[Content Note: Disability, Body Talk]
[Repost Note: This is a repost of an article that previously appeared on Shakesville.]
One of the fun things about having a disability is how my words are constantly policed in relation to it.
In public spaces, I'm not supposed to talk about my disability because it makes people uncomfortable to hear about all the ways in which I am disadvantaged and they are privileged. Talking about my disability can sound too much like complaining, or like I'm blaming them for not having to deal with the daily struggles that I cope with. And sharing what it's like to live with a disability can be overwhelming and upsetting, so I'm frequently expected to keep all that stuff to myself. I'm supposed to be silent on the subject.
At the same time, I'm supposed to be willing and ready to divulge every aspect of my personal life as it pertains to my disability on demand in order to justify why I can and can't do various things throughout the day. Why don't I want to go out to lunch? (Because I'll have to take the stairs and walk across the parking lot to the car.) Why do I only work every other day? (Because I have to lie down and rest for several hours every other day if I don't want my back to seize up.) Why won't I attend this evening function? (Because my medication makes night driving extremely difficult.) Why won't I wear this lovely necklace? (Because anything hanging from my neck causes me severe pain.) And so on. I'm supposed to be an open book, ready to drop my defenses and emotionlessly share anything and everything in order to clarify curiosity as needed.
But not too emotionlessly, mind you. I'm supposed to be cheerful about my disability so that I don't discomfit anyone else in the room. It's alright for them to grimace and make sad faces and shake their heads and sorrowfully opine I don't know how you do it and You are so brave just to get up in the morning, but it's my job to smile and grin and nod and reassure them that, no really, I'm happy! I'm not sad! I don't get pissed off at the world for the shitty luck of the draw that left me with a high-maintenance body that is constantly in pain! And I definitely don't feel unrelenting rage at the innumerable horde of doctors and nurses who have systematically dehumanized me and failed to treat me with basic human decency because of various deeply-held prejudices against women, fat people, and folks with chronic pain conditions!
No, sir. I'm a cheerful disabled person. No rancor here. That is what is expected of me, and I know my place in public well enough to deliver because I know the social consequences that will follow if I don't. I have had a lifetime of living with a disability to learn how I'm expected to behave in public spaces.
Most especially, I've found that I'm not supposed to express any form of unhappiness against my body. Even to the people who know me well, and who are comfortable with the occassional rage-fest against fate, god, and/or the medical establishment which constantly thumbs its nose at me, the idea that I might not be happy with my disabled body can cause them profound discomfort. And that is deeply frustrating to me, because it seems very natural to me that a person with a disability that causes them constant pain might -- just might -- have a complicated relationship with their body.
I love my body. I love the way I look in the mirror. I love the feel of my skin, and the texture of my hair. I love knowing the location of every little childhood scar, and reminiscing about the childish mishaps that earned those marks. I love that I can swim like a fish, and that I can walk all over the State Fair every summer. I love the freckles on my shoulders and the soft blonde hair on my arms. I love how my hands look so delicately similar to my mother's, and the way my hair and eyes look like copies of my father's. I love my body so much, even when the whole world seems to hate it for being fat and female, yet still I love it.
I hate my body. I hate the way my surgical scars remind me of painful moments I would rather forget. I hate the sensation of the rods grafted to my spine, and the way they constantly ache even though I'm not supposed to feel them, and I hate how they set off metal detectors. I hate the way the skin around my incisions is frequently numb and can't feel any sensation, and how my circulation has been damaged from multiple surgeries.
I hate the way I'm in pain constantly. I hate that there's only one position I can comfortably sleep in. I hate that my body responds to my medications in numerous upsetting ways: dizziness, fatigue, and short-tempered bursts of frustration at the people I love. I hate that I can walk across the State Fair in a day but that walking across a long parking lot can leave me motionless for a week. I hate the randomness and the never-knowing that always accompanies a flare-up. I hate the conflicting advice from my doctors: Take it easy or you'll hurt yourself, but don't rest too much or your muscles will atrophy. Don't lift anything over fifteen pounds, but you need to keep exercising or you'll only get weaker. And I hate that all this conflicting advice means that no matter what I do, I'm doing it wrong.
I hate that necklaces hurt me, and that bras cause me piercing pain. I hate that it hurts when my dad hugs me, because he forgets not to rest his weight on me. I hate that it hurts when my mom pats my lower back, because she forgets that my scar is tender. I hate that there are times when I am making love to my husband and suddenly all I can feel is pain, and all I can think about is how much I don't want him to realize it, because it's random and he's not responsible and I don't want him to feel guilty for something that isn't his fault and most of all I don't want my disability to take away yet another thing in a lifetime of taking away things from me.
