Waiting to cross my least favorite intersection, I was listening intently to the traffic pattern when someone approached. “Do you want some help?” a male voice asked.
“Yes, please. I hate this intersection.”
As the person walked with me across the street, he said, “I was hesitant to ask if you needed help. The last blind person I asked yelled at me.”
“They yelled at you?”
“Yeah.”
“Wow. I mean, sometimes it can drive us nuts if we don’t need the help, but yelling isn’t called for.”
At the sidewalk, we parted ways, but the conversation stuck in my mind. Several months later I was thinking about what I assume is a disability urban legend. A person in a wheelchair rolls to the edge of the surf, slides out of her chair, and moves out into the water, swimming. A man in a boat comes along and exclaims, "Let me help you!"
The disabled person looks up and says, “You may think I’m drowning, but this is the way I swim.”
The message of this tail is clear: what looks like failing to some is succeeding to others. The stranger so helpful to me must have earlier encountered a blind person who was seemingly having problems but in actuality was doing just fine.
As a blind person, the way I do things sometimes looks rather odd. Chopping vegetables is an excellent example. After the third time someone took the knife away from me, I learned to pave the way with a new person before starting. “You might not want to watch. It looks like I’m going to cut myself, but I won’t.” This preemptive strike saves me from feeling frustration when someone assumes dangerous when observing my well-honed technique.
To put it in a context more universal, think back to your childhood when you proudly presented your mother with the gift of a drawing. “Oh, honey, she said, “what a beautiful flower.” Your small child heart fell because you took three hours to depict Rex the family dog. It is an ego-crushing dose of reality.
Here’s the core of truth for me:An outsider is unable to truly judge success versus failure by observing. The parent cannot read the child’s mind and correctly interpret the intention. The sighted person cannot decide if the disabled person needs help or not. They have no context in which to judge whether a blind person waits at a corner to orient herself or loiters hoping someone appears who can offer assistance.
So, what’s the sensitive person to do? To avoid hurting their child’s feelings, parents fish for more information. “Wow, honey, this is great. How long did it take you to make it?” Unlike the person in the above urban legend, don’t assert your assumption that the disabled person is failing by what you say – ask “Do you need help?” not state “Let me help you.” And, unlike a child, a disabled person can attempt to exercise some patience and understanding, or at least save the rant for her blog.
Wednesday, December 30, 2009
Wednesday, December 23, 2009
Navigating Life
Chronic illness and blindness often have diametrically opposed needs. The former necessitates coping strategies that minimize energy output while maximizing results whereas the latter requires methodical techniques with repetition or intense focus as crucial components. When contemplating a task, I must frequently navigate between conflicting needs of health versus accomplishing the endeavor. Oddly enough, literal navigation – getting from point a to point b – is the area in which I encounter this minefield most.
When you navigate with a cane, there are a multitude of things you attend to simultaneously: 1. your mental map of the route, 2. landmarks like street crossings relevant to your route, 3. stationary obstacles such as trees and poles, 4. moving obstacles like people and cars, and 5. sound cues that aid in walking a straight line. If you are me, add to that list an intense attention to obstructions at face level. Experience melds much of the above list into a sort of instinctive overall awareness of environment, but techniques can differ or conflict. For example, stationary obstacles are discovered by cane and sometimes sound while moving obstacles are only detected by ears. Awareness of face-level obstacles can take your attention away from those on lower levels. It's complicated mental juggling that takes a great deal of energy in addition to the effort of actually walking.
Given that my chronic illness limits energy, I have a keen awareness of how much effort an activity requires and a tendency for frugal spending of the precious resource. Rides from friends are a staple in moving from one point to another. While I am eternally grateful to the people involved, I am continually frustrated by what I see as my dependency on others.
As my energy has grown, I have tried to increase my independent travel, like taking the bus. I admit freely that I am a wimp about it because I'm afraid. Afraid of getting lost. Afraid of strangers. Afraid of needing help. Afraid of looking like a fool. Afraid of, well, everything. I know these fears are ridiculous, but I can't help it.
There is one thing I left off the above list – fear of getting too tired. I recently discovered that is not unfounded. Instinctively I believed that getting to a place might take so much energy that I would not be able to do the activity let alone deal with the return journey, so I avoided situations where I thought that was probable. Recently I had a doctor's appointment and no ride. Since the office is 3 blocks from the bus route that runs past my house, I thought I should attempt getting there under my own steam.
To make certain I could handle the route, I walked it with my friend trailing behind. In fact, she had to trail far enough behind me that her sound would not give me any clues that might aid in following a straight line. Initially she reports having to bite her tongue so she wouldn't blurt out information, but the urge slowly lessened. After we arrived at my destination, we retraced our steps my friend still shadowing me. A few minutes into the journey, we stopped and she said, "You are having trouble walking in a straight line."
I replied, "Yeah, I'm tired.
Suddenly, I realized my instincts were totally right – I could get so exhausted that I might not be able to navigate successfully and avoid peril.
Guess it's nice to know my assumptions weren't keeping me from doing something otherwise possible, but damn. Before I had the possibility of doing things by myself and not doing it was somehow a choice. Now it is a fact and that somehow feels far more limiting and frustrating.
The up side of all this is that guide dogs exponentially reduce the energy necessary to navigate. While my name sits on the guide dog school's waiting list I can contemplate my fabulous independence when my name reaches the top.
When you navigate with a cane, there are a multitude of things you attend to simultaneously: 1. your mental map of the route, 2. landmarks like street crossings relevant to your route, 3. stationary obstacles such as trees and poles, 4. moving obstacles like people and cars, and 5. sound cues that aid in walking a straight line. If you are me, add to that list an intense attention to obstructions at face level. Experience melds much of the above list into a sort of instinctive overall awareness of environment, but techniques can differ or conflict. For example, stationary obstacles are discovered by cane and sometimes sound while moving obstacles are only detected by ears. Awareness of face-level obstacles can take your attention away from those on lower levels. It's complicated mental juggling that takes a great deal of energy in addition to the effort of actually walking.
Given that my chronic illness limits energy, I have a keen awareness of how much effort an activity requires and a tendency for frugal spending of the precious resource. Rides from friends are a staple in moving from one point to another. While I am eternally grateful to the people involved, I am continually frustrated by what I see as my dependency on others.
As my energy has grown, I have tried to increase my independent travel, like taking the bus. I admit freely that I am a wimp about it because I'm afraid. Afraid of getting lost. Afraid of strangers. Afraid of needing help. Afraid of looking like a fool. Afraid of, well, everything. I know these fears are ridiculous, but I can't help it.
There is one thing I left off the above list – fear of getting too tired. I recently discovered that is not unfounded. Instinctively I believed that getting to a place might take so much energy that I would not be able to do the activity let alone deal with the return journey, so I avoided situations where I thought that was probable. Recently I had a doctor's appointment and no ride. Since the office is 3 blocks from the bus route that runs past my house, I thought I should attempt getting there under my own steam.
To make certain I could handle the route, I walked it with my friend trailing behind. In fact, she had to trail far enough behind me that her sound would not give me any clues that might aid in following a straight line. Initially she reports having to bite her tongue so she wouldn't blurt out information, but the urge slowly lessened. After we arrived at my destination, we retraced our steps my friend still shadowing me. A few minutes into the journey, we stopped and she said, "You are having trouble walking in a straight line."
I replied, "Yeah, I'm tired.
Suddenly, I realized my instincts were totally right – I could get so exhausted that I might not be able to navigate successfully and avoid peril.
Guess it's nice to know my assumptions weren't keeping me from doing something otherwise possible, but damn. Before I had the possibility of doing things by myself and not doing it was somehow a choice. Now it is a fact and that somehow feels far more limiting and frustrating.
The up side of all this is that guide dogs exponentially reduce the energy necessary to navigate. While my name sits on the guide dog school's waiting list I can contemplate my fabulous independence when my name reaches the top.
Wednesday, December 16, 2009
Celibate or Disabled?
Continually and consistently people tell me they would rather be than disabled. Then they often list a hierarchy of disabilities where x limitation would be preferred over y and z the least desirable. Personally, I find this to be worthy of eye rolling, but I resist the urge. To TABS this is a serious business, for they do not want to find themselves in a fate "worse than death." And, yes, people do say they'd rather be dead than disabled. Frequently.
Recently pondering my involuntary celibacy and seeking perspective, I realized acquiring yet another disability would be preferable to continuing in this sexless state. It dawned on me that I may have a circumstance so horrific that people would actually pick disability over it: "Would you rather be disabled and have a fulfilling sex life or be non-disabled but celibate?" Finally some common ground.
Why, though, is disability considered such a horrid fate less desirable than, say, the ending of life? Perceived limitations that disability would impose. The socially constructed image most hold of our lives is that of tragic, pitiable, and devoid of happiness. That image is perpetuated by causes that focus on the negative aspects of being disabled in order to raise money by gaining sympathy: each time Jerry Lewis describes a child's tragic struggle to walk, he adds another dark brush stroke to the picture of our lives. Every time somebody asks, "Wouldn't you like to know there is help out there should you be stricken by this terrible plight?" the concept of disability as tragedy is burned deeper into the psyche.
Ironically, all the images of disability as merely a different state of being do not have the power to alter social perceptions. A man without legs climbed a mountain? Well, he must be an exceptional person. Not even a moment of thought is given to the concept that having no legs is possibly not the end of the world. The negative images have a persistence and strength that goes beyond what can be explained rationally.
Given these strong negative impressions, it is not surprising people only consider what their lives would lack if they acquire a disability. Even I would rather die than sit in a dark closet devoid of joy and human contact. The real tragedy in all of this is that being disabled is not that dark, empty closet, but simply a different way of living. Our biggest challenge is often these self-same negative images that make up the bariers we crash into when interacting with TABs. The true tragedy is that if people feared becoming disabled a little less it would actually be easier to be disabled.
Back to my involuntary celibacy. What's a woman to do when she cannot attract romantic attention because everybody thinks she isn't sexually active and she isn't sexually active because nobody thinks of her in that way? Screaming loudly comes to mind.
Recently pondering my involuntary celibacy and seeking perspective, I realized acquiring yet another disability would be preferable to continuing in this sexless state. It dawned on me that I may have a circumstance so horrific that people would actually pick disability over it: "Would you rather be disabled and have a fulfilling sex life or be non-disabled but celibate?" Finally some common ground.
Why, though, is disability considered such a horrid fate less desirable than, say, the ending of life? Perceived limitations that disability would impose. The socially constructed image most hold of our lives is that of tragic, pitiable, and devoid of happiness. That image is perpetuated by causes that focus on the negative aspects of being disabled in order to raise money by gaining sympathy: each time Jerry Lewis describes a child's tragic struggle to walk, he adds another dark brush stroke to the picture of our lives. Every time somebody asks, "Wouldn't you like to know there is help out there should you be stricken by this terrible plight?" the concept of disability as tragedy is burned deeper into the psyche.
Ironically, all the images of disability as merely a different state of being do not have the power to alter social perceptions. A man without legs climbed a mountain? Well, he must be an exceptional person. Not even a moment of thought is given to the concept that having no legs is possibly not the end of the world. The negative images have a persistence and strength that goes beyond what can be explained rationally.
Given these strong negative impressions, it is not surprising people only consider what their lives would lack if they acquire a disability. Even I would rather die than sit in a dark closet devoid of joy and human contact. The real tragedy in all of this is that being disabled is not that dark, empty closet, but simply a different way of living. Our biggest challenge is often these self-same negative images that make up the bariers we crash into when interacting with TABs. The true tragedy is that if people feared becoming disabled a little less it would actually be easier to be disabled.
Back to my involuntary celibacy. What's a woman to do when she cannot attract romantic attention because everybody thinks she isn't sexually active and she isn't sexually active because nobody thinks of her in that way? Screaming loudly comes to mind.
Wednesday, December 9, 2009
Lens of Disability
Second Wednesday of the month means something humorous. Aside from being blessed by a total stranger who repeated himself because I was ignoring him, nobody has done anything worthy of my ridicule. So, something short, sweet, and light. A great dessert after all the heaviness.
Sometimes I feel as though this disability thing has gone beyond an avocation and reached the level of obsession. Often I bite my tongue so as to not yet again say, “AS a disabled person…” I am quite possibly "Jen The Broken Record." Shockingly, nobody has attempted to muzzle me. Yet.
Recently, I had a revelation: Anything can be looked at from a disability perspective. Absolutely anything. What lotion will I put on after my shower? Well, if I am going out in public, the scent might negatively impact somebody with Multiple Chemical Sensitivity forcing them to avoid me or possibly leave the room. So, I reach for unscented lotion. How should I emphasize a phrase on a poster? If I simply use color, anybody who is color blind will miss the point, so I should probably use a change of font as well.
If disability creeps into such mundane considerations, no wonder it is possible to see more significant issues through that lens. Obama’s stimulus package? Oh, let me count the ways. Disabled people are often at the bottom of the economic ladder, so mortgage assistance is often not relevant to our lives. We cannot afford to buy homes. Instead of helping people get out of trouble they often got into eyes wide open, some of those funds could be better spent on accessible transportation or a food stamp policy that allows for increased amounts for those with food allergies or sensitivities resulting in higher food costs. San Diego is considering water rationing. Has anybody thought about people with mobility impairments who take longer to wash themselves or dishes? Public health concern anybody.
I still wonder if my life’s work has morphed into an obsession. So, I dare each of you to come up with a social, political, or economic issue that you think cannot be examined from a disability perspective. I’m not sure if this will prove or disprove I’m obsessed, but it should be interesting.
Sometimes I feel as though this disability thing has gone beyond an avocation and reached the level of obsession. Often I bite my tongue so as to not yet again say, “AS a disabled person…” I am quite possibly "Jen The Broken Record." Shockingly, nobody has attempted to muzzle me. Yet.
Recently, I had a revelation: Anything can be looked at from a disability perspective. Absolutely anything. What lotion will I put on after my shower? Well, if I am going out in public, the scent might negatively impact somebody with Multiple Chemical Sensitivity forcing them to avoid me or possibly leave the room. So, I reach for unscented lotion. How should I emphasize a phrase on a poster? If I simply use color, anybody who is color blind will miss the point, so I should probably use a change of font as well.
If disability creeps into such mundane considerations, no wonder it is possible to see more significant issues through that lens. Obama’s stimulus package? Oh, let me count the ways. Disabled people are often at the bottom of the economic ladder, so mortgage assistance is often not relevant to our lives. We cannot afford to buy homes. Instead of helping people get out of trouble they often got into eyes wide open, some of those funds could be better spent on accessible transportation or a food stamp policy that allows for increased amounts for those with food allergies or sensitivities resulting in higher food costs. San Diego is considering water rationing. Has anybody thought about people with mobility impairments who take longer to wash themselves or dishes? Public health concern anybody.
I still wonder if my life’s work has morphed into an obsession. So, I dare each of you to come up with a social, political, or economic issue that you think cannot be examined from a disability perspective. I’m not sure if this will prove or disprove I’m obsessed, but it should be interesting.
Wednesday, December 2, 2009
Can you pack your soul in bubble wrap?
Shock of all shocks, the face fascinates me. Composed of four of the five senses – sight, smell, taste, and hearing – the face is arguably the most important part of the external body. (I guess it could be disputed that ears are part of the head not specifically the face, but I see with my ears so.....) Communication is one area in which the face is crucial for the mouth usually produces language, the ears hear it, and the eyes gage facial expressions. Food is consumed by the mouth with both the tongue and nose involved in not just enjoying the experience but providing warnings of the presence of toxic substances. Eyes are also key in detecting dangers from the environment and their position in the front of the head is either the chicken or the egg explanation of body orientation. Looking at it like this I am not surprised faces are given so much attention and importance by human beings. I have some issues with the degree to which this significance has been magnified beyond the biological, but that's a topic for another day.
My face and I have gone through quite a bit together. (Details can be found in "What My Classmates Never Knew.") For years I hated it considering it to be separate from the rest of me: from the neck down, I was marginally acceptable, but my face was a different story. I loathed it, thought it was hideous, and if wearing a paper bag had been an option, I would have happily done so. The unacceptable nature of my face was the cause of all the surgical pain as well as the problems I had fitting in with my peers. In my mind, it was a separate entity that existed outside of who and what I was as a person. Known as disembodiment, this is a common mental construct for many disabled people who cope with internalized hatred of the "disabled" part of themselves by making it completely distinct from what they consider their essence.
In college I realized I didn't have to do this. Eventually I found a way to inhabit my body with a bone-deep certainty that for better or worse nothing can shake. It goes beyond merely living in my own body for I know I am it and it is me. By necessity part of that process involved addressing my body image issues because being a form you loath is not particularly pleasant. Though I managed this, it is a far more tenuous thing. Loss of the rest of my sight, the ending of romantic relationships, and surgery to remove infected implants have shaken it for a time only to emerge sooner or later typically stronger for the experience. Looking back I know the steps I took to get to this place and the effort involved, but I cannot quite understand how I wound up here. Actually, of late, it's more like there.
About 18 months ago, I started having issues with my facial relationship when I began wearing dark glasses to protect my eyes. People responded to me differently and some who knew me went so far as to tell me the covering of my eyes was a big improvement. One cashier actually looked between me and my photo ID then suggested I get a new picture. When I took off my glasses and said, "I think it's just the glasses," she became very quiet. All of has messed with my mind in countless ways. Who wants to be considered attractive while wearing glasses only to have the person flip out when they come off? Not me. Ever.
Because of the reconstructive surgeries and removal of implants, my face hurts constantly. For a long time it was only an issue of pain, but since the glasses it has become a constant reminder of how unacceptable my appearance is to most folks. Even though I've stopped wearing the glasses, I cannot seem to get my facial relationship back on track.
Rarely does my face receive positive attention either verbal or physical. For years I sat as doctors lectured about my face's failings which had a definite impact on my body image. More significantly my face was touched by detached, clinical hands that caused pain. By comparison there has been little positive physical attention given to it. Beyond the fact that people are afraid of hurting me, I know we just don't touch each other in that way except when being intimate. Given the dearth of that sort of thing in my life, my face has been neglected. I feel that lack as an ache so deep down inside I have no idea how to touch let alone tend it.
