People Aren't Broken: Disability from the Inside Out

With Water, Rudder and Pilot

2012-05-09T16:01:00.000-07:00

It's strange how sometimes it literally feels like a switch is flipped inside your head and everything changes. You were just passively sitting there, taking in the world, when between one breath and the next it's all different. This happened a couple of days after I wrote Waterless, Rudderless, Pilotless Me The factor changing everything was A PLAN. Funny how that makes it all easier on someone like me. Actually, I've come to realize it's not all that astonishing that plans make someone like me feel better. A large part of my life has been without parameters – I don't know how much energy I will have each day, I don't know what barriers to access I will encounter, and I don't know what my body will do next. Most people have at least the illusion that these things will remain more or less constant. I think maybe that's one of the often unacknowledged differences between non-disabled and disabled people – the illusion of constancy versus the hard reality of the unknown. Non-disabled people have come to count on a world that works in certain ways because by in large it has done so in the past. They wake up with about the same amount of energy and they can accomplish things without crazy obstacles being thrown in their paths. I refer to it as an illusion because people get the flu, cars get flat tires, people get laid off, bones get broken, houses flood, stores run out of diapers, and total chaos is entirely possible. It's just not likely and people tend to count upon that and learn to cope when it's not the case. I cannot move through the world playing the odds that it will be smooth sailing because it's so often not. I'm more likely to have wrenches thrown in the works and need to be prepared to handle such eventualities. My reality is unpredictability and my best coping strategy is preparedness. I guess it's the difference between walking on a tight rope knowing a net will catch you versus walking on it not knowing if there is a net. Nothing in your skill level changes, but the difference is huge. My doctor laid out the steps for sorting everything out. Nothing is even infinitesimally more certain, but knowing the part somehow makes it easier. I've been accused of being a control freak. and, to some extent, wanting to be in control is a feature of my personality. However, how much lack of control do I live with on average? Wouldn't that tend to make me want to be able to control what I can? To assign random numbers to the situation, I have maybe 30% ability to predict events in my life. A non-disabled person might have more like 55% ability to foresee the future. So, wouldn't I be prone to trying to make my number closer to that of a non-disabled person? Am I a control freak or just a person wanting the security of knowing whether or not there's a safety net?

Waterless, Rudderless, Pilotless Me

2012-05-09T15:44:00.001-07:00

Circumstances are unfolding in my life and I find myself without a frame of reference. The voice inside my head that can predict how a given thing will impact my life, from energy it will consume to amount of time needed to process, is without words. The oddest part is that it took me literally more than two weeks to realize this. For the past two-and-a-half years, medical drama has been a fact of my life. It took two of those years for me to stop denying that reality. Now it looks like the cause of my tracheal stenosis is known – my esophagus muscles and my stomach – and that needs to be fixed before my trachea can be addressed. The most viable solution involves surgery just given governmental approval. Then I'll have to have surgery on my trachea to remove the damaged part. It's not a common surgery and requires five days of hospitalization to make sure the sewed together ends don't (Yikes!) come apart. Under the best of circumstances, I do not deal well with medical matters. These strike me as not the best of circumstances. Lately I find myself reading fluffy novels, watching bad television, taking my dog for work walks, going to yoga, and sometimes trying to tackle one of my volunteer things. Not a lot of volunteer stuff is happening. I'm sort of unable to drag myself away from the books and TV. Heck, I'll even simply sit there. It's like there's nothing left in me for anything requiring my soul. I've been beating myself up about this for a couple of weeks. "Get off your butt and DO SOMETHING!" my brain screams. It falls on deaf ears. "Why are you just sitting there?" gets no response. This isn't exactly depression, though that would be understandable. It isn't exactly escapism, either. It's as if my inner batteries have been drained past empty and I'm trying to recharge them with the weakest of power sources. today it came to me: I don't actually know how to handle this. I am a fish out of water, a boat without a rudder, a plane without a pilot. I've decided one I hope useful thing. I get to read books, watch TV, and even sit there. I am allowed to do it until I'm so bored that I do something just to shake things up. My commitments can wait. I'm going through something hard. Maybe grace under this pressure is achieved by not doing things that increase my stress. An, yeah, I wrote that. Astonishingly, I even think I believe it.

Disability Has A P.R. Problem

2012-04-30T22:38:00.000-07:00

"Blindness can be reduced to a nuisance" is a tagline used by the National Federation of the Blind as shorthand for what proper accommodation can accomplish. With adequate training, adaptive technology, and alternative formats, the barriers created by a world that functions on a visual level are eliminated and only small concerns, such as taking the time to label items, remain. The visual is conveyed via other forms of sensory input making the condition not particularly disabling. The same point has been made in relation to people with mobility impairments and those who are Deaf. The social model of disability, built around the concept that the way society works is the source of disablement, furthers this notion. Living in a world where a wheelchair can go everywhere and help is available if ever needed shapes a reality in which being a wheelchair user isn't a huge problem. Disability rights activists argue for accessibility in all things so that people with disabilities can move through the world with the ease others take for granted -- do B instead of A and then everyone can play. It is a very credible line of reasoning until one considers the dirty little secret that not all characteristics of disability can be reduced by accommodation to a nuisance. How can chronic pain be made only an annoyance? What method reduces lack of energy to an inconvenience? When a psychiatric condition impacts a life, can its effects be mitigated by the equivalent of a ramp or Braille menu? As someone who lives with both blindness and chronic illness, I know the first is reducible to annoyance and the second profoundly impacts my life no matter how the world functions. Yet even I talk up accommodations whilst avoiding mention of things that cannot be resolved in the do B instead of A and everyone can play formula. As a community, we remain taciturn about the aspects of disability that aren't... fixable. We are profoundly uncomfortable with the idea that sometimes disability can be difficult no matter what anyone does. I'm pretty sure it's a public relations matter. If we admit disability cannot be eradicated through accommodation and societal change, then why would the average non-disabled person bother? We need the persuasiveness of the absolute do B instead of A and all will be well. One can't sell a car on its safety features by listing all the ways airbags can fail and one cannot engender profound social change by acknowledging all the ways that change will fail to fix the entirety of the problem. As a people, we want everything to appear complication-free, even when it's not. Non-disabled people seem unable to swallow the idea that disability isn't a lousy fate. Arguing ramps and Braille an ASL interpreters reduce that destiny to nuisance seems implausible. Convincing anyone that there is a way to accommodate pain down to an annoyance seems impossible. Perhaps the honesty of admitting disability is sometimes hard will ring true and then we can argue that it will be less horrific in a world that doesn't function on assumptions of able bodies and "normal" minds. Yet conceding the hard aspects of some disabilities tends to evoke pity, a mindset many never leave for it is far easier to feel sorry for someone than to make the changes necessary to address the facets of disability that are resolvable. If we paint disability with the accommodation-fixes-everything brush, non-disabled people don't believe us. If we are honest about some parts not being fixable, then non-disabled people see no reason to bother trying. Unsolvable problem meet unmovable rock. This is why I believe disability needs a P.R. guru. This post is for Blogging Against Disablism Day 2012 and a comprehensive listing of the blogs participating and pieces posted can be found at Diary of a Goldfish.

