staring up at the sky, and I can see the clouds rolling by. I am going the other way. We are giving a nod to one another as we go our way.

The sounds above me are all muffled, of people going on with their lives. I put them out of my mind. They don’t mind me, and I certainly, at this moment, don’t care about them. The sounds around me are different. They are bubbled and thunderous but deadened. They don’t hurt like the stark sounds of being above.

I glide. Above, I ache, I hurt, I am slow. I can barely move forward. But here, I am a Titan. Gods wish they could move like me. This is where I want to be. My muscles move the way I want them to. They ache and scream with the movement, but there is support under every part of my body holding my limbs as I reach.

I turn face down now, tuck my head, and open my eyes. The world is clear, and the sun beams across the floor in ripples, because it isn’t even as strong as I am here. I expel my lungs as I stretch my legs, moving them like scissors, gently. Every gentle motion has so much power. The movements that bring me glances of pity above make me feel like Poseidon’s child here. I was made to use my body here.

I reach, grab, and pull, gently, and glide again. I turn my head (it doesn’t hurt!) and take in a desperate measure of air greedily. My torso turns as if it can just swivel freely. I look down below me, straightening my spine, and see the blue tiled “T” marking my distance. One. Two. Three, and a tuck, and my legs push me back the other way.

I want to stay here. I want to remain where there is no gravity to pull me against myself and bring the pain back. I dread later. I dread even ten minutes from now, because we all have to pay the piper…

The second lap is slower. I always start off too fast. It is always too long between these trips, or too long between seasons (it is never the same indoors). My body can move, but my lungs burn faster. I have to come up more.

Halfway through I have to stop.

My feet (they are tingling now…again) find the ground and my hands reach for the wall.

No. Please.

I fight on. Because I want to stay here.

Where it doesn’t hurt.

The sun beats down on me.

Reach. Grab. Pull.

And it isn’t just the water I grab for. It is time.

Tuck, push, kick.

Glide.

Under here I am alone with my thoughts, with how good it feels.

But my lungs ache for that air, and my body is tired, and my neck strains now when I turn for that air.

As I grasp that wall I am crying.

I need help out.

I am too tired to stand.

I have to rest.

And all I can think about is the next time I can get back in.

Originally Published at random babble… on 10 June 2010

Fighting To Get Back And Other Cute Metaphors

Moderatix note: This post will be United States Military centric, as that is the perspective I offer, and the broken system within which I currently exist and attempt to navigate.  Other voices are welcome and experiences appreciated within the context of the conversation, since I can not pretend to know every thing about every military experience from every branch in every country.

A while back I wrote a little bit about Permanent Limited Duty, or PERMLIMDU as we called it in the Navy. It is the status you are placed in when you are injured or sick enough that you can no longer perform your job to military standards and the military has a board decide how much you can do, how long you can do it for, blah blibbity blah.

I also get a daily subscription to the Stars and Stripes newspaper because I like to read while I am on the toilet. It seems appropriate.

So it stands to reason that I would come across this article from Stars and Stripes (the online and the paper may vary a bit, I haven’t matched them up side by side, but there is usually a slight variation if I can find them in both mediums at all) about servicemembers who are “fighting to get back”. Actually, in the online version the headline uses a cute joke “but results may vary”. I tried hard to laugh. *ahem*

Now, let me be perfectly clear: I applaud the efforts of the military members who worked through their injuries and fought to return to their jobs. I hesitate to applaud this type of story, because these always, always, especially when covered by the military, feel “inspirational” to me, even though the veteran in me applauds the veteran who is them, irrespective of the intersection of race, gender or other marginalization, for getting back to any kind of duty status. Because the military is an animal that will eat the less than perfect alive and shit them out and bury them, forgetting they ever existed.

According to the article, “200 soldiers, 58 Marines, 33 sailors [I would have been 34] and six airmen have petitioned for, and won, the ability to continue to serve even though the military has found them unfit for duty”, which is nothing short of remarkable considering the way the military has about tearing people down. What is interesting is this article and the way it highlights some aspects of this marginalization, and glosses over others altogether.

