Showing posts with label medical model of disability. Show all posts
Showing posts with label medical model of disability. Show all posts
Saturday, May 25, 2013
Responsibility Teflon
I know we've all met that person – the one who can somehow avoid responsibility for *anything.* It is as if they've been sheathed in teflon and nothing will adhere to it. Ever.
The most drastic cases involve those who frame their lives in terms of things "done to them" that have resulted in bad outcomes. (Ever notice victim mentality is only present when it comes to bad outcomes?) More insidious cases exist in which individuals effortlessly float through life with nothing ever being their fault. They're just "following their hearts" or "honoring their feelings" or "not engaging in negative self-doubt" or "practicing self-compassion." In and of themselves, each isn't a bad thing when done in moderation. Some, however, have raised their use to an art form. In the process, they acquire Responsibility Teflon.
I believe that perceiving me as amazing allows non-disabled people to don this same Responsibility Teflon. I've previously mentioned three ways non-disabled people conclude I am amazing – expecting less of me because of my disability, misunderstanding what it would be like if they walked in my shoes and lauding me for overcoming obstacles. Each is predicated on the idea that the "problem" is contained within me. She doesn't have functional eyes, so I should expect less. If I didn't have functional eyes like her, then I couldn't do that. She doesn't have functional eyes which would make that activity harder. It's all about my biological difference.
The interesting part is that by making it all about my difference, non-disabled people have framed the situation in terms of my body, my abilities, my interactions, my defects. When it is all about me, Responsibility Teflon morphs into existence.
A crucial factor, how our society functions, is being left out of the equation. My difference only becomes a problem when my world doesn't take it into account. Imagine if I lived in a world where my difference was accommodated by all information being conveyed visually, auditorially and tactilely. Would I be so amazing in that environment? Not really. I'd be simply another person going about her business.
I'm certain someone is now thinking, "Yeah, and you would also not be amazing if you could just see." Following that line of argument, if all people were the same color, racism would disappear. If all people were of the same gender, sexism would vanish -- along with our species' ability to exist. Disability is a fact of human variation. Only when our society places meaning on human variation do we have things like sexism, racism and disability as individual defect.
When a non-disabled person observes me crossing a street, they could think I'm amazing for being able to do that. They could also think that they participate in a world that doesn't take my need for auditory street signals into account. In the former, while they feel all warm and fuzzy for praising me, they are putting on Responsibility Teflon. In the latter, they are skating perilously close to assuming some accountability for the world they inhabit. You know, the same one I have to function in?
Tuesday, November 22, 2011
Adding It Up
Over the past couple of years, as I work to sort out friendships and find some sense of community, I've learned a few things.
1. Friendships need to be equal, balanced, healthy, and reciprocal.
2. Having friendships that aren't these things is ultimately bad for me.
3. I cannot nor should I try to "compensate" my friends for the "hardships" of being friends with me.
4. As a friend, I actually am enough. In fact, in some ways, I sort of rock.
and then there's what I've figured out about social stuff and disability.
1. Most people cannot se past the fact of my disability to see the potential of me as friend.
2. Nothing I do will make me seem more or less tempting as friendship material to someone who cannot see past the fact of my disability.
3. A large chunk of those who see past the fact of my disability to me as a person are interested in friendship because I represent (to them) something as broken as they unconsciously see themselves.
4. a shockingly small number of people see me as a potential friend and also see me as a competent, vital adult.
5. All of this is because of how the world thinks about disability and how that has effected the probably unconscious thoughts of individuals.
If you add up the first and second set of things I've learned, you come up with this: I am going to have a very hard time finding friends, it is something I cannot change through how I behave, and it will lead to social isolation.
I learned an interesting fact last week. It seems that people outside a marginalized group are not very good judges of what it is like to be a part of that marginalized group. Outsiders are not able to assess degree of prejudice, significance of negative stereotypes, or amount of "suffering" marginalized group members "endure" because of their group status. In other words, people who don't have a disability equivalent to mine are not going to get it.
