I've noticed over the years that I now react very differently to something that happens in my life since I acquired my disability.
I'm talking about the flight reaction of people-I-used-to-know.
It happens when I run into old friends who don't know about my accident. As the years go by, I've seen every reaction from initial curiosity to a shrug of the shoulders, to running away.
Shortly after I acquired my disability, one used-to-be-best-friend visited me from out of state, told me that my disability was "pretty bad" , and cut off communications afterward. I was at a point where I'd worked very hard for the function and physical ability I had and really disagreed with her assessment. (An interesting aside here is how people reacted to the movie A Man and his Dog, where French star Jean-Paul Belmondo, after having a stroke, appeared in the film that showed a realistic portrayal of his disability. Poor ticket sales were, in part, explained by the fact that audiences wanted to remember him as he was.)
I used to feel quite upset when flight reactions happened. It felt sickening sometimes, as if I was no longer the person I was expected to be, as if I had somehow let these folks down.
Then I realized that I was internalizing their reaction. Their fears and assumptions about disability were overriding their ability to be present with me. They were running away from what they imagined, I suppose, was a ruined and doomed life.
They certainly weren't seeing me. And if they were more invested in remembering me as I was than who I am, I realized, that was about them, not me. This is who I am now.
My life is good. I work and have a full and productive life. I have friends. I'm busier than many able bodied people. And my ability to be happy is linked to my choices in life, just as it is for everyone else.
This is what the people-I-used-to-know would have found out if they hadn't run away.
14 comments:
It is indeed interesting to observe how people react to you after disability. Your post reminded me of a story Robert Murphy, author of the Body Silent, told me about Erving Goffman, author of Stigma and many other texts. Both men were schedule to be on the same dissertation committee. They had not seen one another in many years and Goffman did not know Murphy was paralyzed. Murphy was curious to as to how Goffman would react to his disability. Murphy arrived early and when Goffman entered the room he took a long glance at Murphy. No words were expressed and he slowly walked over to Murphy and kissed his forehead and smiled. This gesture had nothing to do with paternalism but rather a genuine understanding of the social significance of disability. Both men were brilliant and knew the sort of transformation Murphy had undergone.
What a great story- thanks so much for posting it.
After I acquired my disability, I was walking with a (good) friend and sat down on a low wall and was noting as I was bouncing on my sizable, but feeling less ass, that it felt like I was sitting on a balloon. My friend said it made her feel nauseous to hear that. :-0 It was my ass I was just getting used to, amongst other things. I felt like a freak.
Yeah I can relate to that kind of conversational exchange. I've listened to pretty graphic conversations about menopause, childbirth and other things- yet will get that reaction when I dare to inject a disability-related body issue. Sometimes the reaction is silence - and a swift change of topic. I notice on the whole that I talk mostly to other women with disabilities now about disability-related body issues, except for a few very close friends - unless I am in a feisty, noncompliant mood :)
I'm sorry you felt like a freak. I like your analogy to a balloon - it describes the "feeling less" very well.
very well said !
Yeah, I've had people run away too and don't get it. I think a lot of people are worried about awkwardness or the pain it causes them to see someone in it, without realizing we deal with those social effects continually. [tongue in cheek] Buck up, people! A little adversity builds character.
Yes, I know what you mean; right now I've been having a horrible time with near impaction (finally improving) and can't tell ableds even though it's been affecting me a lot. I'm sure most abled people wouldn't know what I meant from the one word, but most people who use wheelchairs for a while immediately recognize.
Greg, thanks very much.
Frida- yeah a little adversity can be handled! (And yeah I know what that word means -ugh. Hope you continue to feel better.
Wheelie and others,
I'm sorry for these hurtful events and even sorrier that as a society we can't seem to get beyond archaic attitudes and the ignorance, stupidity and bigotry underlying them.
Wheelie, your analysis is correct, from my experience. I've had CP since birth, and some of the experiences I've had as an adult, courtesy of ignorance or just plain meanness make me wonder what we as a species are coming to.
Challenging these remarks, etc, invariably leads to being labelled a radical or troublemaker or some such nonsense, and only proves the point that difference is feared.
As you said, life and work can be good. I wish it was that way for every member of the disability community.
Full Tilt,
I wish it was that way for every member of the disability community too. And as much as many good folks do what they can to improve things, we have a great deal of work to do.
But I just saw little kids in power chairs racing around the disability expo, independent and laughing. We are making progress. I pray every day that our children with disabilities will live in an easier, more welcoming and inclusive world.
When my daughter who has Down syndrome was little I had a friend out of town who had a daughter the same age. She called me one time and asked was my daughter taking her first steps, saying her first words, etc... Um... Nooooo..
There was an awkward silence and our conversation quickly ended. I was devasted.
About a week later that friend called again this time she asked "so, what's Jenn doing? How's she doing?" And when I shared frustration she empathised and when I shared celebration she rejoiced.
I am blessed with a good friend. She couldn't process on-the-fly, but process she did.
Others didn't make the jump, but like you I see it as their issue, not mine. They could have learned to love a bigger world, but chose (choose) not to. Their problem and their loss.
Terri - yes and I'm always glad when there's a rocky start and folks hang in there. It's not easy sometimes.
Their loss, Wheelie--but it sounds like you know that.
My disability is mental illness (PTSD and bipolar II) and I was at a retreat over the weekend where a clergy colleague told a long story mocking a "crazy" congregant, to uproarious laughs or complicit silence from everyone else at the table. When I asked her to say mentally ill instead another pastor at the table leapt to dismiss me and defend her friend by distinguishing between normal people who use medication and people with "more serious issues" (who apparently don't deserve to be spoken of with respect or dignity. This is a progressive group and it was an interesting contrast to the response I would have expected had one of the gay or black participants called them out for slurring their minority). The second speaker knows my diagnosis and I think meant to be reassuring -- "you're one of us, a gifted clergywoman, not one of them, a pathetic help-ee" -- but of course felt otherwise, as I am indeed one of "them" but can pass as neurotypical due to the grace of God and the social privilege to get appropriate medication, therapy, and support. It may also have been meant to reassure herself and everyone else there that they too are among the "us," the normal, -- and help them block out the fact that, unless they die prematurely, they are not just temporarily able-bodied, but temporarily able-minded.
P.S. I recently read a blog post by another member of the same community, in which a distinction was made between two people living with MS. The blogger considers the one who uses a wheelchair and cannot work for pay to be disabled, and the one who can continue her profession at present to be not-disabled. Not clue one that many disabled people do work and many others could with appropriate accomodation.
Sophia-
There is a hierarchy with disability, as some bloggers have written about. As you know, this just causes divisiveness and exclusion both within the disability community and society at large. It's quite sad.
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