Chomp

2012-02-27T17:57:00.002-08:00

As the past two entries might cause you to surmise, last week I had more than my fair share of crap landing on me because I'm blind. I knew it was getting to me, but truly didn't understand how much until I bit someone's head off.
I went to a discussion group on transgendered women's issues that, from my previous experience, is essentially a fascinating discussion of gender with lovely servings of race, class, and sexual orientation politics added to the stew. The facilitator has always been extremely open to disability issues going so far as to send me an article ahead of time so I could read it and fully participate in the conversation.
Maybe my expectations were too high. Maybe my frustration level was at the boil over threshold. Maybe I'm just human and like any member of a marginalized group sometimes want to not have to educate or explain, rather having everything simply be done the "right" way. Whatever the case, I lost it.
First, in trying to make a point about something being both intellectual and emotional, a person must have tapped their head and chest. It wasn't clear initially, but through context I sorted it out. Then someone made reference to how they look. I didn't understand her point because I had no way of knowing she has masculine traits. When the same person started telling a story using facial expressions that conveyed crucial information, I put up my hand and stopped her. The conversation then went something like this:
"Hang on a second. Could you please, please stop assuming everyone in this room is sighted. It's pissing me off."
She replied, "I didn't know."
"The dog under the table didn't tell you?" I asked.
"I didn't know what the dog was for."
I said, "I know I don't look blind, but still. You can't just assume everyone here can see."
She said, "My bad."
It was awkward, I was intense in how I presented my point, and the entire room was silent for that moment afterwards that tells you everyone is uncomfortable with how someone behaved. And by someone, in this case I mean me.
I'm not even going to explain why I was justified in being upset because clearly I had good reason. I did not, however, have reason to be rude. I simply lost my cool after a week of being hemmed in by a world that assumes sight and cannot manage to think outside that particular box. I wish my ire had been directed at those who truly deserved it. Then again, when it's an entire social structure to blame, how do you vent at the appropriate entity?

Counting to Ten

2012-02-23T22:40:00.002-08:00

On the bus today, I heard the following conversation.
Woman: I can't imagine being like Bob. I'm so grateful I'm not like that.
Man: I saw someone like Bob once. He was a judge.
Woman: :Wow, really?
Man: He did a good job.
Woman With all Bob's issues, I can't imagine what it took to go to college and then law school.
Man: Yeah, but if I were in court, I'd want a judge like Bob. I think he'd do a better job at deciding because of his issues.
Okay, so Bob is clearly me and these two people were obviously discussing blind people WITHIN MY HEARING.
I tried counting to ten. Still wanted to kill someone. I counted again. Still pissed. Then I decided to do the squares of numbers. By the time I got to 20 squared they were done talking. Thankfully.
I guess if I'd been brought up on murder charges, it would have helped to have the blind judge they were discussing. He would have understood the situation as justifiable homicide.

Things That Make You Go ARGH!

2012-02-22T22:11:00.000-08:00

It's been one of those weeks where becoming a hermit looks rather appealing. Multiple factors have contributed to an exponentially higher amount of contact with the Medical World. In the Blind Person v. Medical World war, I am currently getting my backside handed to me on a surgical steel platter.
I have a ten page form to fill out for a doctor. The PDF is an image not text. The office manager tried to turn it into text, but it doesn't exactly work. I'm going to need to sit on the phone and go through the entire thing with someone.
That, however, had a better resolution than the next problem. I have an online questionnaire to complete for another doctor. They have designed certain parts in a way I can't seem to negotiate. I made extensive notes on my answers and called the doctor's office.
Once I explained the problem, the first question was so predictable, "Isn't there someone who can do it for you?"
"Um, no. Can I email all these notes to someone so they can fill it out for me?"
"No." I'm bringing my notes to the appointment in the hopes that someone will better understand the problem when my guide dog is standing by my side.
And the final bit of insanity. I need to have a study of my stomach's ph level. There is great technology that allows them to monitor it 24/7 if I just carry around a little box. I asked the doctor, "Is sight necessary in any way to do this?" I was assured not.
Being skeptical, I asked the scheduler. "Yes, of course. you need to log your symptoms as they happen."
"there's no way around it?"
"No."
"I can't have someone with me 24 hours a day."
"I don't know what to tell you."
She is leaving a note for one of the nurses who might be able to solve the problem. Otherwise, no stomach test to help us sort out the cause of my tracheal stenosis. Without being able to pinpoint the cause, I won't be able to avail myself of the permanent solution.
People speak about the privileges I sometimes receive as a result of my disability – reduced bus fare, cutting ahead in lines, access to free audio books, extra time on tests, or being able to have a dog in a no pet apartment. I would relinquish them all, even the dog, to also rid myself of events like the above. Trust me when I say that lower bus fare is not compensation for the ongoing battles I must wage in the Blind v. Medical World war that is consuming my life.