There's this great phrase: Disability is the responsibility of the disabled. For example, I get a print piece of mail. It is not amongst the acceptable options to call up the sender and demand they do something about it. Instead, I'm suppose to find someone to read it to me. Similarly, if I am amongst a group of people who are interacting based on sighted people rules, I am expected to find a way to play by those rules or accept that I will not be included. Should people in the group actually alter behavioral patterns so I can participate, it is done as a kindness not as a "no brainer" because of course you play by rules everyone can follow.
So, people are unlikely to see my social isolation as an artifact of disability and if they do, chances are they see it as a problem I should fix or tolerate because I'm the one with the disability.
Here's the funny thing: if you look at the social model of disability, where disability is a factor of how the world works, then the very world that is the architect of my situation refuses to do anything to deal with it. Should you look at disability from the medical model, where functional limitations based on physical difference cause disability, I am still not to blame for my circumstances, yet I am left to cope with their impact.
Now here's where I don't know if I'm being fair or reasonable. I'm angry and frustrated, and disappointed in the people who express affection toward me. The vast majority have consciously or unconsciously left me to deal with all of this on my own, yet supposedly care about me and my happiness. They will guide me around obstacles, read menus, and put up with guide dog fur in their cars, but they will not do anything to alleviate what I consider possibly the most fundamentally distressing consequence of disability in my life – soul eating social isolation.
Moreover, any efforts on the part of others to mitigate the situation have to come from a place of love and understanding not obligation and pity. I cannot beg, offer brownie bribes, or barter bread for behavioral changes. People either get it or they don't. they either do something or they don't.
In the past year, I have pruned friendships that weren't working well. I have tried to back off from the friends I have retained because constantly asking for time and attention finally struck me as unhealthy. Should I go through another round of trimming based on those who understand and help mitigate my isolation and those who do not, I'll be down to about four friends. I'm pretty sure that's not enough for an extravert, even a shy extravert.
1. Friendships need to be equal, balanced, healthy, and reciprocal.
2. Having friendships that aren't these things is ultimately bad for me.
3. I cannot nor should I try to "compensate" my friends for the "hardships" of being friends with me.
4. As a friend, I actually am enough. In fact, in some ways, I sort of rock.
and then there's what I've figured out about social stuff and disability.
1. Most people cannot se past the fact of my disability to see the potential of me as friend.
2. Nothing I do will make me seem more or less tempting as friendship material to someone who cannot see past the fact of my disability.
3. A large chunk of those who see past the fact of my disability to me as a person are interested in friendship because I represent (to them) something as broken as they unconsciously see themselves.
4. a shockingly small number of people see me as a potential friend and also see me as a competent, vital adult.
5. All of this is because of how the world thinks about disability and how that has effected the probably unconscious thoughts of individuals.
If you add up the first and second set of things I've learned, you come up with this: I am going to have a very hard time finding friends, it is something I cannot change through how I behave, and it will lead to social isolation.
I learned an interesting fact last week. It seems that people outside a marginalized group are not very good judges of what it is like to be a part of that marginalized group. Outsiders are not able to assess degree of prejudice, significance of negative stereotypes, or amount of "suffering" marginalized group members "endure" because of their group status. In other words, people who don't have a disability equivalent to mine are not going to get it.
There's this great phrase: Disability is the responsibility of the disabled. For example, I get a print piece of mail. It is not amongst the acceptable options to call up the sender and demand they do something about it. Instead, I'm suppose to find someone to read it to me. Similarly, if I am amongst a group of people who are interacting based on sighted people rules, I am expected to find a way to play by those rules or accept that I will not be included. Should people in the group actually alter behavioral patterns so I can participate, it is done as a kindness not as a "no brainer" because of course you play by rules everyone can follow.
So, people are unlikely to see my social isolation as an artifact of disability and if they do, chances are they see it as a problem I should fix or tolerate because I'm the one with the disability.
Here's the funny thing: if you look at the social model of disability, where disability is a factor of how the world works, then the very world that is the architect of my situation refuses to do anything to deal with it. Should you look at disability from the medical model, where functional limitations based on physical difference cause disability, I am still not to blame for my circumstances, yet I am left to cope with their impact.