Sometimes I have an urge to hide my face because I feel vulnerable either purely emotionally or in terms of attractiveness. Oddly enough, if I happen to be naked and somehow feel either of these things, I don't dive for my clothes but fight the yearning for a paper bag.
Fortunately I can mostly separate how I feel about my face from my actions. I haven't reached for a paper bag yet, but there has been an increasingly intense urge growing to wear my dark glasses. The other night I almost lost the battle. I know sooner or later I'll get a grip, but right now I feel as though my face is this misused creature yearning to be wrapped up in a soft blanket and stroked gently like we do to the backs of upset children. While I must be protective of it on a physical level – getting my face hit is painful and potentially significantly damaging – I feel its vulnerability on an emotional level with a sinking, knotted feeling in my gut. Knowing this feeling will pass does nothing to alleviate the fragility I feel inside.
Right after I wrote the rough draft of this entry, I began to read Emily Rapp's "Poster Child: A Memoir," which explores similar issues better and with more art than I can. Worth reading.
f
My face and I have gone through quite a bit together. (Details can be found in "What My Classmates Never Knew.") For years I hated it considering it to be separate from the rest of me: from the neck down, I was marginally acceptable, but my face was a different story. I loathed it, thought it was hideous, and if wearing a paper bag had been an option, I would have happily done so. The unacceptable nature of my face was the cause of all the surgical pain as well as the problems I had fitting in with my peers. In my mind, it was a separate entity that existed outside of who and what I was as a person. Known as disembodiment, this is a common mental construct for many disabled people who cope with internalized hatred of the "disabled" part of themselves by making it completely distinct from what they consider their essence.
In college I realized I didn't have to do this. Eventually I found a way to inhabit my body with a bone-deep certainty that for better or worse nothing can shake. It goes beyond merely living in my own body for I know I am it and it is me. By necessity part of that process involved addressing my body image issues because being a form you loath is not particularly pleasant. Though I managed this, it is a far more tenuous thing. Loss of the rest of my sight, the ending of romantic relationships, and surgery to remove infected implants have shaken it for a time only to emerge sooner or later typically stronger for the experience. Looking back I know the steps I took to get to this place and the effort involved, but I cannot quite understand how I wound up here. Actually, of late, it's more like there.
About 18 months ago, I started having issues with my facial relationship when I began wearing dark glasses to protect my eyes. People responded to me differently and some who knew me went so far as to tell me the covering of my eyes was a big improvement. One cashier actually looked between me and my photo ID then suggested I get a new picture. When I took off my glasses and said, "I think it's just the glasses," she became very quiet. All of has messed with my mind in countless ways. Who wants to be considered attractive while wearing glasses only to have the person flip out when they come off? Not me. Ever.
Because of the reconstructive surgeries and removal of implants, my face hurts constantly. For a long time it was only an issue of pain, but since the glasses it has become a constant reminder of how unacceptable my appearance is to most folks. Even though I've stopped wearing the glasses, I cannot seem to get my facial relationship back on track.
Rarely does my face receive positive attention either verbal or physical. For years I sat as doctors lectured about my face's failings which had a definite impact on my body image. More significantly my face was touched by detached, clinical hands that caused pain. By comparison there has been little positive physical attention given to it. Beyond the fact that people are afraid of hurting me, I know we just don't touch each other in that way except when being intimate. Given the dearth of that sort of thing in my life, my face has been neglected. I feel that lack as an ache so deep down inside I have no idea how to touch let alone tend it.
Sometimes I have an urge to hide my face because I feel vulnerable either purely emotionally or in terms of attractiveness. Oddly enough, if I happen to be naked and somehow feel either of these things, I don't dive for my clothes but fight the yearning for a paper bag.
Fortunately I can mostly separate how I feel about my face from my actions. I haven't reached for a paper bag yet, but there has been an increasingly intense urge growing to wear my dark glasses. The other night I almost lost the battle. I know sooner or later I'll get a grip, but right now I feel as though my face is this misused creature yearning to be wrapped up in a soft blanket and stroked gently like we do to the backs of upset children. While I must be protective of it on a physical level – getting my face hit is painful and potentially significantly damaging – I feel its vulnerability on an emotional level with a sinking, knotted feeling in my gut. Knowing this feeling will pass does nothing to alleviate the fragility I feel inside.
Right after I wrote the rough draft of this entry, I began to read Emily Rapp's "Poster Child: A Memoir," which explores similar issues better and with more art than I can. Worth reading.
f
Wednesday, November 25, 2009
Gratitude
Like seemingly everything in my life, gratitude is a complicated issue for me. The looming holiday has inspired me to write about it along with an accounting of my blessings.
More and more, people in my neighborhood have taken to calling out to me when the intersection light indicates walking is safe. The crossing in question is possibly the hardest I have ever encountered, because its traffic patterns do not lend themselves to auditory determination of cars stopped in response to walk signs appearing. I have been known to wait five to ten minutes for the circumstances to arise that make me certain I won't become road pizza. A few times I have been very, very wrong and I still do not know why I was not in need of pepperoni. Whenever somebody calls to me that the light has changed, I feel relief and gratitude. A "thank you" does not seem sufficient to express my appreciation. To many it seems like such a little thing, but to me it makes a huge difference.
There is another kind of help that does not inspire gratitude within my heart no matter how hard I try to prompt it. People offer help that at the least I do not need and at the worst will actually be detrimental. Polite refusal meets with determined insistence that I accept their "suggestion" and these individuals want my grateful thanks. Even worse are the folks who have decided, correctly or not, my intended destination and silently reach out and nudge me. First of all, excuse me, but when was it ever alright to randomly touch women without saying a word? Second, while I know the people in question are just trying to help, I am unable to overcome my dislike of the behavior to express let alone feel appreciative.
Sometimes I think that is a very sane state of mind and other times I feel like the most ungrateful person on the planet, the latter usually happening right after I've complained to a friend who then points out "They were just trying to help make sure you didn't run into something." Guilt and gratitude are not synonymous, though. I have been told more than once that my problem is pride. I suppose that makes sense since help that feels demeaning bothers me the most. I would like to know, though, when receiving help meant giving up one's dignity. An understanding is slowly growing inside of me that says people want to help but expediency is a primary consideration. In picking the most convenient means of aiding somebody dignity is often ignored because of the larger amount of effort involved to keep it intact. On an instinctive level I know those who think I should feel appreciation for whatever help is given would sing a different tune if they lived my life for more than an hour. Or maybe I'm just trying to find a justification for my prideful ingratitude.
Frequently I baffle people by telling them I would not rid myself of my disabilities if it were offered without strings. For me, the experience of being disabled –good, bad, and hard -- has been a major formative factor responsible for the person I have become. Since I like who I am, it follows that I would appreciate what has shaped me. In many ways, I am grateful for even the hardest aspects of my life. Rather than seeing myself as having Overcome my circumstances, I consider myself a product of those circumstances. The metaphor of diamond being a result of coal subjected to extreme pressure might be schmaltzy and overstated, but contains a grain of truth for nobody says, "Wow, look at that diamond. It went through all that stress and survived." Instead people appreciate its aesthetic appeal sometimes not even cognizant of what brought it into being. I am not, will not, and would make a face if you compared me to a diamond, but I do feel grateful for the forces that have wrought me.
On a less philosophical note, I am appreciative of many things that have happened in the past year from new friendships formed to older friendships deepening. In 2009 I have collected more than a handful of incredible experiences I will remember when I'm seventy-five. Even things with my family are morphing in a positive direction. Furthermore, I have managed to exercise regularly for over nine months which is the first time that has been possible in about eighteen years. Now I can consider doing multiple energetic things not just in the same week but in the same day. My immune system has managed to fight off colds and infections that would have flattened me for weeks even 3 years ago. Maybe it's the acupuncture. Maybe its the supplements. Maybe it was simply time. The cause is far less important to me than the outcome which I appreciate more than I think anybody realizes for it is not just hard things that shape who we are but also the softer, uplifting ones. I will admit living through changes brought about by benevolent forces are far more pleasant.
Finally and most significantly I feel intense gratitude that, no matter what happens PerkyJen always emerges. I am not certain if that is a sign of strength, a determined spirit, or what, but I know in every cell of my being that I can get through whatever appears in my path. Sorrow, fear, anger, and spiritual weariness may occupy my mind and heart for a time only to be replaced by a pleasanter emotional landscape. This tendency is so strong and reliable that I will cling to the knowledge of it in the midst of whatever hard thing is happening. I think half the time knowing that makes it possible to get through the latest complication. Thank goodness.
More and more, people in my neighborhood have taken to calling out to me when the intersection light indicates walking is safe. The crossing in question is possibly the hardest I have ever encountered, because its traffic patterns do not lend themselves to auditory determination of cars stopped in response to walk signs appearing. I have been known to wait five to ten minutes for the circumstances to arise that make me certain I won't become road pizza. A few times I have been very, very wrong and I still do not know why I was not in need of pepperoni. Whenever somebody calls to me that the light has changed, I feel relief and gratitude. A "thank you" does not seem sufficient to express my appreciation. To many it seems like such a little thing, but to me it makes a huge difference.
There is another kind of help that does not inspire gratitude within my heart no matter how hard I try to prompt it. People offer help that at the least I do not need and at the worst will actually be detrimental. Polite refusal meets with determined insistence that I accept their "suggestion" and these individuals want my grateful thanks. Even worse are the folks who have decided, correctly or not, my intended destination and silently reach out and nudge me. First of all, excuse me, but when was it ever alright to randomly touch women without saying a word? Second, while I know the people in question are just trying to help, I am unable to overcome my dislike of the behavior to express let alone feel appreciative.
Sometimes I think that is a very sane state of mind and other times I feel like the most ungrateful person on the planet, the latter usually happening right after I've complained to a friend who then points out "They were just trying to help make sure you didn't run into something." Guilt and gratitude are not synonymous, though. I have been told more than once that my problem is pride. I suppose that makes sense since help that feels demeaning bothers me the most. I would like to know, though, when receiving help meant giving up one's dignity. An understanding is slowly growing inside of me that says people want to help but expediency is a primary consideration. In picking the most convenient means of aiding somebody dignity is often ignored because of the larger amount of effort involved to keep it intact. On an instinctive level I know those who think I should feel appreciation for whatever help is given would sing a different tune if they lived my life for more than an hour. Or maybe I'm just trying to find a justification for my prideful ingratitude.
Frequently I baffle people by telling them I would not rid myself of my disabilities if it were offered without strings. For me, the experience of being disabled –good, bad, and hard -- has been a major formative factor responsible for the person I have become. Since I like who I am, it follows that I would appreciate what has shaped me. In many ways, I am grateful for even the hardest aspects of my life. Rather than seeing myself as having Overcome my circumstances, I consider myself a product of those circumstances. The metaphor of diamond being a result of coal subjected to extreme pressure might be schmaltzy and overstated, but contains a grain of truth for nobody says, "Wow, look at that diamond. It went through all that stress and survived." Instead people appreciate its aesthetic appeal sometimes not even cognizant of what brought it into being. I am not, will not, and would make a face if you compared me to a diamond, but I do feel grateful for the forces that have wrought me.
On a less philosophical note, I am appreciative of many things that have happened in the past year from new friendships formed to older friendships deepening. In 2009 I have collected more than a handful of incredible experiences I will remember when I'm seventy-five. Even things with my family are morphing in a positive direction. Furthermore, I have managed to exercise regularly for over nine months which is the first time that has been possible in about eighteen years. Now I can consider doing multiple energetic things not just in the same week but in the same day. My immune system has managed to fight off colds and infections that would have flattened me for weeks even 3 years ago. Maybe it's the acupuncture. Maybe its the supplements. Maybe it was simply time. The cause is far less important to me than the outcome which I appreciate more than I think anybody realizes for it is not just hard things that shape who we are but also the softer, uplifting ones. I will admit living through changes brought about by benevolent forces are far more pleasant.
Finally and most significantly I feel intense gratitude that, no matter what happens PerkyJen always emerges. I am not certain if that is a sign of strength, a determined spirit, or what, but I know in every cell of my being that I can get through whatever appears in my path. Sorrow, fear, anger, and spiritual weariness may occupy my mind and heart for a time only to be replaced by a pleasanter emotional landscape. This tendency is so strong and reliable that I will cling to the knowledge of it in the midst of whatever hard thing is happening. I think half the time knowing that makes it possible to get through the latest complication. Thank goodness.
Wednesday, November 18, 2009
Chip on my shoulder
I have a friend who instinctively understands the way I experience the world as a disabled woman with one notable exception: we often argue about the psychology behind others' behavior. Usually it comes up when I'm griping about being ignored in some social situation. While some people try to convince me everyone is isolated in group settings making my experience commonplace, this particular friend acknowledges the behavior and its uniqueness, but contends my understanding of motivation is totally off base. Her position has changed instantaneously, utterly, and unequivocally.
The transformation was accomplished by the experiences of David Mixner, a writer and long-time activist on issues of civil rights, HIV/AIDS, sexual orientation, and war. Recovering from illness, Mixner needed to use a wheelchair and was blown away by what he discovered which he chronicled at http://www.davidmixner.com/2009/11/hells-kitchen-journal-my-view-from-a-wheelchair.html. I told my friend a brief version of what happened to Mixner when he sat in his chair at a Whitehouse event attended by many of his friends and acquaintances. Previously these individuals would have approached to converse, but while Mixner occupied that chair, he received a few nods and smiles with little actual contact. Essentially, he was ignored.
After I conveyed the incident, my friend said, "Wow, that makes no sense. You must be right about people thinking you're contagious or something." Like most, I enjoy being told I'm right, but the conversation did not leave me with the glow of long overdue validation, instead a vague disquiet. It took the words of a TAB stranger to accomplish what years of conversation could not despite my academic background in Disability Studies and lifetime of experience. I felt irrelevant.
Loathing that feeling, I tried to wrap my mind around why people dismiss my observations and hypothesized reasons for behavior. One possibility is simple – if I cannot see what people are doing, how can I observe with accuracy? Ears. I have ears. I realize that reliance upon sight causes most to not comprehend what can be determined by sound, but I am an expert at the auditory. Sighted people read body language and I read the language of tone, act, and reaction. Unfortunately, ears are not granted the reliability of eyes, but if a tree falls in the forest and you only hear it does that mean it didn't happen?
My perceptions and theorizing are dismissed for other reasons as well. If my observations were granted validity, then people would have to also recognize humans are often idiots. It is far easier to decide one person is wrong than to acknowledge we live in the kind of world where individuals are ignored because they are sitting down instead of standing. Refusal to concede this truth does not prove its falseness, rather it hinders social progress for admission of the problem must occur before it can be addressed.
The most frequently mentioned reason that my observations and hypotheses are wrong is the chip I carry on my shoulder. Apparently I mostly have a bad attitude when it comes to TABs. I jump to the wrong conclusions, create motivations out of nothing, and generally take everything personally. Guess what? That's all entirely true.
My chip has been formed over time shaped by accumulated experience filtered through my personality. The balance of formative data tends to be negative creating chips, but there are also people who have been fashioned by positive events. No maladaptive stigma is associated with their perceptual tendencies. Whether burdened by a chip or not, probabilities, predictions, and assumptions are the tools we all use to navigate life from relying upon our alarm clock to wake us to knowing the waiter will bring you food after you have ordered. Because my assumptions are about negative things they are transformed from advantageous life strategies to bitter conjecture.
I confess here and now that I misinterpret behavior and motivations with some frequency, but I am right more than I'm wrong. When possible, I'll check my assumptions with the person, often interrogating a friend about their initial reaction to me. I compare notes with other disabled people, read memoirs of disabled folks, and study how other disabled people are treated in my presence. Speculative though my conclusions may be, they are not made in a vacuum nor are they rigidly carved in stone. New data changes old impressions and I try to maintain flexible thinking. I am completely certain I make mistakes, form inaccurate conclusions, and think not nice things about good people. I admit to being human.
Negative though my interpretations might be, they are not necessarily false. While I wish we lived in a world where my physical difference did not impact the actions of others, I have witnessed a different reality that refuses to submit to my will. I am going to leave you with an often repeated sequence of events. Perhaps you will find an explanation that I have yet to consider.
I walk up to a bathroom and there is a line. Somebody either at the front or in the middle of the line says that I should go before them. This offer has not been made to anyone else. Polite refusal tends to meet with insistence on the part of the offeror. How is this neither ignorant nor condescending?
The transformation was accomplished by the experiences of David Mixner, a writer and long-time activist on issues of civil rights, HIV/AIDS, sexual orientation, and war. Recovering from illness, Mixner needed to use a wheelchair and was blown away by what he discovered which he chronicled at http://www.davidmixner.com/2009/11/hells-kitchen-journal-my-view-from-a-wheelchair.html. I told my friend a brief version of what happened to Mixner when he sat in his chair at a Whitehouse event attended by many of his friends and acquaintances. Previously these individuals would have approached to converse, but while Mixner occupied that chair, he received a few nods and smiles with little actual contact. Essentially, he was ignored.
After I conveyed the incident, my friend said, "Wow, that makes no sense. You must be right about people thinking you're contagious or something." Like most, I enjoy being told I'm right, but the conversation did not leave me with the glow of long overdue validation, instead a vague disquiet. It took the words of a TAB stranger to accomplish what years of conversation could not despite my academic background in Disability Studies and lifetime of experience. I felt irrelevant.
Loathing that feeling, I tried to wrap my mind around why people dismiss my observations and hypothesized reasons for behavior. One possibility is simple – if I cannot see what people are doing, how can I observe with accuracy? Ears. I have ears. I realize that reliance upon sight causes most to not comprehend what can be determined by sound, but I am an expert at the auditory. Sighted people read body language and I read the language of tone, act, and reaction. Unfortunately, ears are not granted the reliability of eyes, but if a tree falls in the forest and you only hear it does that mean it didn't happen?
My perceptions and theorizing are dismissed for other reasons as well. If my observations were granted validity, then people would have to also recognize humans are often idiots. It is far easier to decide one person is wrong than to acknowledge we live in the kind of world where individuals are ignored because they are sitting down instead of standing. Refusal to concede this truth does not prove its falseness, rather it hinders social progress for admission of the problem must occur before it can be addressed.