Trade-Offs

2012-02-15T22:09:00.000-08:00

I'm certain you are familiar with having to balance work, family, and social obligations, sometimes having to sacrifice one for the benefit of another. In my life, these trade-offs can be frustrating both because there are no good choices and outsiders do not comprehend the situation.
I have a small yard that has been fenced so my dog can go relieve herself without me needing to accompany her. This is a way to save a little bit of energy. A couple of times a week, someone comes along and scoops up all the solid waste and disposes of it. While not ideal in that odiferous items are left to perfume the air that other residents of my apartment complex must inhale as they pass, given my circumstances, it is the best I can do.
Should I be doing better with my guide dog? Yes. Blindness does not mean I cannot scoop after my animal. (In San Diego, I am exempt from having to do so by local ordinance, but that has little baring on whether or not a blind person has the capacity.) If I had typical health, I'd be ashamed of myself for leaving her droppings to intrude upon others.
My onsite property manager is not pleased with me. My scooper was on vacation and I let dog droppings sit for about six days. There was a mini, excuse the pun, stink over it because of the "smell" and in my opinion, because I got him in trouble. The multitude of cats living in my complex relieve themselves wherever they wish and smokers fill the air with toxic clouds without sanction. I, however, can't leave some droppings for less than a week.
I know I should be doing better. I wish I could do better. An internal debate rages that goes something like this:
"Jen, can't you just take her out on a leash four times a day?"
"Sure, but I'd have to give up something else. What should I sacrifice?"
"Don't go out with friends. Give up one of your discussion groups. Stop some of your exercising. You have choices."
"Those all contribute to my sanity or my physical health. If my life is reduced to what I should do, I'm pretty sure I wouldn't want to be living that life."
"You are a drama queen."
"Yeah, probably."
This is when I usually decide I'm pretty selfish and at its core, my choice to leave poop to scent the air so I can do things that make me happy is self-centered. Still, I cannot bring myself to handle the situation in any other way.
Situations such as this arise frequently leaving me feeling like I'm failing not living up to some internal standard of what it means to be a "good" person. Apparently, good people put all responsibilities ahead of everything else. Apparently "good" people bring new meaning to the word selfless.
I fail at being a girl because I don't engage in typical female behavior: I avoid hairspray, refused to wear lipstick even for my sister's wedding, think gender roles were made to be broken, and wouldn't know lady-like behavior if it bit me on the backside. I fail at being a disabled person in that I'm not grateful the appropriate amount, tend to be demanding, and refuse to fit the expectations others have of what it means to have my disabilities. These are things I'm almost proud to fail at.
Failing to be a "good" person, on the other hand, bothers me more than I want to admit. I guess it's because I actually want to be that "good" person and cannot manage it because I, depending on your perspective, either lack the selflessness necessary or do not have the physical ability. In either case, I am left feeling inadequate in one of life's most basic endeavors.

Safety First

2012-02-15T21:42:00.000-08:00

This past fall, my kitchen sink became clogged and after a lot of back and forth, my onsite manager and one of the maintenance people fixed it. While they did so, I went about my business in another room. when the onsite manager left, we had this conversation:
"Did everything from under the sink get put back?"
"It's all back under there, but I'm not sure it is in the right place."
"That's fine, just as long as it's under there. Last time I forgot to ask and a plunger almost got me in the eye."
"It's all back under."
"Great. Thanks."
I was sitting at the computer and noticed my dog was obsessed with the kitchen. Finally, I went to investigate and discovered the trash, which is usually under the sink, was in the middle of the room. I'd thrown away grapes, which are toxic to dogs, so I was upset. Then I discovered some other chemicals were left on the floor as well.
I walked out of my kitchen and called the manager, who didn't answer. I then sent an email saying that I had found some stuff in my kitchen that hadn't been put away and I was concerned that in trying to find everything, I might hurt myself. I asked that he come back and help me locate everything.
He informed me that everything had been put back. I got the offsite manager (his boss) involved. It became a big mess. Later that month, I refused to let the onsite manager enter my apartment because if I couldn't rely upon him to know if stuff had been put back, I couldn't trust I was safe after he left.
I actually told the offsite manager that I'd allow the onsite manager in my home if he took responsibility if I was injured. It was the offsite manager's choice to leave it that only one person of his choosing would deal with future maintenance issues.
My onsite manager seems to be angry with me. He and his husband now both walk past me without saying a word, which I find to be a wee bit creepy especially since the husband once grabbed me and kissed me in the street. I am also unable to reach the onsite manager via phone. I am no longer included in complex social events, which is easy for them to do since they are posted on signs. It is clear I am not popular.
Here is my problem: I'm not trying to do anything but STAY SAFE. Whatever has to be done to accomplish that should not be an issue for anyone. Yet somehow I am the "bad guy" and while I will stay safe, I will pay for that safety via social sanctions. Yippy.

Not Female. disabled.

2012-02-08T18:41:00.000-08:00

Last June, I started a co-ed discussion group on bisexuality in part because the only venue of that type was male-dominated in a way that made women uncomfortable and had proven to be unfixable. Unfortunately, the new group is not attracting women, so I finally took three deep breaths and began organizing a female-only version.
Women-only spaces make me ill at ease in the same way I feel slightly weird when I realize everyone in a room is white or heterosexual or LGBT or from a middle class background or whatever. Forming a group that is explicitly homogeneous on a particular dimension has forced me to examine my discomfort and shockingly the explanation involves disability.
When women speak about the importance of gender specific spaces, they reference times in their lives when they felt limited by a patriarchal system, silenced by men, or stripped of their personhood reduced to an object. Women-only groups allow females to express themselves freely without the constraints male-dominated society imposes. It is about breathing a sigh of relief because all the "crap" is suddenly able to be set aside and the business of being oneself embarked upon without the usual fetters.
All my life, disability has been the single factor most likely to shape my experiences. It is the thing people react to, the trait by which others define me, and by necessity mentioned often. My female gender, on the other hand, is not something people discern nor is it a regular topic of conversation. Its significance is limited to the bathroom I am directed to or the gender specific moniker used.
I have experienced a myriad of limitations placed upon me by others, from expectations of achievement to opportunities offered. At every turn, the judgments of others have been barriers between me and what I want. They have almost entirely been a factor of my disability not my gender. It's been "Blind people can't do physics" not "Women can't do physics."
People do not attempt to silence me. Instead, there seems to be this assumption that I lack a voice as if I have no thoughts or words to be expressed. Rather than devaluing my perspective, I am presumed without opinion.
My very personhood has been stripped away not because I am female and therefore an object of sexual desire but because I am perceived as my disability. I am blindness with legs and feet.
The bottom line is that I don't experience the world as a woman, which means I have trouble identifying with the reasons women want spaces to themselves. It would seem reasonable that I could at least identify with the desire to have a space free of oppressive forces, but even the idea of a disabled-only space makes me twitch.
I believe this inability to even empathize comes from the fact that I have assimilated into able-bodied culture to such an extreme that I taken it on as my own. It might be flawed, oppressive, and negatively impact my life, but for better or worse, it is the world I inhabit. Instead of creating spaces where I can escape its oppressive forces, I want to transform the bigotry.
Furthermore, I have found a way to construct a life that rejects the limitations, denial of personhood, and lack of a voice able bodied culture would impose upon me. For example, while strangers may assume I do not engage in independent thought, this blog allows me to use my words to articulate my experiences in the hopes of redefining how people perceive disability.
Eleanor Roosevelt once said, "No one can make you feel inferior without your consent." I guess the totality of my life experiences have brought me to a place where oppressive forces can do their worst truly impacting my life in negative ways, but I refuse to give them the power to limit anything within my control such as my self-image and ability to express myself.

