Letter from Camille to Santa

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

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

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

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

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

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

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

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

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

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

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

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

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.

Is It?

Today you all have the power to decide! Does the following constitute discrimination and/or an illegal act?
Earlier today I received a call asking me to participate in an online survey about music in my area with monetary compensation offered as incentive. My obvious question had to do with screenreader accessibility of the online survey. Managers were consulted and they did not know the answer, so they decided to skip me as a possible subject. The man was most apologetic telling me they would use this experience to get better information the next time around.
This is not the first time I have been unable to participate in a survey because of disability and I suspect I am not the only disabled person to have such an experience. When those conducting a survey limit their subject pool by disability, doesn't that skew the results? Does anyone ever cover that confounding variable when they publish the study findings?
The broader question, though, is whether or not this is discrimination and since they were offering pay, illegal based on employment law. I suppose an additional question exists: Am I being utterly ridiculous to frame this issue in terms of discrimination and the law?

Pause for Laughter

I think everyone – me, you, and this blog – are in need of some levity.
About ten days ago, I realized my wireless computer keyboard was disgustingly dirty and set about cleaning it. There was water and sponges and scrubbing and vigor. There was also apparently some damage done.
I brought the keyboard and the computer back together and chaos erupted. Eventually, the computer just went quiet – a cataclysmic event equal to the blank blue screen – and I shut down the computer. It turned on just fine, but made no sound.
I removed the keyboard from the area, hooked up a new one, and rebooted. Repeatedly. No sound.
I used my netbook to access the desktop's hard drive and confirmed it was working. Just not talking. My assumption was that the sound card had died tragically.
Usually, such a thing would evoke panic, but this time I was rather distracted by surgery, so I just used my netbook and iPhone. It sucked in terms of speed, but wasn't that big of a deal.
Finally, I came across something I could not accomplish with the tools at hand. To burn something to cd, I dragged out my monitor and enlisted sighted assistance. We went through the process of making the CDs, then my partner happened to look down at the speaker icon and saw it was Xed out in red. She clicked. Talking happened.
I went without my computer FOR TEN DAYS because mute somehow got hit when my wireless keyboard went nuts after I graciously cleaned it.
Oy.
Now my computer just does it's usual dying routine about once a day. That I can live with because my resurrection rituals work under those circumstances.
And then there was the man at open mic. I was sitting in a chair when someone started, I thought, speaking to me. I did the usual, "Are you speaking to me?"
He affirmed that he was and asked if I was going to play the drums that night.
"Um, no. Why?"
"I can see your drumsticks."
I thought, reached under my chair, pulled out my folded up cane, put it back together, wiggled it, and said with a laugh, "Not drumsticks."
He apparently didn't think I was all that funny because that pretty much ended the conversation.

The Ugly Part

I probably shouldn’t be allowed near a blog right now. Someone should be here to say, “Jen, drop the keyboard and slowly walk away from the blog.” There is, however, nobody to do that.
This is in fact precisely the point. Disabled people, or at least this one, have trouble with both acquiring romantic partners and establishing and maintaining close friendships. Aside from the obvious consequences such as isolation, it means I do not have A Person – that one individual who I know will always be there no matter what. And, unfortunately, my particular circumstances mean I have need for A Person more than most.
I have known all this for quite some time, but last week it became a bit more relevant. Southern California went dark in a massive blackout. Exactly one person went out of her way to check on me. While it turned out I was fine, what if I hadn’t been? When push comes to shove, who will make certain I’m okay?
I suspect some of you are thinking, “There’s the Red Cross, 911, and surely neighbors will help.” Well, the power company has a list of people who might have problems if the power goes out. I got my call from them 16 hours after the power went out and 9 hours after it went back on. Additionally, in my apartment complex where I have lived for six years, not one of the twenty-five residents asked me if I needed anything.
This scares the out of me. I have a vivid and slightly pessimistic imagination, so I can come up with numerous circumstances where I might need help and can’t do anything to make that need known. I hate admitting this, but my life is pretty much a carefully stacked pile of rocks. One seemingly small shift could cause boulders to go tumbling every which way. Last week was a visceral reminder that disability both makes me more vulnerable and also limits who knows of the plight and helps.
A solution occurred to me. Once a friend told me I was “too independent for my own good.” Is that possibly the case? If I were to appear more helpless, would I thus get more help?
I don’t know about you, but I don’t want to live in a world where I have to be les than I am in order to get what I might need. I’m not even sure I’m capable of behaving in that way.
So, on behalf of all the disabled people who walk in shoes similar to mine, even if you don know us well and even if we seem like we have it all together, when disasters like floods, hurricanes, wild fire and massive blackouts occur, knock on a door and use your words to say, “Things are a little bit nuts. I was wondering if you needed anything.”
At the top of this blog, I said I should probably not be allowed to post. This entry is going up tonight because tomorrow I am having yet another surgery (minor, promise). I’ve asked people for rides. I’ve asked people to come by and check on me. I’ve reached out for emotional support because my PTSDis acting up. Mostly people have been more than willing.
As I “reap” the benefits of this support, I feel a bit horrible even speaking about how abandoned I felt last week. This blog is supposed to show the good, bad, and ugly. Guess I'm living up to the ugly part today.

