there is no spoon
I have been very, very ill.
I mean, I'm only just getting back the ability to sit up, eat, talk, or type, ill. I had my first solid food in more than a week today. And it got me thinking.
See, there I was, incapacitated, unable to sit up or wash myself or feed myself, body weakened by four days of 103-degree fevers and convulsive chills and dehydration, in so much pain that I couldn't drink clear water. Everything hurt--joints, tongue, you name it--even down to my eyeballs, which were in so much pain I had to blindfold myself. I had to be taken care of. At the doctor's, I needed a wheelchair, and nobody talked to me like a person.
And I was angry.
I was hurting, I was feeling sorry for myself, I was miserable with the ravages of whatever illness this was, but you know what? I was angry.
Isn't that interesting? Angry. I felt a sense of profoundly wounded pride, I was upset at the total stripping-away of my dignity, I didn't feel like a person. I was sitting there naked and reeking and unable to drink water by myself, and it made me mad.
What, because I didn't deserve it? Because it wasn't fair? Because I'm entitled to an able body and what comes with it? Because my inability to take care of myself or even sit up filled me with a thousand childhood messages about self-sufficiency and strength and weakness and illness-as-moral-failing, and the result was self-loathing?
Yeah. That.
I wasn't just feeling pain, though that was significant and independently upsetting. I was feeling a temporary loss of privilege, and my reaction was not pretty. Phrases like "reduced to this" came to mind. Phrases like "this is what the proud daughter of a warrior clan comes to." Words like "pathetic" and "weak" and "vulnerable." I was frightened, I was suffering, but more importantly, I didn't feel it was fair.
I find that fascinating. I expect to be treated like a person who knows what a fever is. I expect to be able to drive myself to the store for medicine or food. I expect to be able to get up and walk to the bathroom. I expect that my acceptance of help from others in any given hour is optional, and a matter of character. I expect to be able to feed myself. And all of that went away. All of those expectations. I was weak, and vulnerable, and dependent. I needed--still need, I'm not all recovered yet--assistance to perform basic life functions. And that gets to me, hard.
Where do I get those expectations? And where do I get off feeling like less of a person for not meeting them or having them met by the world? Where do I get off feeling that way when I find the idea of looking at other people with similar limitations that way, well, abhorrent? And do I, in the end, still apply that internalized cultural ableism to my lens on the world?
My answer to that last, in the honesty of my vulnerability, is yes. And it bothers the hell out of me. I know I'm not alone in this, and I know my able-bodied privilege is one of the last I became aware of. I credit others in the blogging community with making me less of a damn fool about it. And I know it's there. I may be only temporarily able-bodied on a good day, but it's a whole lot of able, speaking as a former competitive athlete who's been, nearly without exception, healthy as a horse her whole life. I take it for granted, and when it's taken away from me, I take it personally. I take it like a personal offense. I take it as unfair.
Well, isn't that nice for me.
I'm privileged. For the most part, for now, I have an astonishingly able body, and with it the privilege and luxury of nitpicking my health and choosing when to be dependent on others or not. And that's been waved around in my face this week, and I've been forced to confront some of that privilege.
I'm talked before about how important solidarity is between the trans and disabled communities. Now, more than ever, I'm convinced of it. Ability privilege is the one privilege that we all, at some point, lose. So we'd all better suck it up and realize that this problem needs all of our effort no matter what our bodies do for us right now, because none of us is entitled to our health, and there's nothing fair about it for anyone. This is not a cause anyone can afford to ignore, and there's already amazing people working hard at it--there have been for many years--and it would behoove the rest of us to listen to them, and listen well.
And then it would be good, right after some of that listening, to lean forward and say, "Okay. What can I do for you?"
I mean, I'm only just getting back the ability to sit up, eat, talk, or type, ill. I had my first solid food in more than a week today. And it got me thinking.
See, there I was, incapacitated, unable to sit up or wash myself or feed myself, body weakened by four days of 103-degree fevers and convulsive chills and dehydration, in so much pain that I couldn't drink clear water. Everything hurt--joints, tongue, you name it--even down to my eyeballs, which were in so much pain I had to blindfold myself. I had to be taken care of. At the doctor's, I needed a wheelchair, and nobody talked to me like a person.
And I was angry.
I was hurting, I was feeling sorry for myself, I was miserable with the ravages of whatever illness this was, but you know what? I was angry.
Isn't that interesting? Angry. I felt a sense of profoundly wounded pride, I was upset at the total stripping-away of my dignity, I didn't feel like a person. I was sitting there naked and reeking and unable to drink water by myself, and it made me mad.
What, because I didn't deserve it? Because it wasn't fair? Because I'm entitled to an able body and what comes with it? Because my inability to take care of myself or even sit up filled me with a thousand childhood messages about self-sufficiency and strength and weakness and illness-as-moral-failing, and the result was self-loathing?
Yeah. That.
I wasn't just feeling pain, though that was significant and independently upsetting. I was feeling a temporary loss of privilege, and my reaction was not pretty. Phrases like "reduced to this" came to mind. Phrases like "this is what the proud daughter of a warrior clan comes to." Words like "pathetic" and "weak" and "vulnerable." I was frightened, I was suffering, but more importantly, I didn't feel it was fair.