The most frequently mentioned reason that my observations and hypotheses are wrong is the chip I carry on my shoulder. Apparently I mostly have a bad attitude when it comes to TABs. I jump to the wrong conclusions, create motivations out of nothing, and generally take everything personally. Guess what? That's all entirely true.
My chip has been formed over time shaped by accumulated experience filtered through my personality. The balance of formative data tends to be negative creating chips, but there are also people who have been fashioned by positive events. No maladaptive stigma is associated with their perceptual tendencies. Whether burdened by a chip or not, probabilities, predictions, and assumptions are the tools we all use to navigate life from relying upon our alarm clock to wake us to knowing the waiter will bring you food after you have ordered. Because my assumptions are about negative things they are transformed from advantageous life strategies to bitter conjecture.
I confess here and now that I misinterpret behavior and motivations with some frequency, but I am right more than I'm wrong. When possible, I'll check my assumptions with the person, often interrogating a friend about their initial reaction to me. I compare notes with other disabled people, read memoirs of disabled folks, and study how other disabled people are treated in my presence. Speculative though my conclusions may be, they are not made in a vacuum nor are they rigidly carved in stone. New data changes old impressions and I try to maintain flexible thinking. I am completely certain I make mistakes, form inaccurate conclusions, and think not nice things about good people. I admit to being human.
Negative though my interpretations might be, they are not necessarily false. While I wish we lived in a world where my physical difference did not impact the actions of others, I have witnessed a different reality that refuses to submit to my will. I am going to leave you with an often repeated sequence of events. Perhaps you will find an explanation that I have yet to consider.
I walk up to a bathroom and there is a line. Somebody either at the front or in the middle of the line says that I should go before them. This offer has not been made to anyone else. Polite refusal tends to meet with insistence on the part of the offeror. How is this neither ignorant nor condescending?
Wednesday, November 11, 2009
Absurdities
Like everything else, humor comes in all shapes and sizes. This month's first story falls into the category of so bad that it passes into the realm of absurdity. It came to mind when I was writing the history of my medical situation.
The summer I turned 18 I had my jaw surgically broken and wired shut. Because I only breathe through my mouth, there were concerns about oxygen supply, so they did a tracheotomy. (They cut a hole in your windpipe and insert a tube through which you breathe.) The two unexpected consequences were pneumonia and an inability to speak. All the coughing you would expect with pneumonia happened through that trach up to and including bloody mucus.
This surgery took place in Virginia a couple of hours from my Aunt's home. While I was at the hospital, my sister and a cousin (not the Aunt's child) visited with my Aunt and her kids. For better or worse, in my family, people are "protected" by not being told negative things if they are already in a stressful situation.) Therefore, it was only after I was discharged from the hospital and we went to retrieve the two visitors that we learned my sister had broken her foot. For the eight hour trip home in our little car, we have me coughing up a storm in the front seat while my sister had her foot propped up in the back and my cousin was wedged in somehow.
Having your jaw wired shut means liquefied food. Since I was unable to even drink, I used a huge syringe to suck my meal up and then squirt it into the back of my mouth. Our long trip home necessitated a stop for food. Picture this: we were in a restaurant with my sister on crutches and me with a trach, coughing constantly, while consuming pureed clam chowder with a syringe and trying to communicate with gestures.
The story gets better. Mom must have been very stressed out and consequently speeding because we were pulled over by a cop. Poor cop. Poor Mom. I engaged in some strategic coughing and my sister and her huge white cast were easily visible in the back seat. The officer let her go with just a warning. The second time – yes, you read that correctly – it was the dark of night and the officer new my family slightly. I guess coughing wasn't sufficient to sway her because that time Mom received a ticket.
The second story has no tragic elements, instead offered to leave you on a cheerful note in case the above didn't fill you with hilarity. After reading a previous entry, a friend of mine reminded me of this event's occurrence though I still cannot clearly bring it to mind.
The basic story will be familiar to you. We were hanging out in a coffee shop and a woman engaged us in conversation. She went on about how nice it was that my companion helped me. My friend fielded these comments as graciously as possible while avoiding continued conversation. Eventually, the woman went away.
When my friend went to the counter to get drinks, the woman approached her again and said, "Oh, it's so nice how you help her."
My friend replied, "She's my friend. I do things for my friends. They do things for me."
"You're just such a great person," the woman enthused, "what do you enjoy most doing for her? What makes you feel the best about yourself?"
With a straight face, my friend answered, "Oh, well, just before I leave I re-arrange all the furniture and the thought of her stumbling over it gives me great pleasure." Not waiting for a response, my friend walked away.
I am running out of amusing tales with which to regale all of you. If it's not too much trouble, send out some vibes that will encourage people to do wacky things. After all, it will at least make me laugh -- always a worthwhile endeavor.
The summer I turned 18 I had my jaw surgically broken and wired shut. Because I only breathe through my mouth, there were concerns about oxygen supply, so they did a tracheotomy. (They cut a hole in your windpipe and insert a tube through which you breathe.) The two unexpected consequences were pneumonia and an inability to speak. All the coughing you would expect with pneumonia happened through that trach up to and including bloody mucus.
This surgery took place in Virginia a couple of hours from my Aunt's home. While I was at the hospital, my sister and a cousin (not the Aunt's child) visited with my Aunt and her kids. For better or worse, in my family, people are "protected" by not being told negative things if they are already in a stressful situation.) Therefore, it was only after I was discharged from the hospital and we went to retrieve the two visitors that we learned my sister had broken her foot. For the eight hour trip home in our little car, we have me coughing up a storm in the front seat while my sister had her foot propped up in the back and my cousin was wedged in somehow.
Having your jaw wired shut means liquefied food. Since I was unable to even drink, I used a huge syringe to suck my meal up and then squirt it into the back of my mouth. Our long trip home necessitated a stop for food. Picture this: we were in a restaurant with my sister on crutches and me with a trach, coughing constantly, while consuming pureed clam chowder with a syringe and trying to communicate with gestures.
The story gets better. Mom must have been very stressed out and consequently speeding because we were pulled over by a cop. Poor cop. Poor Mom. I engaged in some strategic coughing and my sister and her huge white cast were easily visible in the back seat. The officer let her go with just a warning. The second time – yes, you read that correctly – it was the dark of night and the officer new my family slightly. I guess coughing wasn't sufficient to sway her because that time Mom received a ticket.
The second story has no tragic elements, instead offered to leave you on a cheerful note in case the above didn't fill you with hilarity. After reading a previous entry, a friend of mine reminded me of this event's occurrence though I still cannot clearly bring it to mind.
The basic story will be familiar to you. We were hanging out in a coffee shop and a woman engaged us in conversation. She went on about how nice it was that my companion helped me. My friend fielded these comments as graciously as possible while avoiding continued conversation. Eventually, the woman went away.
When my friend went to the counter to get drinks, the woman approached her again and said, "Oh, it's so nice how you help her."
My friend replied, "She's my friend. I do things for my friends. They do things for me."
"You're just such a great person," the woman enthused, "what do you enjoy most doing for her? What makes you feel the best about yourself?"
With a straight face, my friend answered, "Oh, well, just before I leave I re-arrange all the furniture and the thought of her stumbling over it gives me great pleasure." Not waiting for a response, my friend walked away.
I am running out of amusing tales with which to regale all of you. If it's not too much trouble, send out some vibes that will encourage people to do wacky things. After all, it will at least make me laugh -- always a worthwhile endeavor.
Wednesday, November 4, 2009
Desperately Seeking Angry Jen
Lately I have been unable to avoid the fact that I have changed and not for the better. Instead of being filled with indignant rage at acts of disablism, I start thinking about how the other person must feel, make excuses for bad behavior, or let obnoxious attitudes continue unchallenged. Even in this blog, where I try to be so honest, I avoid certain topics, including examples that involve people currently in my life because I do not wish to upset friends or family with my words.
Vague feelings of missing my former self have been around for a while, only coming to a head as a result of a recent event. Apologies to the person involved. Or maybe that should be gratitude since I finally confronted something important. I was at a bonfire roasting my hot dog over the flames. Across the blaze, A friend looked over and told me my face was extremely red. To me, this was not a big deal, but my friend persisted. Blaming the redness on a failure of sunscreen changed nothing. He wouldn't drop it until I moved back. A lot.
Did this annoy me? Definitely, but I made light of it because I recognized he had just hit the "overly concerned" phase most go through when getting to know me. What would be cause for worry for most people is not even a blip on my personal radar since my body does odd things all the time. Fretting is reserved for big events, like my face swelling and hurting so much that it interferes with eating. Though I appreciated being told, I didn't appreciate the degree of concern persisting past me saying everything was fine.
Why didn't I say something? I recognized what was happening and knew the phase would pass. Rather than force the issue, I let go. Formerly, I would have spoken up asking him to back off and show some respect for me by accepting it when I said things were fine. I want to know where that Jen is now.
As one of my earlier entries indicated, 2009 has brought up tons of romantic relationship issues for me. One unfortunate part of dating is how friends and family of the other person react to me. Often, badly. Grandfathers try to talk their grandsons out of seeing me expressing concerns about how much care and attention I will require. Mothers have tried to talk their sons out of dating me. Friends have expressed concerns. It is ridiculous, disablist, and based on misconceptions about me along with a complete disregard for my positive qualities.
I was pondering this happening again a few days after the bonfire situation. Guess what I realized? These concerned friends and relatives are just going through a phase and once they know me they will get over it. Hello? Where's my indignation? Do I really think I should stand by and let this happen? I thought passive tolerance of outright stupidity was not my thing, but apparently I've changed --I am fine with being valued less than a cat.
One more example that has informed my opinion that I've lost my edge. A friend has a couple of kids who I have been around frequently. Earlier this year, when one of these kids was asked about me, she said something like, "Oh, so and so helps her." There was not a thought given to all the things I do for myself let alone any of my talents and abilities. I was reduced to somebody in need of help. Made me so mad I almost screamed.
Instead, I brought my concerns to a friend of the family, who said it was no big deal. I let that convince me to leave it alone. In the past, I would have sat the child down and explained to her that while I did need help occasionally, I also did many things for myself sometimes even helping others. In asking her specific questions, I could have reminded her of all she has seen me do independently. Even teaching her something I could do that she could not would have fostered positive change.
From the above incidents, I have been left with a muddy tangle of feelings magnified by my own frustration with my passivity. I have become so keenly aware of how others feel that I have made myself tolerate what I know is wrong. The "mustn't offend" has overpowered the "I'm offended."
I dearly miss the cleansing fire of pure anger -- the certainty of knowing people should not say/act /perpetuate the things they do. There is a sense of self-worth inherent in the knowledge that another person is wrong, not based on superiority but on knowing humanity and individuals can and should do better. While I like myself more now than at any other time in my life, I am aware the clear flame of anger would add something I currently lack. Becoming a person filled with anger who lacks human compassion is not for me, but neither is this passive person I have become. Somehow I want to reclaim the good parts of that kick ass, take names woman of years ago while leaving the bitterness and self-hatred behind. I must temper indignation with compassion exercising grace and tact. As we all know, I have those two things in abundance. (Yes, that was sarcasm.)
Vague feelings of missing my former self have been around for a while, only coming to a head as a result of a recent event. Apologies to the person involved. Or maybe that should be gratitude since I finally confronted something important. I was at a bonfire roasting my hot dog over the flames. Across the blaze, A friend looked over and told me my face was extremely red. To me, this was not a big deal, but my friend persisted. Blaming the redness on a failure of sunscreen changed nothing. He wouldn't drop it until I moved back. A lot.
Did this annoy me? Definitely, but I made light of it because I recognized he had just hit the "overly concerned" phase most go through when getting to know me. What would be cause for worry for most people is not even a blip on my personal radar since my body does odd things all the time. Fretting is reserved for big events, like my face swelling and hurting so much that it interferes with eating. Though I appreciated being told, I didn't appreciate the degree of concern persisting past me saying everything was fine.
Why didn't I say something? I recognized what was happening and knew the phase would pass. Rather than force the issue, I let go. Formerly, I would have spoken up asking him to back off and show some respect for me by accepting it when I said things were fine. I want to know where that Jen is now.
As one of my earlier entries indicated, 2009 has brought up tons of romantic relationship issues for me. One unfortunate part of dating is how friends and family of the other person react to me. Often, badly. Grandfathers try to talk their grandsons out of seeing me expressing concerns about how much care and attention I will require. Mothers have tried to talk their sons out of dating me. Friends have expressed concerns. It is ridiculous, disablist, and based on misconceptions about me along with a complete disregard for my positive qualities.
I was pondering this happening again a few days after the bonfire situation. Guess what I realized? These concerned friends and relatives are just going through a phase and once they know me they will get over it. Hello? Where's my indignation? Do I really think I should stand by and let this happen? I thought passive tolerance of outright stupidity was not my thing, but apparently I've changed --I am fine with being valued less than a cat.
One more example that has informed my opinion that I've lost my edge. A friend has a couple of kids who I have been around frequently. Earlier this year, when one of these kids was asked about me, she said something like, "Oh, so and so helps her." There was not a thought given to all the things I do for myself let alone any of my talents and abilities. I was reduced to somebody in need of help. Made me so mad I almost screamed.
Instead, I brought my concerns to a friend of the family, who said it was no big deal. I let that convince me to leave it alone. In the past, I would have sat the child down and explained to her that while I did need help occasionally, I also did many things for myself sometimes even helping others. In asking her specific questions, I could have reminded her of all she has seen me do independently. Even teaching her something I could do that she could not would have fostered positive change.
From the above incidents, I have been left with a muddy tangle of feelings magnified by my own frustration with my passivity. I have become so keenly aware of how others feel that I have made myself tolerate what I know is wrong. The "mustn't offend" has overpowered the "I'm offended."
I dearly miss the cleansing fire of pure anger -- the certainty of knowing people should not say/act /perpetuate the things they do. There is a sense of self-worth inherent in the knowledge that another person is wrong, not based on superiority but on knowing humanity and individuals can and should do better. While I like myself more now than at any other time in my life, I am aware the clear flame of anger would add something I currently lack. Becoming a person filled with anger who lacks human compassion is not for me, but neither is this passive person I have become. Somehow I want to reclaim the good parts of that kick ass, take names woman of years ago while leaving the bitterness and self-hatred behind. I must temper indignation with compassion exercising grace and tact. As we all know, I have those two things in abundance. (Yes, that was sarcasm.)
Wednesday, October 28, 2009
What My Classmates Never Knew
Facebook was suppose to be a means to an ends – promoting this blog. Instead, as I've re-connected with people from my childhood, it has shown me new ways to look at familiar territory.
Growing up having so many reconstructive surgeries had a profound impact on me and for years I have been using words to articulate it. Recently I started pondering it from an outsider's perspective, especially my classmates from elementary and high school. Facebook allowed me to ask about their perspective which is when I discovered they were never given any explanations of my surgeries or my visual issues. From long experience, I know children have a multitude of questions. Now I have a voice and means to give long overdue answers.
I was born with midline facial birth defects, and while cleft palette and hare lip are the most common forms, I had different anomalies. I was born without a nose, nasal airway, some jaw issues, and eye structure abnormalities causing my sight problems. Nobody knows why I came out as I did. The most probable theory is that my father's exposure to Agent Orange in Vietnam played a role.
By preschool, I had already underwent two surgeries that resulted in a bump under the skin in the location of a nose. It looked nothing like a nose, but it was something in the expected place. Then, in kindergarten, they focused on my sight issues with two surgeries – one to remove my chronically infected tear sacs and the other to remove the cataract lens of my left eye. The second surgery was not successful, the eye almost died, and I lost any usable vision it offered.
In first grade, they returned to my face inserting a balloon expander under the skin where a nose usually resides. A tube led from it to a valve behind my ear into which they injected saline. Basically, they forced my body to grow tissue where it was needed – fill the balloon until my skin stretched tight, wait until the skin made more, then inject more fluid. At some point, my nose totally deflated because the tube between valve and balloon split and the liquid drained out. It was repaired and they proceeded with the process.
When they had the desired amount of skin, they took the expander out and put a hard piece of silicone in its place. I am a little bit fuzzy on this part. I believe they took out the silicone and replaced it with a piece of rib. (The part taken grows back.) I'm having trouble remembering because I had multiple rib grafts and can't keep when each happened straight. I do know they took cartilage grafts from each ear to shape nostrils.
The above series of surgeries took place within a year or two and there were a few other face-related operations between first and sixth grade, but I can't remember what happened when. And, honestly, I don't want to think about it all that hard.
First grade was a busy year for my body because they also operated on my left kneecap to keep it from moving when I bent my leg. I had a full-length leg cast for about 8 weeks and lots of leg scars thereafter.
Back to my sight issues for a moment. In kindergarten and first grade, I was taken out of class regularly to be taught Braille. Then, someone realized I could use a specific type of adaptive tech called a cctv. For those of you who did not become entirely too familiar with it throughout our years of school, whatever I wished to read or write was enlarged and shown on a TV-like monitor, so I could use the same textbooks etc as my classmates. My specialized teacher now came into the classroom to work with me, although we left for specific reasons every so often. She helped bridge the gap if the CCTV did not make a task possible as well as training me in using the equipment, teaching me to type (I started at age 9!), and working long and hard on my listening skills. Outside of class I received instruction in mobility techniques.
Now we can return to surgery. The balloon expander attempt to construct a nose was not totally successful, especially since I hit my face a few times. I think a few balls in gym also collided with me. So, at the end of sixth grade, they started a new process. I returned from surgery with a bandage around my upper left arm. They had taken the flesh on my inner arm and fashioned a sort of handle. Over a period of time, they severed the handle at the end near my armpit. Then, I disappeared for 4 weeks. They detached that end of the handle and sewed it to my face, so a tube of skin stretched from near my elbow to where a nose should be. Stayed like that for twelve days. Next they detached the tube from my arm. For a few days, I had a mini elephant trunk. This tissue was then shaped into a nose and a rib graft was done to provide structure. I did return for the last day of sixth grade and probably caused a stir. I know I did tell a few girls in my class about what was happening, but I don't know if they shared it with anybody else.