Not Minority, Not Majority

2012-02-01T16:10:00.000-08:00

I had a conversation with a woman of color that has left me annoyed not with her specifically, but with the whole way our society conceives of prejudice and marginalized group status. It went something like this:
I asked, "When a person of color comes into a room and sees me, do they see me as a member of the majority culture?"
"Yes."
"I'm not recognized as a member of a marginalized group?"
"No."
On my walk home, I made a sort of mental list. Before I share it, I want to emphasize the fact that I don't believe in comparing types of oppression, saying one is "worse than the other, nor do I think I understand what it means to be a member of a racial minority. This was just a quick mental exercise.
People of color are thought to be inferior.
Add child-like and dependent and you have the attitude disabled people face daily.
When a person of color gets a job, promotion, or into a great school, it is viewed as aresult of affirmative action.
Same with Disabled people.
People of color are discriminated against in housing.
Um, us too.
People of color, especially men, are viewed suspiciously as if they are about to commit a crime.
Disabled people, on the other hand, are often thought to be contagious and therefore given a wide birth. Not the same, but...
Poor women of color are judged for having children with the posed question being, "How can you have another kid if you can't take care of the ones you have?"
Disabled women are asked, "How can you havr a kid? You can't take care of it."
People of color were taken from their homes and enslaved.
Disabled people were just institutionalized and forcibly sterilized. Don't even get me started on sheltered workshops.
Because disability is perceived as a result of a difference linked to an inability, it is not given the "status" of marginalized group membership such as race, gender, sexual orientation, or religion. Lack of this recognition of marginalized group status places disabled people in a unique position for we are not seen as members of mmajority group culture by members of the majority and we are not seen as members of a minority by other minorities.

On The Fourth Day of Christmas

2012-02-01T16:09:00.000-08:00

On the fourth day of Christmas, the universe gave to me four consecutive illnesses to start out my new year. First there was the virus. then there was the bacteriological upper respiratory infection I was susceptible to because of the virus. Next, there was the infection in my tooth/jaw requiring the first root canal of my life. Finally, to complete the quartet, I had another bout with the same virus which appear to be lingering like the proverbial houseguest that won't leave.
The first thirty-one days and counting of 2012 have pretty much passed in a blur of coughing. My dog has been neglected. My life has been neglected. This blog has been neglected.
At a certain point, you have to just give up on the "When I feel better, I'll" thoughts and jump back into life. For February, I've adopted this quite possibly entirely too optimistic approach. I'm taking bets on whether or not it succeeds.

Being the Observer

2012-02-01T16:02:00.000-08:00

[I wish I could place this entry in December because the events occurred then and it completes the month's theme. Anyone know how?]

It isn't often that I am able to observe an unfamiliar disabled person as they interact with a stranger. On one of my flights traversing the country, I was in the perfect position to watch such an interaction.
Let me paint the picture. I was sitting in the window seat of the bulkhead row and two men were to my right. The man in the center seat clearly didn't have a physical disability as I heard him walk onto the plane. I didn't know why the young man was sitting in the aisle seat, but it didn't particularly matter one way or another as the three of us barely interacted.
Then, we had a very rough landing with a lot of bouncing. Center Seat Man turned to Aisle Man and asked, "Do you need help?"
"Um," says Aisle Man.
"It's not a problem. Really," says Center Seat Man.
"I sort of need to be pulled up," says Aisle Man.
Center Seat Man aids him with a "There you go, buddy." I mentally cringe because buddy is the male equivalent of sweetie which I hate getting from total strangers.
Center Seat Man is being very jocular and offers any other help needed. The more he offers, the quieter Aisle Man becomes.
Finally, Aisle man comes out with, "the landing made my shoe fall off." (I still haven't figured out the logistics of that happening.....)
The shoe is fixed. Slowly, Center Seat Man's jovial chatter peters out and the interacting stops.
Throughout the exchange, I could practically taste how Aisle Man, who turned out to be a wheelchair user, was feeling. I could hear the hesitation as he tried to figure out if some strange man could help or if it would make matters worse. I could sense his reluctance to seek help. I could tell he wanted to pretty much be anywhere but there.
Aisle Man's discomfort was as familiar to me as my own bed. Watching another dealing with those emotions was instructive. In fact, it has changed how I approach some aspects of seeking help. Perhaps I should watch more disabled people cope with the general public, because it's almost more interesting than analyzing my own interactions.

Letter from Camille to Santa

2011-12-21T15:47:00.000-08:00

Dear Mr. Claus,
I know you can see when kids and dogs are naughty and nice. The other day, a boy was really nice and I want you to make sure to give him an extra cool gift.
Mom was walking me to get my nails trimmed. (Yuck!) When kids notice me, they want to play and I have to work extra hard to do my job. When a boy walked up behind me and Mom, I was worried, but he just wanted to tell Mom that I'm cute. (Of course Mom agreed.)
Then he told Mom all about his dog. When we got to a corner, he told Mom she should move over because there was a puddle. I really appreciated this because I don't like getting my paws wet.
Now, Santa, I have to confess I then did a bad thing. I didn't stop at a curb and Mom had to make me do it over again. The boy stood in the street and helped me do my job by watching for cars.
Please make sure to put something extra good in this boy's stocking. And, Santa, don't get too mad at me for making a mistake at my job. I try really, really hard.
Love,
Camille

The Letters G and H

2011-12-15T14:42:00.000-08:00

This week's incident is brought to you by the letters G and H for the Gentlemen who tried to Help me.
Normally, I take a bus that leaves from my block, but when I wish to go to a different part of San Diego, I need to walk about half a mile to another stop. It is pretty much a straight course and I cannot conceive of something easier.
Walking the route, I became confused at a particular intersection. Part of the problem was an annoying dog. Part of the problem was my tired, fuzzy brain. Part of the problem was my inability to sort out the traffic sounds to understand in which direction I wished to proceed.
I was approached by an older gentleman who'd been hanging out with his friend about fifteen feet away. He offered help. I said I thought I was alright, but I didn't even convince myself because I was still trying to sort everything out.
As I tried to parse my surroundings, he kept offering help, so I finally agreed. My suspicion was that he wouldn't give me the time and space to figure it out for myself, so I took the path of least resistance. He wanted me to cross in a direction I was not trying to go, which I explained to him.
I thought we were all on the same page and crossed with his friend following behind.
I walked to the next intersection and something seemed off, so I pulled out my phone and used my navigational ap. I was not where I had expected and wasn't certain how to achieve my destination, so I asked a man walking past. He gave me a clear indication of my location and a simple set of directions to follow. Though I missed my bus, I made it to my stop.
I have no idea how I went in the wrong direction. It could have been me. It could have been the gentlemen. Given that I crossed in the way they wanted me to originally, I suspect it was a case of them thinking they knew what was best for me.
One noteworthy fact is that I was not my polite self to the gentlemen, but to the man with clear directions, I was graciousness personified. Sometimes how I am treated profoundly effects how I behave. Another indication I'm human.