I find that fascinating. I expect to be treated like a person who knows what a fever is. I expect to be able to drive myself to the store for medicine or food. I expect to be able to get up and walk to the bathroom. I expect that my acceptance of help from others in any given hour is optional, and a matter of character. I expect to be able to feed myself. And all of that went away. All of those expectations. I was weak, and vulnerable, and dependent. I needed--still need, I'm not all recovered yet--assistance to perform basic life functions. And that gets to me, hard.
Where do I get those expectations? And where do I get off feeling like less of a person for not meeting them or having them met by the world? Where do I get off feeling that way when I find the idea of looking at other people with similar limitations that way, well, abhorrent? And do I, in the end, still apply that internalized cultural ableism to my lens on the world?
My answer to that last, in the honesty of my vulnerability, is yes. And it bothers the hell out of me. I know I'm not alone in this, and I know my able-bodied privilege is one of the last I became aware of. I credit others in the blogging community with making me less of a damn fool about it. And I know it's there. I may be only temporarily able-bodied on a good day, but it's a whole lot of able, speaking as a former competitive athlete who's been, nearly without exception, healthy as a horse her whole life. I take it for granted, and when it's taken away from me, I take it personally. I take it like a personal offense. I take it as unfair.
Well, isn't that nice for me.
I'm privileged. For the most part, for now, I have an astonishingly able body, and with it the privilege and luxury of nitpicking my health and choosing when to be dependent on others or not. And that's been waved around in my face this week, and I've been forced to confront some of that privilege.
I'm talked before about how important solidarity is between the trans and disabled communities. Now, more than ever, I'm convinced of it. Ability privilege is the one privilege that we all, at some point, lose. So we'd all better suck it up and realize that this problem needs all of our effort no matter what our bodies do for us right now, because none of us is entitled to our health, and there's nothing fair about it for anyone. This is not a cause anyone can afford to ignore, and there's already amazing people working hard at it--there have been for many years--and it would behoove the rest of us to listen to them, and listen well.
And then it would be good, right after some of that listening, to lean forward and say, "Okay. What can I do for you?"
Labels: body politic, turning points, unifying theory
posted by little light | 6:44 PM
9 Comments:
Beautiful essay. Fair or not, I hope you are well again soon.
You are such a wonderful writer. I love how you connect events in your life to political awareness, a lifelong goal I have, too. :)
When I had the pneumonia, and was too sick to even sit up without help, much less procure food or hobble to the potty, I wasn't angry: I was too busy being completely terrified. I didn't think I was going to die, necessarily, but for the first time I realized that without people worrying about me, I probably would. That was really hard to face, for me, because I've spent so much time and effort training myself to run away and hide like a wild animal whenever I'm sick or hurt. Must hide weakness at all costs! Must never show vulnerability! Growl! Hiss!
When I got angry, though, was when I was in the ER for the second time in as many days, and then the third time, and I kept getting progressively more dicked around. That's when I realized just HOW broken the system is. I consider myself to be an extremely well-educated and assertive person in general as well as when it comes to dealing with The Medical Establishment. But when I was reduced to not even knowing how old I was, and being asked why I had come back (when my fever had held steady at 105 for over two days) and not knowing how to answer, and having to be wheeled around on a gurney, it was horrible to realize what would have happened if I hadn't had my mom and A with me. Because without other people making me, I wouldn't have gone. And without other people doing the talking for me, I would never have gotten the care I needed.
And that's really wrong. I have enough troubles for daring to come to a doctor in my offensively obese body, I can't even imagine how it would be if my body were otherwise "wrong" in the eyes of those with power. That scares the bejesus out of me.
Absolutely, Factorial. Absolutely. And honestly, a lot of my anger and shame were completely self-directed.
I do that animal thing too. When I'm ill, I quarantine myself and tough it out. I panic at showing weakness or physical vulnerability to others. I go to ground.
And suddenly I couldn't. I wasn't even in a position to ask for help if I needed it. I couldn't talk or move. I couldn't pick up the phone or send an email. If I hadn't had someone very devotedly checking in on me from the very start, I would have been hospitalized--alone, and without the ability to communicate who I was or what was wrong.
And that's terrifying. I didn't focus on that, here, but it was terrifying. Being wheeled into Urgent Care and not addressed like a person because I was so out of it--not even at the worst of things--if I'd been alone, there would have been nobody to speak for me.
As it is, I kept trying to explain my fever, and they kept being utterly dismissive, baby-talking to me about how a fever is the body's way of ridding itself of infections--and I damn well know what a fever is, but they wouldn't listen when I said I'd had three days of fevers of 103 degrees and I normally run a little cold.
I was raised with obsessive values surrounding self-reliance and self-sustenance and no weakness ever ever, and the fact that I couldn't just isolate and tough it out made me really angry with myself. But the spooky bit was definitely there. If I hadn't been taken care of the way I was, I'd have been hospitalized, and probably not in time to avoid doing real damage to myself.