Because I grew up in a small town, most of my classmates started preschool with me and graduated high school at my side. They grew up with my visual impairment and facial issues as routine – it was just Jen. A few who moved to the area must have experienced a bit of shock. However, in seventh grade, our school merged with the next town and there was an infusion of new students. They had a different degree of exposure to my situation.
In junior high, there were only minor surgeries over school vacations. My sight remained stable until the end of eighth grade when my "good" eye hemorrhaged and I was excused from finals. Ninth and tenth grade were devoid of surgeries, though my eye hemorrhaged a couple more times.
Major change happened at the end of my junior year and I can only imagine what classmates who had only known me since seventh grade thought. Here's what happened. I took my SATs about a month before everyone else, then went off for surgery. There was a new doctor with new ideas one being a nasal airway. They drilled a hole through the bone of my face, inserted a tube, slid a balloon expander under my forehead skin and began filling it. This surgery left me extremely week, so I went back to school part time. I had a sausage-like bulge under the skin of my forehead and a tube sticking out of my face where a nose is expected. We put a cotton ball around the tube to protect the surrounding wound. I could not wear my glasses, so for the first time ever I used my cane at school. (Previously it only came out for Forensics tournaments at other schools.)
At one point, the school nurse who was the mother of one of my classmates called Mom telling her that her son had expressed concerns about me. I have no idea what was said in that conversation or what Mrs. Clive told her son. Truly, I had enough to worry about given the five state-wide tests I needed to take, my ever-growing forehead, and that horrible tube.
One memory sticks in my mind. I was in the library with my health class learning CPR. I stayed after to show my teacher what I had learned and another student was present. This kid was the one everyone teased in elementary school. In the process of bending over the dummy, the cotton ball slid off my tube onto the rug. I sort of stared at it, but this kid didn't hesitate simply picking it up and handing it to me. I have yet to lose my amazement that he had the cajones to do that especially since *I* didn't have what it took to handle it.
There were no more surgeries that school year, but a lot happened over the summer. Let's leave it that the tube came out, the grown tissue was slowly moved to where it was needed, and there was a rib graft. The nasal airway didn't work, I had some skin grafts to cover harvesting sites, and my scalp was moved around. Trust me when I say you do not want the specifics.
The last surgery in this series happened the first day of my senior year. When I did return to school, I looked different, including some hair issues and new extremely visible scarring. By the way, the nose constructed during this process is the one still on my face.
After graduation, I mostly did not have contact with my classmates. In case you are curious, there were two more surgeries. I had my jaw surgically broken and wired shut. I lost over ten percent of my body weight, had a tracheotomy, and could barely eat solid food when I started college. For spring break my sophomore year, I had one final operation for minor modifications. Then, Though they would have continued, I put an end to reconstructive efforts. Within the past ten years, some of the grafts and implants in my face have been removed due to chronic infections. Don't worry – I'm still recognizable by my curls and personality.
I went totally blind in 1996. My eye structure abnormalities conspired together to detach my retina and it was deemed beyond fixing. So, no more thick glasses for me.
I truly wish all of this had been explained while it was happening. I am certain it would have changed my primary school experience in countless ways. Silence creates more silence and discomfort fosters avoidance. It made it harder on all of us. As I think all of this through, I am reaching new and interesting conclusions which my over active mind loves.
If I have not answered all your questions, please feel free to leave them here as comments or use one of Facebook's multitudinous methods of contacting me. Ultimately I want this to be a conversation not a monologue. And, if you have kids, find out what they've always wanted to ask a disabled person. Might make for interesting dinner table discussion. Please pass them along.
Growing up having so many reconstructive surgeries had a profound impact on me and for years I have been using words to articulate it. Recently I started pondering it from an outsider's perspective, especially my classmates from elementary and high school. Facebook allowed me to ask about their perspective which is when I discovered they were never given any explanations of my surgeries or my visual issues. From long experience, I know children have a multitude of questions. Now I have a voice and means to give long overdue answers.
I was born with midline facial birth defects, and while cleft palette and hare lip are the most common forms, I had different anomalies. I was born without a nose, nasal airway, some jaw issues, and eye structure abnormalities causing my sight problems. Nobody knows why I came out as I did. The most probable theory is that my father's exposure to Agent Orange in Vietnam played a role.
By preschool, I had already underwent two surgeries that resulted in a bump under the skin in the location of a nose. It looked nothing like a nose, but it was something in the expected place. Then, in kindergarten, they focused on my sight issues with two surgeries – one to remove my chronically infected tear sacs and the other to remove the cataract lens of my left eye. The second surgery was not successful, the eye almost died, and I lost any usable vision it offered.
In first grade, they returned to my face inserting a balloon expander under the skin where a nose usually resides. A tube led from it to a valve behind my ear into which they injected saline. Basically, they forced my body to grow tissue where it was needed – fill the balloon until my skin stretched tight, wait until the skin made more, then inject more fluid. At some point, my nose totally deflated because the tube between valve and balloon split and the liquid drained out. It was repaired and they proceeded with the process.
When they had the desired amount of skin, they took the expander out and put a hard piece of silicone in its place. I am a little bit fuzzy on this part. I believe they took out the silicone and replaced it with a piece of rib. (The part taken grows back.) I'm having trouble remembering because I had multiple rib grafts and can't keep when each happened straight. I do know they took cartilage grafts from each ear to shape nostrils.
The above series of surgeries took place within a year or two and there were a few other face-related operations between first and sixth grade, but I can't remember what happened when. And, honestly, I don't want to think about it all that hard.
First grade was a busy year for my body because they also operated on my left kneecap to keep it from moving when I bent my leg. I had a full-length leg cast for about 8 weeks and lots of leg scars thereafter.
Back to my sight issues for a moment. In kindergarten and first grade, I was taken out of class regularly to be taught Braille. Then, someone realized I could use a specific type of adaptive tech called a cctv. For those of you who did not become entirely too familiar with it throughout our years of school, whatever I wished to read or write was enlarged and shown on a TV-like monitor, so I could use the same textbooks etc as my classmates. My specialized teacher now came into the classroom to work with me, although we left for specific reasons every so often. She helped bridge the gap if the CCTV did not make a task possible as well as training me in using the equipment, teaching me to type (I started at age 9!), and working long and hard on my listening skills. Outside of class I received instruction in mobility techniques.
Now we can return to surgery. The balloon expander attempt to construct a nose was not totally successful, especially since I hit my face a few times. I think a few balls in gym also collided with me. So, at the end of sixth grade, they started a new process. I returned from surgery with a bandage around my upper left arm. They had taken the flesh on my inner arm and fashioned a sort of handle. Over a period of time, they severed the handle at the end near my armpit. Then, I disappeared for 4 weeks. They detached that end of the handle and sewed it to my face, so a tube of skin stretched from near my elbow to where a nose should be. Stayed like that for twelve days. Next they detached the tube from my arm. For a few days, I had a mini elephant trunk. This tissue was then shaped into a nose and a rib graft was done to provide structure. I did return for the last day of sixth grade and probably caused a stir. I know I did tell a few girls in my class about what was happening, but I don't know if they shared it with anybody else.
Because I grew up in a small town, most of my classmates started preschool with me and graduated high school at my side. They grew up with my visual impairment and facial issues as routine – it was just Jen. A few who moved to the area must have experienced a bit of shock. However, in seventh grade, our school merged with the next town and there was an infusion of new students. They had a different degree of exposure to my situation.
In junior high, there were only minor surgeries over school vacations. My sight remained stable until the end of eighth grade when my "good" eye hemorrhaged and I was excused from finals. Ninth and tenth grade were devoid of surgeries, though my eye hemorrhaged a couple more times.
Major change happened at the end of my junior year and I can only imagine what classmates who had only known me since seventh grade thought. Here's what happened. I took my SATs about a month before everyone else, then went off for surgery. There was a new doctor with new ideas one being a nasal airway. They drilled a hole through the bone of my face, inserted a tube, slid a balloon expander under my forehead skin and began filling it. This surgery left me extremely week, so I went back to school part time. I had a sausage-like bulge under the skin of my forehead and a tube sticking out of my face where a nose is expected. We put a cotton ball around the tube to protect the surrounding wound. I could not wear my glasses, so for the first time ever I used my cane at school. (Previously it only came out for Forensics tournaments at other schools.)
At one point, the school nurse who was the mother of one of my classmates called Mom telling her that her son had expressed concerns about me. I have no idea what was said in that conversation or what Mrs. Clive told her son. Truly, I had enough to worry about given the five state-wide tests I needed to take, my ever-growing forehead, and that horrible tube.
One memory sticks in my mind. I was in the library with my health class learning CPR. I stayed after to show my teacher what I had learned and another student was present. This kid was the one everyone teased in elementary school. In the process of bending over the dummy, the cotton ball slid off my tube onto the rug. I sort of stared at it, but this kid didn't hesitate simply picking it up and handing it to me. I have yet to lose my amazement that he had the cajones to do that especially since *I* didn't have what it took to handle it.
There were no more surgeries that school year, but a lot happened over the summer. Let's leave it that the tube came out, the grown tissue was slowly moved to where it was needed, and there was a rib graft. The nasal airway didn't work, I had some skin grafts to cover harvesting sites, and my scalp was moved around. Trust me when I say you do not want the specifics.
The last surgery in this series happened the first day of my senior year. When I did return to school, I looked different, including some hair issues and new extremely visible scarring. By the way, the nose constructed during this process is the one still on my face.
After graduation, I mostly did not have contact with my classmates. In case you are curious, there were two more surgeries. I had my jaw surgically broken and wired shut. I lost over ten percent of my body weight, had a tracheotomy, and could barely eat solid food when I started college. For spring break my sophomore year, I had one final operation for minor modifications. Then, Though they would have continued, I put an end to reconstructive efforts. Within the past ten years, some of the grafts and implants in my face have been removed due to chronic infections. Don't worry – I'm still recognizable by my curls and personality.
I went totally blind in 1996. My eye structure abnormalities conspired together to detach my retina and it was deemed beyond fixing. So, no more thick glasses for me.
I truly wish all of this had been explained while it was happening. I am certain it would have changed my primary school experience in countless ways. Silence creates more silence and discomfort fosters avoidance. It made it harder on all of us. As I think all of this through, I am reaching new and interesting conclusions which my over active mind loves.
If I have not answered all your questions, please feel free to leave them here as comments or use one of Facebook's multitudinous methods of contacting me. Ultimately I want this to be a conversation not a monologue. And, if you have kids, find out what they've always wanted to ask a disabled person. Might make for interesting dinner table discussion. Please pass them along.
Wednesday, October 21, 2009
Why I Feel How I Feel
Yeah, yeah, I know the title is pretty much the topic of every entry, but this weekend I had a revelation. The duo Ryanhood mentioned in the previous post performed in San Diego and I was fortunate to catch the second half of their set. Afterward I had nice conversations with both Ryan and Cameron. On my walk home, I tried to understand why their manner toward me is comfortable whilst others make me want to squirm. This is not the first time I have tried to dissect another's demeanor and behavior, but it is the first time I actually found a way to explain it that might make sense to TABs.
I believe people's approaches can be categorized using the following areas:
1. level of pity
2. degree of amazement
3. amount of respect shown
4. how the person seems to think about my difference
5. how the person handles it when my difference becomes relevant
Pity should never be confused with empathy. In the latter, the focus is on how the individual feels about their own situation whereas the former centers around how a person emotionally responds to another's circumstances. Pity is based on perception, thus personal beliefs and assumptions come into play. With me, often a person feels worse about my supposed plight than I do. It is exhibited in phrases like, "Your life must be so hard," "It's such a shame," or simply use of the word suffering.
I think amazement comes from a similar mental process because people think about what they believe they could do if disabled like me and use that yardstick to judge my achievements. Examples include: "I can't believe you baked that," "I couldn't do that if I were," or even a lavish compliment for an every day task.
I do not possess the words to describe respect, but I know it when I see it. Think of the difference between how people treat an adult versus a five year old. There is a tacit belief that an adult can do basic grown up tasks unless evidence emerges that proves otherwise. We do not assume five year olds can cross a street alone, ride the bus without an adult, or order a meal. There are times when I am treated more like that five year old than a mature woman. Of course if I am obviously trying to do something and not managing it, it is not a matter of respect if somebody offers assistance. However, if I decline the help and they question me – "Are you really sure you can do that?" -- it then boils down to respect.
The fourth item on my list can best be illustrated with cats and dogs. Does the person consider one of us a cat and the other a dog or do they consider us different breeds of the same species? In other words, is our difference or our similarity more relevant to them? People who find our difference more salient will often have difficulty finding conversational common ground with an awkward or nervous demeanor. Those who consider our similarities as more germane behave in a natural manner as they would around any other person. Obviously some people are ill-at-ease around anyone which I like to think I can discern reliably.
Finally, if my disability becomes relevant, people handle it in a variety of ways. For example, in illustrating a conversational point, some people will gesture and supply enough words to convey meaning without missing a beat. They do not stop and say, "Oh, Jen, I just did thus and so." My difference never becomes apparent to anyone, but I am also not left feeling different because I cannot follow the conversation. On the other hand, there are people who say the word "see" around me and start apologizing. That makes my difference apparent to me and everyone else in earshot. (Actually, I use the word see along with watch and read telling people it is a matter of using common vernacular, but it is probably more about not highlighting my difference.)
I suspect you can all guess at how I like to be treated– no pity, amazement only at things amazing for any human to achieve, respect due any adult human, similarities more salient than difference, and my disability-related needs being taken into account without disruption. Cameron, Ryan, and people like them allow me to feel comfortable because they obviously do not feel uncomfortable. We are simply equals having a conversation.
I could end here, but one point needs to be made crystal clear. Not every person knows exactly what to do or say. Lack of experience is not a crime for which anyone should be judged. I suppose my list really should have a sixth item – how lack of knowing what to do is handled. Treating it in a matter-of-fact way such as asking a question the way you would ask for the potatoes to be passed is one approach. Another technique might be to give a long preamble about how you don't know how to ask something followed by a question that avoids using the word blind by performing conversational gymnastics. The words used to ask a question are not nearly as important as whether or not my disability is treated like a taboo subject.
I have read through this multiple times and have determined I rather sound like a judgmental jerk. My promise of unflinching honesty prevents me from deleting this. However, I think the criteria are actually a very simple way to summarize a complex set of behaviors that result in me feeling one way or another. For those of you uncertain about what to say or do around a disabled person, maybe they will give you a few useful guidelines.
I believe people's approaches can be categorized using the following areas:
1. level of pity
2. degree of amazement
3. amount of respect shown
4. how the person seems to think about my difference
5. how the person handles it when my difference becomes relevant
Pity should never be confused with empathy. In the latter, the focus is on how the individual feels about their own situation whereas the former centers around how a person emotionally responds to another's circumstances. Pity is based on perception, thus personal beliefs and assumptions come into play. With me, often a person feels worse about my supposed plight than I do. It is exhibited in phrases like, "Your life must be so hard," "It's such a shame," or simply use of the word suffering.
I think amazement comes from a similar mental process because people think about what they believe they could do if disabled like me and use that yardstick to judge my achievements. Examples include: "I can't believe you baked that," "I couldn't do that if I were," or even a lavish compliment for an every day task.
I do not possess the words to describe respect, but I know it when I see it. Think of the difference between how people treat an adult versus a five year old. There is a tacit belief that an adult can do basic grown up tasks unless evidence emerges that proves otherwise. We do not assume five year olds can cross a street alone, ride the bus without an adult, or order a meal. There are times when I am treated more like that five year old than a mature woman. Of course if I am obviously trying to do something and not managing it, it is not a matter of respect if somebody offers assistance. However, if I decline the help and they question me – "Are you really sure you can do that?" -- it then boils down to respect.
The fourth item on my list can best be illustrated with cats and dogs. Does the person consider one of us a cat and the other a dog or do they consider us different breeds of the same species? In other words, is our difference or our similarity more relevant to them? People who find our difference more salient will often have difficulty finding conversational common ground with an awkward or nervous demeanor. Those who consider our similarities as more germane behave in a natural manner as they would around any other person. Obviously some people are ill-at-ease around anyone which I like to think I can discern reliably.
Finally, if my disability becomes relevant, people handle it in a variety of ways. For example, in illustrating a conversational point, some people will gesture and supply enough words to convey meaning without missing a beat. They do not stop and say, "Oh, Jen, I just did thus and so." My difference never becomes apparent to anyone, but I am also not left feeling different because I cannot follow the conversation. On the other hand, there are people who say the word "see" around me and start apologizing. That makes my difference apparent to me and everyone else in earshot. (Actually, I use the word see along with watch and read telling people it is a matter of using common vernacular, but it is probably more about not highlighting my difference.)
I suspect you can all guess at how I like to be treated– no pity, amazement only at things amazing for any human to achieve, respect due any adult human, similarities more salient than difference, and my disability-related needs being taken into account without disruption. Cameron, Ryan, and people like them allow me to feel comfortable because they obviously do not feel uncomfortable. We are simply equals having a conversation.
I could end here, but one point needs to be made crystal clear. Not every person knows exactly what to do or say. Lack of experience is not a crime for which anyone should be judged. I suppose my list really should have a sixth item – how lack of knowing what to do is handled. Treating it in a matter-of-fact way such as asking a question the way you would ask for the potatoes to be passed is one approach. Another technique might be to give a long preamble about how you don't know how to ask something followed by a question that avoids using the word blind by performing conversational gymnastics. The words used to ask a question are not nearly as important as whether or not my disability is treated like a taboo subject.
I have read through this multiple times and have determined I rather sound like a judgmental jerk. My promise of unflinching honesty prevents me from deleting this. However, I think the criteria are actually a very simple way to summarize a complex set of behaviors that result in me feeling one way or another. For those of you uncertain about what to say or do around a disabled person, maybe they will give you a few useful guidelines.
Wednesday, October 14, 2009
Blindness Can Be Funny
I don't know about you, but I'm in need of some serious levity. And, yes, that is an oxymoron, but you get the idea. This month? The things that happen only because I'm blind.