Jen, a Curb and the Skateboarder

2011-12-07T21:41:00.000-08:00

The holiday season is particularly insane this year and I am unable to write long, probing entries. Instead, I will endeavor to take note of something that happens to me, relay the specifics to you, and let you think about it.

Guide dog at my side, I was walking down the street in my neighborhood and came to a curb. The dog stopped. I didn't. I went over the very high curb and somehow gracefully landed gently on my butt so that I was sitting on the curb.

Someone who knows me slightly from our mutual love of a particular musician came up behind me on his skateboard. "Are you alright?"

"Yeah. the dog stopped. I didn't. I'm a klutz." I stood up and got back up on the curb waiting to cross the street.

"Are you sure you're okay?"

Yeah, thanks. Fine."

"So the curb is a little bit in front of you and really high."

"Got it. I'm good. Really."

While standing in the middle of the street, he continues to describe the curb, advise me to be careful, and so forth. Finally, since his presence in the middle of the street makes it very safe to cross, I do so. Upon reaching the other side, I say, "There. I did it. You weren't going to leave until you saw me do it, were you?"

He says no and we both start walking. He tells me he's going to get a taco, I say yum, and he says he'll see me later at the show.

The end.

Life's Perversities

2011-11-30T22:11:00.000-08:00

The twists and turns of the human psyche are sometimes truly weird. Today I was about to put lotion on my right calf when I noticed I had a rash. Later, as I mentally inventoried my closet to select appropriate clothing for a panel presentation, I dismissed a skirt without a second thought because of this rash.
I have scars all over the place including my legs and I never think twice about shorts or skirts. One small, temporary rash and I'm reaching for concealing pants. Objectively, it's... screwy.
I think it's fascinating what we integrate into our self concept and thus do not question versus the things that throw us for a loop. Often the little things are the mountains while the truly huge
things have shrunk to molehills.
Known as schadenfreude, humans can take great joy in the fact that they are not enduring the tragedy of another. How come we cannot find the same solace when it comes to our own lives? Sure, I have a rash on my leg, but in comparison to the other things I've managed to integrate into a positive body image, a few red bumps are nothing.
Yet even as I write this and see the logic behind my words, I cannot help but think, Yuck. Nobody wants to see such an ugly thing." I've definitely proven I am a mere human with the same perversities as the rest of our species.

Adding It Up

2011-11-22T16:40:00.000-08:00

Over the past couple of years, as I work to sort out friendships and find some sense of community, I've learned a few things.
1. Friendships need to be equal, balanced, healthy, and reciprocal.
2. Having friendships that aren't these things is ultimately bad for me.
3. I cannot nor should I try to "compensate" my friends for the "hardships" of being friends with me.
4. As a friend, I actually am enough. In fact, in some ways, I sort of rock.
and then there's what I've figured out about social stuff and disability.
1. Most people cannot se past the fact of my disability to see the potential of me as friend.
2. Nothing I do will make me seem more or less tempting as friendship material to someone who cannot see past the fact of my disability.
3. A large chunk of those who see past the fact of my disability to me as a person are interested in friendship because I represent (to them) something as broken as they unconsciously see themselves.
4. a shockingly small number of people see me as a potential friend and also see me as a competent, vital adult.
5. All of this is because of how the world thinks about disability and how that has effected the probably unconscious thoughts of individuals.
If you add up the first and second set of things I've learned, you come up with this: I am going to have a very hard time finding friends, it is something I cannot change through how I behave, and it will lead to social isolation.
I learned an interesting fact last week. It seems that people outside a marginalized group are not very good judges of what it is like to be a part of that marginalized group. Outsiders are not able to assess degree of prejudice, significance of negative stereotypes, or amount of "suffering" marginalized group members "endure" because of their group status. In other words, people who don't have a disability equivalent to mine are not going to get it.
There's this great phrase: Disability is the responsibility of the disabled. For example, I get a print piece of mail. It is not amongst the acceptable options to call up the sender and demand they do something about it. Instead, I'm suppose to find someone to read it to me. Similarly, if I am amongst a group of people who are interacting based on sighted people rules, I am expected to find a way to play by those rules or accept that I will not be included. Should people in the group actually alter behavioral patterns so I can participate, it is done as a kindness not as a "no brainer" because of course you play by rules everyone can follow.
So, people are unlikely to see my social isolation as an artifact of disability and if they do, chances are they see it as a problem I should fix or tolerate because I'm the one with the disability.
Here's the funny thing: if you look at the social model of disability, where disability is a factor of how the world works, then the very world that is the architect of my situation refuses to do anything to deal with it. Should you look at disability from the medical model, where functional limitations based on physical difference cause disability, I am still not to blame for my circumstances, yet I am left to cope with their impact.
Now here's where I don't know if I'm being fair or reasonable. I'm angry and frustrated, and disappointed in the people who express affection toward me. The vast majority have consciously or unconsciously left me to deal with all of this on my own, yet supposedly care about me and my happiness. They will guide me around obstacles, read menus, and put up with guide dog fur in their cars, but they will not do anything to alleviate what I consider possibly the most fundamentally distressing consequence of disability in my life – soul eating social isolation.
Moreover, any efforts on the part of others to mitigate the situation have to come from a place of love and understanding not obligation and pity. I cannot beg, offer brownie bribes, or barter bread for behavioral changes. People either get it or they don't. they either do something or they don't.
In the past year, I have pruned friendships that weren't working well. I have tried to back off from the friends I have retained because constantly asking for time and attention finally struck me as unhealthy. Should I go through another round of trimming based on those who understand and help mitigate my isolation and those who do not, I'll be down to about four friends. I'm pretty sure that's not enough for an extravert, even a shy extravert.

Cherry Picking

2011-11-16T22:02:00.000-08:00

Okay, other disabled people, I have a question for you. Have you ever noticed that non-disabled people in your life seem to pick and choose what aspects of your disability they will and will not deal with? This is the friend who will come over and visit, but not go out because finding a wheelchair accessible restaurant is just too hard. This is the person who will understand what it is like to encounter an inaccessible building, but will not understand how socializing can be inaccessible. This is the individual who knows all about your deafness and moves heaven and earth to accommodate it, but thinks you should maybe just try harder to be less depressed.
Society creates disability. Society makes dealing with the disability the responsibility of the disabled person. Our loved ones further add to the situation by cheery picking the consequences of our disabilities they do and do not wish to cope with. In this age of unconditional love, disability is somehow outside the bounds of what those who love us are expected to handle. It's somehow too much to ask or expect.
I guess I've missed all the chances in my life I've been given to "decide" if I wish to deal with this or that aspect of my disabilities. Maybe the offer was tendered in print?
Should such a proposition have been made, for my entire adult life, I would have replied that disability is a package deal and to separate it is akin to selling a house one room at a time.
Lately the conditionality with which those around me "accept" my disabilities has begun to irritate me in a way I cannot dismiss. Maybe if the conditionality was explained in terms of their shortcomings. "Jen, I want to drag you to this movie, but I don't think I can describe it. What can I do?" Instead, people just conveniently assume, despite me saying the contrary, that I can't go to movies. Or maybe if it was broached forthrightly. "Jen, what do we do about my other friends who don't know how to interact with a blind person?" Unfortunately, in its place, I'm left to fend for myself.
More and more, I've been feeling like one of those boxes you get at a yard sale or auction. You bought it for the cool bowl on top. When you get it home, you sort through and set aside what you want and what you will discard.
Well, I've decided I'm no longer a yard sale box. I haven't yet figured out how you go about manifesting such a decision in the real world.