Will We Learn?

When Vietnam vets began to get sick and babies were born with unexpected birth defects, nobody believed it was Agent Orange. Even today, Veterans Affairs does not acknowledge all the conditions caused by exposure to the chemical.

To put a personal face on it, the most commonly accepted theory of why I turned out the way I did has to do with my Dad’s exposure to Agent Orange. Midline facial birth defects became far more common in Vietnam’s children. I don’t have statistics for this, but I believe the incidents were also higher in vet’s children. I had a midline facial birth defect, yet the VA has never acknowledged my father’s service to his country might have resulted in my disabilities.

Then we have the first Gulf War where service members began experiencing weird medical conditions after service. They are still fighting for their conditions, such as ALS, to be recognized as service-related.

9/11 happened and many of those who ran toward the disaster to help began developing medical issues in the days, months, and years after. They still struggle to get help.

Now vets are coming home with PTSD and they are not getting the help they need.

As a people, are we really that dumb? As a people, do we want this to be how those who help and defend us are treated when they need our help and support?

You are probably thinking, “Yes, our government needs to do better. I’m ashamed.” While I acknowledge that our government ultimately must take responsibility for those harmed in the line of duty, I think it is easy to see this as something beyond one person’s ability to impact.

You may not be able to offer health care, you may not be able to beat the VA into submission, and you might not be able to change the world, but you can still do something. We’ve all heard the horror stories such as like this one and wile we feel for the people involved, we don’t really do much.

I know the brother of the soldier described in that blog and I think the fact that I keep asking how his brother is doing matters. I think the fact that I tell his brother’s story matters. I can’t do anything to fix the broken system, but I can at least make sure those impacted know people care and the stories are spread until someone who can help hears them.

Newsflash: I'm Female!

