On the bus today, I heard the following conversation.
Woman: I can't imagine being like Bob. I'm so grateful I'm not like that.
Man: I saw someone like Bob once. He was a judge.
Woman: :Wow, really?
Man: He did a good job.
Woman With all Bob's issues, I can't imagine what it took to go to college and then law school.
Man: Yeah, but if I were in court, I'd want a judge like Bob. I think he'd do a better job at deciding because of his issues.
Okay, so Bob is clearly me and these two people were obviously discussing blind people WITHIN MY HEARING.
I tried counting to ten. Still wanted to kill someone. I counted again. Still pissed. Then I decided to do the squares of numbers. By the time I got to 20 squared they were done talking. Thankfully.
I guess if I'd been brought up on murder charges, it would have helped to have the blind judge they were discussing. He would have understood the situation as justifiable homicide.
Showing posts with label societal norms. Show all posts
Showing posts with label societal norms. Show all posts
Thursday, February 23, 2012
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, March 23, 2011
Getting My Mad On
For the past two weeks, I have been trying to avoid the terrifying thought that the last dose of anesthesia zapped the writing part of my brain. The mechanics were possible with words forming sentences and sentences becoming paragraphs, but the unnamable quality making words into more than the sum of their parts was beyond me. Fortunately, as the past tense indicates, I got my mojo back. In the middle of a concert.
I should probably thank the musician who caused me to lose my temper waking the writing part of my brain from its slumber, but I'm not sure it would have the desired results. "Time after time, I have heard you put down your looks and while I assumed you were probably making it seem worse than the reality, I concluded you were probably of average looks. Then my friend informed me that you are adorable. I sort of lost my temper which finally woke up the writing part of my brain that I thought had gone into a permanent coma. Thank you so much for helping me get it back." Yeah, that would backfire.
On the surface, my anger seems simple to explain. This man puts himself down in order to get positive feedback from others. Immature, but he's twenty-seven and male, so it's understandable. The fact that he is making people feel sorry for him reinforcing our society's obsession with appearance equally justifies my anger, but also doesn't quite cover it.
No, I got my mad on because he seemingly hates his body more than I dislike mine with far less reason. Every day in a myriad of ways I am told that how I look is unacceptable. I invested and continue to invest a great deal of time and energy in counteracting that message. In the past year, circumstances have forced me to integrate loss of eyes and the advent of prosthetics into my body image and I can even see the light at the end of that tunnel. I work my backside off to have feelings about my body separate from what I'm told to think. The effort is completely worth it because most of the time I walk through life happy with myself.
Then there's this adorable twenty-seven-year-old who referred to himself as ugly. How ungrateful and lazy bringing new meaning to the term 'self-deprecating.' I truly would like to shake some positive body image into him. Jump up and down until he understands what he has and starts valuing it.
Please don't misunderstand. This isn't about one of us having it 'better' or 'worse' than the other. Simply put, I am proof that you don't have to accept societal beliefs about appearance. Why, then, is he doing it? For that matter, why does most of the human race do it?
Maybe I'm incredibly fortunate to have lived at the edge of socially acceptable appearance. It allowed me to clearly perceive the subjectivity of our standards of beauty and how they are imparted to us. Then again, there are tons of people who also inhabit that extreme edge and they pursue changing their appearance with single-minded determination. Perhaps the combination of blind and unusual looks offers the answer. Whatever the case, I am truly lucky to have found a way to not hate my body.
Back to the musician. What can I say to someone like him? Offering my own experience up as an example of "It can be different" would probably engender pity not elucidation. Telling him he's adorable would simply re-enforce his behavior of putting himself down.
Guess I'm stuck listening to his put-downs and offering up prayers to whatever higher power is out there that he one day gets it, puts the sentiments into a song, and changes the world by playing it everywhere.
I should probably thank the musician who caused me to lose my temper waking the writing part of my brain from its slumber, but I'm not sure it would have the desired results. "Time after time, I have heard you put down your looks and while I assumed you were probably making it seem worse than the reality, I concluded you were probably of average looks. Then my friend informed me that you are adorable. I sort of lost my temper which finally woke up the writing part of my brain that I thought had gone into a permanent coma. Thank you so much for helping me get it back." Yeah, that would backfire.