Most interesting to me is that of all of those people, they could not find one woman to highlight? Hmm… funny that. I can’t imagine that not one of those many people who came back to PERMLIMDU status was a woman.

Most aggravating to me was the story of Spc. Jake Altman, whose story was almost presented as a he-said, he-said, except that they casually dismissed Altman’s feelings of being mistreated. He mentions being put on patrol in a damned war zone without his prosthesis, because his superior said that it looked like it was hard for him to see others doing it better than him. So, what? Was it Sgt. O’Brien’s job to teach Altman a lesson in hard knocks? Because something tells me that Altman had already skipped ahead a few courses in that one and could happily give O’Brien the Cliff’s notes explanation. Not that I think he would listen. Because a good number of TABs tend to not really try to get it when PWDs try to describe their experiences to them.

Altman contacted the Warrior Transition Unit, a wonderful thing the Army has going on, and has eventually sought discharge. I can empathize.

Because at the end of the day, no matter how much you want to stay in and do the job, what others think and how they treat you matters. It matters enough to drive you out. I think that if someone did a study or a survey or wev, they would find that people who transitioned out of the military due to illness or injury might possibly have depression due to a crushing loss of the camaraderie, but that is my lay opinion based on my own experiences.

The dismissive air of the article over Altman’s attempt at returning to deployment, and the following segment, subtitled “Up To The Challenge” as if Altman somehow had a moral failing, as if the treatment of those around him, who judged him outright and convicted him of being less-than due to his injury.

My job in PERMLIMDU would have been much different. I am not even exactly sure what it would have been, to be honest, because… well, in my mind I still gave up. Getting injured in the military, or ill, or anything that makes you less than a perfect TAB specimen, eats you alive. It starts to kill you from the inside, knowing that you are a failure, because you have been conditioned that anything less than the best is unacceptable. The glimmer of hope that is PERMLIMDU gives you back a sliver of that self worth.

How Many Straws?

A blue and white lane-marking buoy in a swimming pool.I know that I am not 18 any more.

One of my doctors kindly pointed that out to me recently.

What I mean is that I can no longer demand of my body what I once did. And I know this, as I embrace the things that come with years gone by. Aging is a complicated issue for me, emotionally charged and not something I am willing to discuss right now, but it is important to note that this post is not about aging. It is, however, about the way my body has worn down due to my disability.

When I was 18 I drilled endlessly on the U.S. style football fields, with the careful precision that four years of training an 8-to-5 step — that being my ability to march exactly eight steps in five yards to whatever beat you set for me — will ingrain into a person. I was able (and expected) to teach others under me to do the same all while playing the horn. To this day I can not hear most music without at least tapping my foot. Emerson, Lake, & Palmer’s “Karn Evil 9” will actually cause me to hum along wistfully. Later I did the same at University. Anyone who participated in University Marching Band at Eastern Michigan University can tell you that marching band was not something you just did, but rather worded at, and I worked hard. Hauling that tuba around during pregame was no easy feat. There was a reason music majors received PE credit for marching band.

Before I was diagnosed I was a runner. When I was 18 I had pounded out miles on the track and on mapped out road routes in order to get into the condition I needed to race for years. I was able to sprint out the eleven or thirteen steps, whichever felt right, to take me to the high jump pit and sail over the bar. I wasn’t amazing, but I had determination to demand it from myself. I ran in high school, and I hated it. I loathed it. I had clever names for the malevolent task-masters whom I called Coaches that I went to voluntarily every day after school and asked for work out schedules and whose hands I shook afterwards.

I ran before, during and after my pregnancy (when I wasn’t throwing up), cussing myself out the whole time. I ran in Navy boot camp, filling myself with the urge and the desire to do well. I hated every moment, but loved the feeling of feet on pavement even as my shins cried out in pain. I filled myself with the desire to go one step further, two, one mile, two, as I shoved tears out of me to replace the pain that filled my body (and I usually peed my pants a little at some point, but that is another story).