My grandparent's home is on a lake and as a child, I spent a good portion of my summers there with my sisters and cousins. Except for my grandmother, everyone water-skied. Because of my various reconstructive surgeries, I was forced to wait until the ripe age of eight to learn. To give you perspective, I believe that one cousin was maybe four when she tried it.
For any of you not familiar with the sport, beginners usually learn from the water, squatting in position using the pull of the boat to get up. Only experts stand upright on the dock and jump into the water. Intermediates sit on the edge of the dock and go from there. I will never progress past intermediate.
On my maiden voyage, I went through the routine familiar from enviously watching others do it: I put on my life-vest, wedged my feet into skis, and slid off the dock into the water. I was taught how to crouch so my skis were at an incline with the water's surface, tips pointed upward legs bent so my backside more or less rested on the skis. Then, they gave me a handle attached to the rope and put enough tension on it so I didn't lose my careful positioning. Someone on the boat then yelled, "Hit it!" and we took off.
I let the boat pull me up, just as instructed. Usually, people fall multiple times before reaching this point, so I was very pleased as the boat towed me in a circle. When we neared the dock, the boat honked and I let go sailing over the water toward shore, very proud of myself.
"Jen, didn't you hear us?" everyone on the dock asked.
"No."
"You needed to stand up!"
"What?"
"You don't go around squatting like that. You stand."
"Oh."
I thought being pulled up by the boat meant pulled into a squatting position when the actual objective is standing. Once I tried standing, I fell tons. Actually, I still do, thus the never progressing past intermediate thing.
The above happened simply because I didn't understand a key part of the activity. At other times, my blindness combines with my "I must be right" attitude in amusing ways.
After I developed multiple food intolerances, by necessity I learned how to cook. At the time, the people I knew didn't cook much, so I was impressive in comparison. One friend who stayed with me loved my curried sweet potatoes, so while I was making dinner, I told her the recipe and she wrote it down. One of the ingredients is curry powder, but that can be a widely variable spice from brand to brand and source to source. I reached for the type I was using and suggested she look at the ingredients in order to find an equivalent version.
"Jen, she said, this isn't curry."
"Yes it is," I replied.
"No, it's Cajon seasoning."
"No, the Braille right here says curry."
"And yet the print says Cajon."
Ooops. Now we call them Cajon sweet potatoes. They are still tasty.
When you think about it, it is rather ridiculous that I discount what eyes perceive to the point that I assume the other person is wrong. Here's one final instance.
I was flopped across my couch on my stomach, head pillowed on my arms while my friend occupied the comfy blue chair. At some point in our conversation, she glanced over at the end-table and said, "Ryan's totally hot."
"Huh?"
"This musician on the Ryanhood CD is hot."
"No, you mean Cameron. The group is Ryan Green and Cameron Hood."
"No, I mean Ryan."
"Trust me. Cameron's the hot one."
"He's labeled Ryan on the CD."
"Oh."
From multiple Ryanhood concerts, I had a very vivid impression of both musicians. I took this as a better indication of physical attractiveness than the observations of a sighted person who could actually see the pictures. This is akin to the times when I find out things about my friend's appearance, like their hair color. If it doesn't fit the mental image my mind has constructed of the person, I am totally disconcerted.
I suppose I have just made an excellent argument for me being convinced of my rightness beyond all reason. Somebody will use it against me sooner or later. That really shouldn't be allowed – a violation of the fair fight rules. "Thou shalt not use a blog entry to disprove its author."
My grandparent's home is on a lake and as a child, I spent a good portion of my summers there with my sisters and cousins. Except for my grandmother, everyone water-skied. Because of my various reconstructive surgeries, I was forced to wait until the ripe age of eight to learn. To give you perspective, I believe that one cousin was maybe four when she tried it.
For any of you not familiar with the sport, beginners usually learn from the water, squatting in position using the pull of the boat to get up. Only experts stand upright on the dock and jump into the water. Intermediates sit on the edge of the dock and go from there. I will never progress past intermediate.
On my maiden voyage, I went through the routine familiar from enviously watching others do it: I put on my life-vest, wedged my feet into skis, and slid off the dock into the water. I was taught how to crouch so my skis were at an incline with the water's surface, tips pointed upward legs bent so my backside more or less rested on the skis. Then, they gave me a handle attached to the rope and put enough tension on it so I didn't lose my careful positioning. Someone on the boat then yelled, "Hit it!" and we took off.
I let the boat pull me up, just as instructed. Usually, people fall multiple times before reaching this point, so I was very pleased as the boat towed me in a circle. When we neared the dock, the boat honked and I let go sailing over the water toward shore, very proud of myself.
"Jen, didn't you hear us?" everyone on the dock asked.
"No."
"You needed to stand up!"
"What?"
"You don't go around squatting like that. You stand."
"Oh."
I thought being pulled up by the boat meant pulled into a squatting position when the actual objective is standing. Once I tried standing, I fell tons. Actually, I still do, thus the never progressing past intermediate thing.
The above happened simply because I didn't understand a key part of the activity. At other times, my blindness combines with my "I must be right" attitude in amusing ways.
After I developed multiple food intolerances, by necessity I learned how to cook. At the time, the people I knew didn't cook much, so I was impressive in comparison. One friend who stayed with me loved my curried sweet potatoes, so while I was making dinner, I told her the recipe and she wrote it down. One of the ingredients is curry powder, but that can be a widely variable spice from brand to brand and source to source. I reached for the type I was using and suggested she look at the ingredients in order to find an equivalent version.
"Jen, she said, this isn't curry."
"Yes it is," I replied.
"No, it's Cajon seasoning."
"No, the Braille right here says curry."
"And yet the print says Cajon."
Ooops. Now we call them Cajon sweet potatoes. They are still tasty.
When you think about it, it is rather ridiculous that I discount what eyes perceive to the point that I assume the other person is wrong. Here's one final instance.
I was flopped across my couch on my stomach, head pillowed on my arms while my friend occupied the comfy blue chair. At some point in our conversation, she glanced over at the end-table and said, "Ryan's totally hot."
"Huh?"
"This musician on the Ryanhood CD is hot."
"No, you mean Cameron. The group is Ryan Green and Cameron Hood."
"No, I mean Ryan."
"Trust me. Cameron's the hot one."
"He's labeled Ryan on the CD."
"Oh."
From multiple Ryanhood concerts, I had a very vivid impression of both musicians. I took this as a better indication of physical attractiveness than the observations of a sighted person who could actually see the pictures. This is akin to the times when I find out things about my friend's appearance, like their hair color. If it doesn't fit the mental image my mind has constructed of the person, I am totally disconcerted.
I suppose I have just made an excellent argument for me being convinced of my rightness beyond all reason. Somebody will use it against me sooner or later. That really shouldn't be allowed – a violation of the fair fight rules. "Thou shalt not use a blog entry to disprove its author."
Wednesday, October 7, 2009
Our Sibling Keepers
Last week's entry and the resulting comments caused me to reflect upon the brothers and sisters of disabled people. It dawned on me that many may not know about or have considered the position our siblings are in whether they like it or not.
Our friends have on some level made a choice that we the disabled person are well worth the extra effort they must sometimes expend on our behalf. Our siblings have no choice about any of it. They are drafted and service lasts a lifetime.
When a disabled child enters a family, it requires extra time and effort from the parents who must go to doctors appointments, find time for physical therapy, deal with school systems, and generally learn how to help and care for their child. By necessity, as it was in my case, a disproportionate amount of time and effort often must be spent on the disabled child. For example, whenever I had surgery, Mom came with me and stayed at the distant hospital the entire time. This meant my grandparents stayed with my sisters. I also received gifts whenever I was hospitalized, didn't have to do certain chores, and received extra attention.
While my older sister seemingly understood the situation, my younger sister had problems which is completely reasonable in my opinion. She took her frustration out on my mother by acting out. It was lousy for everybody, but there was no solution to the state of affairs..
Disabled kids eventually become disabled adults. While their mature siblings are better equipped to understand the situation, new and complex issues emerge. The disproportionate attention parents must give the disabled sibling might not change in adulthood. Furthermore, when the parents become too old to provide the needed assistance, it falls upon the nondisabled siblings to help.. While you might think our social welfare system would fill in the gap, the reality is that without support from friends and family, disabled people often have a lower quality of life. Anything more than simple physical existence requires the support of family of some sort. That burden could fall on the shoulders of a spouse, but we are less likely to marry. So, our brothers and sisters must take up where parents leave off.
In addition, there are financial considerations. Any disabled adult eking out an existence on Social Security and other such programs can receive certain kinds of monetary help from others as long as it does not involve food, clothing, or shelter. When our parents die, if we directly inherit something, it could well make us ineligible for those forms of support. Most parents of a disabled child set up a specific type of trust and appoint someone to administer it. Unless you want to pay for that oversight, you appoint a sibling. To add to the complexity, parents might decide to leave more to their disabled child based on the reality that we often need more financial support. All this places more responsibility on the nondisabled siblings and can foster resentment. In addition, having one sibling control the financial status of another can be an emotional minefield.
All of this has largely gone without mention by either me or my sisters. Personally, I do not want to know if they consider their future obligations to be onerous. I also do not want to shed any light on my fears that their lives and families will prevent them from giving me the help I might need. Besides, I feel immense guilt even considering asking my sisters for aid now and avoid imagining what it might be like in the distant future.
I am certain both have discussed me with their respective spouses and consideration has been given to what it might mean for their families once my parents pass on. Our society still considers the family the first line of help and support in this arena. If I happen to have a life partner, everyone will assume that person takes on primary responsibility for me freeing my sisters. However, if I'm single and my sisters want me to have more than a subsistence quality of life, they will have to take on those responsibilities.
In writing this entry, I have gained a new appreciation for the depth and extent of the burden our society places upon the siblings of a disabled person. And, should a sibling object to these obligations, social sanction is high. I grant you assuming the responsibilities does result in social kudos. After all, if my friends are nominated to sainthood for being in my company, can you imagine what some will think of my sisters? Still, I personally think our siblings are in a lousy position. I try to appreciate what mine do for me and not ask for much.
In fact, I ask more of my friends. As with many people of my generation, my friends form a different sort of family – what many call a chosen family. I turn to mine regularly for a vast array of things. While I try to do things in return, cookies can't exactly compensate for weekly rides to yoga or being dragged for a walk by my obstinate dog.
I know I should stop thinking of myself as a burden instead embracing the notion that the people in my life are lucky to have me and what I bring to any relationship is well worth any extra effort. Haven't managed it, though.
Oddly enough, after starting this entry, I discovered on Friday Hallmark is showing "Riding the Bus with My sister." This movie explores the complexity of issues within a sibling relationship when one is disabled. If memory serves, they did a pretty good job of it.
Our friends have on some level made a choice that we the disabled person are well worth the extra effort they must sometimes expend on our behalf. Our siblings have no choice about any of it. They are drafted and service lasts a lifetime.
When a disabled child enters a family, it requires extra time and effort from the parents who must go to doctors appointments, find time for physical therapy, deal with school systems, and generally learn how to help and care for their child. By necessity, as it was in my case, a disproportionate amount of time and effort often must be spent on the disabled child. For example, whenever I had surgery, Mom came with me and stayed at the distant hospital the entire time. This meant my grandparents stayed with my sisters. I also received gifts whenever I was hospitalized, didn't have to do certain chores, and received extra attention.
While my older sister seemingly understood the situation, my younger sister had problems which is completely reasonable in my opinion. She took her frustration out on my mother by acting out. It was lousy for everybody, but there was no solution to the state of affairs..
Disabled kids eventually become disabled adults. While their mature siblings are better equipped to understand the situation, new and complex issues emerge. The disproportionate attention parents must give the disabled sibling might not change in adulthood. Furthermore, when the parents become too old to provide the needed assistance, it falls upon the nondisabled siblings to help.. While you might think our social welfare system would fill in the gap, the reality is that without support from friends and family, disabled people often have a lower quality of life. Anything more than simple physical existence requires the support of family of some sort. That burden could fall on the shoulders of a spouse, but we are less likely to marry. So, our brothers and sisters must take up where parents leave off.
In addition, there are financial considerations. Any disabled adult eking out an existence on Social Security and other such programs can receive certain kinds of monetary help from others as long as it does not involve food, clothing, or shelter. When our parents die, if we directly inherit something, it could well make us ineligible for those forms of support. Most parents of a disabled child set up a specific type of trust and appoint someone to administer it. Unless you want to pay for that oversight, you appoint a sibling. To add to the complexity, parents might decide to leave more to their disabled child based on the reality that we often need more financial support. All this places more responsibility on the nondisabled siblings and can foster resentment. In addition, having one sibling control the financial status of another can be an emotional minefield.
All of this has largely gone without mention by either me or my sisters. Personally, I do not want to know if they consider their future obligations to be onerous. I also do not want to shed any light on my fears that their lives and families will prevent them from giving me the help I might need. Besides, I feel immense guilt even considering asking my sisters for aid now and avoid imagining what it might be like in the distant future.
I am certain both have discussed me with their respective spouses and consideration has been given to what it might mean for their families once my parents pass on. Our society still considers the family the first line of help and support in this arena. If I happen to have a life partner, everyone will assume that person takes on primary responsibility for me freeing my sisters. However, if I'm single and my sisters want me to have more than a subsistence quality of life, they will have to take on those responsibilities.
In writing this entry, I have gained a new appreciation for the depth and extent of the burden our society places upon the siblings of a disabled person. And, should a sibling object to these obligations, social sanction is high. I grant you assuming the responsibilities does result in social kudos. After all, if my friends are nominated to sainthood for being in my company, can you imagine what some will think of my sisters? Still, I personally think our siblings are in a lousy position. I try to appreciate what mine do for me and not ask for much.
In fact, I ask more of my friends. As with many people of my generation, my friends form a different sort of family – what many call a chosen family. I turn to mine regularly for a vast array of things. While I try to do things in return, cookies can't exactly compensate for weekly rides to yoga or being dragged for a walk by my obstinate dog.
I know I should stop thinking of myself as a burden instead embracing the notion that the people in my life are lucky to have me and what I bring to any relationship is well worth any extra effort. Haven't managed it, though.
Oddly enough, after starting this entry, I discovered on Friday Hallmark is showing "Riding the Bus with My sister." This movie explores the complexity of issues within a sibling relationship when one is disabled. If memory serves, they did a pretty good job of it.
Wednesday, September 30, 2009
Is Approach more Important than Act?
I have been editing my novel manuscript for the zillionth time and came across an observation by my female protagonist that applies to me. When it comes to help, I will accept from friends what I will not accept from family making me a hypocrite. I thought it might be a refreshing change to delve into one of my many flaws. I am sure rationalizations of my behavior will abound.
First, how about some examples which for the sake of simplicity, I will limit to the period I've been totally blind – about thirteen years. One summer, I was standing before a cutting board with a roasted turkey breast upon it and a sharp knife in my hand when my grandmother came into the kitchen. "Oh, Jen, let me slice that."
"No thanks, Grandma, I got it."
"It will just take me a minute."
"No, Grandma, it's fine. Besides, who do you think does this sort of thing when I'm alone in my apartment?"
"Oh, I don't know how you live by yourself. It's so amazing."
On the other hand, if one of my meat-eating friends happened to walk into the kitchen while I was hacking at a turkey breast, I might actually say, "Hey, you do this. I'm going to make a mess of it."
Now let us move to the realm of navigation. When I first lost my sight, my family was rather insistent that I travel sighted guide. I was equally insistent I go it alone. Drove my family nuts. My friends were much more flexible about this. In fact, to this day friends from that period are the only people able to guide me by words alone without me harming myself.
After a time, I went sighted guide with my friends when it was practical and my choice. Nobody ever insisted, although sometimes they explained the current challenge so I could make an informed choice. It has not been until recently that I have willingly and without resentment taken the elbow of a member of my family.
My sisters are very fashion-conscious and have taken it upon themselves to advise me about what I wear. I have been known to ask for such input, but mostly it is unsolicited. Since we have very different goals – I want it to feel good on me and they want it to look good on me – there is often conflict. The phrase, "But, Jen, we can see what looks good and you can't," has been uttered countless times. Frustration is felt by everyone involved. In the past two years, one has mostly given up and the other has taken a new approach which probably involves a lot of eye rolling, but see no eye rolls know no eye rolls.
On the other hand, I ask my friends how things look all the time. In fact, last summer we went through my entire closet and if the two advising people said "get rid of it," I chose to heed the advice. I don't think I have actually bought a piece of clothing that feels uncomfortable to wear, but on friend's advice I have bought out of my style comfort zone multiple times.
So, the question at hand is this: If the act is the same, does the helper's approach to it truly matter? Since I am on the receiving end of the act packaged with the approach, I cannot be completely objective. There is only one category of situation where I could care less about how aid is given. Last summer, I started across a street only to be grabbed by a man and pulled back. It was inelegant and without warning, but saved me from becoming road pizza. I will forego critiquing approach if it keeps me safe.
Now watch as the justification of my hypocrisy unfolds. Usually, approach matters to me for like most I prefer being treated respectfully. Among other things, this includes not being pushed into letting someone do what I am already doing, choices not being forced upon me, and my opinion not being dismissed as less worthy of consideration. I don't think the fact that I need the aid means I must take the help however it is given. Perhaps family dynamics play a role in making me feel less comfortable with their approach. Possibly I am ungrateful. Certainly I am defying the expression "beggars can't be choosers." Whatever the case, unlike Machiavelli, I do not think the ends justifies the means, unless it is a situation of avoiding bodily harm. Then "save me" always supersedes "respect me."
I believe this makes me a hypocrite. After all, my family is simply trying to help and what I see as lacking in respect is not meant that way. Shouldn't I take needed help and put my pride and ego aside? Don't their good intentions count for anything? Shouldn't I appreciate more and judge less?
The reality is that I can live with the hypocrisy far better than I can live with approaches that don't feel respectful. At its route, this is my choice and I own it though not exactly pridefully. If I could wave a magic wand and always be helped in ways that I like, my hypocrisy would vanish. Then again, if I had that magic wand I'd just wave it and the thing needing help would be accomplished in a puff of smoke.
First, how about some examples which for the sake of simplicity, I will limit to the period I've been totally blind – about thirteen years. One summer, I was standing before a cutting board with a roasted turkey breast upon it and a sharp knife in my hand when my grandmother came into the kitchen. "Oh, Jen, let me slice that."