The desexualization of disabled people seems a bit overstated to many TABs. Nobody makes a public announcement that they don't find the woman in the wheelchair to be sexy. There aren't any articles in Cosmo saying, "Men who use crutches have zero sex appeal." It is one of those unspoken and often unconscious things making it impossible to prove or disprove, yet disabled people are clear that it is part of their reality.
Thanks to the unintended consequence of prosthetic eyes normalizing my appearance, I have received a lesson on disability desexualization and to my surprise discovered it is worse than I thought. In addition, it has given me new insight on womanhood.
When I became active in Bi Forum, I knew women sometimes weren't comfortable because of unwanted male attention, but I thought it might be an exaggeration or oversensitivity. AS I observed the group, I sometimes saw hyper sexualized behavior directed at other women and began to understand on an intellectual level that a problem existed. Because I was not perceived as female, I was never the recipient of such attention and it protected me for which I felt fortunate.
Bringing the issue to the group's attention, I sooner or later had to admit that I could only report what other's said not speak from my own experience. That admission made certain my words were not taken seriously. The men stripped me of sexuality then refused to listen to me when I spoke about inappropriate hyper sexuality. Only now do I see that I could not change things because of a dynamic beyond my control.
Then I began to get a little taste of what the women experienced. In the Era of Prosthetics, men not previously known to me are behaving in ways unfamiliar to me. On a bus, I was told that I was "girlfriend material." Playful and unintentional flirting caused a counterman to go above and beyond. The words "pretty" and "beautiful" have entered my ears more in the past year than in the sum total of the rest of my life. People are more comfortable. Mild in comparison to what most women encounter, I still find it disconcerting. And even if the attention comes in the form of compliments and "perks," it is still behavior based on me being a sexual object not a woman. Desexualized and denied personhood. Sexualized and denied personhood. Frying pan to fire.
One of the most complicated aspects of my new status involves flirting. It used to be that people only flirted with me when they had actual sexual interest. I was either not sexual or an object of concrete desire. It took an awkward situation with a male friend for me to discover another utterly baffling category – flirtation without intent.
How on earth are you suppose to know the difference? I guess if you grow up with it, then you probably learn to distinguish without much trouble. I, on the other hand, have no discernment skills. None. Until recently, I have never been a woman in another's eyes without them wanting into my pants.
It is a new experience I find exciting, confusing, fun, stressful and above all informative. Since I am still desexualized on a regular basis, I cannot fully understand what women encounter each day. What I have experienced in the last year is enough to make me appreciate desexualization in a whole new way.
That said, I also have learned that desexualization is alive and well. I changed not a wit in terms of behavior or self-esteem. In fact, my new eyes made me feel less attractive for a time. Yet male attention went from zero to noticeable. This is not okay.
Desexualization has become a blessing and a curse. It spares me the full force of unwanted male attention. It denies me womanhood and thus wanted romantic attention.
Here's a very female analogy to articulate how it feels. I'm that woman having excruciating menstrual cramps who is "blessed" because she knows she's not pregnant.

Living with Lines

In the last entry, I wrote of my frustration with people who want to tear down arbitrary borders yet have some very arbitrary definitions of what constitutes a differentiation worth eradicating. Today I want to talk about life with all those boundaries.
Whether it be about sexual orientation, disability, gender, chronic illness, or class, my life has a plethora of delineations. Trying to find my place within that complexity is difficult. Can I stand in both the disability and bisexuality areas simultaneously? Do I need to abandon my gender to stand in the area set aside for my sexual orientation? Can I balance on the toes of one foot to be in the place delineated by all my boundaries? At best, it is a complicated prospect and at worst a failing endeavor.
More and more, I find myself faced with the question of what identity is most important at that moment in time. While working to create a new discussion group on bisexuality at my local LGBT Center, I kept encountering disablist attitudes ranging from people not thinking alternative formats were important to constant underestimation of my abilities. Each time I had to take a deep breath and remind myself that my current goal had nothing to do with disability and that pushing such an agenda in the midst of trying to gain cooperation on another project would not achieve my goal.
Then there are the times when adding together two identities has an exponential result. Disabled people are helpless. Women, especially those of us who look small, are fragile. This makes me a fragile, helpless being.
There are also cases when one identity overpowers the other. Bisexual people are promiscuous, but disabled people aren't sexual. If you've been reading this blog for any period of time, you know the misconception of hypersexuality cannot overpower the desexuality disability status imparts.
Years ago, when disability was the sole focus of my existence, it was easier to negotiate all this. I simply went around being disabled and that was that. Now, as I have somehow managed to amerce myself in the bisexual community, I have far more complexity. Not only do I feel the conflict between the two, but it also highlights my other memberships. For example, I have become aware that being a woman does matter if someone hasn't figured out I'm disabled.
My mind contains a map of all these memberships delineated by a network of lines and I have instinctively learned to negotiate it. Some days it is about deciding what space I wish to inhabit that particular day. Some days it is about stretching myself between two spaces so a foot can be planted in both. Some days I attempt to balance on the very lines that define all the areas.
Alone I can often ignore this map. When others are around I am forever aware of where I place my feet and the consequences of a misstep. If I had been the cartographer, I would have no objections, nut I did not decide that my disability made me asexual, that bisexuals were hypersexualized, women are fragile, or chronic illness is a fate worse than death. Society as a whole has imposed these ideas upon me.
I am, however, responsible for bowing to them without question. The choice, between treading carefully or ignoring the consequences of walking wherever I wish, is a choice even if the options aren't particularly good.
This is where courage comes into play. Moving forward knowing you are going to encounter unpleasantness and doing it anyway takes serious ovarian fortitude (female balls).