Eventually the shin pain became a lot worse. It was massive, and no amount of ice or ibuprofin was going to alleviate it. A bone scan later and some Tolkein-esque blathering you don’t care about and I am told I can never run again. Sure, the Navy loved that. I couldn’t get a chit to back it up w/o getting kicked out earlier than I already did, so I had to go back every 45 days or so to get a new one, and I had to be very sure it was a nice sailor-doctor who signed it, because the Fitness Enhancement people were not going to take anything signed by anyone who was a civilian or any other branch of the military regardless of what degrees they had on the wall. So, running was right out, and they weren’t making it easy for me to, well, take care of me.

I became a swimmer, and I was fantastic at it. I probably knew this deep down, having been a natural swimmer since before I could walk. Had anyone told me that I could swim as an option to running in the Navy sooner I would have. I swam thousands of meters a day, until I was exhausted (trying not to notice that my body was telling me this was sooner and sooner each day). I would do kick turns through migraines that were getting more and more fierce despite the amount of over-the-counter meds I was pounding. Go figure. My Fitness Test scores went from Good/Low to Excellent/High.

Until my abdominal muscles gave out.

I finally pulled something doing sit-ups. I went from doing in the high 60’s to barely being able to do the 35 that was required to pass for my age group pretty much overnight. I would get to 15 and the pain would make me yell out it was so sharp. I could almost clock it, too. Of course sit-ups were always first, and this made push-ups impossible. I couldn’t even do the simple 15 I needed to pass. My doctor felt around, and determined that core exercises were out for fitness tests. I was to do them only at my own pace or with a doctor in physical therapy.

Finally the headaches were bad enough that it was too much and my swimming was scaled back. My exercise was restricted so much that I was barely allowed to do 30 minutes a day. I was still not receiving any pain medication other than anti-depressants, which were not working for me. I started seeing a chiropractor, and doing yoga, which I was told was not a “real” workout, but would count for my weekly number of workouts anyway. Even then I couldn’t do a full class because I was in too much pain.

Still, as I gained weight, cornered in by pain and now stuck in a body that wasn’t allowed to move anymore, my new doctors (because they were always changing) said that I just needed to lose weight, if only I would watch my diet and include more exercise into my daily routine, which by now was only limited to half days of work due to pain and 15 minutes of exercise by my chiropractor and PCM, and Hey! How about seeing a dietician?

After my discharge, when my second career choice was unceremoniously ended with me handing over my ID card, I finally settled into a place where I stopped hating my body so much (OK, you got me, I’m still working on it). I am finally on a pain management regimen, I do light exercise as the pain permits, and my body is stable at a weight that hasn’t fluxed one way or the other for a few years now. I had to give some things up (drinking alcohol any more than a few sips being the one that comes to mind mostly) because of those medications. But all of this aside, I have tried to take care of myself. I have followed what doctors have told me to do, I didn’t smoke, I tried to eat right, I wore sunscreen…I even eat very little meat, having been an on again/off again vegetarian. I know that these are not hard and fast actual things that guarantee health, they are just things that I have always followed because some doctor or dietician or another has advised me blah blibitty blah… What I mean is that I have very few of what people generally consider vices.

Recently I had some issues where I have been vomiting in my mouth, acid reflux, heart burn, all kinds of fun stuff. They gave me a nice, handy laundry list of things I need to give up in order to help alleviate the symptoms now that they have prodded around my duodendum with a camera.

Things like coffee, and chocolate, and anything spicy (or tomato-based in general), which are three of my favorite things. All citrus foods are right out, which I expected, but they snuck in things that surprised me, like mint and mint flavoured things, which took half of my herbal teas out as well. Finally, I find myself with no vices if I am to follow all of the doctorly advice to maintaining my health.