I hate how expensive I am, and the mountains of medical bills and accommodation costs. I hate that I cry every day that I come home from work because my neck hurts from staring at the computer screen and my back hurts from sitting in my chair. I hate that I can't dance with my friends, that I can't ride roller coasters with my family, and that I can't go on mountain hikes with my husband. I hate that I have to stay home while my husband and family go on vacations and family reunions. I hate that there's a whole world of no-no-no out there, of experiences that I'm preventing from having on account of this body that is painful and expensive and frequently feels more like something in which I am trapped rather than a vehicle through which I can experience the wondrous world.
So, yes, I have a very complicated relationship with my body. And sometimes I feel like expressing that without being chiding and condemned and contradicted.
I've found that when I say things like I have a craptastic body or I want to trade this body in for a new one, that the people I'm speaking to tend to rush to reassure and contradict and police and silence. They'll tell me that it's really a lovely body, or that scars don't matter, as though my issues with my body are a matter of vanity. Or they'll reassure me that my disability is not that bad, that it could be so much worse, as if I'm complaining a little too early in the whole disability process. At least you can still walk, the message seems to be. Come back when you're in a wheelchair. They'll offer as comfort that the things I'm missing out on aren't all that, and I really shouldn't get down in the dumps about little things like roller coasters and mountains.
And I understand the impulse to comfort and console, I really do, but the message that comes across with these gentle reassurances and careful rebukes is that I'm really not supposed to express any dislike whatsoever of my back and my body. That it's wrong to do so, and that the only real reasons I could have to do so are bad ones: Vanity. Selfishness. Envy. Lack of perspective. Lack of gratitude for the good things I do have in my life. And so on.
The message I receive, over and over again, is that I'm just not allowed to dislike my body. Ever.
Worst are the people who suggest that my expressing any kind of displeasure with my body somehow adversely hurts people with bodies similar to or worse than mine. Just think how your words would make those people feel, they say, as though I'm not allowed to suggest that having a chronic pain disability might be anything less than peaches and rainbows. Maybe the idea is that all people with disabilities are constantly in a fragile state of convincing ourselves that life with a disability really is peaches and rainbows and if any one of us voices an opinion to the contrary, then the whole system will break down.
But whatever the reason, the message is the same: that because I am disabled, I must silence myself.
I'm sure there are people with disabilities out there who love their body completely and without reservation and never have a single negative thought about their body. (People are so varied and complex that it would be amazing to me to learn otherwise.) But I am not one of those people. Sometimes I dislike my body -- sometimes I dislike my body very strongly -- and I reserve the right to say so as part of disability advocacy. I reject the framing that people living with disabilities must be cheerful at all times, and that they have to stifle and silence any complex feelings they might have towards their bodies in service to an abstract Greater Good that demands stiff upper lips from everyone.
Part of disability advocacy is understanding and embracing that people living with disabilities are people, which means that they are complex and complicated and they have feelings about their selves and their bodies which they are allowed to own and express and explore. Expecting people with disabilities to be silent and to conform to a one-dimensional expectation of constant cheerful resignation is unfair and oppressive.
Part of body-acceptance advocacy is understanding and parsing the difference between body-negativity that reflects on whole populations without consideration for their consent versus body-negativity that is limited entirely to individual exploration about something that is a source of personal pain. "My fat body is gross" is a kyriarchial aesthetic value judgment that is applied across entire populations regardless of intent and is rightfully off-limits in a safe space; "my garbage back is acting up" is an expression of an individual struggle with physical limitations and the complex and validly negative feelings which can sometimes coexist with a chronic disability and is a statement that does not apply to anyone but the speaker. That contextual difference is important and cannot be ignored.
My feelings about my disabled body are mine to have and own and express, and whether or not those feelings I have about my disabled body make other people uncomfortable at my failure to conform to social expectations for people with disabled bodies is not my concern. To police my feelings and to suggest that I'm not allowed to have and express any feeling other than pure pleasure at the body that causes me chronic pain and deeply limits my movement through this world is deeply silencing and marginalizing to me.
Part of being disabled in a public space is navigating the daily demands that I say nothing about my disability unless and until I'm asked about it, in which case I'm supposed to divulge every aspect of it, in a cheerful manner that makes it totally clear that I hold no ill will towards my body and that I love dispensing this information on demand and that I totally don't feel pressured having to share right now, no really.
But when I am in a safe space, the least I can be allowed to do is express the feeling that my relationship with my body is complicated and that I sometimes hate my body for hurting me, and that it's okay for me to feel that way.