Borders of the Mind

This past weekend I attended the 40th anniversary celebration of the dedication of Friendship Park. (If you aren't familiar with it, go here.) The original concept was to create a space where people from the Mexican and U.S. sides of the border could come together to create community. It became a place where families would picnic, grandparents could meet their grandchildren, and the power of an artificial barrier to separate could be diminished by basic human interaction. For years, the barrier was minimal, but in our era of terrorism fears and militarization, there are now a minimum of 2 fences and five feet between loved ones. In fact, you cannot even get within conversational distance without waiting to be 1 of twenty five people allowed into a "cage" for thirty minutes.
The celebration was about re-affirming the original intent to minimize the divisiveness of concrete, steel, and distance. As salsa dancing took place on both sides of the border simultaneously, there was tangible effort made to pretend no barriers existed. Politicians and other speakers talked of a future where people could again actually clasp hands and grandparents touch their grandchildren. The day was about reaching across borders bridging not just the physical barriers but those of culture, class, and national affiliation.
As I stood by myself, I had a lot of time to consider the idea of borders, boundaries, and the lines we draw. It was easy to jump from the bars of a cage to the intangible forces that divide people. After all, the day was about removing walls to encourage changes in thinking. So why, then, was I alone?
I went with my friend who was the mastermind of the event and thus reasonably a bit too busy to baby-sit a grown woman. Luckily I did get to hang out with his mother, who pretty much embodied the exception to every pattern of behavior I observed throughout the day. Given she raised a son who gets it, I should have expected nothing less.
In hindsight, I realized I made an unthinking assumption that an event about removing barriers would be populated by people who didn't exclusively try to banish obstructions related to national borders. I thought disability wouldn't be a big deal. I was wrong.
My inkling of the day ahead came early when people introduced to me could not figure out how to shake my hand, even after I went and actually grabbed my cane propping it next to me as a very clear signal of my disability. While people listened to what I had to say, they did not return my efforts at conversation. Manners were evident. Friendship and genuine interest were not.
When we got to the event sight, border patrol decided that the blind person's I.D. didn't need to be scrutinized and my presence attached to a person's elbow made them exempt from the check as well. At the onset of salsa dancing, the directions required functional eyeballs to follow. The Japanese man who traveled thousands of miles for the event was unable to conversationally bridge the gap of disability to speak with me though I was standing next to and clearly with his conversational partner. The man coaxing his daughter to sit atop the wall on which I also perched les than five feet distance ignored my presence even when I laughed aloud at some of the cute things his child said. Exactly one man, a border angel, seemed genuinely aware of me as a person who warranted more than the exercising of good manners.
I therefore had a great deal of time to consider the societally perpetuated boundaries we possess in our minds. The physical difference disability represents is unfortunately not conceptualized as a form of human variation given arbitrary meaning. Whether out of fear, ignorance, or callousness, disability is a line people feel unable to cross. They will work to remove the physical barriers created by nations and educate to remove the mental blocks those barriers have societalized, but they will not reach out to connect with a person "too different" from themselves. Race, class, culture, and national origin are one thing. Eyes that don't work are another. Apparently some lines are to be crossed and others are to be obeyed as if several feet of concrete and rebar stand in the way. When it comes to border politics, fear, ignorance, and heartlessness are the enemy. When it comes to disability, they aren't.
Having been able to conceptualize border fences in terms of disability, I actually now have a far more profound understanding of the situation especially on an emotional level. I know exactly how it feels to have a socially-constructed thing profoundly impact and limit my life. I guess I just wish people who see the human cost levied by concrete and steel could also perceive a flight of stairs as equally restrictive and without rhyme or reason.