Let me tell you that I have not been a pleasant person to be around lately. I depend on that Super Human tolerance for things like caffeine and chocolate (sometimes at the same time!) to fuel things like my snark and ability to write 2,000+ word blogs posts. I have sustained myself on coffee and little else at times. It is often the centerpiece of friendly chats and family gatherings.

It leaves me to wonder, how many straws do we lose before we say “that’s the last one? I can’t take any more!”?

What lines do we draw when we get all of that medical advice, when things that we enjoy or that we once did have been stripped away from us one by one, to balance a quality of life for ourselves so we don’t sit around stewing about what we can or can’t do anymore, and to make sure that we do actually pay attention to the call of our bodies as they try to tell us something (if they do send us signals at all)? Where do we draw the lines between telling our bodies to piss off because we need that comfort, that thing that helps us get through the day when we feel like everything else has been taken from us?

Or am I making mountains out of molehills here?

Photo credit: ashleigh290

The Space Between…

Jennifer Hawkins, a white woman, poses nude with her arms purposefully placed, on the cover of Marie Claire magazine.This post originally posted at random babble… on 06 January 2010

The policing of other women’s bodies is never OK from a feminist standpoint. I can’t stress that point enough. It doesn’t serve any productive purpose in feminist discourse.

It is mostly an understood concept among people outside of the mainstream of feminism. Those who are able to work their theory around the concepts of white, straight, cis, upper-middle class, educated, able-bodied privilege.

Yet, a concept that still slips into the space between understanding is the difference between criticizing someone who comes from a place of thin privilege and tearing someone down for a body that is not like your own.

This article at Bitch, to me, was the latter.

It doesn’t seem like so long ago that I was a size 0. And yet, looking at myself now it feels so far away. That is something I am coming to grips with even today. But my mind remembers it all so well. How can nothing be something? And even at nothing I felt all my flaws. I covered in my towel so I didn’t have to glimpse myself in the mirror and be disgusted by what I saw. I still do that now! I refused to own a scale, afraid of what I would see (I still do that now!)…because it would send me into fits of fear and rage and crying…because no matter how much I threw up and refused to eat I could not weigh what all the charts said someone of my height and weight should…and my thighs jiggled and my belly bulged and my arms — while muscular from kitchen work — wiggled. Even though I was actually nothing. My clothing size was nothing.[1. Why are women’s sizes arbitrary numbers? Why can’t they be waist measurements? That would be more consistent?]

Jennifer Hawkins has thin privilege. Yes. She most certainly does. But when I was struggling I had two kinds of people to look at in magazines and on television: overly photoshopped women who were too perfect, and purposefully imperfect women meant to make me hate myself so that I would work to not be like them. There was no campaign of women of any size coming out to say “we are imperfect, but here we are“.

I will grant this: The Bitch piece does criticize the way that Jennifer Hawkins’ flaws have been the main focus of her nude cover. That is not the conversation that this cover should be invoking in feminist circles. But if she is talking about how hard this was for her, that is not something we should be criticizing. Dismissing her hesitancy, her own insecurities just because she is thin and has a different body type than someone else… that is not feminist either. When has it ever been OK for us to dismiss another woman’s experiences?

Why can’t we, as feminists, understand that?

She no longer has the protection of her Photoshop Deflector Shields, so she is in a vulnerable place, but her thin privilege doesn’t put her in the same place as all the fatties of the world who are crying in clothing stores because shirts are not made for their bodies. I get that. I think Kelsey Wallace at Bitch, for whom I just did a mostly lovely guest blogging stint w/ some of the FWD/Forward team, even gets that despite what I am garnering from her post.

Jennifer Hawkins is not the same as me. She does not know what it is like to walk into a doctor’s office and have hir assume that the pain or illness is caused by my weight before they know anything about me. She does not know the pain of the stares when I have trouble walking somewhere, as if it is definitely because I am a fattie. Or how clothes are made for people like her and not for me…or how society is made to make me feel like I am a big worthless pile of shit whose only chance at redemption is to adopt a “Lifestyle Change” for just sixty bucks a month or whatever.