Now here's where I don't know if I'm being fair or reasonable. I'm angry and frustrated, and disappointed in the people who express affection toward me. The vast majority have consciously or unconsciously left me to deal with all of this on my own, yet supposedly care about me and my happiness. They will guide me around obstacles, read menus, and put up with guide dog fur in their cars, but they will not do anything to alleviate what I consider possibly the most fundamentally distressing consequence of disability in my life – soul eating social isolation.
Moreover, any efforts on the part of others to mitigate the situation have to come from a place of love and understanding not obligation and pity. I cannot beg, offer brownie bribes, or barter bread for behavioral changes. People either get it or they don't. they either do something or they don't.
In the past year, I have pruned friendships that weren't working well. I have tried to back off from the friends I have retained because constantly asking for time and attention finally struck me as unhealthy. Should I go through another round of trimming based on those who understand and help mitigate my isolation and those who do not, I'll be down to about four friends. I'm pretty sure that's not enough for an extravert, even a shy extravert.
Wednesday, January 26, 2011
From Here to There
No matter how precise you can be about a destination, if you don't know where you are, it's impossible to plot a course. This is true for navigating highways as well as the complexity of human emotion. At the moment, I am a bit fuzzy on my "here," so "there" doesn't feel within reach.
It's all about the continuing medicalization of my life, because the ending of 2010 did not terminate the craziness. In short, the presence of my eye prosthetics might be an ongoing cause of increased mucus production which without a nasal airway, causes serious post nasal drip. That might be why the tracheal stenosis of last year is coming back. The leg pain I've been experiencing for over a year finally sent me to a doctor and the top two potential explanations both have limiting my walking for a period of time as part of the cure. In light of my new guide dog Emmylou, limited mobility is a wee bit problematic. Optimistically, it would be a refreshing change if my leg pain had an explanation they can not only find but treat.
It seems like I'm in a constant state of falling apart. I feel like less of a person, less a contributing member of society, and somehow less of a positive force. In fact, I feel like a black hole sucking up tons of resources with no return on the investment. Even the language I used – falling apart – shows that I'm perceiving current events as not simply a situation to manage, but a huge life negative. Where did I pick up the idea that having multiple medical issues decreased my value? Who taught me that medical resources should only go to those who would give something back? And when did it become alright for me to entertain the word "broken" in my head?
To be honest, all this medical "crap" is a pain in the butt. Scheduling issues alone sometimes make me want to tear out all my hair and you know how much I love my curls. Should I need to stop walking, it will add to the complexity of my universe. Then there's the increased contact with the medical profession which tends to see disability in ways contrary to my preferences. Therefore, yes, the medicalization of my life is a pragmatic negative.
Blindness can be a pragmatic negative as can Chronic Fatigue Syndrome, yet I do not believe these decrease my worth. This leads me back to my question" why do I think ongoing medical issues lessen my value?
Possibly I should have waited to write this entry until I could answer my question. Instead, I want to allow people to see that sometimes I struggle with fundamental issues and that I'm not this amazing source of strength. I falter. I don't have all the answers.
The silver lining in this particular cloud is that I'm completely aware of the ridiculousness of how I'm feeling. However, until I can understand my "here," I cannot get to a less annoying place.
It's all about the continuing medicalization of my life, because the ending of 2010 did not terminate the craziness. In short, the presence of my eye prosthetics might be an ongoing cause of increased mucus production which without a nasal airway, causes serious post nasal drip. That might be why the tracheal stenosis of last year is coming back. The leg pain I've been experiencing for over a year finally sent me to a doctor and the top two potential explanations both have limiting my walking for a period of time as part of the cure. In light of my new guide dog Emmylou, limited mobility is a wee bit problematic. Optimistically, it would be a refreshing change if my leg pain had an explanation they can not only find but treat.
It seems like I'm in a constant state of falling apart. I feel like less of a person, less a contributing member of society, and somehow less of a positive force. In fact, I feel like a black hole sucking up tons of resources with no return on the investment. Even the language I used – falling apart – shows that I'm perceiving current events as not simply a situation to manage, but a huge life negative. Where did I pick up the idea that having multiple medical issues decreased my value? Who taught me that medical resources should only go to those who would give something back? And when did it become alright for me to entertain the word "broken" in my head?