Avoid Disability Access Act

(In Becoming *That* Person, I mentioned I felt the ADA had been mutilated and Omniwomnbat was surprised. I promised an explanation.)
The Americans with Disabilities Act was a bipartisan piece of legislation that was passed after compromise and concession on all sides. While it does stipulate deadlines for various types of access to be accomplished, the actual regulations are not within its text nor are terms like "reasonable accommodation" concretely defined. Furthermore, the more vagaries in a law the more the court system can "interpret" it.
So, we have this law that was passed based on compromise only outlining deadlines and abstract goals with vague language and enforcement left up to the whim of the executive branch and the interpretation of judges. While the goal was noble and necessary – to provide a means for disabled people to become full participants in American society, the law's shortcomings make it less effective.
Let me give you an example. Back in 2007, I decided I wanted a cellular phone I could actually entirely operate independently, so I began research. Turns out that there are regulations – The Telecommunication Act – that govern this. They said that cellular phone service providers had to make all reasonable efforts to offer phones usable by disabled people. Unfortunately, those regulations were not clear as to which disabilities, how many phones needed to be usable, and what effort was considered reasonable. Moreover, individuals were not allowed to file lawsuits to force compliance. The only recourse was to file a complaint with a federal agency that was not currently enforcing any part of the regulations. Therefore, cellular service providers were doing things like stripping away accessibility features to make space for graphical content. They were allowed to order cell phone manufacturers to exclude accessibility so that one line of phones progressively became less usable by blind folks. I eventually had to buy a smart phone with more functionality than I needed and third party software costing $300.00 in order to be able to actually enter contacts in my phone. (Now I have an iPhone requiring me to only turn on the built-in screenreader.)
Phrases such as reasonable accommodation, undue financial burden, and even what constitutes a disability have come under much scrutiny. Rather than giving some simple formula such as if a restroom renovation project costs $100,000.00 to do 3 stalls, the extra $5,000.00 to make 1 stall accessible is reasonable. However, if re-doing an entrance to a store costs $500 to accomplish, but electronically opening doors cost $1,000 for a company in the red, then perhaps it is not reasonable. (And, yes, I'm making up these numbers.)
Over the years, the court system has in fact ruled to limit what is considered a disability under the ADA. In the beginning, Attention Deficit Disorder, for example, was included and I know at one point it was specifically excluded. There has also been a huge debate over HIV and addiction.
The ADA is unfortunately an excellent example of the problems in our legislative system for any bill with concrete language would never pass because of pressure exerted by special interest groups. The true solution is to have a system where common sense can rule the day, but that's not going to happen. Besides, whose common sense?
The pragmatic answer to what needs to happen has three parts. First, simplify regulations. Next, help provide means of accomplishing it that are cheap yet effective with grants and free educational opportunities. and Most importantly, rather than making accessibility an optional thing with lots of loopholes to avoid compliance, make it an expected requirement.
We truly need strong leadership from the executive branch. Throw out the reams of regulations and insist they be understandable by your average 18-year-old. For example, web site accessibility for blind and visually impaired people could be summed up as, "If you wish to do business with or have traffic from any person living within the United States, then your site must work with the top 2 screenreaders and screen magnifiers." How to accomplish that should be taught in web developer classes. For a company that cannot afford to do it now, compliance would be required if any changes are made to the site. Grants would be available to help companies that are struggling.
Think that's too harsh? Okay, fine, companies only need to comply if they plan on doing business with the federal government. I'm sure someone working in New Orleans' Federal building has order something for the office from Walmart's site.
Accessibility has become this massive industry made unnecessarily complicated. Even ordering accessible signage for restrooms is nuts. There are some cute and cheap ways companies could make accessible signage. I believe there must be Braille, high contrast colors, and raised letters of a certain minimum size. With the exception of the Braille, which is not hard to learn by the way, your average 10 year old could probably make such a sign.
I have come to believe the reason accessibility has become such a complicated and convoluted beast is primarily because people want to find a way to avoid doing it. Ever tried to tell an eight-year-old a rule? If you want them to obey it, you put it in a few simple words. The more you say the more they will find a way to wiggle out of compliance.
Finally, consider this. You walk into a store to buy a pack of gum. You, a non-disabled person, assume many things – you will be able to enter and exit the store, the gum will have print identifying it, the sales person will be able to interact with you, and you will be able to identify your own money or be able to use the credit card/ATM machine. How come disabled people have to wonder if they will be able to do these things?