And there's the other thing you're right-on about: deviant bodies at the doctor's office. People keep telling me to go to the doctor, but it's a huge effort to find a doctor my work insurance covers who knows enough about bodies like mine to guarantee they won't recoil at the sight of me naked, let alone know what I might be at risk for or what's normal for my health and body. I've got coworkers thinking I'm so sick--virally!--because I'm on hormones, after all.
I have that classic trans allergy to doctors. What the hell do you do when, like last time I was in the ER, they're debating over how to refer to you and sort of shrugging and saying, "Well, this condition is forty percent likely in women, thirty percent in men," like they have no idea which I count as, even medically? I mean, if you can count on getting decent care, aside from prejudice, the ignorance is astounding. And like fatphobia problems, there's always that "Well, you're just sick because you're fat/trans. Stop it."
Little Light,
You should submit this to the Disability Carnival one month. I am constantly astounded by your willingness to try and see the world through the eyes of other marginalized people. It's something I've learned not to take for granted. There are plenty of people who, though abused and ignored by society themselves, are not willing to believe that it's possible they are contributing to someone else's marginalization.
The feelings you described hit me the hardest when I first had the experience of needing to rely on someone else to clean me off after using the bathroom. The thing is, I've cleaned people off before and I can do it with a smile and without passing any judgment on the person. However, having my partner seeing and cleaning my poop from off my ass made me sob inconsolably. I mean, there was no way someone could do that and go on to look at me as sexually desirable ever again, right? At least, that's how I felt.
And yes, I was also angry. I was angry at myself for feeling unlovable and humiliated too. It isn't fun and I wish you didn't have to experience it but I'm glad that you've taken this experience and turned it into something you can use to help you be a better ally to others, especially people with disabilities.
I love you girl!!
You don't know me and I don't know you. I followed a link at feministe.
Thank you for writing this. You articulated what I could only feel. I had cancer last year which required a very major surgery with a very long recovery period. I was completely helpless for a few days and mostly helpless for weeks. My mother had to bathe me for the first time in 40 years. My partner had to clean my surgical drains. I'm still struggling with the emotional fallout from it.
I was in the ICU last night to visit a friend and had to pass a few patients who were in obvious distress or very seriously ill. Even though my friend is recovering and doing well, I left sobbing because seeing those other patients scared me so much. I couldn't figure out why but you nailed it. It's the fear of losing able bodied privilege. A privilege I rarely thought about. It was terrifying to realize that my life literally depended on someone else giving a damn. Like everyone else on the planet, it always has and it always will. That was just made nakedly obvious by my surgery experience.
Thanks again.
What Daisy said, and, as a good writer, she would know. And I wondered what was happening with you.
I had a life threatening illness when I was six months pre-op. Ten days on an IV, and surgery to remove a salivary gland that had rotted and was putting extensions of rot into my brain. I was angry a lot then, but mostly at some of the hospital staff, who had name and pronoun problems. The others more than made up for it, though -- I came out of there, on balance, with gratitude for human kindness.
No, we can't do it all. But we never did. And we can do ourselves and everyone a lot of good by interfering with the sneers that some people get for being "disabled."
TYFBT,
risa b
I've been ill most of this year. I have had little to no energy for the past couple of years, in fact, and this year brought to light why: I have ESRD. My kidneys are failing, have failed in fact, and I start dialysis next month.
You're entirely right about able-bodied privilege. I have railed about the kidney disease not being fair: after all, despite being a diabetic, I took care of myself, and this isn't supposed to happen. I was told at the beginning of the year that I'd need a transplant or dialysis in 3-4 years, not this year, but here I am. Illness is no respecter of person. It comes to us all eventually in one form or many, temporarily or permanently. I have railed against being considered permanently sick "just" due to being a diabetic for years now, and now I am faced with the fact that without outside medical support, I will definitely die. Being able-bodied is not a privilege I have, and I miss it daily, and castigate myself for perceived faults that are really brought on by circumstances I can only do my best to mitigate, not control.
I have had to rely on my partner for money, because I can't work. I have applied for disability but was turned down (and am reapplying with a lawyer), and right now I'm bringing in no income. I am completely dependent, and I Hate It.
I hate the getting talked down to by members of the medical profession. I hate being told I will do this, I won't do that, as if I had no free will. I hate people talking as if I weren't there. I hate living in constant pain, as I have been doing since September 2004. I hate the feeling that I'm disappointing my family, my partner, and myself by the simple fact of being chronically ill.
I see this privilege and am trying to get past it. I wouldn't regard others as failing for the same things that cause me to see failure within myself. Why are we so hard on ourselves?
I've always had very similar feelings directed at myself whenever I've fallen ill. And while a lot of it derives simply from that loss of able-bodied privilege, I also find that part of it is rooted in the coping mechanisms I created to deal with growing up trans. So much of my childhood was spent desperately clinging to the notion that "I am not my body" that any visceral reminder that I wasn't some ghost in a shell sparked all kinds of feelings of resentment, rage, and shame. Granted, since I've transitioned that animosity I've felt between my mind and body has subsided somewhat, but it's by no means gone. One little reminder that my mind doesn't have veto power over the rest of my body and it comes rushing right back.
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