To be honest, all this medical "crap" is a pain in the butt. Scheduling issues alone sometimes make me want to tear out all my hair and you know how much I love my curls. Should I need to stop walking, it will add to the complexity of my universe. Then there's the increased contact with the medical profession which tends to see disability in ways contrary to my preferences. Therefore, yes, the medicalization of my life is a pragmatic negative.
Blindness can be a pragmatic negative as can Chronic Fatigue Syndrome, yet I do not believe these decrease my worth. This leads me back to my question" why do I think ongoing medical issues lessen my value?
Possibly I should have waited to write this entry until I could answer my question. Instead, I want to allow people to see that sometimes I struggle with fundamental issues and that I'm not this amazing source of strength. I falter. I don't have all the answers.
The silver lining in this particular cloud is that I'm completely aware of the ridiculousness of how I'm feeling. However, until I can understand my "here," I cannot get to a less annoying place.
Wednesday, July 14, 2010
The Power of She
Ever been talked about as if you weren't standing right there? Disabled people are more than familiar with this experience. Our companions are directed where to take us, given things intended for us, and asked what we want as if they have a direct line to our brains. It's annoying. In the extreme.
The word "she" has the power to totally alter reality. "She needs to go over there." "What does she want?" I become a body that is unable to interact with the world. I become unnecessary in the conversation. Three letters – one syllable – and I vanish.
Lately, this has happened so much that I have wanted to wear a sign that says, "She Can TALK!" Instead, I keep saying, "Where do I need to go?" or "I want..." You would think this might clue the person "she"ing me into nonexistence that I possess the ability to communicate, but no such luck.
When the "she"ing happens, some of my friends play dumb, others pointedly look at me, and every so often one will say, "I don't know what she wants. Maybe you should ask her?" Often this has more corrective power reinforcing the fact that my presence is irrelevant.
I am most likely to be "she"ed in medical settings where disability is constructed around the physical limitations of the body and corrective intervention. This focus on what cannot be done probably causes medical professionals to have a keen awareness of my deficits as opposed to either my strengths or ways to work around my limitations.
Right now, as I deal with the medical establishment seemingly constantly, I lack the patience to understand the factors that contribute to this "she"ing behavior. I care not a wit as to what socially-perpetuated beliefs about disability have shaped individual behavior. I have no compassion for ignorance. I just want to be treated like a person not disappeared by simple word choice. Because, well, it isn't simple word choice. It's an indication of a pervasive, flawed perception of me.
ADMINSTRATIVE NOTE:
I am having yet more surgery. It seems my right eye socket is jealous of the left and has decided to evict it's occupying eye. The blog will be dark until the first week of August. All positive thoughts are welcome and appreciated.
The word "she" has the power to totally alter reality. "She needs to go over there." "What does she want?" I become a body that is unable to interact with the world. I become unnecessary in the conversation. Three letters – one syllable – and I vanish.
Lately, this has happened so much that I have wanted to wear a sign that says, "She Can TALK!" Instead, I keep saying, "Where do I need to go?" or "I want..." You would think this might clue the person "she"ing me into nonexistence that I possess the ability to communicate, but no such luck.
When the "she"ing happens, some of my friends play dumb, others pointedly look at me, and every so often one will say, "I don't know what she wants. Maybe you should ask her?" Often this has more corrective power reinforcing the fact that my presence is irrelevant.
I am most likely to be "she"ed in medical settings where disability is constructed around the physical limitations of the body and corrective intervention. This focus on what cannot be done probably causes medical professionals to have a keen awareness of my deficits as opposed to either my strengths or ways to work around my limitations.
Right now, as I deal with the medical establishment seemingly constantly, I lack the patience to understand the factors that contribute to this "she"ing behavior. I care not a wit as to what socially-perpetuated beliefs about disability have shaped individual behavior. I have no compassion for ignorance. I just want to be treated like a person not disappeared by simple word choice. Because, well, it isn't simple word choice. It's an indication of a pervasive, flawed perception of me.
ADMINSTRATIVE NOTE:
I am having yet more surgery. It seems my right eye socket is jealous of the left and has decided to evict it's occupying eye. The blog will be dark until the first week of August. All positive thoughts are welcome and appreciated.
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