Passin'

Recently I read the novel "Passin'" by Karen Quinones Miller. It's the story of an African American woman who looks white and because of that, is not hired for a job designated for a "black" person. Under another name and without mention of race, she applies for a similar job, is hired, and continues to "pass."
While about race, it touched upon many issues I find interesting and relevant to disability such as what constitutes passing, the tangled relationship it creates with ones group status and personal identity, and the emotional consequences of actively hiding an aspect of oneself.
First, we need some clarification of terms. Passing involves not just actively concealing identifiers of group status but intentionally taking on characteristics of the majority group in order to appear to be a member of that group. While many people might cover up telling traits, concealment is not sufficient to constitute passing. The person must actively try to be perceived as a member of the majority culture.
These days being mistaken for sighted is a common experience for me. Though I do nothing to cause it, I unintentionally pass all the time, which boils down to normative bias. People presume I'm like everyone else, thus sighted. Unless I actively indicate my status by word, deed, or use of a cane, visual impairment does not enter the realm of possibility for consideration.
While I abhor normative bias in part because it strips away my identity, I sometimes actually benefit from the assumption, especially socially. On an airplane, a fellow child traveler was friendly up until she showed me a picture I had to explain I couldn't see. Like with adults who suddenly figure it out, her manner morphed into awkwardness. Nothing about me changed, yet everything changed reinforcing the fact that disability has significant social impact. Each time this happens, it is disheartening.
Unlike my discomfort with even unintentional passing, the novel's main character went to great lengths in order to hide her race. She wore nothing "ethnic," did not cook or eat "soul" food, did not express musical preferences, and eschewed "black" neighborhoods. Taking it further, she adopted the preferences and styles of "white" culture. She even refused to recognize a black relative when approached in public.
The author made it clear that passing is frowned upon within the African American community akin to lying. The dominant white culture was portrayed with more ambiguity, but I had the sense that the behavior was not encouraged.
In start contrast, the way mainstream society thinks about passing in relation to disability is far different. In fact, it's encouraged. "You move so naturally that I couldn't tell you were blind" is meant as a compliment. The more I look like the majority culture, behave like them, and keep quiet about my disability-related needs, the more TABsseem to like it. Even when my disability status is known, I am praised for how much I do not behave like a blind person, offering more proof that passing as non-disabled is admirable.
The discomfort shown when my disability status becomes a known issue goes beyond what the female protagonist encountered. While people get "weird" in both cases, I often sense something deeper than unconscious prejudice. I hypothesize it is about existential fear – TABs worried about becoming me. There is also an element of concern over being burdened with helpless me. I represent people's worst fear and sucking demand on their precious time, neither of which racial difference represents. Furthermore, while racial or ethnic difference is considered human variation, disability is considered human defect.
So why don't I pass and enjoy the perks that can come with it? My mommy taught me not to lie was the answer when I was a kid. Now it's more about a refusal to deny who and what I am. I am thinking about trying to pass, though, just to see what happens and to test my ability to do it. How long can I go without mentioning disability? I'll let you know.

What I Want Cured

In the book I'm reading, one character just asked another, "What's worse, bad friends or no friends?" Without considering it for even a second, I said, "No friends." This bothers me. A lot.
In my life, I have learned desperation born of loneliness causes me to make suboptimal choices. I stayed in a relationship too long, continued "friendships" with people who take but do not give, and others indicate people can take advantage of me because of it.
Over the past five months, I have been working on making better choices about the people in my life trying to focus my efforts on those who have the same friendship philosophy as I do. For those I love, I will do all I can to be supportive, be there without having to be asked, and have enough respect for them to speak my mind but allow them to make their own choices. IF a friend needs me, I'll abandon what I want for their need. In other words, the people in my life are a priority.
Fortunately I have a healthy sense of self-preservation that keeps me from abandoning my physical needs. I comprehend that I cannot be a good friend if I'm a mess physically. For a short time, I am able to put aside my own emotional issues to help another.
Somewhere I read/heard that you shouldn't make someone a priority if they consider you an option. I've been trying to follow that advice. With my uncensored answer to whether bad friends or no friends are inferior, I now realize self-delusion is mine. Apparently knowing I deserve better does not translate into not settling for less.
Do disabled people have to settle for less? Are we trained to do it in other areas so find it natural to do the same in relationships of all kinds? Is it fair or right that people evaluate our worthiness for friendship by considering the complications that come along with us? Am I more deluded than I realize?
I may lose a friend because he considers my life to be "too heavy." I keep holding back my instinctive response. "If you think my life is so heavy, shouldn't the fact that you care about me lead you to want to help alleviate that?" I have already said goodbye to him in my hearth. On a fundamental level, I don't expect him to see the worth in me instead only perceiving the harder parts of my life.
Being blind isn't a big deal. Feeling like crap isn't the end of the world. The way people deal with it causes pain I don't have the words to describe. That is what I want fixed. That is what I wish we could cure.