Cane or Canine

2011-11-09T14:02:00.000-08:00

Changing from cane to guide dog (or vice versa) often elicits questions that boil down to why one method of navigation is considered superior to the other. Ultimately a matter of preference, there are some aspects worth explaining and since I have just gone from long white stick to something that likes to eat sticks, I thought I'd put words to my choice.
A blind person moving through the world must attend to:
1. walking in a straight line
2. stationary obstacles
3. moving obstacles
4. the route being followed
5. geographic location within that route
6. any and all changes that might give warning of unexpected hazards
For me, simultaneously keeping track of all these elements of travel is mentally and thus physically taxing. Miss catching one of the six balls and catastrophe results. For example, should I be focused on walking in a straight line and not hitting anything, I might zone out and miss a landmark essential for my route. Should I have all those navigational course elements in my head, chances are I'll forget about moving obstacles. Anyone who knows me is aware of the fact that getting my attention while I'm walking around is next to impossible. I literally zone out to the point that I don't hear my name being said. Forget trying to have a conversation or toss off a casual greeting while walking past someone. All my mental powers are required to safely navigate my course.
On an unfamiliar route, a dog can attend to walking in a straight line, avoiding stationary and moving obstacles, and unpredictable hazards. The handler's job is primarily to focus on their location in the route being traveled. Some attention is necessary to encourage the dog, correct mistakes, and give commands, but it is mostly routine.
On the other hand, when you get home, your cane goes in the corner and stays put until you are ready to use it again. A dog requires food, water, potty breaks, petting, love, praise, entertainment, and grooming. On the other hand, your dog will wag their tail at you and lick your face whereas a cane is a singularly unresponsive cuddle buddy.
It all boils down to the cost of cane travel versus the cost of maintaining a dog. Each person has a different bottom line for both. In fact, it is much like manual versus automatic car transmissions. I've seen people have heated arguments about which is superior and the same can be said for those who prefer canes versus those who want a four-footed guide.
For me, a dog grants me independence. Oddly enough, I really didn't appreciate that fact with my first dog. (I had a very different life then including a significant other which probably caused me to be too dependent on people.) It was only with my second dog, Emmy, that I began to see how my life could change. Suddenly, I could go places that had complicated routes and reach my destination not ready to fall over from fatigue. While I knew this truth in a theoretical way with my first dog, it's practical application was not obvious until Emmy.
The challenge now is to fully realize the independence this dog offers me. With talking GPS, I can literally go to an unfamiliar area and find an unknown destination. Unfortunately, I'm a bit of a wimp and have a tendency to fear the "what if"s I can imagine. "What if I get tired and can't think clearly so I get really lost? What if my phone battery dies? What if the dog gets hurt? What if the dog does something stupid? It really all boils down to what if I fail? Somehow, in my mind, blind people aren't allowed to fail. Or, well, at least not this one. This is a clear case of disability – blindness and chronic fatigue – not being my problem, but rather my own uniquely shaped mind.

Follow Up

2011-11-02T22:03:00.000-07:00

I wanted to finish the story of my class Power, Privilege and Visions of Justice.
After the first meeting, a cooling off period was in order, so I waited until Friday to take any steps. Through the point person at my LGBT center, I got an electronic copy of the syllabus and Later the instructor emailed me electronic copies of the readings.
Still quite upset, I tried a couple more days of calming down, but it didn't work. Finally, I emailed the instructor thanking him for the readings and expressing my frustration with how the class was conducted. I bluntly asked how I could learn about privilege from someone who created an exclusionary classroom environment. We emailed back and forth, but he continued to feel the only issue was the readings and their accessibility whilst I thought there were broader issues at play. He wanted to talk about how he was used to Disability Services handling everything. I wanted to discuss how his actions reflected able bodied privilege. Talking at cross-purposes never works and this case was no exception.
My other email exchange had a far more productive outcome. I again contacted the point person at my LGBT center and her almost immediate response was a request to talk about it. In that phone conversation, I found someone to add to my list of people who have an open mind and are willing to learn. It looks like she will be an ally in any other future efforts I undertake to educate my LGBT center on issues of accessibility.
Armed with the syllabus, I then began to use google and other methods to search for the readings in alternative formats discovering that less than one third were available. Given a couple of weeks, I might have managed to work things out, but within the time constraints of a 6 week course, I felt it was not a reasonable endeavor nor was it a reasonable accommodation for my LGBT center to make.
I attended one more class, to get a sense of how the readings would be used and decided they were too central to the discussion for me to simply skip them. I explained this to both the instructor and the point person.
I have learned a couple of lessons from this experience. First, simply telling someone a blind person is going to be in their class is not enough. They need to be educated as to what that means. Explicitly. My mistake was to assume it was clear. As one friend has often told me, "Educate. Clarify. Remind."
Second, don't assume who will and will not understand disability issues. My surmises in this situation were totally off.
There have also been a lot of reminders of lessons I should have learned long ago. When you identify a problem related to access, the next thing out of your mouth should always be the solution. The formula is identify the problem, try to relate it to something familiar to the target individual, and give a preferably simple solution.
It has also become clear that I need to cultivate calm. Educate from a place of calm. Meditation here I come.

Power, Privilege and Visions of Justice: A Tool of Oppression

2011-10-26T18:12:00.000-07:00

Today I am going to simply describe events as they unfolded last night endeavoring to be objective. Wish me luck.
My local LGBT Center was sponsoring a class entitled "Power, Privilege and Visions of Justice." I was intrigued, so I sent an email saying I'd like to attend and asking that the instructor be told a blind person would be in the class.
Two weeks later, I attend the first class. As we are waiting for things to start, people are handed something in print. I am given nothing and told nothing. Class starts and a clipboard is circulated. I never receive it.
Going around the room, we introduce ourselves. I know when to speak because I know the person sitting directly next to me and can cue off of her.
Next, we engage in an activity in which we are to raise our hand if we agree with this or that statement. At the appropriate points, I dutifully raise my hand without any notion of what my fellow classmates are doing.
Asked to give examples of oppression, I mention that The Center's prostate support group was listed as a "gay men's" group and point out bisexuals aren't included. I am told we will not be discussing such things in this class.
After being directed to read part of our syllabus silently, we are asked a series of questions as feedback so the instructor can decide about certain aspects of the course. Then we are told our assigned reading will be at the center's desk beginning the following morning. The expectation is that we will come back to pick it up.
At the end of class, I wait until the room is empty before approaching the instructor. First, I make sure he was told I would be in class and when I learn he knew, I tell him all the aspects of class that bothered me. It was as if he had never considered any of it. His only thought was that he might have to read the materials aloud to me. Or, well, the parts he thinks are important.
I'm thinking about not returning to this class.