But while we are throwing stones at Hawkins and scolding her for making us all feel like crap, let’s remember that she is entitled to feel like crap too. And other women who look like her, who aren’t models, who might feel like crap about themselves, they are allowed to feel that way too if they want too. Because some of them might be trying to recover or hold on or what the fuck ever. Maybe they are healthy, and have been told to Eat a Sandwich[2. Yes. I linked to them. I want people to see how awful that thread is, and how flippantly and dismissively that is defended, even when it is pointed out to the mod to be harmful. As in, she doesn’t care that some people find it harmful.], as if it funny or hip, but they can’t gain weight or can’t eat that much for whatever reason.

Or, maybe we, women of any size, are allowed to love our bodies and just be fucking happy, no matter what, and these women on these covers should show us that at any size we can all be beautiful (and maybe we will see more variance soon…but I am a silly, idealistic girl[3. I can’t back this up. I am not.]).

We can criticize thin privilege without policing other women’s bodies.

Just sayin’…

Guest Post: Hanging Up the Cane

Lis is a 22-year-old university student from Western Canada. She studies psychology, and is currently working at a school for at-risk inner-city youth. In her free time, she writes fanfiction and participates in the Society for Creative Anachronism.

The first time I held my cane, I cried.

It wasn’t a feeling I expected, to be honest. I’d been fired the week before from a job I enjoyed, for telling my employer I was in too much pain to stand for the entire shift, but things were coming out on my side. I had all my friends and family supporting me, and I’d found enough self-esteem to file a complaint with the provincial Human Rights Commission, alleging discrimination on the basis of disability. It was time, in my mind, to give up beating around the bush.

I’d been raised by parents who lovingly ignored my seemingly minor birth defects, who didn’t want to stigmatize me any further than a Gifted girl in public school could be. They felt that letting me wear normal shoes was the least they could do. When a nagging ache formed in my right knee and hip in my teens, I tried to ignore it and the fact that it wasn’t going away. I was twenty before I went to a podiatrist, who didn’t have to do more than examine my hips and spine when I told him I was in pain before snorting in disbelief and saying, “Yeah, no wonder.”

My right leg is five and a half centimetres shorter than my left, with the discrepancy fairly evenly distributed between my femur and tibia. It’s the kind of thing only the tailors who hem my pants notice, when they call my house anxiously asking me to come in for a second fitting in case they made a mistake.

But I was sick of living in pain, and after I’d been fired for requesting a stool it didn’t feel worth denying my pain anymore to look abled, so I went out to the Mobility Aids aisle of the local London Drugs. A fellow fanfic writer who used a cane had told me what to look for: adjustable, orthopedic, and unrepentant. The one I picked off the rack was a vivid aqua.

Then I cried holding it in my hands, because I couldn’t pretend anymore that I wasn’t disabled.

After that was over, I went down to Stationery for a pack of Sandylion stickers, made my purchase, and sat outside that drugstore wiping the tears from my face and plastering the cane with pink and purple butterflies.

How do I say what that cane meant to me? None of the abled people I’ve met understand it with anything but pity. I’ve always had low self-esteem and what my psychologist later diagnosed as social anxiety, a terror of asking that my needs be met, of attracting unwanted public attention. Now I had a public declaration of my needs, and it was bright blue. The cane did some of my talking for me, so I became able to stutter a request for a seat on the bus, or ask not to walk long distances. I was attracting the sidelong glances and whispers I’d always feared, but all they made me do now was grip my cane a little harder and stare back at them. I knew I was in the right. They knew it, too, because they always glanced away.

How can I explain that after years of living in pain to be what was expected of me, that cane taught me to say I want and I need and I deserve? That it was never something I was bound by; that it gave me the ability to walk further, stand longer, move quicker than I would before? That I missed it when it wasn’t in my hand?