"No thanks, Grandma, I got it."
"It will just take me a minute."
"No, Grandma, it's fine. Besides, who do you think does this sort of thing when I'm alone in my apartment?"
"Oh, I don't know how you live by yourself. It's so amazing."
On the other hand, if one of my meat-eating friends happened to walk into the kitchen while I was hacking at a turkey breast, I might actually say, "Hey, you do this. I'm going to make a mess of it."
Now let us move to the realm of navigation. When I first lost my sight, my family was rather insistent that I travel sighted guide. I was equally insistent I go it alone. Drove my family nuts. My friends were much more flexible about this. In fact, to this day friends from that period are the only people able to guide me by words alone without me harming myself.
After a time, I went sighted guide with my friends when it was practical and my choice. Nobody ever insisted, although sometimes they explained the current challenge so I could make an informed choice. It has not been until recently that I have willingly and without resentment taken the elbow of a member of my family.
My sisters are very fashion-conscious and have taken it upon themselves to advise me about what I wear. I have been known to ask for such input, but mostly it is unsolicited. Since we have very different goals – I want it to feel good on me and they want it to look good on me – there is often conflict. The phrase, "But, Jen, we can see what looks good and you can't," has been uttered countless times. Frustration is felt by everyone involved. In the past two years, one has mostly given up and the other has taken a new approach which probably involves a lot of eye rolling, but see no eye rolls know no eye rolls.
On the other hand, I ask my friends how things look all the time. In fact, last summer we went through my entire closet and if the two advising people said "get rid of it," I chose to heed the advice. I don't think I have actually bought a piece of clothing that feels uncomfortable to wear, but on friend's advice I have bought out of my style comfort zone multiple times.
So, the question at hand is this: If the act is the same, does the helper's approach to it truly matter? Since I am on the receiving end of the act packaged with the approach, I cannot be completely objective. There is only one category of situation where I could care less about how aid is given. Last summer, I started across a street only to be grabbed by a man and pulled back. It was inelegant and without warning, but saved me from becoming road pizza. I will forego critiquing approach if it keeps me safe.
Now watch as the justification of my hypocrisy unfolds. Usually, approach matters to me for like most I prefer being treated respectfully. Among other things, this includes not being pushed into letting someone do what I am already doing, choices not being forced upon me, and my opinion not being dismissed as less worthy of consideration. I don't think the fact that I need the aid means I must take the help however it is given. Perhaps family dynamics play a role in making me feel less comfortable with their approach. Possibly I am ungrateful. Certainly I am defying the expression "beggars can't be choosers." Whatever the case, unlike Machiavelli, I do not think the ends justifies the means, unless it is a situation of avoiding bodily harm. Then "save me" always supersedes "respect me."
I believe this makes me a hypocrite. After all, my family is simply trying to help and what I see as lacking in respect is not meant that way. Shouldn't I take needed help and put my pride and ego aside? Don't their good intentions count for anything? Shouldn't I appreciate more and judge less?
The reality is that I can live with the hypocrisy far better than I can live with approaches that don't feel respectful. At its route, this is my choice and I own it though not exactly pridefully. If I could wave a magic wand and always be helped in ways that I like, my hypocrisy would vanish. Then again, if I had that magic wand I'd just wave it and the thing needing help would be accomplished in a puff of smoke.
Wednesday, September 23, 2009
Multiply Chronic Illness by the Power of Two
If you don't get the title reference, it comes from one of my favorite Indigo Girls' songs containing the line "Multiply life by the power of two," which refers to how life alters when you are part of a couple.
When I launched this blog, I promised myself and my readers to be brutally honest about my feelings. An entry has been within me for quite some time that I have avoided writing because it would be emotionally painful. I recently realized that what I find so hard to say might be the most worth saying, so I am forcing myself to do this.
This entry is all about chronic illness, trust, and relationships. For quite a few years, I haven't dated let alone paired up with somebody. 2009 seems to be The Year of Crushes and has brought a lot of issues to the surface. Living with a chronic illness is one thing, but contemplating somebody else sharing it with me is another thing entirely.
First, let me make something clear: I am scared in every fiber of my being that the health I have attained will vanish into thin air. Who knows why everything came together to cause a shift toward energy, so who knows what will cause a change in the other direction. One false move on my part might just shatter everything I've built over the past 3 years. Gone in a puff of smoke. With an unknown return date. AT my sickest, I never planned for things to get better just dealt with the reality before me. Now I try to do the same, but I was much more successful at avoiding hope than I have been at squelching fear. I'm faking acceptance right now wishing for it to become how I feel.
All these crushes have spurred me to contemplate what happens when you toss an unsuspecting person into the mix. Even after eighteen years with this illness, I am still struggling, so what is going to happen to the uninitiated? I don't have and wouldn't want the kind of heart that simply shuns romantic attraction to avoid the complications of another sharing my life and therefore my situation. This means I have to consider many other things that engender fear.
A large part of the terror comes from somebody finding out what my life is really like. People typically meet me when I'm out being active, but that is only a fraction of how I spend my time. For the most part, I keep myself entertained with books, television, craft projects, the never-ending task of feeding myself, and thinking. None of this is particularly interesting or worthy of comment. On a bad day where I spend most of the day on the couch there is even less done. On a regular basis , my body is doing something ridiculous such as hurting in a new way, getting infected in a random part, or deciding it hates what I have been feeding it with gastro-intestinal distress as its means of expression. So, not only do I have nothing interesting happening for long periods of time but the events of note quite frequently aren't topics for casual conversation.
I never know how to answer the routine question, "How are you?" The more complicated "What have you been up do?" is even worse. I never know who wants honesty and if they can understand the truth from the perspective of my reality. My answer to either question might be something like, "Well, I feel like a truck ran over me. The good news is that it didn't back up and try it again. I've read a trashy novel, managed to eat, and took a nap." That might be fine to tell somebody once in a while, but as a regular response it quickly gets old to say let alone hear. I become a boring, dull person who is seemingly always whining.
By their nature, romantic prospects become more entangled in your life because of the time spent together, activities shared, and waking up in the same bed. What can be glossed over with a "Today has been a bit challenging" cannot be concealed if they were present when you tried to get out of bed and didn't quite make it.
My chronic illness also effects my mood. It is hard to stay positive when it hurts to open a jar of applesauce that you really need to eat because it is all you can swallow at the moment. I get upset, frustrated, discouraged, and generally pissed off. I am not always perky, playful, clever me. I can be the woman crying on her kitchen floor because she can't figure out where she put the lid to the ketchup. In addition, one of the fun traits of this illness is depression as a symptom not just a reasonable emotional state based on circumstances. So, at times my mood is horrible no matter what I or anyone else says or does.
While creative management of circumstances can hide a lot, is that such a good idea? Somebody who wants to become a part of my life really needs to know what that entails. However, the reality is frightening to the uninitiated. I find myself simultaneously wanting to describe the worst possible circumstances in brutal detail and hide everything with a smile and clever turn of phrase. Even in this entry I find myself giving examples and descriptions that paint a grimmer picture than what I am currently experiencing. I don't want anyone, myself included, to forget how bad it can become. At the same time I am attempting to be upbeat and clever in the way I express my concerns and feelings.
My last long-term relationship partly imploded because of my chronic illness's out of control downward spiral. While it was not one of the top three causes, it played a role. As previously mentioned, I live in fear that the health I have gained will disappear. I am not certain I can handle it happening. How on earth can I know if a significant other can take it? There is no real way to know until it actually occurs meaning a relationship might fall to pieces right after my health falls to pieces. That possibility... Sheer terror.
Though my chronic illness has taught me much, I cannot be certain I would wish it upon myself in hindsight. I do know I would vote for it vanishing into thin air if I could plan my own future. How can I ask somebody to jump into a mess I'd gladly rid myself of at the first chance? Who would sign up for any of this? I know I'm pretty damned amazing, but probably not that uniquely spectacular.
To be honest, I know a person worthy of my affection will by their nature find it hard to watch me cope with my illness. I have given a lot of thought to what it might be like to be in their shoes. First, there must be a lot of frustration and feeling powerless. All the person can sometimes do is see me struggle, hear me cry, or watch as my perky self is replaced by something else. There are times when I have no fight left. Watching me become that person must be painful to say the least.
Then there are pragmatic considerations. Limited energy means I can't always do things. Sometimes I have to back out at the last minute. Sometimes I need somebody to take care of me. Sometimes I need somebody to know to take care of me even if I don't ask. And, sometimes I need somebody to be strong and reassuring so I can be weak and scared. Not only will a significant other be present more than friends, but they will be closer to me emotionally. It will be both harder on them and more likely to fall upon them to help in a multitude of ways.
With all this on my mind, it makes sense that I become paralyzed by fear. If I show them the reality, they might get scared off. If I gloss over things, they will stay for the moment but potentially leave when the situation becomes apparent. Even if they can take my current circumstances, who is to say they can take it should my health move in a different direction. Will anybody see the great things I bring to a relationship along with the negatives? Am I certain I should even let somebody I care for take on my life?
For now, I try to be truthful with new people which I find to be challenging. My fears get in the way of words coming out of my mouth. I find myself testing people by giving them a small dose of my reality and watching their reaction. I know this is disingenuous and try to stop myself, but am not always successful.
I thought working on becoming healthier is the hardest thing I have ever attempted. Navigating these waters of chronic illness, trust, and potential romantic relationships is turning out to be just as hard in a different way. In all of this, I know with certainty I must keep moving forward even if I am scared beyond reason and can't see the place where hard ends. I want a companion besides this constant fear with whom I can build a life.
When I launched this blog, I promised myself and my readers to be brutally honest about my feelings. An entry has been within me for quite some time that I have avoided writing because it would be emotionally painful. I recently realized that what I find so hard to say might be the most worth saying, so I am forcing myself to do this.
This entry is all about chronic illness, trust, and relationships. For quite a few years, I haven't dated let alone paired up with somebody. 2009 seems to be The Year of Crushes and has brought a lot of issues to the surface. Living with a chronic illness is one thing, but contemplating somebody else sharing it with me is another thing entirely.
First, let me make something clear: I am scared in every fiber of my being that the health I have attained will vanish into thin air. Who knows why everything came together to cause a shift toward energy, so who knows what will cause a change in the other direction. One false move on my part might just shatter everything I've built over the past 3 years. Gone in a puff of smoke. With an unknown return date. AT my sickest, I never planned for things to get better just dealt with the reality before me. Now I try to do the same, but I was much more successful at avoiding hope than I have been at squelching fear. I'm faking acceptance right now wishing for it to become how I feel.
All these crushes have spurred me to contemplate what happens when you toss an unsuspecting person into the mix. Even after eighteen years with this illness, I am still struggling, so what is going to happen to the uninitiated? I don't have and wouldn't want the kind of heart that simply shuns romantic attraction to avoid the complications of another sharing my life and therefore my situation. This means I have to consider many other things that engender fear.
A large part of the terror comes from somebody finding out what my life is really like. People typically meet me when I'm out being active, but that is only a fraction of how I spend my time. For the most part, I keep myself entertained with books, television, craft projects, the never-ending task of feeding myself, and thinking. None of this is particularly interesting or worthy of comment. On a bad day where I spend most of the day on the couch there is even less done. On a regular basis , my body is doing something ridiculous such as hurting in a new way, getting infected in a random part, or deciding it hates what I have been feeding it with gastro-intestinal distress as its means of expression. So, not only do I have nothing interesting happening for long periods of time but the events of note quite frequently aren't topics for casual conversation.
I never know how to answer the routine question, "How are you?" The more complicated "What have you been up do?" is even worse. I never know who wants honesty and if they can understand the truth from the perspective of my reality. My answer to either question might be something like, "Well, I feel like a truck ran over me. The good news is that it didn't back up and try it again. I've read a trashy novel, managed to eat, and took a nap." That might be fine to tell somebody once in a while, but as a regular response it quickly gets old to say let alone hear. I become a boring, dull person who is seemingly always whining.
By their nature, romantic prospects become more entangled in your life because of the time spent together, activities shared, and waking up in the same bed. What can be glossed over with a "Today has been a bit challenging" cannot be concealed if they were present when you tried to get out of bed and didn't quite make it.
My chronic illness also effects my mood. It is hard to stay positive when it hurts to open a jar of applesauce that you really need to eat because it is all you can swallow at the moment. I get upset, frustrated, discouraged, and generally pissed off. I am not always perky, playful, clever me. I can be the woman crying on her kitchen floor because she can't figure out where she put the lid to the ketchup. In addition, one of the fun traits of this illness is depression as a symptom not just a reasonable emotional state based on circumstances. So, at times my mood is horrible no matter what I or anyone else says or does.
While creative management of circumstances can hide a lot, is that such a good idea? Somebody who wants to become a part of my life really needs to know what that entails. However, the reality is frightening to the uninitiated. I find myself simultaneously wanting to describe the worst possible circumstances in brutal detail and hide everything with a smile and clever turn of phrase. Even in this entry I find myself giving examples and descriptions that paint a grimmer picture than what I am currently experiencing. I don't want anyone, myself included, to forget how bad it can become. At the same time I am attempting to be upbeat and clever in the way I express my concerns and feelings.
My last long-term relationship partly imploded because of my chronic illness's out of control downward spiral. While it was not one of the top three causes, it played a role. As previously mentioned, I live in fear that the health I have gained will disappear. I am not certain I can handle it happening. How on earth can I know if a significant other can take it? There is no real way to know until it actually occurs meaning a relationship might fall to pieces right after my health falls to pieces. That possibility... Sheer terror.
Though my chronic illness has taught me much, I cannot be certain I would wish it upon myself in hindsight. I do know I would vote for it vanishing into thin air if I could plan my own future. How can I ask somebody to jump into a mess I'd gladly rid myself of at the first chance? Who would sign up for any of this? I know I'm pretty damned amazing, but probably not that uniquely spectacular.
To be honest, I know a person worthy of my affection will by their nature find it hard to watch me cope with my illness. I have given a lot of thought to what it might be like to be in their shoes. First, there must be a lot of frustration and feeling powerless. All the person can sometimes do is see me struggle, hear me cry, or watch as my perky self is replaced by something else. There are times when I have no fight left. Watching me become that person must be painful to say the least.
Then there are pragmatic considerations. Limited energy means I can't always do things. Sometimes I have to back out at the last minute. Sometimes I need somebody to take care of me. Sometimes I need somebody to know to take care of me even if I don't ask. And, sometimes I need somebody to be strong and reassuring so I can be weak and scared. Not only will a significant other be present more than friends, but they will be closer to me emotionally. It will be both harder on them and more likely to fall upon them to help in a multitude of ways.
With all this on my mind, it makes sense that I become paralyzed by fear. If I show them the reality, they might get scared off. If I gloss over things, they will stay for the moment but potentially leave when the situation becomes apparent. Even if they can take my current circumstances, who is to say they can take it should my health move in a different direction. Will anybody see the great things I bring to a relationship along with the negatives? Am I certain I should even let somebody I care for take on my life?
For now, I try to be truthful with new people which I find to be challenging. My fears get in the way of words coming out of my mouth. I find myself testing people by giving them a small dose of my reality and watching their reaction. I know this is disingenuous and try to stop myself, but am not always successful.
I thought working on becoming healthier is the hardest thing I have ever attempted. Navigating these waters of chronic illness, trust, and potential romantic relationships is turning out to be just as hard in a different way. In all of this, I know with certainty I must keep moving forward even if I am scared beyond reason and can't see the place where hard ends. I want a companion besides this constant fear with whom I can build a life.
Wednesday, September 16, 2009
Playing the Blind Card
Thanks to SW for asking the question leading to this topic.
Aside from the TAB behaviors I've previously mentioned, people have a tendency to go to extremes around me with their nice, helpful attitude that manifest in many ways from people running to open a door to drivers who, despite a green light, stop at an intersection so I can cross. (By the way, don't do that because it's not helpful. How do I know why you've stopped? Will other drivers do the same?)
If my arms were full of stuff, the dash to open a door for me would make sense, but it rarely happens under those circumstances. Similarly, stopping the car is a polite gesture when a sighted person is with me, but otherwise makes the situation harder. I far prefer the reasonable action people in my neighborhood have adopted of calling out that the light just turned green. In other words, balanced behavior that helps is terrific, but when people go to extremes it's unnecessary and often problematic
I have to be very careful about this tendency of individuals to go above and beyond when it comes to me. I complain about the negative ways people behave because I'm disabled and the positives should be equally abhorrent. Sometimes the perks distract me with the pleasurable possibility and I become a hypocrite – something I loathe. For example, strangers occasionally insist I get in front of them in a line. While that might make sense if my fatigue level is high, it really has no advantage to me as a blind person, which is why it's done since my chronic illness is hidden. Now, with a long line, who wouldn't want to cut in front of somebody? I usually try to say no, but people can get weirdly determined I accept. Really determined. Sometimes I don't refuse simply because I do not wish to battle over it – squanders my time and energy. In fact, I have been known to acquiesce even if the "help" will in actuality be harmful.
There are times and situations where I do need something because I am blind and implying that results in people stumbling over themselves to meet my need. Every so often, I have been known to use this to my advantage when it is not strictly necessary or when my need has nothing to do with me being blind. I refer to this as "playing the blind card." For example, if I have an item I genuinely need to return and it's past the specified date, I take the item in myself and see if I'll get some flexibility. Generally, it works. However, as I said before, I am careful about not exercising the power of my blindness unless absolutely necessary. Doing it for selfish reasons requires complete self-honesty.
Last week I had occasion to play the blind card while planning a bike outing for a group of friends. Since I needed a tandem, I picked an area with a rental place that stocked them. Unfortunately, when I called, I discovered a malevolent spirit rendered every single bicycle inoperative. Suggested places in the area had been similarly plagued. I switched our departure point to a shop that had functional equipment, but when I called to reserve my bike, I was told they didn't take reservations – definitely suboptimal. After consideration, I called back and begged the bored, dismissive clerk to make an exception. No luck, so I slapped down the blind card. "Look, I'm blind and if I show up and you don't have a tandem I cannot take part in a group activity." The very tone of his voice changed and he literally stumbled over his words to accommodate me. I hung up the phone feeling very slimy. Yes, my blindness actually made an exception to the policy reasonable and if he had acknowledge that in the same tone of voice and matter a factly gave me what I needed, it would have been fine. His overly helpful attitude made me feel dirty.