Becoming *That* Person

Flying home Monday, I almost became *that* person – the one who betrays her people by supporting the opposition --the black, gay Republican, the woman supporting lesser pay for members of her gender, or in my case the disabled woman who wanted to tell the other disabled woman to sit down and shut up.
I cannot be certain of the contentious issue because my attention was not snagged until voices were raised an the phrase "violation of the ADA" uttered. We'd left our originating city late because of a mechanical failure, so our layover was abbreviated. Apparently, this woman wanted forty minutes to exit the plane and do something related to her body and the uncomfortable seats. The flight attendant was refusing her request. I found myself agreeing with him. I found myself wanting to defend him.
Superficially, my instinctive response to my fellow traveler made complete sense for the woman's approach was not nice, rational, or designed to educate. It was shrill and slightly offensive. I believe she told the flight attendant that she knew more about the ADA than he did and she hoped he never had a reason to know as much as her. As someone who wants to change for the better how disability is perceived, I object to other disabled people behaving badly.
The ADA was designed to provide reasonable accommodations to people with disabilities so we could fully access anything the general public had entrée to. Over the past 21 years, it has been twisted, stretched, cut, and shredded by our court system into something I doubt even its author's recognize. As it reaches the legal age of drinking, like a new born infant, it's purity and innocence is long gone. In some ways, it's that inmate who was abandoned by its mother, beaten by its father, sent into foster care where it was raped, and then thrown into the real world because the calendar said it was time. I only wish we could send the ADA to rehab, intensive therapy, and if all else fails, lock it away.
Back to my fellow passenger and disabled person. Her request seemed a bit excessive to me. Holding up an entire plane for forty minutes so she could be out of an uncomfortable seat seemed nuts. Asking to be able to walk around the plane, take a later flight, switch seats, or even have two seats to be able to get comfortable would have struck me as reasonable. Instead, she made a radical demand and resorted to insults when denied her request. In the process, she gave everyone within hearing an example of an angry, irrational disabled person. She's why people hesitate to help me thinking I'll yell at them.
Why didn't I say something? I didn't know the entire situation. She could have been in so much pain that her behavior was explicable. It could have been that she spoke to the airline when making her reservation and they weren't holding up their end of some previously negotiated agreement. Without the full picture, I chose to be silent.
All this is to say that sometimes a member of a marginalized group is a complete jerk giving everyone in that group a bad name. Being part of an oppressed population does not instill sanity, wisdom, or righteousness. My disabilities do not grant me an inherent ability to be right more than another person. They do give me markedly more experience making my opinions more than random thoughts. Understanding the difference between "She's disabled so she must be right" and "She's disabled so she must know something I don't" is hard. Understanding that difference is essential to navigating the minefield of opinions held by people within and without a marginalized group. Anyone can have a point. Anyone can be right. Not everyone can know what it is like to be a part of a particular marginalized group. Our experience has value. Our experience does not make us always right.

Gone Fishing

Hey folks, I'm off in Upstate New York doing the family thing. Back on July 13th.
Jen

It's Two!

Happy blogiversary everyone! Today this blog is two. Don’t faint from shock, but I am not going to engage in introspection this year. Rather, I wanted to thank my loyal and dedicated readers who come back time after time to peruse whatever randomness my mind produces. Whether I am emotional, analytical, or wallowing in self-pity, you read. Thank you.
I do realize that without readers this blog would have no point. I can’t change the world if a portion of the world doesn’t find its way here. I can present interesting perspectives and make brilliant deductions, but if nobody sees the tree fall, can any portion of the human race be effected? Not really.
So, thank you for reading and for your continued commitment to see the world from a perspective often not articulated.
On a different note, do blogs have “terrible twos”? Guess we’re going to find out.

