I sit at the kitchen table and listen to Bryce as he encourages me to go play soccer with him and his friends.
When I politely decline, he asks again. This time I tell him, “I’m not physically capable.”
“You’re a young, able-bodied woman!”
I grind my teeth and look down, trying to collect myself. I really don’t want to yell at Bryce, who seems well-intentioned in trying to get me to come out and play, but hearing him call me able-bodied is frustrating.
I can perfectly picture it. I’m twelve years old and walking down the hill of Prestwick Drive with my mom and my brother. My left knee turns in significantly as I walk, so that if you were walking up the hill as I was walking down, my legs would form the shape of the letter “K.” I point this out to my mom, and she has me walk a little farther for her, to show her what I mean. I run too, and when I run the “K” is more distinct, and it hurts.
I go to the doctor. First they think it’s my feet. They give me orthotics. I still have pain. I get an X-Ray. I’m inside of an MRI machine, being told to keep absolutely still. It’s been six months since I noticed the “K” of my legs. Fast forward another month, and I’ve been given two small surgery scars and a pair of crutches.
The orthotics mostly fixed the “K.” The first surgery was supposed to fix the problem. The second surgery was supposed to really fix the problem.
It’s been nine years since I walked down Prestwick Drive and wondered what was going on with my knee. I am sitting at the kitchen table listening to Bryce tell me I’m a young, able-bodied woman.
The social model of disability, which Megan Miller explained on Bluestockings here, is helpful to me. She writes, “The social model of disability views disability as the result of a built environment and ideology that exclude anyone who does not fit into the category of an ‘able body,’ in other words, a systemic form of ableism.”
Basically, the social model says that people should be able to make assumptions about my ability status by looking at me (like Bryce calling me able-bodied), and that the world in which I live needs to change structurally and socially to be accessible to me. It attempts to place the problem not within my body, but with the way others treat and accommodate my body. The social model should provide me with relief from feeling like a burden, feeling like I must be lazy, feeling like I do not fit into this world how I should.
People assuming that I’m able-bodied is nothing new to me. I read the sign next to the elevator encouraging me to take the stairs as I push the call button. I can almost feel people’s eyes looking me up and down when I get off only one floor up. The social model helps in that it allows me to say that this elevator is what makes me able to use this building and that their stares and assumptions are uncalled for.
However, the social model of disability fails me when it comes to my pain. My body will not stop hurting if people stop staring.
Sometimes before I even get out of bed, my hips, my feet, and my left knee hurt. Sometimes, I wake up in pain. I walk out of my room in pain, I walk to the kitchen in pain, and I sit and eat my breakfast in pain.
Sometimes I make the mistake of telling someone “my knee really hurts today.” I’m trying to reach out and say how I feel. I’m not looking for pity, just an acceptance that this is my current experience of the world. Usually, I get advice of all sorts of what I should or can do for my pain.
Everyone becomes an expert. I just want them to listen.
Pain is something that the social model of disability can’t explain away. Adding more elevators to my campus’s buildings and changing people’s assumptions will not make my pain go away. The social model is useful, but it is not enough.
Alison Kafer in Feminist, Queer, Crip, offers critiques of both the medical and social model that are helpful to me. She agrees with many of the traditional critiques of the medical model of disability. The medical model often positions disabled bodies as defective and less than with the only goal being a cure, and Kafer acknowledges how this often leads to attempts that do not support the wishes and autonomy of disabled people.
Her critiques of the social model, traditionally favored by more progressive and feminist thinkers are what really resonate with me. Kafer points out that the social model can ignore what it’s really like to live with disability or pain and often makes even the slightest desire for a change seem unacceptable. She instead suggests a political and relational model that allows for aspects of the social and medical models but emphasizes political allegiance and interdependence. The political relational model is about recognizing the many experiences disabled and able-bodied people have with their bodies and the world and coming together to create change that acknowledges these multitudes.
Sometimes my pain is minimal or non-existent, and I can endlessly walk around campus or up and down all the stairs in my house as many times as I want. These times are when disability seems far away to me, an abstract identity I claim to put my experiences in context.
Other times, my pain is high and “disabled” becomes a much more salient identity. I can’t ignore the pain that comes with dancing at a party, I regret running to catch the bus, and I need to ask my friends to go up and down stairs to get something for me so that I don’t have to. Sometimes, I cringe every time I see a set of stairs, and want to cry when I wake up and everything hurts.
My experience as someone with chronic pain can’t be explained through the social model alone. My experiences of disability are clearly embodied in a way that structures and society alone cannot help. There are parts of me that are looking for recognition of my body in ways that the medical model is more suited to. That is, my body is not just different, it is also suffering.
I want to love my body and claim acceptance of it. When I’m in pain, it’s really hard to love my body. I try to think about ways in which my body brings me pleasure and allows me to create and interact with the world, but pain is distracting and difficult.
I hear the language of body acceptance again and again in feminist spaces, both online and in real life. This language isn’t aimed at the way my white, tall, skinny, and conventionally attractive body looks, and that’s completely fine. I understand that I benefit from my society’s beauty standards, and I don’t want to detract from those conversations.
I want to open space for conversation about loving bodies that are weak. That don’t do what we want when we want them to. Bodies like mine in that they are in pain. The tiny surgical scars on my knees barely change my physical appearance, but they are a symbol of what loving my body means to me. These scars are part of a beautiful landscape, but how my body looks becomes a lot less important to me when my body is in pain. My pain becomes a betrayal and my body a burden that I struggle with.
How do I love my body in pain?