On the surface, my anger seems simple to explain. This man puts himself down in order to get positive feedback from others. Immature, but he's twenty-seven and male, so it's understandable. The fact that he is making people feel sorry for him reinforcing our society's obsession with appearance equally justifies my anger, but also doesn't quite cover it.
No, I got my mad on because he seemingly hates his body more than I dislike mine with far less reason. Every day in a myriad of ways I am told that how I look is unacceptable. I invested and continue to invest a great deal of time and energy in counteracting that message. In the past year, circumstances have forced me to integrate loss of eyes and the advent of prosthetics into my body image and I can even see the light at the end of that tunnel. I work my backside off to have feelings about my body separate from what I'm told to think. The effort is completely worth it because most of the time I walk through life happy with myself.
Then there's this adorable twenty-seven-year-old who referred to himself as ugly. How ungrateful and lazy bringing new meaning to the term 'self-deprecating.' I truly would like to shake some positive body image into him. Jump up and down until he understands what he has and starts valuing it.
Please don't misunderstand. This isn't about one of us having it 'better' or 'worse' than the other. Simply put, I am proof that you don't have to accept societal beliefs about appearance. Why, then, is he doing it? For that matter, why does most of the human race do it?
Maybe I'm incredibly fortunate to have lived at the edge of socially acceptable appearance. It allowed me to clearly perceive the subjectivity of our standards of beauty and how they are imparted to us. Then again, there are tons of people who also inhabit that extreme edge and they pursue changing their appearance with single-minded determination. Perhaps the combination of blind and unusual looks offers the answer. Whatever the case, I am truly lucky to have found a way to not hate my body.
Back to the musician. What can I say to someone like him? Offering my own experience up as an example of "It can be different" would probably engender pity not elucidation. Telling him he's adorable would simply re-enforce his behavior of putting himself down.
Guess I'm stuck listening to his put-downs and offering up prayers to whatever higher power is out there that he one day gets it, puts the sentiments into a song, and changes the world by playing it everywhere.
Wednesday, August 11, 2010
Our Responsibility?
From my last post http://peoplearentbroken.blogspot.com/2010/08/disability-is-responsibility-of.html, you probably figured out I don't think it's fair to make disability the sole responsibility of the disabled. The why of it might elude you. Disabled people are the ones with the "problems," so shouldn't we be the ones to solve them? They are *are* issues and if we want them addressed making it another person's responsibility seems contrary to, well, everything upon which our culture is built.
I do agree the physical difference is contained within me, but it only becomes disability when I try to function within the society humans have constructed. Eyes were chosen as the method for decoding writing instead of something tactile, which makes me disabled. Our language is auditory, making Deaf people disabled when they try to operate in the broader world. Why is our written language visual? Writing developed when light was harder to acquire than flipping a switch would have made a tactile system useful. Why is our language exclusively auditory? A language of gesture was often used in primitive cultures for hunting.
There is no concrete, simple answer as to why society has developed in the manner it has, but it is nonetheless the society we inhabit. Unfortunately, many of its elements turn difference into disability. How does that make disability the responsibility of the disabled? How can society with one hand make me disabled and with the other hold me responsible for fixing it?
I have been pondering whether other marginalized groups are in the same position. Is racial inequity the responsibility of ethnic minorities? Clearly racism is an artifact of our social fabric that has labeled a given physical difference a marker of inferiority. WE do not expect an ethnic minority to educate an employer or check to make sure they are allowed in a public place. We do hold some expectations that they will fight the system, endure greater expense (groceries in the "ghetto"), and answer questions, but as a society we acknowledge the unfairness of such circumstances. Our insistence is that social expectations and societal structures shift to become fair.
Except, of course, when it comes to disability. I hold two elements of our social fabric responsible for this. The pioneer pull yourself up by your bootstraps mentality has so shaped our thinking that we almost automatically look for how an individual is to blame for their plight. Didn't get an A on a math test? It's not because the previous evening your father was beating your mother and you couldn't sleep. No, you didn't study hard enough. Can't walk up that flight of stairs? Well obviously it is your fault because you are the paraplegic so you figure it out. Viewed in this simplistic way, it seems patently absurd to make the person who can't walk up the stairs in charge of the problem. Unable to morph stairs into a ramp, they can only turn away from their goal.