Left Out

2011-10-19T14:33:00.000-07:00

This is becoming ridiculous. Utterly. Ridiculous. I just read an email promoting a concert that should have filled me with longing to attend. Instead, when I saw the "no electronics and no talking" venue rule, I immediately thought, "Excuse me? Blind people might need talking to describe visual aspects of the show and we might need our electronics to get there or to read while we wait. Are you planning on banning books and newspapers too?"
It would seem that I cannot avoid noticing policies, procedures, and language that excludes disabled people. Everywhere I turn, everything I hear, the ways disabled people are excluded have suddenly become impossible to ignore.
Here are some that happened in less than 48 hours:
1. Everyone in the world is posting photos to Facebook without any descriptive tags. The latest craze is to "repost" those you like, again without descriptive tags..
2. My local radio station of choice is giving away Hawaiian vacations. To enter, you must input words into an inaccessible form on their website.
3. A musician who had to have seen me enter the tiny room as well as get up and use the restroom didn't provide context for visual gestures etc in his patter.
4. A list of the "civil rights movements" of the recent past included everything except the disability rights and immigrant rights movements..
There has never been a time when I did not see such practices, but suddenly they have become commonplace. While it is conceivable that there has recently been an exponential increase, it seems more likely that I have somehow changed. Honestly, it would be great to change *me* back.
Noticing exclusionary practices when you are a part of the excluded group is upsetting. The most benign interpretation is that you never entered the mind or minds of those shaping the procedures. For a while, it is possible to believe that is exactly the situation. Over time, faith erodes and you begin to wonder how anyone can not consider disability with such persistence. The question running through your mind becomes, "Is this willful ignorance?" At your most skeptical, you contemplate global conspiracies to eliminate people like you from the human consciousness. After all, out of sight is typically out of mind and what can't be seen can't be disturbing.
When your perception of such circumstances increases, it is akin to constantly bumping your injured thumb on EVERYTHING. Metal ease is no longer possible.
This is in fact impacting my quality of life. Literally. I am trying to make peace with the continual bombardment. Perhaps if I assume I'm going to be left out I can find some sense of belonging. I am, at least, in good company.

History Lesson

2011-10-12T16:10:00.000-07:00

This week I offer a pair of pieces that have grown from my experiences with the Occupy Movement.

To get yourself in the appropriate mood, imagine yourself crammed into one of those chairs with desk attached as a person stands before the room with a blackboard as backdrop. a
In 1973, Congress passed the Rehabilitation Act which included Section 504 containing arguably the most ground-breaking sentence in terms of disability rights. a
“No otherwise qualified handicapped individual in the United States, shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.”
Forty one words that would change the face of employment, education, and public access for the then approximately 35,000,000 disabled people in the United Sates. aFour years after the passage of the law, the Secretary of Health, Education and Welfare (HEW) had yet to sign the regulations that would allow for implementation and enforcement. a
Frustrated passed endurance and schooled by their struggles over more than twelve years as well as the efforts of other civil rights groups, disabled people took action organizing protests at ten sites across the country, including Washington DC and the federal building in San Francisco. aWhile the other nine protests ended in a couple of days, the one in San Francisco stretched twenty five days. a
The occupation in Washington DC is particularly of note because of the reason it was unable to continue. aThe Secretary of HEW Joseph Califano, who was being pressured to sign the 504 regulations, ordered no food or medicine be allowed into the building. aCalls to the press to publicize this decision went unanswered and the protestors were forced to leave. a
UC Berkeley's campus in the 1960s is usually acknowledged as the birthplace of the disability rights movement in the United States. aFrom one man in a wheelchair (Ed Roberts) matriculating to the formation of the Physically Disabled Students Program to the founding of the first Center for Independent Living in Berkeley, the Bay Area was the "cradle of disability rights." aBy 1977, the activists were educated, savvy, and determined. aThey were also done with segregation and their second class status. a
I want you to imagine the situation for a moment. aA bunch of wheelchair users, blind people, Deaf people, people with developmental disabilities, and others with disabilities set forth to occupy a building that lack simple things like accessible bathrooms. aSome needed assistance to eat, dress, or perform bodily functions. aSome were dependent upon respirators. aMany had medical conditions and extended occupation presented a major health risk. aStill, one hundred and twenty five of them stayed for twenty five days. a
Fortunately, the city of San Francisco was there to help and many occupiers credit their ability to stay to this support. aThe Mayer sent over mattresses and portable shower heads. aGrocery stores donated food and the Black Panther Party cooked it. aLabor unions offered support. aSeveral priests stayed with the occupiers to provide physical assistance. aWith the support of an entire city, an "army of cripples" managed something not seen before or sense.
To keep the occupation going, people were assigned tasks and consequently learned new skills. aAs had been the practice within the movement for some time, disabled people helped each other with the blind carrying out physical acts while wheelchair users might read print materials or be sighted guides. a What came into being was as Judy Heuman one of the organizers described it, "a little community" with transformative power. a
One day, a group of occupiers played "I Wish" and a young woman who used crutches said that a month ago she would have wished to not be crippled instead beautiful, but now she knew she was beautiful. a
Eventually, it was decided that a small contingent must travel to Washington and directly lobby Joseph Califano and if possible President Carter. aA DC labor union provided a moving-type truck to transport the activists around DC. aA wheelchair user would ride the lift up and wheel into the back of the truck. aWith everyone inside and the door left open slightly for ventilation, the wheelchair users would hold tight to the chairs ajacent so that instead of banging together around turns or at stops, they at least shifted in a mass. a
The goal became stalking Califano from vigils outside his home to "educating" the neighborhood children to appearing outside whatever building he happened to be inside. aA candlelight ceremony was held outside President Carter's local church. aUnfortunately, the protesters were unable to meet with anyone actually able to help.
Then, suddenly, Califano signed the regulations and in hindsight he sees it as one of his more notable acts. aOddly enough, it took two days for the San Francisco federal building occupiers to disband. aSome say it was because they wished to scrutinize the regulations to make certain they had not been watered down. aSome say it was so they could clean up the mess they'd made. aSome say it was because most of them finally felt like they'd found "their" community and didn't want to leave it for a less hospitable world. a
A landmark moment in U.S. protest history, few people know of the occupation of a federal building by one hundred twenty five disabled people, yet it is incredibly relevant today. aAs Occupy protestors gather, march, sleep, eat, and work to change the world, I hope each remember that disability is the one marginalized group joined without warning or choice. aLet disability matter now so that down the road those of you who become one of us inherit an inclusive world. Don't leave us out because tomorrow you do not want to be one of those left out.