The day of the outing came and the complications that had been plaguing the event continued. I reached my personal limit and cancelled the excursion. I knew I needed to call the bike shop and tell them, but the thought made me sick to my stomach. Channeling a four year old, I let my friend do it and when she called, they said bikes were never reserved and they didn't know anything about an exception. Perfect. Mr. Helpful apparently slimed all over me and didn't do what he said.
That is only one example of how playing the blind card can blow up in your face. A more subtle and insidious consequence is that it can perpetuate the idea that a blind individual is not a competent person for if I beg help based on my visual limitations it confirms that I cannot do something. Often that confirmation spills over into other areas causing a person to conclude that, if I can't do one thing then I cannot do any of the others that their mind imagines. Hence, asking for something with blindness as the reason might mean a less pleasant future encounter. Therefore, occasionally when I need something because I am blind I go without it to avoid reinforcing a TAB's assumptions. Life can become a very complicated balancing act where what I need must be weighed against the long term consequences of receiving it.
For this very reason, I frequently hesitate to ask new friends for what I need to avoid adding any proof to the image of me as needy, especially if they are teetering on the edge of seeing me as a person versus seeing me as a list of "cannot do"s. Given I'm the type of person who pays attention to how others are feeling sometimes too much, I am keenly aware of how my behavior harmfully impacts attitude. I have been learning to be aware of the effect of my actions and care less about the end result, but this is a process only recently begun.
Yet again we come to the conclusion that I am a work in progress. I guess I'll be finished with that long about the time I'm dead, which will not happen until I am old, gray, and at least 100. Hey, do you think I can play the blind card to avoid death?
Aside from the TAB behaviors I've previously mentioned, people have a tendency to go to extremes around me with their nice, helpful attitude that manifest in many ways from people running to open a door to drivers who, despite a green light, stop at an intersection so I can cross. (By the way, don't do that because it's not helpful. How do I know why you've stopped? Will other drivers do the same?)
If my arms were full of stuff, the dash to open a door for me would make sense, but it rarely happens under those circumstances. Similarly, stopping the car is a polite gesture when a sighted person is with me, but otherwise makes the situation harder. I far prefer the reasonable action people in my neighborhood have adopted of calling out that the light just turned green. In other words, balanced behavior that helps is terrific, but when people go to extremes it's unnecessary and often problematic
I have to be very careful about this tendency of individuals to go above and beyond when it comes to me. I complain about the negative ways people behave because I'm disabled and the positives should be equally abhorrent. Sometimes the perks distract me with the pleasurable possibility and I become a hypocrite – something I loathe. For example, strangers occasionally insist I get in front of them in a line. While that might make sense if my fatigue level is high, it really has no advantage to me as a blind person, which is why it's done since my chronic illness is hidden. Now, with a long line, who wouldn't want to cut in front of somebody? I usually try to say no, but people can get weirdly determined I accept. Really determined. Sometimes I don't refuse simply because I do not wish to battle over it – squanders my time and energy. In fact, I have been known to acquiesce even if the "help" will in actuality be harmful.
There are times and situations where I do need something because I am blind and implying that results in people stumbling over themselves to meet my need. Every so often, I have been known to use this to my advantage when it is not strictly necessary or when my need has nothing to do with me being blind. I refer to this as "playing the blind card." For example, if I have an item I genuinely need to return and it's past the specified date, I take the item in myself and see if I'll get some flexibility. Generally, it works. However, as I said before, I am careful about not exercising the power of my blindness unless absolutely necessary. Doing it for selfish reasons requires complete self-honesty.
Last week I had occasion to play the blind card while planning a bike outing for a group of friends. Since I needed a tandem, I picked an area with a rental place that stocked them. Unfortunately, when I called, I discovered a malevolent spirit rendered every single bicycle inoperative. Suggested places in the area had been similarly plagued. I switched our departure point to a shop that had functional equipment, but when I called to reserve my bike, I was told they didn't take reservations – definitely suboptimal. After consideration, I called back and begged the bored, dismissive clerk to make an exception. No luck, so I slapped down the blind card. "Look, I'm blind and if I show up and you don't have a tandem I cannot take part in a group activity." The very tone of his voice changed and he literally stumbled over his words to accommodate me. I hung up the phone feeling very slimy. Yes, my blindness actually made an exception to the policy reasonable and if he had acknowledge that in the same tone of voice and matter a factly gave me what I needed, it would have been fine. His overly helpful attitude made me feel dirty.
The day of the outing came and the complications that had been plaguing the event continued. I reached my personal limit and cancelled the excursion. I knew I needed to call the bike shop and tell them, but the thought made me sick to my stomach. Channeling a four year old, I let my friend do it and when she called, they said bikes were never reserved and they didn't know anything about an exception. Perfect. Mr. Helpful apparently slimed all over me and didn't do what he said.
That is only one example of how playing the blind card can blow up in your face. A more subtle and insidious consequence is that it can perpetuate the idea that a blind individual is not a competent person for if I beg help based on my visual limitations it confirms that I cannot do something. Often that confirmation spills over into other areas causing a person to conclude that, if I can't do one thing then I cannot do any of the others that their mind imagines. Hence, asking for something with blindness as the reason might mean a less pleasant future encounter. Therefore, occasionally when I need something because I am blind I go without it to avoid reinforcing a TAB's assumptions. Life can become a very complicated balancing act where what I need must be weighed against the long term consequences of receiving it.
For this very reason, I frequently hesitate to ask new friends for what I need to avoid adding any proof to the image of me as needy, especially if they are teetering on the edge of seeing me as a person versus seeing me as a list of "cannot do"s. Given I'm the type of person who pays attention to how others are feeling sometimes too much, I am keenly aware of how my behavior harmfully impacts attitude. I have been learning to be aware of the effect of my actions and care less about the end result, but this is a process only recently begun.
Yet again we come to the conclusion that I am a work in progress. I guess I'll be finished with that long about the time I'm dead, which will not happen until I am old, gray, and at least 100. Hey, do you think I can play the blind card to avoid death?
Wednesday, September 9, 2009
Mrs. O'Neil and SilentJoe
According to a friend, this blog tends to be a wee bit serious. Last month I wrote a post with a lighter theme. I've decided to make it a tradition with a little humor the second wednesday of each month. So, the staid entry I scribed over the weekend shall have to wait.
In the winter of 1999, I was dating a man who lived near Boston while I resided in the western part of Massachusetts. Occasionally, I went to stay with him and we would shop at the local grocery store. One such day I waited by our cart and he went in search of something, probably his favorite food – bread. A woman approached me and introduced herself as Mrs. O'Neil. She then introduced me to her son, Joe, who was blind like me. At this point I knew things were going to get interesting.
Joe said absolutely nothing and gave me a hand shake that involved only some of his fingertips. I was probably not the friendliest or most enthusiastic person on the planet at that moment, but compared to him I could have won Miss Congeniality. Easily.
Mrs. O'Neil began extolling Silent Joe's virtues. He went to college all by himself, was somehow involved with the school's radio station, and had some nice friends. Mrs. O'Neil was very obviously proud of her little boy.
I uncharitably could not help thinking that I had graduated from one of the Seven Sisters, ran a peer mentoring network for disabled college students, lived one hundred and fifty miles from my parents, and had friends who saw me through think and thin.
Finally, Mrs. O'Neil got around to the point. "You seem like such a nice, lovely young woman. That's why I brought Joe over to meet you. You two have a lot in common. Where do you live?"
I happily explained, "I live near Amherst, but my boyfriend whom I'm visiting resides right around the corner. He's off finding something."
Okay, in Mrs. O'Neil's place I might have taken that as a creative line designed to brush her off. Apparently, she concluded just that because she kept talking about SilentJoe and me determined to find common ground for us. Whether I liked it or not. SilentJoe surprisingly had no opinion.
I kept replying with "my boyfriend" this and "my boyfriend" that. Eventually, she took herself and SilentJoe off to continue their own shopping.
In discussing the event with my boyfriend, I discovered SilentJoe was also CanelessJoe led around by his Mother. Admittedly, from time to time I go around without my cane, usually because I brought the dog who was sacked out in the car or because I was with the object of my affections and we were holding hands. The hand-holding does not preclude the use of a cane, but sometimes it's nice to focus on the romance of it all. Normally, even if I'm going sighted guide, I have my cane in the other hand and force myself to use it properly. Sometimes it even saves me from calamity.
In any case, SilentJoe had and still has my sympathies. He was raised by a woman who saw little potential in her blind child and raised him with low expectations. Her pride in her child is admirable, but setting the bar ridiculously low to have that pride is sad. Instead of fostering her child's independence, she encouraged dependence by leading him without a cane. The fact that he never spoke is truly distressing to me on multiple levels. I hope SilentJoe found his voice and his sense of self.
But today I am suppose to be full of humor not woe and my story has not quite ended. About fifteen seconds after Mrs. O'Neil and SilentJoe departed I heard her voice, then my boyfriend's. She'd cornered him.
Later he told me she had stopped him, introduced herself and SilentJoe, and asked if he was with me. He answered in the affirmative. She then asked if he was my boyfriend. He indicated that was the case.
This let lose a flood. "Oh, you must be such a nice young man to be dating her."
My boyfriend by now familiar with the things people do around me replied, "Actually, I'm pretty lucky she's dating me."
Mrs. O'Neil would have none of that. "It's amazing that you take care of her. What a special person you are."
My boyfriend responded, "WE take care of each other. It's a good relationship."
Mrs. O'Neil was as tenacious with her praise of him as she was in trying to set me up with her son saying, "Oh, dear, there's a place in heaven for you." At this point, my boyfriend managed to escape.
I have told this story frequently over the past ten years, but it was not until this moment that a question occurred to me. In Mrs. O'Neil's mind, would my boyfriend of the time lose his place in heaven if he broke up with me? What about if he became an ax murderer later in life? And, um, did dating me erase all bad deeds up until that moment in time? I really want to know the answer to these burning questions.
In the winter of 1999, I was dating a man who lived near Boston while I resided in the western part of Massachusetts. Occasionally, I went to stay with him and we would shop at the local grocery store. One such day I waited by our cart and he went in search of something, probably his favorite food – bread. A woman approached me and introduced herself as Mrs. O'Neil. She then introduced me to her son, Joe, who was blind like me. At this point I knew things were going to get interesting.
Joe said absolutely nothing and gave me a hand shake that involved only some of his fingertips. I was probably not the friendliest or most enthusiastic person on the planet at that moment, but compared to him I could have won Miss Congeniality. Easily.
Mrs. O'Neil began extolling Silent Joe's virtues. He went to college all by himself, was somehow involved with the school's radio station, and had some nice friends. Mrs. O'Neil was very obviously proud of her little boy.
I uncharitably could not help thinking that I had graduated from one of the Seven Sisters, ran a peer mentoring network for disabled college students, lived one hundred and fifty miles from my parents, and had friends who saw me through think and thin.
Finally, Mrs. O'Neil got around to the point. "You seem like such a nice, lovely young woman. That's why I brought Joe over to meet you. You two have a lot in common. Where do you live?"
I happily explained, "I live near Amherst, but my boyfriend whom I'm visiting resides right around the corner. He's off finding something."
Okay, in Mrs. O'Neil's place I might have taken that as a creative line designed to brush her off. Apparently, she concluded just that because she kept talking about SilentJoe and me determined to find common ground for us. Whether I liked it or not. SilentJoe surprisingly had no opinion.
I kept replying with "my boyfriend" this and "my boyfriend" that. Eventually, she took herself and SilentJoe off to continue their own shopping.
In discussing the event with my boyfriend, I discovered SilentJoe was also CanelessJoe led around by his Mother. Admittedly, from time to time I go around without my cane, usually because I brought the dog who was sacked out in the car or because I was with the object of my affections and we were holding hands. The hand-holding does not preclude the use of a cane, but sometimes it's nice to focus on the romance of it all. Normally, even if I'm going sighted guide, I have my cane in the other hand and force myself to use it properly. Sometimes it even saves me from calamity.
In any case, SilentJoe had and still has my sympathies. He was raised by a woman who saw little potential in her blind child and raised him with low expectations. Her pride in her child is admirable, but setting the bar ridiculously low to have that pride is sad. Instead of fostering her child's independence, she encouraged dependence by leading him without a cane. The fact that he never spoke is truly distressing to me on multiple levels. I hope SilentJoe found his voice and his sense of self.
But today I am suppose to be full of humor not woe and my story has not quite ended. About fifteen seconds after Mrs. O'Neil and SilentJoe departed I heard her voice, then my boyfriend's. She'd cornered him.
Later he told me she had stopped him, introduced herself and SilentJoe, and asked if he was with me. He answered in the affirmative. She then asked if he was my boyfriend. He indicated that was the case.
This let lose a flood. "Oh, you must be such a nice young man to be dating her."
My boyfriend by now familiar with the things people do around me replied, "Actually, I'm pretty lucky she's dating me."
Mrs. O'Neil would have none of that. "It's amazing that you take care of her. What a special person you are."
My boyfriend responded, "WE take care of each other. It's a good relationship."
Mrs. O'Neil was as tenacious with her praise of him as she was in trying to set me up with her son saying, "Oh, dear, there's a place in heaven for you." At this point, my boyfriend managed to escape.
I have told this story frequently over the past ten years, but it was not until this moment that a question occurred to me. In Mrs. O'Neil's mind, would my boyfriend of the time lose his place in heaven if he broke up with me? What about if he became an ax murderer later in life? And, um, did dating me erase all bad deeds up until that moment in time? I really want to know the answer to these burning questions.
Wednesday, September 2, 2009
Everyone's Just Like Me
I sometimes forget the rest of you aren’t disabled like me. While listening to television, I will hear a character walking down a city street and wonder why I cannot hear the tap of their cane. Friends list what they are going to-do in the coming day and I question how they can even think of such a monumental effort that will leave them exhausted for days. And doesn’t everyone read books with their ears while washing the dishes? Can’t everyone follow directions that would work navigating a route with your cane?
If you think about it, forgetting everyone is not like me shows a certain level of self-acceptance. Many people see their disability in negative terms which makes them keenly aware others do not have such burdens. Others accept their condition with a balanced view of they are always aware that their circumstances are not typical. Crazy little me goes one step beyond that so alright with my situation that I assume the rest of you are happily dealing with it as well. I’m not different because the rest of you are blindly moving through the world making certain you do not exhaust yourselves.
On the other hand, I could just be incredibly self-centered. I am so wrapped up in how I relate to the world that I can’t be bothered to remember the rest of you function differently.
It is also possible the entire thing can be blamed on ingrained behavior. By now, I don’t need to think about what to do when I misplace my cell pone – I call it. I automatically grab my cane when I leave the house. I would never, under any circumstances, put a spice bottle back on a different shelf. I would find it literally impossible to put a clean knife in to the dish rack point up. These adaptive behaviors have reached the level of instincts so no wonder I forget the rest of you function in other ways.
Turn about is fair play and from time to time people forget about one of my disabilities. Usually, they ask if I can smell something and I give a sarcastic answer before laughing.
Unfortunately, when people who do not know me well forget I’m blind and are then reminded, they sometimes say things like, “Well, think of it as a compliment.” That stops my mirth. Apparently, the praise comes from the fact that I function so ell that I do not behave as if I am blind. This means the person has a preconceived notion of what a blind person can do and when I exceed it by behaving like the rest of the human race, I have accomplished some laudable feat. In my mind, surpassing low expectations isn't achieving some lofty goal. If a woman lifts something extremely heavy, nobody assumes she is a man because women can’t lift great weights. When a high school valedictorian applies to a college, it would be considered racist to conclude they are white. Assuming an Asian person is a computer wiz has become a cliché. So, why should I be flattered when somebody assumes blind people aren’t as competent as the rest of humankind?
This is not to say I am not worthy of praise for I have adapted to my circumstances better than some. I have great coping tools developed over years of refusing to accept those lowered expectations as part of the reality I inhabit. My skills reflect time, energy, creative thinking and obstinacy.
And somehow I’ve managed to end another post by telling you why I should be praised. This has got to stop. Seriously.
If you think about it, forgetting everyone is not like me shows a certain level of self-acceptance. Many people see their disability in negative terms which makes them keenly aware others do not have such burdens. Others accept their condition with a balanced view of they are always aware that their circumstances are not typical. Crazy little me goes one step beyond that so alright with my situation that I assume the rest of you are happily dealing with it as well. I’m not different because the rest of you are blindly moving through the world making certain you do not exhaust yourselves.
On the other hand, I could just be incredibly self-centered. I am so wrapped up in how I relate to the world that I can’t be bothered to remember the rest of you function differently.
It is also possible the entire thing can be blamed on ingrained behavior. By now, I don’t need to think about what to do when I misplace my cell pone – I call it. I automatically grab my cane when I leave the house. I would never, under any circumstances, put a spice bottle back on a different shelf. I would find it literally impossible to put a clean knife in to the dish rack point up. These adaptive behaviors have reached the level of instincts so no wonder I forget the rest of you function in other ways.
Turn about is fair play and from time to time people forget about one of my disabilities. Usually, they ask if I can smell something and I give a sarcastic answer before laughing.
Unfortunately, when people who do not know me well forget I’m blind and are then reminded, they sometimes say things like, “Well, think of it as a compliment.” That stops my mirth. Apparently, the praise comes from the fact that I function so ell that I do not behave as if I am blind. This means the person has a preconceived notion of what a blind person can do and when I exceed it by behaving like the rest of the human race, I have accomplished some laudable feat. In my mind, surpassing low expectations isn't achieving some lofty goal. If a woman lifts something extremely heavy, nobody assumes she is a man because women can’t lift great weights. When a high school valedictorian applies to a college, it would be considered racist to conclude they are white. Assuming an Asian person is a computer wiz has become a cliché. So, why should I be flattered when somebody assumes blind people aren’t as competent as the rest of humankind?