I also believe our social norms about appearance and behavior play a role. WE think people should look a certain way. We think they should act in a particular manner. And when they don't? Wow. Everything about life becomes a little bit harder and that is considered perfectly acceptable. So when a disabled person comes along who may be different in manner or appearance and need unusual things, it falls into a similar category. It's their difference and their problem to solve or not solve.
Legislation attempts to address societal inequities related to disability and has somewhat reallocated responsibility. Unfortunately, although the ADA is twenty years old, it has not changed the minds and hearts of individuals let alone our society's nature. Even the language of the law mandating "reasonable accommodations" unless there is an "undue burden" makes disability equity something to work towards not a concrete benchmark that must be met.
Perhaps the societal shift of responsibility will take more time for the Civil Rights Act of 1965 is twenty-five years older than the ADA. Possibly in 2035 I will not live in a society that finds it acceptable to make me responsible for a physical difference I did not choose. As a sprightly sixty-three-year-old, I am certain it will radically alter my experience.
I do agree the physical difference is contained within me, but it only becomes disability when I try to function within the society humans have constructed. Eyes were chosen as the method for decoding writing instead of something tactile, which makes me disabled. Our language is auditory, making Deaf people disabled when they try to operate in the broader world. Why is our written language visual? Writing developed when light was harder to acquire than flipping a switch would have made a tactile system useful. Why is our language exclusively auditory? A language of gesture was often used in primitive cultures for hunting.
There is no concrete, simple answer as to why society has developed in the manner it has, but it is nonetheless the society we inhabit. Unfortunately, many of its elements turn difference into disability. How does that make disability the responsibility of the disabled? How can society with one hand make me disabled and with the other hold me responsible for fixing it?
I have been pondering whether other marginalized groups are in the same position. Is racial inequity the responsibility of ethnic minorities? Clearly racism is an artifact of our social fabric that has labeled a given physical difference a marker of inferiority. WE do not expect an ethnic minority to educate an employer or check to make sure they are allowed in a public place. We do hold some expectations that they will fight the system, endure greater expense (groceries in the "ghetto"), and answer questions, but as a society we acknowledge the unfairness of such circumstances. Our insistence is that social expectations and societal structures shift to become fair.
Except, of course, when it comes to disability. I hold two elements of our social fabric responsible for this. The pioneer pull yourself up by your bootstraps mentality has so shaped our thinking that we almost automatically look for how an individual is to blame for their plight. Didn't get an A on a math test? It's not because the previous evening your father was beating your mother and you couldn't sleep. No, you didn't study hard enough. Can't walk up that flight of stairs? Well obviously it is your fault because you are the paraplegic so you figure it out. Viewed in this simplistic way, it seems patently absurd to make the person who can't walk up the stairs in charge of the problem. Unable to morph stairs into a ramp, they can only turn away from their goal.
I also believe our social norms about appearance and behavior play a role. WE think people should look a certain way. We think they should act in a particular manner. And when they don't? Wow. Everything about life becomes a little bit harder and that is considered perfectly acceptable. So when a disabled person comes along who may be different in manner or appearance and need unusual things, it falls into a similar category. It's their difference and their problem to solve or not solve.
Legislation attempts to address societal inequities related to disability and has somewhat reallocated responsibility. Unfortunately, although the ADA is twenty years old, it has not changed the minds and hearts of individuals let alone our society's nature. Even the language of the law mandating "reasonable accommodations" unless there is an "undue burden" makes disability equity something to work towards not a concrete benchmark that must be met.
Perhaps the societal shift of responsibility will take more time for the Civil Rights Act of 1965 is twenty-five years older than the ADA. Possibly in 2035 I will not live in a society that finds it acceptable to make me responsible for a physical difference I did not choose. As a sprightly sixty-three-year-old, I am certain it will radically alter my experience.
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