Society marginalizes disabled bodies and takes away their sexual agency, but being visibly disabled helped me find mine. I’d always felt anxious about my body, about being attractive, about being good enough: I always chided myself for not reaching some nebulous ideal. The great lie I had been able to believe when I was abled was that perfection was achievable: that if I only said and did the right things, I’d escape criticism from myself and others. It was in facing criticism and dismissal that I learned I’d been playing a mug’s game. The point wasn’t to make other people happy; my body didn’t and couldn’t exist to meet their standards. The only standard I could meet was mine. I used to be mousy, deliberately homely, as if my unfitted jeans and baggy shirts said, I quit, don’t criticize me for not being sexy. I wasn’t trying anyway. I was able to use the invisbility cloak of disability to begin to experiment with femininity, with ornamentation, without needing to be perfect. I could wear a low-cut shirt, I reasoned, because I’d have my cane. Nobody would look at me anyway.

(Oh, but it surprised me, the first time somebody looked anyway.)

Being disabled meant, for the first time, having the ability to talk about my body and my frustrations with it without judging it as bad. It meant that I, with all my flaws visible and invisible, was still worthy. That I still possessed dignity. That I was still human, no matter whose standards I failed to meet.

I don’t know how to explain any of this. I don’t know how to respond when I walk into work now, freely and unassisted, and have a coworker say, “Hey, you aren’t using your cane! That’s fantastic!”

The orthotic lift I started using a year ago finally stopped hurting, enough that a slight increase in height at the end of September took away the pain in my knee within two weeks, which got rid of my need for the cane. My ambient pain has at least halved. I’m not relying on prescription painkillers to get through my day. I can climb stairs. I’m beginning to hope I can even fence again. After so long living with pain I didn’t think would ever go away, I almost don’t know how I feel. I guess I’m happy. I’m cured, right? I’m enjoying my body again. I definitely don’t miss the pale, persistent ache in the shoulder of my caning arm that no height adjustment could completely banish. I ran to my car last week, just because I can do that now.

My cane still hasn’t moved from its habitual place, on the floor of my car between the seat and the door. I don’t take it out to use it anymore, haven’t touched it for the last two weeks, but I can’t bring myself to hang it up. Sure, part of me’s waiting for the honeymoon to end and the pain to come back at any moment, but that’s not it. That cane has been a friend to me. It’s been part of my voice, my statement about who I am, and a lack of apology about being flawed in public. It’s helped me move, let me go places, allowed me to function. It has been a source of succor to me in my hour of need, and I find it as hard to cast aside now as it was to pick up in the first place.

What I really want to say to the well-meaning people who wish me health and happiness is, it isn’t about the cane. It wasn’t about receiving pity from people in public for being disabled. It wasn’t about the looks or the whispers. I was in pain that disabled me from truly living for years before I picked that thing up. It was never about the cane.

It was about me.

Guest Post: Learning to Write About Disability

Mouthyb is an MFA student, majoring in nonfiction. She teaches first year students writing and second year students creative writing. In February of 2010, she will apply to PhD programs to study the effect of class discrimination in the college classroom. She is too excited to spit at the thought of a longitudinal study of the ways poor students are sloughed from the academy, so that she can put together a series of pedagogical suggestions. Someday, mouthyb plans to put together an entire department designed to study the intersectionalities of class, but she will never leave the classroom if she can help it because that’s where the good stuff happens.

This is my first post for FWD, although I occasionally hang out at Shakesville and other feminist blogs. When I received an email invitation to write for this blog, I sat down to plan out a set of entries on the sexualization of disabled and poor women’s bodies and promptly discovered something new to me. I’ve spent the last four years writing about child abuse, domestic violence, about being a sex worker, being queer and poly, about class and academia. I’ve turned those pieces in to workshop and sat through hostile and cruel critiques, and gone back and done it again because I honestly believe that these stories need to be told.

But writing about my own disabilities is scarier for me than any coming out I’ve done before because of the way disability is viewed. I went through 5 drafts in 3 days and kept banging my head against the walls. Which told me that this is what I needed to write first.

