The twists and turns of the human psyche are sometimes truly weird. Today I was about to put lotion on my right calf when I noticed I had a rash. Later, as I mentally inventoried my closet to select appropriate clothing for a panel presentation, I dismissed a skirt without a second thought because of this rash.
I have scars all over the place including my legs and I never think twice about shorts or skirts. One small, temporary rash and I'm reaching for concealing pants. Objectively, it's... screwy.
I think it's fascinating what we integrate into our self concept and thus do not question versus the things that throw us for a loop. Often the little things are the mountains while the truly huge
things have shrunk to molehills.
Known as schadenfreude, humans can take great joy in the fact that they are not enduring the tragedy of another. How come we cannot find the same solace when it comes to our own lives? Sure, I have a rash on my leg, but in comparison to the other things I've managed to integrate into a positive body image, a few red bumps are nothing.
Yet even as I write this and see the logic behind my words, I cannot help but think, Yuck. Nobody wants to see such an ugly thing." I've definitely proven I am a mere human with the same perversities as the rest of our species.
Wednesday, November 30, 2011
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, November 16, 2011
Cherry Picking
Okay, other disabled people, I have a question for you. Have you ever noticed that non-disabled people in your life seem to pick and choose what aspects of your disability they will and will not deal with? This is the friend who will come over and visit, but not go out because finding a wheelchair accessible restaurant is just too hard. This is the person who will understand what it is like to encounter an inaccessible building, but will not understand how socializing can be inaccessible. This is the individual who knows all about your deafness and moves heaven and earth to accommodate it, but thinks you should maybe just try harder to be less depressed.
Society creates disability. Society makes dealing with the disability the responsibility of the disabled person. Our loved ones further add to the situation by cheery picking the consequences of our disabilities they do and do not wish to cope with. In this age of unconditional love, disability is somehow outside the bounds of what those who love us are expected to handle. It's somehow too much to ask or expect.
I guess I've missed all the chances in my life I've been given to "decide" if I wish to deal with this or that aspect of my disabilities. Maybe the offer was tendered in print?
Should such a proposition have been made, for my entire adult life, I would have replied that disability is a package deal and to separate it is akin to selling a house one room at a time.
Lately the conditionality with which those around me "accept" my disabilities has begun to irritate me in a way I cannot dismiss. Maybe if the conditionality was explained in terms of their shortcomings. "Jen, I want to drag you to this movie, but I don't think I can describe it. What can I do?" Instead, people just conveniently assume, despite me saying the contrary, that I can't go to movies. Or maybe if it was broached forthrightly. "Jen, what do we do about my other friends who don't know how to interact with a blind person?" Unfortunately, in its place, I'm left to fend for myself.
More and more, I've been feeling like one of those boxes you get at a yard sale or auction. You bought it for the cool bowl on top. When you get it home, you sort through and set aside what you want and what you will discard.
Well, I've decided I'm no longer a yard sale box. I haven't yet figured out how you go about manifesting such a decision in the real world.
Society creates disability. Society makes dealing with the disability the responsibility of the disabled person. Our loved ones further add to the situation by cheery picking the consequences of our disabilities they do and do not wish to cope with. In this age of unconditional love, disability is somehow outside the bounds of what those who love us are expected to handle. It's somehow too much to ask or expect.
I guess I've missed all the chances in my life I've been given to "decide" if I wish to deal with this or that aspect of my disabilities. Maybe the offer was tendered in print?
Should such a proposition have been made, for my entire adult life, I would have replied that disability is a package deal and to separate it is akin to selling a house one room at a time.
Lately the conditionality with which those around me "accept" my disabilities has begun to irritate me in a way I cannot dismiss. Maybe if the conditionality was explained in terms of their shortcomings. "Jen, I want to drag you to this movie, but I don't think I can describe it. What can I do?" Instead, people just conveniently assume, despite me saying the contrary, that I can't go to movies. Or maybe if it was broached forthrightly. "Jen, what do we do about my other friends who don't know how to interact with a blind person?" Unfortunately, in its place, I'm left to fend for myself.
More and more, I've been feeling like one of those boxes you get at a yard sale or auction. You bought it for the cool bowl on top. When you get it home, you sort through and set aside what you want and what you will discard.
Well, I've decided I'm no longer a yard sale box. I haven't yet figured out how you go about manifesting such a decision in the real world.
Wednesday, November 9, 2011
Cane or Canine
Changing from cane to guide dog (or vice versa) often elicits questions that boil down to why one method of navigation is considered superior to the other. Ultimately a matter of preference, there are some aspects worth explaining and since I have just gone from long white stick to something that likes to eat sticks, I thought I'd put words to my choice.
