In light of all the disability issues recently, and inspired by katemoore's beautiful entry prior to this, I thought I would share my own experiences of how living with a disability has influenced my feminism.
I am very new to disability rights activism, and still learning. It is very probable that I will say something that goes against key ideas in the field, or that is deeply problematic in some way - which is why this is nothing but a very personal (and difficult to write) post. This is how the form of feminism I practice has departed from some norms and developed in unusual ways because of my disability.
I have lived for many years now with a mild form of epilepsy (a seizure disorder); mild enough that I don't have seizures on a regular basis, but serious enough that I am severely limited in what I can do without risking a seizure. I also have terrible migraines, which basically all adds up to my brain being a total mess.
This has changed the way I view many issues, the way I interact with myself and my body, the way I interact with other feminists, and simply what I can do as a feminist. My energy is usually taken up entirely by day-to-day activities, which means I can never be an 'activist' of the sort most people usually imagine, or attend many socials or get-togethers with other feminists. I rely mostly on books and blogs to learn feminist theory, and both are necessarily limited due to time and energy. These are, perhaps, the more tangible things, but it doesn't stop there.
I know many disability rights activists would disagree vehemently, but my particular experiences with my disability have led me to question the basic feminist tenet of bodily autonomy and choice. My body is never quiet or tame; it does not do what it is told. There are times when I watch my body moving even as I desperately tell it not to. I struggle to understand what is going on in my own brain, to match hallucinations or blurred vision with my understanding of what I should be seeing. I do not control my body, and I never will, regardless of any laws.
In a way, I find autonomy really just another form of control. My body fights against control of any sort. The rhetoric of choice simply replaces ownership from 'men' and/or 'the state' with 'my mind'; but I hate pushing my body into ownership of any sort when it rejects that so definitely. My mind controlling my body is certainly a step up from men controlling my body, but it is not enough; I want a feminism that gets away from control altogether, that recognizes the power and life in bodies and the problems of mind-body dualism, not seeing bodies as empty houses inhabited by all-powerful minds.
Living with epilepsy and migraines also influences how I learn to love my body and have confidence in my body. It can be difficult to love a body you sometimes cannot understand, and when you are frequently limited because of it. It's not easy to love your body when you're crying in pain in a public place. And having confidence in your body when you know it could basically shut down any minute is challenging, to put it mildly.
But on the other hand, my uncooperative body gives me strange moments of connection that I may not otherwise have. When I have a migraine or lie in bed jerking around for no apparent reason, it is incredibly painful and frightening - but these are moments when I can do nothing but be with myself. I am forced into a kind of hyper-awareness of my body, forced in a way to make peace with myself.
This odd mixture of struggling and connecting with my body leaves me in a complicated place when it comes to the ideal of loving your body. At times I passionately believe in this ideal more than words can say - it is me, it is all I have - but at times it can seem incredibly condescending or hurtful.
Having my bizarre brain also results in strange experiences that drive home an appreciation of just how mysterious and fascinating this world can be. Sometimes migraines come with hallucinations that take the form of an unbearably beautiful barrage of bold colours; sometimes I find myself in a state where the intensity of sound and light is all I can process. These are painful experiences, but they are also beautiful in a way, and they keep me believing in the impossible complexity of this world. I am not a religious person by any stretch of the imagination (quite the opposite), but I could never adhere to a form of feminism that completely relies on Western Enlightenment-style rationality or a total de-animation of the world. It simply does not make sense to me.
Not, of course, that any feminist without a disability couldn't have exactly the same issues as what I outline above (I know for a fact that some do), but my goal was to illustrate how disability and feminism cannot be separated for me; my disability directly informs the beliefs I hold, the way I experience the world, and therefore the types of feminism I can and cannot adhere to.
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What a fascinating entry and one that I can relate to in numerous ways.
Before I found a combination of medications that usually keeps me more or less stable, I knew I couldn't frequently trust my mind to provide a rational sense of what others perceived as reality. I perceived slights from people who meant no disrespect, felt utterly alienated from people who tried to make connections and did not know how to respond, and in manic states frequently believed that I had some mystical power of perception that separated me from the rest of humanity. If these things were not so destructive, they might be viewed as beautiful.
My overall perspective has been shaped by my illness and though at the moment I am in a more or less stable state, I also know that at any moment I might be headed into an episode, at which point I am no longer in control of my moods or my brain function. Though I am a man, I too have felt as though many times choices have been made for me, not by me, and in my sickest times, I have no option but to relinquish control of personal decisions into the hands of either my girlfriend or a close family member.