When I mention CPTSD, my disability, I get cast by the people around me in ways I find frightening. Even people I would otherwise think of as nice people, people who I work with daily, who have had a chance to see me working productively, seem to draw back from me—as if my disability makes me so different that they can have little in common with me. I become suspicious, because the way we are cast in society means that we are viewed as defective. I am viewed as unable to distinguish reality because my problem is mental. And therefore I am capable of anything.

And capable of nothing.

That’s what scares me the most about talking about disability. It’s being reduced to someone who is so broken that they are capable of nothing. And that’s exactly why I mean to talk about it. Because, like the other stories I write, talking about disability is a way to reclaim that agency. To demand and demonstrate that my disability does not mean that I am reduced to damage.

Recommended Reading for November 16

Just by luck of the draw, today is all news all the time.

Autism is not a dirty word

“They have one line and they just repeat one line. It is a very bizarre sense of autism.” Pierre Lellouche, the French minister for Europe, made headlines with his attack on the British Conservative party’s attitude to the EU. For us Guardian readers, sympathy with Lellouche’s frustration in his dealings with Hague and Cameron will be overshadowed by annoyance, even outrage, at his pejorative use of the word “autism”.

Wikipedia tells us that autism is “characterised by widespread abnormalities of social interactions and communication, as well as severely restricted interests and highly repetitive behaviour”. Doesn’t that describe the Tories in Europe to a T? We all know what Lellouche meant. He wasn’t trying to give a diagnostic definition; shouldn’t we accept his choice of words – as his spokesman has pleaded we should, since “President Sarkozy is called autistic every day” – simply as a colourful way of making a point?

Mind Your Language: Words can cause terrible damage [And, again – I disagree with the idea that calling people names based on disability is the last acceptable taboo and that people are always punished socially for using racist slurs, and never punished socially for using ableist slurs. This isn’t a zero-sum game – we’re not somehow getting less abuse if we acknowledge that other people are getting abused, too. However, I think there’s a lot of good in the article.]

So why is it acceptable against people with disabilities? When did they become such a forgotten minority that they ceased to matter in the battle against bigotry? A group so exiled still from mainstream society that it has become acceptable to fling around hateful words such as “retard” and “spazz” without a murmur of disquiet. Not just in the playground, where these words and many more like them are commonplace, but online, in the office, in the home and in Hollywood.

Employers anxious about hiring people with disabilities, but see their value

More than 100 human resource executives from a cross-section of Ontario-based firms took part in the study commissioned by the Job Opportunity Information Network. JOIN helps individuals with disabilities to find and maintain employment, and assists employers in recruiting candidates.

Among respondents, 36 per cent say they were discouraged from hiring a person with a disability out of concern that it would be harder to dismiss a person with a disability than someone without one.

Family: Gym Took Advantage Of Man With Disability

The brothers of an Indianapolis man claim a local gym took advantage of their developmentally disabled sibling, signing him up for a contract that he couldn’t understand.

Mark Hannon is 49, but functions at a much younger age, the family told 6News’ Rafael Sanchez.

That’s why they were upset when Hannon told them that two men representing Bally’s Total Fitness came to his door last week, offering to sign him up for a gym membership.

Harvi Carel: My 10 year death sentence

“So, how long have you got?” The first time I was asked this question, I was dumbstruck. The horror of it, and the casualness with which it was asked, was too incongruous for words. Was it simply curiosity? Ignorance? A clumsy attempt to “connect” with me? What else could motivate someone to ask such a horrific question? Yet, it’s a question I have been asked again and again – by friends, acquaintances, even strangers who have seen me sitting in a café with an oxygen cylinder beside my feet.

Once you are ill, I realise, you become fair game. You slide down an implicit social ladder. Others begin to perceive you as weak and unimportant, an object of pity and fascination. In asking: “How long have you got,” they compress all their horror, anxiety, pity, and relief that this is someone else’s story. How else to explain how people find the obtuseness and cruelty to ask you – in so many words – “When are you going to die?”