A blind person moving through the world must attend to:
1. walking in a straight line
2. stationary obstacles
3. moving obstacles
4. the route being followed
5. geographic location within that route
6. any and all changes that might give warning of unexpected hazards
For me, simultaneously keeping track of all these elements of travel is mentally and thus physically taxing. Miss catching one of the six balls and catastrophe results. For example, should I be focused on walking in a straight line and not hitting anything, I might zone out and miss a landmark essential for my route. Should I have all those navigational course elements in my head, chances are I'll forget about moving obstacles. Anyone who knows me is aware of the fact that getting my attention while I'm walking around is next to impossible. I literally zone out to the point that I don't hear my name being said. Forget trying to have a conversation or toss off a casual greeting while walking past someone. All my mental powers are required to safely navigate my course.
On an unfamiliar route, a dog can attend to walking in a straight line, avoiding stationary and moving obstacles, and unpredictable hazards. The handler's job is primarily to focus on their location in the route being traveled. Some attention is necessary to encourage the dog, correct mistakes, and give commands, but it is mostly routine.
On the other hand, when you get home, your cane goes in the corner and stays put until you are ready to use it again. A dog requires food, water, potty breaks, petting, love, praise, entertainment, and grooming. On the other hand, your dog will wag their tail at you and lick your face whereas a cane is a singularly unresponsive cuddle buddy.
It all boils down to the cost of cane travel versus the cost of maintaining a dog. Each person has a different bottom line for both. In fact, it is much like manual versus automatic car transmissions. I've seen people have heated arguments about which is superior and the same can be said for those who prefer canes versus those who want a four-footed guide.
For me, a dog grants me independence. Oddly enough, I really didn't appreciate that fact with my first dog. (I had a very different life then including a significant other which probably caused me to be too dependent on people.) It was only with my second dog, Emmy, that I began to see how my life could change. Suddenly, I could go places that had complicated routes and reach my destination not ready to fall over from fatigue. While I knew this truth in a theoretical way with my first dog, it's practical application was not obvious until Emmy.
The challenge now is to fully realize the independence this dog offers me. With talking GPS, I can literally go to an unfamiliar area and find an unknown destination. Unfortunately, I'm a bit of a wimp and have a tendency to fear the "what if"s I can imagine. "What if I get tired and can't think clearly so I get really lost? What if my phone battery dies? What if the dog gets hurt? What if the dog does something stupid? It really all boils down to what if I fail? Somehow, in my mind, blind people aren't allowed to fail. Or, well, at least not this one. This is a clear case of disability – blindness and chronic fatigue – not being my problem, but rather my own uniquely shaped mind.
A blind person moving through the world must attend to:
1. walking in a straight line
2. stationary obstacles
3. moving obstacles
4. the route being followed
5. geographic location within that route
6. any and all changes that might give warning of unexpected hazards
For me, simultaneously keeping track of all these elements of travel is mentally and thus physically taxing. Miss catching one of the six balls and catastrophe results. For example, should I be focused on walking in a straight line and not hitting anything, I might zone out and miss a landmark essential for my route. Should I have all those navigational course elements in my head, chances are I'll forget about moving obstacles. Anyone who knows me is aware of the fact that getting my attention while I'm walking around is next to impossible. I literally zone out to the point that I don't hear my name being said. Forget trying to have a conversation or toss off a casual greeting while walking past someone. All my mental powers are required to safely navigate my course.
On an unfamiliar route, a dog can attend to walking in a straight line, avoiding stationary and moving obstacles, and unpredictable hazards. The handler's job is primarily to focus on their location in the route being traveled. Some attention is necessary to encourage the dog, correct mistakes, and give commands, but it is mostly routine.
On the other hand, when you get home, your cane goes in the corner and stays put until you are ready to use it again. A dog requires food, water, potty breaks, petting, love, praise, entertainment, and grooming. On the other hand, your dog will wag their tail at you and lick your face whereas a cane is a singularly unresponsive cuddle buddy.
It all boils down to the cost of cane travel versus the cost of maintaining a dog. Each person has a different bottom line for both. In fact, it is much like manual versus automatic car transmissions. I've seen people have heated arguments about which is superior and the same can be said for those who prefer canes versus those who want a four-footed guide.
For me, a dog grants me independence. Oddly enough, I really didn't appreciate that fact with my first dog. (I had a very different life then including a significant other which probably caused me to be too dependent on people.) It was only with my second dog, Emmy, that I began to see how my life could change. Suddenly, I could go places that had complicated routes and reach my destination not ready to fall over from fatigue. While I knew this truth in a theoretical way with my first dog, it's practical application was not obvious until Emmy.