The God I believe in is a particularly mystic deity, as is the faith I hold based on direct revelation to the self. It has provided me a sense of stability when much of my life has not been stable and like you I find myself incapable of being satisfied in the sterile confines of strict rationality. In addition to being not especially romantic, it is so lonely to me.
I do not define myself by my disability, nor do I wish to define my own identity by it, but I do admit that it has made a powerful influence on my life.
This always makes me feel better;
http://en.wikipedia.org/wiki/Stephen_Hawking
And also this:
http://www.washingtonpost.com/wp-dyn/content/article/2006/07/12/AR2006071201883.html
I hear you about struggling with the feminist idea of bodily autonomy and choice.
What does being "independent" mean?
Even as an abled-bodied feminist, I kinda hate living by myself. There are just some things I need help with. Moreover, I even *want* to be dependent on someone else. (And I imagine I would like them to be dependent on me!)
Ultimately though, I think we need to differeniate between being dependent as a human versus being forced/socialized into dependence in regards to our perceived gender.
Very nice post!
The way I see it (and of course anyone can disagree with me) is that autonomous means different things to different people. Just like it means being able to have a baby to some women and not having to have a baby to others, it means something different depending on your experience or lack of experience of disability. To me, autonomy for disabled people means giving them/us as much of the ability to do what we need and want to do, but this means a dependence on other people that doesn't fit with the rhetoric of independence. What most able-bodied people don't realize, honestly, is just how dependent they actually are on other people... Non-able-bodied people are just more dependent on others, or dependent in other ways. For example: "'Culture of We' Buffers Genetic Tendency to Depression".
As for control, I don't believe there is such a thing as complete control over your own body. But there is still a big difference between being forced to do something against your will by someone else and being forced to do it by your own body.
Two nights ago, I had to leave my section of the hospital to answer a code blue. An employee, of all people, was the person collapsed and seizing on the floor in the main hall of the acute ward.
I'd never met her before, but she is a very young woman with a serious, as yet undiagnosed seizure disorder. It's happened before, and she's been hospitalized before. But because despite testing and medications no one knowing what's wrong, they simply send her home when she comes out of it and feels better.
Because this woman is also large, like literally three of me, the available staff (night shift) could not move her safely, even with a mechanized patient lift. This woman in need of help on the floor had to wait (she was out) and be treated down there, while we waited for firefighters to help us. It took eight of us, male and female, to get her onto a gurney to take her to the emergency room. This took about 30 minutes. WHILE IN the hospital just down the hall from the ER.
I am not going to judge this woman for her size. But the simple reality is even the hospital staff was not equipped to assist her - budgeting restraints will keep it that way, keep that in mind when hailing Obama's plan to lower costs by cutting payments to health care providers - when she could not help herself and needed help most. To remain on the floor out in the open and have to wait for firefighters to come help lift her (my hospital has had situations like this before with other people) must be humiliating. It was frustrating for me not to be able to help.
I had persisting pains in my knee (later found not to be a sprain) propping her up on her side, because even with pillows, her body did not have the rigidity (no offense, like a partially filled water balloon) to hold her in place. Another nurse hurt her back sometime while moving her.
This young woman has ambition. She doesn't want to collect disability at home. She wants an education and has two jobs. She wants to go to nursing school herself. Her health condition is going to make it veeeeeeeeeeery difficult to succeed during years of school or future work. She might lose her driver's license, and she drives herself to work.
Some coworkers have been speculating she wouldn't be allowed to work anymore. I have told each of them that would be discriminatory (she was hired despite her known history). I agree she shouldn't be driving for now.
I can't imagine the kind of stress that woman or her family experiences, though I do know how it is not to have a job or money for years at a time. But I've told people at work, I appreciate having my health and my family. People like this young woman literally might not know what tomorrow may bring. Saving to buy a house? Sending kids to college? Retirement? My long term expectations may have little meaning.
I am sure independence and autonomy are real issues for her as well. The concept of young women (and others) being allowed to do what is right for themselves, as long as they do not hurt others is indeed an ablist concept, and requires a certain economic and social privilege as well.
I am a nurse in long term care. Basically I am looking after the immediate needs of my clients (like keeping fed, taking medications on time, and out of dirty diapers) and trying to keep them safe despite themselves and their chronic conditions, until they die hopefully years from now. I do not hold illusions of them getting "well" or leaving the hospital (their families are unwilling or unable to provide care and there is a waiting list for elder care). All of them and their loved ones have had their life plans and expectations changed. They have frustration and clinical depression. They have body image and self worth issues. I know because they tell me.
Activists and rights advocates need to consider the specific needs of people like these and see them addressed as well.
"I know because they tell me."
That is, those who have the mental cognition and physical ability to communicate at all. About half my clients do not.