This is not to say I am not worthy of praise for I have adapted to my circumstances better than some. I have great coping tools developed over years of refusing to accept those lowered expectations as part of the reality I inhabit. My skills reflect time, energy, creative thinking and obstinacy.
And somehow I’ve managed to end another post by telling you why I should be praised. This has got to stop. Seriously.
Wednesday, August 26, 2009
Obstinacy Has a Positive Side
I am (pick your favorite) determined, obstinate, persistent, or stubborn. I come by it honestly through the genetics of my maternal line. While I know it is a trait that drives those around me out of their minds, it is probably the one thing most responsible for who I am today.
I was born in rural Upstate New York with a collection of midline facial birth defects resulting in no nose, nasal airway, and eye structure abnormalities. Five hundred years ago, I would have been left in the woods to die in one of many not so pleasant ways. Even a hundred years ago I would have been institutionalized. Though I have never asked, I suspect somebody in my parent’s lives suggested exactly that when I came along. Instead, after a month in the hospital, I went home to parents and an older sister. Perhaps that choice was influenced by my mother’s obstinate streak.
By their nature, babies are determined creatures doing the same thing over and over until they master walking, speaking, putting a square peg in the square hole, and other tasks. Perhaps my persistence is more a result of conditioning for when I kept trying I did succeed. With most children the determination fades as less repetition is required to achieve goals – addition does not take as much trial and error as walking. Maybe mine simply never faded because it was still needed in order for me to successfully function.
Whether nature or nurture, stubbornness has paid off in my life. A few examples to convince you.
At age eleven, I had a skin graft leaving a large scar on the inside of my left arm. Everyone noticed it, asked questions, and thought it was unsightly. I stopped wearing sleeveless shirts and often chose those that went to my elbows. When I became a camp counselor, I realized tank tops were a pragmatic necessity, so I wore them. I felt hideous, but did it anyway. The campers often asked questions, but I kept wearing my tanks. Nothing, not even my own feelings of hideousness would keep me from doing the eminently reasonable.
In high school, my physics teacher made it clear he thought I should drop the course because I could not see the board. All the other smart kids took the class, so I refused. At the end of the year, I received the highest grade on the state-wide test and my teacher apologized.
The most profound positive impact of obstinacy relates to my body image. From the moment I was born, people around me said and did things letting me know my appearance was not acceptable. By the time I was eighteen, I knew the world was very messed up when it came to people like me. I also knew I was hideous. It impacted every aspect of my life –avoiding being photographed, shyness around strangers, assuming nobody would ever find me physically attractive, and thinking of my body as a separate entity.
In college I realized this needed to change, so I adopted the philosophy of “fake it til you make it” meaning I tried to behave as though I liked the body I inhabited as opposed to loathing it.
About the time I started liking what I could see in the mirror, I went totally blind. That through me for how could you learn to like your body if you couldn’t see what others saw? Well, you can when you stubbornly refuse to let that stop progress.
From time to time, events still make me doubt that I’m attractive. I refuse to accept that version of reality and persist until my positive body image re-asserts itself. In other words, I stubbornly wait out my emotions until they go back to what I want.
The above examples do not truly reflect the reality I have always experienced. Whether by word, deed, or attitude, I am reminded constantly and unpredictably that who and what I am is different from what is acceptable and expected. Trying to find a way to live with it is hard. To do so without becoming a stone wall is more challenging. Some days I turn the not so pleasant experiences into humor, some days I scream and still others I cry. Yet I never stop feeling because somewhere along the way I decided turning off my emotions would be wrong for lessening the amount of hurt would muffle the intensity of joy. Each time something less than pleasant happens I make a choice to continue down this road rather than walking an easier path. That alternative would not be possible if not for my stubborn nature and I would not b the me I know and love.
Usually I brush off admiration so take not of what I am about to say. I’ve managed to cope with how the world reacts to me without giving up, giving in, or rejecting the entire human race. Let that cause awe and amazement instead of the fact that I make fabulous chocolate cupcakes.
I was born in rural Upstate New York with a collection of midline facial birth defects resulting in no nose, nasal airway, and eye structure abnormalities. Five hundred years ago, I would have been left in the woods to die in one of many not so pleasant ways. Even a hundred years ago I would have been institutionalized. Though I have never asked, I suspect somebody in my parent’s lives suggested exactly that when I came along. Instead, after a month in the hospital, I went home to parents and an older sister. Perhaps that choice was influenced by my mother’s obstinate streak.
By their nature, babies are determined creatures doing the same thing over and over until they master walking, speaking, putting a square peg in the square hole, and other tasks. Perhaps my persistence is more a result of conditioning for when I kept trying I did succeed. With most children the determination fades as less repetition is required to achieve goals – addition does not take as much trial and error as walking. Maybe mine simply never faded because it was still needed in order for me to successfully function.
Whether nature or nurture, stubbornness has paid off in my life. A few examples to convince you.
At age eleven, I had a skin graft leaving a large scar on the inside of my left arm. Everyone noticed it, asked questions, and thought it was unsightly. I stopped wearing sleeveless shirts and often chose those that went to my elbows. When I became a camp counselor, I realized tank tops were a pragmatic necessity, so I wore them. I felt hideous, but did it anyway. The campers often asked questions, but I kept wearing my tanks. Nothing, not even my own feelings of hideousness would keep me from doing the eminently reasonable.
In high school, my physics teacher made it clear he thought I should drop the course because I could not see the board. All the other smart kids took the class, so I refused. At the end of the year, I received the highest grade on the state-wide test and my teacher apologized.
The most profound positive impact of obstinacy relates to my body image. From the moment I was born, people around me said and did things letting me know my appearance was not acceptable. By the time I was eighteen, I knew the world was very messed up when it came to people like me. I also knew I was hideous. It impacted every aspect of my life –avoiding being photographed, shyness around strangers, assuming nobody would ever find me physically attractive, and thinking of my body as a separate entity.
In college I realized this needed to change, so I adopted the philosophy of “fake it til you make it” meaning I tried to behave as though I liked the body I inhabited as opposed to loathing it.
About the time I started liking what I could see in the mirror, I went totally blind. That through me for how could you learn to like your body if you couldn’t see what others saw? Well, you can when you stubbornly refuse to let that stop progress.
From time to time, events still make me doubt that I’m attractive. I refuse to accept that version of reality and persist until my positive body image re-asserts itself. In other words, I stubbornly wait out my emotions until they go back to what I want.
The above examples do not truly reflect the reality I have always experienced. Whether by word, deed, or attitude, I am reminded constantly and unpredictably that who and what I am is different from what is acceptable and expected. Trying to find a way to live with it is hard. To do so without becoming a stone wall is more challenging. Some days I turn the not so pleasant experiences into humor, some days I scream and still others I cry. Yet I never stop feeling because somewhere along the way I decided turning off my emotions would be wrong for lessening the amount of hurt would muffle the intensity of joy. Each time something less than pleasant happens I make a choice to continue down this road rather than walking an easier path. That alternative would not be possible if not for my stubborn nature and I would not b the me I know and love.
Usually I brush off admiration so take not of what I am about to say. I’ve managed to cope with how the world reacts to me without giving up, giving in, or rejecting the entire human race. Let that cause awe and amazement instead of the fact that I make fabulous chocolate cupcakes.
Wednesday, August 19, 2009
The Conundrum: What Others Think
In my as yet unpublished novel, my female protagonist struggles to resolve her feelings of being not like everyone else with her desires for ordinary things like career, love and family. AS a disfigured woman, she believes it is a one or the other choice – be true to how it feels to live in this world or hide all of it under the façade of a typical life. Part of the story’s resolution involves her learning they are not mutually exclusive things.
The other night I was trying to explain the relationship I have with my family to a recently-acquired set of friends who know nothing about my perspectives on disability let alone my history. I tried to articulate my struggle to be seen as independent, but the words coming out of my mouth didn’t even make sense to me. After all, more than one family member has proclaimed their amazement at my ability to live on my own which contradicts any impression of them viewing me as dependent.
Today I finally put two and two together and actually arrived at four. For me, there are more or less three states: child-like dependency, the way I live my life, and my assigned role as “SuperJen.” The first encompasses such things as me being treated like I am five years old, people wanting to do things for me, and the assumption that somebody must “take care” of me. “SuperJen” is born when people acknowledge that I live on my own. They see my life as some extraordinary accomplishment beyond most mere mortals to achieve. In the middle lies the reality of my life which is a combination of me receiving help for some things, doing others on my own, and sometimes acquiring the necessary assistance to then carry out a task for myself.
I finally get it! Most people put me into one of the extreme categories instead of the more complicated reality with all its shades of gray. Our brains with their this or that dichotomization of the world has trouble with shades of gray. *I* have trouble with shades of gray. No wonder I’m either five or SuperJen.
Back to my female protagonist’s impasse. Until today, I never saw her problem reconciling experience and desires as somehow parallel to my frustration with being put into one of two equally inaccurate categories. The bottom line is that both are about how others view our lives versus the reality we know in our hearts. We are obsessed with others perceptions. My female protagonist doesn’t want mundanety to be viewed as capitulation to how she is treated. I don’t want my acknowledgment of either my need for help or my accomplishments to cause others to pigeon hole me into five-year-old or SuperJen. I need to face the fact that a character I created has something to teach me because she learned how to find a balance I have yet to achieve.
Moral of the story? I really need to stop worrying about what other people think. Then again a major part of my life’s work and the reason for this blog is focused on what other people think. Others perceptions often impact the choices and opportunities available to me. Then again by caring about what others think and behaving accordingly, I am restricting my own actions. How do you reconcile those two things? If you can find a way, take a whack at world peace because I think it might be easier.
The other night I was trying to explain the relationship I have with my family to a recently-acquired set of friends who know nothing about my perspectives on disability let alone my history. I tried to articulate my struggle to be seen as independent, but the words coming out of my mouth didn’t even make sense to me. After all, more than one family member has proclaimed their amazement at my ability to live on my own which contradicts any impression of them viewing me as dependent.
Today I finally put two and two together and actually arrived at four. For me, there are more or less three states: child-like dependency, the way I live my life, and my assigned role as “SuperJen.” The first encompasses such things as me being treated like I am five years old, people wanting to do things for me, and the assumption that somebody must “take care” of me. “SuperJen” is born when people acknowledge that I live on my own. They see my life as some extraordinary accomplishment beyond most mere mortals to achieve. In the middle lies the reality of my life which is a combination of me receiving help for some things, doing others on my own, and sometimes acquiring the necessary assistance to then carry out a task for myself.
I finally get it! Most people put me into one of the extreme categories instead of the more complicated reality with all its shades of gray. Our brains with their this or that dichotomization of the world has trouble with shades of gray. *I* have trouble with shades of gray. No wonder I’m either five or SuperJen.
Back to my female protagonist’s impasse. Until today, I never saw her problem reconciling experience and desires as somehow parallel to my frustration with being put into one of two equally inaccurate categories. The bottom line is that both are about how others view our lives versus the reality we know in our hearts. We are obsessed with others perceptions. My female protagonist doesn’t want mundanety to be viewed as capitulation to how she is treated. I don’t want my acknowledgment of either my need for help or my accomplishments to cause others to pigeon hole me into five-year-old or SuperJen. I need to face the fact that a character I created has something to teach me because she learned how to find a balance I have yet to achieve.
Moral of the story? I really need to stop worrying about what other people think. Then again a major part of my life’s work and the reason for this blog is focused on what other people think. Others perceptions often impact the choices and opportunities available to me. Then again by caring about what others think and behaving accordingly, I am restricting my own actions. How do you reconcile those two things? If you can find a way, take a whack at world peace because I think it might be easier.
Wednesday, August 12, 2009
What's Funny to Me
Today I will begin by telling you a story. Once upon a time, I met a new friend and was invited into her home. I went gladly to join a group celebration of something or other. There I learned about the step up between living room and kitchen, the height of the raised door jam and all the other little things that help me function independently. Because of my obsessive level of vast water consumption, I soon needed the restroom and was directed there.
Ninety seconds into my sequestration behind the closed door, two of my friends in the kitchen called, “Jen, there’s no sink in there.”
When I went into the kitchen to wash my hands, the two friends were giggling. One of them said, “We were going to just let you hunt for the sink, but thought it might be cruel.”
I joined in the laughter because it would have actually been extremely funny.
Have you missed the humor in this? Well, you are by no means alone. As is my habit, I have tried to understand it. Here’s my theory.
Like with many things, it’s all in the eye of the beholder or rather the mind in this case. I view my various disabilities as facts of life. They have plusses and minuses, but in the end are more or less neutral. Many others see them in more negative terms – suffering, complications, things I cannot do, and burdensome. To these people, witticisms based on disability are the equivalent of poking fun at a suffering person. Social taboos make humor based on other’s miseries verboten.
Emily Salers of the Indigo Girls once said, “You have to laugh at yourself cuz you’d cry your eyes out if you didn’t.” Finding the humor in life is definitely better than settling into the sorrow. I know whenever possible I choose mirth over tears. Some might say that with issues of disability I am opting for the positive spin. I believe the cause is deeper than a conscious or even subconscious choice.
Years ago, I laughed about my disabilities far less. I also had lower self-esteem for a variety of reasons, some based on my disability and some on other things. There was definitely an element of depression in the mix. Back then I don’t think I possessed the ability to see the humor, perhaps unable to laugh at my own misery.
I have to confess I sometimes find what TABs do to be hysterical. In January, I attended a party to celebrate Obama’s inauguration. I can’t remember how I wound up talking with this woman, but she was fixated on my disabilities. Utterly fixated. When a friend came by, I latched onto her and was rescued. I explained that my conversational partner was obsessed. My friend counseled that she was just being nice and I was overreacting.
An hour later my friend was back at my side saying, “Oh my God! You were right!”
“About?” I asked.
“That woman cornered me. She asked me a bunch of questions about you. She kept going on about how you weren’t getting what you needed and who took care of you.”
“Yeah,” I sighed.
My friend finished with, “She thinks I’m a saint for helping you. Now my halo is really shiny.”
With this my amusement comes from the over the top nature of the situation. Such stories are the fodder for disabled comedians not real life. While I occasionally suspect somebody is sanctifying my friends while seeing me as helpless, rarely do they actually act on it to this degree.
One more story before I go, this one only funny because of its “That never happens in real life” nature. I was at an open mic and this comedian was bombing. He knew it and desperately reached for the overdone “why women don’t date me and I’m so pathetic” shtick. Then, suddenly, he asked, “Hey, blind girl in the back of the room, what’s your name?”
He had to mean me, so I answered, “Jennifer.”
“Hey, Jennifer,” he asks, “Want to go on a date with me?”
“Um, I might like having a real conversation with you first.”
He didn’t even wait for my full answer before stating, “See, I’m so pathetic even the blind girl won’t date me.”
Yes, completely ablist and offensive. Funny only because in my wildest dreams I never thought somebody would do that. To me. In public.
I think I have inadvertently made yet another convincing argument as to why TABs should stop viewing disability as misery and start seeing it as simply a fact – they will laugh more. And if that last sentence hasn’t at least made you smile, then….
Ninety seconds into my sequestration behind the closed door, two of my friends in the kitchen called, “Jen, there’s no sink in there.”
When I went into the kitchen to wash my hands, the two friends were giggling. One of them said, “We were going to just let you hunt for the sink, but thought it might be cruel.”
I joined in the laughter because it would have actually been extremely funny.
Have you missed the humor in this? Well, you are by no means alone. As is my habit, I have tried to understand it. Here’s my theory.
Like with many things, it’s all in the eye of the beholder or rather the mind in this case. I view my various disabilities as facts of life. They have plusses and minuses, but in the end are more or less neutral. Many others see them in more negative terms – suffering, complications, things I cannot do, and burdensome. To these people, witticisms based on disability are the equivalent of poking fun at a suffering person. Social taboos make humor based on other’s miseries verboten.
Emily Salers of the Indigo Girls once said, “You have to laugh at yourself cuz you’d cry your eyes out if you didn’t.” Finding the humor in life is definitely better than settling into the sorrow. I know whenever possible I choose mirth over tears. Some might say that with issues of disability I am opting for the positive spin. I believe the cause is deeper than a conscious or even subconscious choice.
Years ago, I laughed about my disabilities far less. I also had lower self-esteem for a variety of reasons, some based on my disability and some on other things. There was definitely an element of depression in the mix. Back then I don’t think I possessed the ability to see the humor, perhaps unable to laugh at my own misery.
I have to confess I sometimes find what TABs do to be hysterical. In January, I attended a party to celebrate Obama’s inauguration. I can’t remember how I wound up talking with this woman, but she was fixated on my disabilities. Utterly fixated. When a friend came by, I latched onto her and was rescued. I explained that my conversational partner was obsessed. My friend counseled that she was just being nice and I was overreacting.
An hour later my friend was back at my side saying, “Oh my God! You were right!”
“About?” I asked.
“That woman cornered me. She asked me a bunch of questions about you. She kept going on about how you weren’t getting what you needed and who took care of you.”
“Yeah,” I sighed.
My friend finished with, “She thinks I’m a saint for helping you. Now my halo is really shiny.”
With this my amusement comes from the over the top nature of the situation. Such stories are the fodder for disabled comedians not real life. While I occasionally suspect somebody is sanctifying my friends while seeing me as helpless, rarely do they actually act on it to this degree.
One more story before I go, this one only funny because of its “That never happens in real life” nature. I was at an open mic and this comedian was bombing. He knew it and desperately reached for the overdone “why women don’t date me and I’m so pathetic” shtick. Then, suddenly, he asked, “Hey, blind girl in the back of the room, what’s your name?”
He had to mean me, so I answered, “Jennifer.”
“Hey, Jennifer,” he asks, “Want to go on a date with me?”
“Um, I might like having a real conversation with you first.”
He didn’t even wait for my full answer before stating, “See, I’m so pathetic even the blind girl won’t date me.”
Yes, completely ablist and offensive. Funny only because in my wildest dreams I never thought somebody would do that. To me. In public.
I think I have inadvertently made yet another convincing argument as to why TABs should stop viewing disability as misery and start seeing it as simply a fact – they will laugh more. And if that last sentence hasn’t at least made you smile, then….
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