I'm envisioning this in its final form as a letter to a friend with whom I don't have enough contact. I want to be a little closer to this person, but can't because disability intervenes. Or, rather, his lack of knowledge about how I understand disability intervenes. If you have ideas about how to make it better, please comment away -- this isn't the final form of the letter; it's more of a way of writing my thoughts and feelings out in conversation with you all.
Dear Friend!
I'm hoping you won't take this the wrong way, but I've been wanting to talk a little about our different perspectives on disability and illness. I'd like to thank you for being so enthusiastic about my increased function, but want to explain to you how "recovery" works for me and what getting better means. That way, I think we won't come adrift over some awkward moments.
Remember when you were enthusiastic about how much better I seemed since the last time you saw me and I kind of shrugged it off? I think you thought I was being unnecessarily pessisimistic about my body and my life. I got the feeling that you were trying to cheer me up and out of it. Things were a little difficult when, after that, I literally and figuratively, turned my back on you and what you were saying. I shouldn't have done that; I'm sorry. I couldn't figure out where to start a conversation with you about what was up and why I wasn't able to celebrate with you.
I'm writing this as a conversation starter -- not as a critique. Please get back to me on anything that seems a little strange to you.
I agree that, since my hip surgery, I have gained significant new strengths and that I am able to do more now than I could 18 months ago. Part of that improvement results from the surgery itself, and some of it comes from the 10 or so hours PT/rehabilitative work that I still do every week. The improvement itself is not the issue. It's what improvement means both in the context of my disabled body and in the context of disability in general.
First, the physical facts. I have improved. But that doesn't mean that I am cured or on the road to being cured. Improvements are present for me until they are not. Just four days after we last saw each other, I had a major episode that made it really difficult to sit, never mind walk my way out of disability into a 'normal' life. I still haven't recovered from that episode and it has been four months. In general, I live in a cycle of event, recovery, plateau, and event. Sometimes, the recovery is actually an "advance or an improvement." But often, I struggle to get back where I was before. So, I don't attach any great meaning or significance to recovery. I simply can't.
But please don't think that I have given up on my body and myself. This is a crucial point. I think you think that could choose to stay where I am after something goes wrong or I could continue to work fiendishly on my body so that I get better. I am in neither of those places; I work on my body because it give me great pleasure to do so. I am so excited to see what it can do, to push it to its limits. I am delighted when I am stronger and when I have more endurance and am more stable. PT and rehab exercises have given me that. I continue to work because I am shaping my body for dance and because I believe that the stability and strength make the dance injuries less frequent and make the episodes less severe. I have no proof of that, of course, but it keeps me going on a hard day. All this is to say that I work my ass off but that I see improvement as a tool that enables me to live harder and faster. I love improvement, but I am not invested in the next step as a sign of remediating the manifestations of disability. And even if I weren't doing the PT work, that wouldn't mean that I had "given up."
As much as I love improvement, I don't feel driven to work for total healing and cure because I have come to understand a different politics of the body, one in which there is neither cure nor giving up. The body just is. My understanding and experience of disability has been almost entirely within the tenets of the disability studies, disability rights, disability arts and culture movements (happens when you become disabled at a university, I suppose). My experience is perhaps unusual for disabled people, particularly those peeps who live where you live most of the time -- you might even justly call it privileged. But it is my experience. And that experience teaches me that it is OK to live as I am. To find history, culture, identity, sexuality, and pleasure in where I am. It moves me away from your medical fact based approaches to the body and takes me towards an understanding of the body as a work of art.
In my world, there is no "better." There is only doing what I can on a given day. There is only working with what I have: the art of my body.
Excellent! You said it best, "the body just is."
ReplyDeleteSadly, the medical model has become a kind of dogma that many can't break free from and that may be why your friend can't understand.
I would close by reiterating the importance of your friendship to you; also I might take out the end of the sentence about celebration--he'll get it but direct reference could cause pain to them or wanting to similarly withdraw. Maybe take out the "wrong way" part too since it's like telling people not to think of running water; that may set a more conversational rather than "uh oh" tone. Then move the third paragraph to the end of the first paragraph. I'd also take out the "your" in "your medical fact based approaches." Also, is it possible by "better" that he is referring to the hip surgery alone rather than overall? I'm wondering if he's trying to cheer himself up rather than you, or if he's an adherent to The Secret (Rhonda Byrne) line of thought. But it can be really un-validating to have someone state a lot of unrealistic optimism for our past bodies when we have a very strong disability identity.
ReplyDeleteThank you gifting us with this shared letter--from reading it, I had an epiphany that most people are missing the cyclical nature of my disability and others' disabilities, that they get confused by what seems like recovery. I also was stunned this week when someone said that they sensed all this grief coming from me because of the wheelchair use. Uh, no. No. In fact, WTH? :) For that person, I'm also going to need to write a letter explaining since otherwise this will get in the way.
Oh my dear, this is beautiful! Living day to day, recovery, normalcy and function are all relative and the body is how it is at any particular point in time. I don't think of getting past, being cured or being like others; these were the words and phrases that shaped my childhood and younger adult self. They were a prison that made it hard for me to accept myself on a fundamental level, and enjoy living. They were also part of others definition of me, that, try as I did, I could never live up to, so disappointment and loathing crept into my life, invading every corner until I let go and began to see myself not as a fixable aberration, but as a woman in a body she needed to know and accept as it is and was.
ReplyDeleteI have been disabled for 51 years. Everybody who really knows me understands my disability as permanent.
ReplyDeleteHowever, I periodically run across near-strangers (neighbors to whom I've never been introduced, sales clerks in fitting rooms, etc.) who express hope for my recovery or say they are praying for me, or even that I look better than last time they saw me. The latter is especially interesting to me as a working example of wishful thinking, as, obviously, I am no better--and never will be, could not be. If anything, I am deteriorating with time.
Years ago, I quit walking my neighborhood during daylight hours after half a dozen people in the course of a month congratulated me on my hard work at recovery. Which of course, is not what I was doing. I was only walking my neighborhood. Nothing more, nothing less.
I have come to understand that they have been raised in a society that (1) thinks Medicine can fix everything, and (2) thinks that we are each masters of our own destiny. Personal mortality is just not on their psychological horizon at all, and in order to keep it that way, safe and comfortable, they blame us for any signs of mortality which we exhibit.
Good luck with your friend. It takes courage to confront something like this, as there is always the risk of the pain to follow if s/he doesn't hear you.
"As much as I love improvement, I don't feel driven to work for total healing and cure because I have come to understand a different politics of the body, one in which there is neither cure nor giving up. The body just is. My understanding and experience of disability has been almost entirely within the tenets of the disability studies, disability rights, disability arts and culture movements (happens when you become disabled at a university, I suppose). My experience is perhaps unusual for disabled people, particularly those peeps who live where you live most of the time -- you might even justly call it privileged. But it is my experience. And that experience teaches me that it is OK to live as I am. To find history, culture, identity, sexuality, and pleasure in where I am. It moves me away from your medical fact based approaches to the body and takes me towards an understanding of the body as a work of art."
ReplyDeleteThank you for that articulation, and for this nuanced and thoughtful post.