Below are a list of materials I reviewed to refresh and expand my knowledge of the events.
NPR's coverage of the 25th anniversary of the 1977 events is here.
An article containing a great deal of historical context as well as specifics to the 1977 protest is here.
I also skimmed someone's paper for more context and you can find the PDF here.
In general, I highly recommend:
Joseph Shapiro, No Pity, People with Disabilities Forging a New Civil Rights Movement
(New York: Three Rivers Press, 1993),
And Wikipedia has a very comprehensive entry here.

Inclusion

2011-10-11T19:17:00.000-07:00

This week I offer a pair of pieces that have grown from my experiences with the Occupy Movement.

At the start, I want to make it clear that I am completely behind the Occupy Movement and with all my heart hope it succeeds. I have never experienced such an open, engaged, and collaborative group of people while at a march or protest. I encourage you to find your local Occupy Event and go forth to participate. My instincts tell me that this is the beginning of something that will shape our lives for decades to come.
A couple of weeks ago, my journey began with a question: how are disability issues being framed in the context of Occupy Wallstreet? Googling didn't yield anything interesting. Neither did poking around various websites. Independent news media didn't seem to realize disability even had a place within the movement. I kept looking.
Meanwhile, a Declaration of Grievances was released and a sentence jumped out and smacked me.
"They[corporations] have perpetuated inequality and discrimination in the workplace based on age, the color of one's skin, sex, gender identity and sexual orientation."
I was floored that disability was not included in this sentence, until I thought about it. Among disabled people who can work, there is a sixty percent unemployment rate. I suppose when disabled people aren't likely to be in most workplaces, they are forgotten when it comes to inequality and discrimination.
Unfortunately, disability is not a magical shield offering protection from the economic reality currently confronting most U.S. residents. We face foreclosures, lay-offs, loss of health insurance, increases in children's college tuition, and salary cuts. In fact, about the only area where we have some protection is education for state vocational rehabilitation services assist with tuition and related expenses IF YOU QUALIFY.
then there are the economic realities specific to disability. The so-called "safety net to protect our vulnerable members" has holes through which you can drive a tank. Our benefits are being cut, cost of living increases are a distant memory, and qualifying for assistance has become harder than ever. Part of the 99% and part of this country, we are somehow still not part of the discourse.
When Occupy San Diego began to gain momentum, I started to look for signs that it was considering the needs of disabled participants. Finding none, I emailed a friend involved in the General Assembly and voiced my question. The GA had considered physical access to the occupation site and were open to other input, which of course I gave. From the changes I saw on the website as well as her feedback, I know my concerns were heard.
I went to the first march hopeful that while the national movement was possibly not including disability, at least my local part of the movement was being clueful. That attitude lasted through realizing bull horns obscure lip-reading. It survived the person with me and standing next to me being told, "She's so brave for coming here." It did not, however, last after the third time steps were a part of the march route.
I have yet to be able to get back to Occupy SD since it isn't precisely something I can do on my own. My contact tells me they want to educate themselves on able-bodied privilege and I hope I can be a part of that process.
In the interim, I continue to seek out press coverage. And I continue to be frustrated. Inclusive organizing principals are touted, but disability is nowhere to be found. As people speak about the various movements that have come before and helped give birth to this one, they mention King and Stonewall and women's liberation. They do not touch upon Ed Roberts, the independent living movement, or disability rights.
In fact, they do not even acknowledge the longest takeover of a federal building in U.S. history was carried out by 125 disabled people for 25 days in April of 1977. This is why The next post is a history lesson.

Grey's Anatomy of Appearance

2011-10-05T16:43:00.000-07:00

With a plastic surgeon as one of the regular characters, Grey's Anatomy has more than the average dose of appearance-related storylines. There was the woman whose face was entirely rebuilt so she didn't recognize herself. There was the husband who had become a recluse because of chronic growths. There was even a man having a face transplant. And now they've done multiple storylines involving children with facial birth defects.
This passed Thursday, I was struck by the way one doctor articulated why an infant needed surgery. In arguing for who she considered the "best" surgeon for the job, she gave a long list of all the ways the boy's appearance would impact his life from social isolation to who he took as a prom date to the job he landed to who he married. To me, it felt like a laundry list of how I know social standards of beauty have, well, messed with my life. Social isolation as a child? Check. Prom? Never went. Spouse? Still single at age thirty nine. Job? The jury is out on that one because I don't have the energy for employment.
I was struck by the difference between how people talk to me about appearance versus the way this show did. When I get frustrated by the negative consequences of the societal evaluation of how I look, people often very gently tell me I'm wrong. I get lectures on how complicated relationships are or explanations about how nobody at my age has an easy time making friends. My expectations are too high. My devaluation has nothing to do with how I look.
In less than sixty seconds of dialog, a television show pretty much substantiated every feeling I've had about how my appearance – or rather how society perceives it–has impacted my life. While painful to hear, it was also liberating because unlike what people say to me, this was akin to an uncensored opinion that nobody thought you'd overhear.
My question is this: why do people who love me show such, excuse the term, blindness when it comes to this? Is it harder for them to accept the reality I inhabit than it is for me? Perhaps it's a sort of empathy gone awry. Nobody likes to think their friend will have a hard life where people will judge them harshly and they especially do not want to share such a negative prognosis with the person who will have to experience it.
I liked the clean, clear perspective shown in Grey's Anatomy because it described reality. In denying this reality, as a society we actually further perpetuate the problem for you cannot address what you are not willing to acknowledge. Far better to find a solution than to engage in further burying our heads in the sand.
and in terms of solving the problem, there are really two choices. We either change people to fit the definition of acceptable appearance or we alter the definition itself. Clearly, I have a strong preference as to which path we take.
I find it fascinating that we teach our children to not judge based on appearance and yet we somehow do not actually change anything because those kids grow up to have the same, in my opinion warped, beliefs about our outer shells. It is one of those cases where actions don't simply speak louder than words, they in fact drown out the words.
One part of the storyline made me extremely happy. A doctor told the mother, "We're going to make this handsome felllow even more handsome." That's the kind of thinking that might have an effect.