The challenge now is to fully realize the independence this dog offers me. With talking GPS, I can literally go to an unfamiliar area and find an unknown destination. Unfortunately, I'm a bit of a wimp and have a tendency to fear the "what if"s I can imagine. "What if I get tired and can't think clearly so I get really lost? What if my phone battery dies? What if the dog gets hurt? What if the dog does something stupid? It really all boils down to what if I fail? Somehow, in my mind, blind people aren't allowed to fail. Or, well, at least not this one. This is a clear case of disability – blindness and chronic fatigue – not being my problem, but rather my own uniquely shaped mind.
Wednesday, November 2, 2011
Follow Up
I wanted to finish the story of my class Power, Privilege and Visions of Justice.
After the first meeting, a cooling off period was in order, so I waited until Friday to take any steps. Through the point person at my LGBT center, I got an electronic copy of the syllabus and Later the instructor emailed me electronic copies of the readings.
Still quite upset, I tried a couple more days of calming down, but it didn't work. Finally, I emailed the instructor thanking him for the readings and expressing my frustration with how the class was conducted. I bluntly asked how I could learn about privilege from someone who created an exclusionary classroom environment. We emailed back and forth, but he continued to feel the only issue was the readings and their accessibility whilst I thought there were broader issues at play. He wanted to talk about how he was used to Disability Services handling everything. I wanted to discuss how his actions reflected able bodied privilege. Talking at cross-purposes never works and this case was no exception.
My other email exchange had a far more productive outcome. I again contacted the point person at my LGBT center and her almost immediate response was a request to talk about it. In that phone conversation, I found someone to add to my list of people who have an open mind and are willing to learn. It looks like she will be an ally in any other future efforts I undertake to educate my LGBT center on issues of accessibility.
Armed with the syllabus, I then began to use google and other methods to search for the readings in alternative formats discovering that less than one third were available. Given a couple of weeks, I might have managed to work things out, but within the time constraints of a 6 week course, I felt it was not a reasonable endeavor nor was it a reasonable accommodation for my LGBT center to make.
I attended one more class, to get a sense of how the readings would be used and decided they were too central to the discussion for me to simply skip them. I explained this to both the instructor and the point person.
I have learned a couple of lessons from this experience. First, simply telling someone a blind person is going to be in their class is not enough. They need to be educated as to what that means. Explicitly. My mistake was to assume it was clear. As one friend has often told me, "Educate. Clarify. Remind."
Second, don't assume who will and will not understand disability issues. My surmises in this situation were totally off.
There have also been a lot of reminders of lessons I should have learned long ago. When you identify a problem related to access, the next thing out of your mouth should always be the solution. The formula is identify the problem, try to relate it to something familiar to the target individual, and give a preferably simple solution.
It has also become clear that I need to cultivate calm. Educate from a place of calm. Meditation here I come.
After the first meeting, a cooling off period was in order, so I waited until Friday to take any steps. Through the point person at my LGBT center, I got an electronic copy of the syllabus and Later the instructor emailed me electronic copies of the readings.
Still quite upset, I tried a couple more days of calming down, but it didn't work. Finally, I emailed the instructor thanking him for the readings and expressing my frustration with how the class was conducted. I bluntly asked how I could learn about privilege from someone who created an exclusionary classroom environment. We emailed back and forth, but he continued to feel the only issue was the readings and their accessibility whilst I thought there were broader issues at play. He wanted to talk about how he was used to Disability Services handling everything. I wanted to discuss how his actions reflected able bodied privilege. Talking at cross-purposes never works and this case was no exception.
My other email exchange had a far more productive outcome. I again contacted the point person at my LGBT center and her almost immediate response was a request to talk about it. In that phone conversation, I found someone to add to my list of people who have an open mind and are willing to learn. It looks like she will be an ally in any other future efforts I undertake to educate my LGBT center on issues of accessibility.
Armed with the syllabus, I then began to use google and other methods to search for the readings in alternative formats discovering that less than one third were available. Given a couple of weeks, I might have managed to work things out, but within the time constraints of a 6 week course, I felt it was not a reasonable endeavor nor was it a reasonable accommodation for my LGBT center to make.
I attended one more class, to get a sense of how the readings would be used and decided they were too central to the discussion for me to simply skip them. I explained this to both the instructor and the point person.
I have learned a couple of lessons from this experience. First, simply telling someone a blind person is going to be in their class is not enough. They need to be educated as to what that means. Explicitly. My mistake was to assume it was clear. As one friend has often told me, "Educate. Clarify. Remind."
Second, don't assume who will and will not understand disability issues. My surmises in this situation were totally off.
There have also been a lot of reminders of lessons I should have learned long ago. When you identify a problem related to access, the next thing out of your mouth should always be the solution. The formula is identify the problem, try to relate it to something familiar to the target individual, and give a preferably simple solution.
It has also become clear that I need to cultivate calm. Educate from a place of calm. Meditation here I come.
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