When Crip and Queer Collide

I have a question I'd like all of you to consider. When you first saw me and realized I was disabled, were you scratching your heads trying to figure out what I could possibly have to say about being LBGTQ? If that was the case, you are definitely not the first and will certainly not be the last.

Let's consider why this is the case. Rarely are disabled people seen as sexual beings and often we are perceived as genderless. It's not so much that people consciously consider the issue and decide I, and people like me, aren't sexual and do not have a gender. It is more that the thought never occurs to them.

There are many reasons offered as explanation. Some think it has to do with the fact that disabled people are forever perceived as children. Others believe it is because we are never viewed as potential dates or mates. Still others hypothesize that our physical forms that can often show signs of our difference with scars, twisted limbs, disfigured eyes, or even simply leg braces, are just not a turn on.

Whatever the reason, disabled people are often desexualized. Since an LBGTQ identity is perceived as largely sexual, it cannot have anything to do with desexualized beings and thus disabled people.

Today I want to talk about how a disability and LBGTQ identity interact when they meet inside one person. While I will present concepts and theories, at it's core this is a highly personal discourse because I am disabled and I am bisexual.

Let me offer you some context, especially because some of my disabilities are not obvious when looking at me. I was born with midline facial birth defects: no nose, nasal airway, and the eye structure abnormalities that resulted in my blindness. The doctors said and my parents believed that I was broken and needed to be fixed, so I had lots of reconstructive surgery, some successful and some failing. When I was 19, even though the doctors wanted to keep going, I put a stop to it. My only regret is that I didn't do it sooner.
It's thought that all the physical trauma of the surgeries damaged my immune system and I've been living with Chronic Fatigue Syndrome for about twenty years, which is sort of like pulling an all nighter when you have the flu.

When people think about disability, it is usually in relation to impairment. This body cannot perform that act leading to disablement. I cannot perceive with my eyes, so I cannot interpret visual information and that makes me disabled. In Disability Studies, we call this the medical model of disability.

I far prefer what's known as the social model of disability. It holds that the way society works creates the disablement rather than the actual physical difference. In other words, my eyes cannot perceive visual information and because we live in a world where vital information is communicated in this way, I am disabled.

History provides an excellent example of the social model in action. In the 19th century, Martha's Vineyard – a small island off the upper eastern coastline of the U.S. -- had a substantial Deaf population with something like 1 in every 155 people being Deaf. For perspective, in the general U.S. population at that time, 1 in every 6,000 people was Deaf. The Martha's Vineyard community developed in such a way that Deafness was not a disability because everyone signed. In other words, though people had a physical difference typically considered a disability, it was not in fact disabling because of the way the society was structured.

disability is the only marginalized group you can join at any time, whether you like it or not, whether you choose it or not. For this reason, non-disabled people are often referred to as temporarily able bodied -- TAB. Each one of you could join the ranks of people like me, so pay attention because the way disability and an LBGTQ identity interact may one day become extremely relevant in your life.

There are a multitude of societal beliefs about disability that are problematic. Today I will limit myself to those aspects that directly impact having an LBGTQ and disability identity. The first is the tendency to see disabled adults as child-like – unable to make decisions, not able to control one's destiny, and in need of others to Sheppard us through life. The language of disability reflects this. Those who help us are "caregivers," we sometimes live in "long term care facilities," and the places we go during the day are referred to as "daycare." And, as with children, we are not considered capable of making decisions about sex or enter into consenting sexual relationships. People worry about us being "taken advantage of" because we are seen as vulnerable. If we are unable to sort out sexual feelings and enter into sexual relationships, then we definitely aren't capable of knowing that we are LBGTQ. In other words, my blindness etc makes me a perpetual child so I'm not capable of knowing I'm bisexual. My attraction to women must be a figment of my child-like imagination.

One aspect of the reality of disability is that we need help which makes us reliant upon others. Consider this example. A quadriplegic man needs help getting dressed. What if he in fact feels like a she? It is hard to find helpers willing to dress a man as a woman. If the people who provide us with support to live don't agree with our sexual orientation or gender identity, then we have few options other than not exploring or expressing it.

A large proportion of the disabled population receives their needed help directly from family. What if the quadriplegic man lives with and primarily receives help from his parents? Imagine asking your Mom to help you into bra falsies, and panties. Parents often struggle to accept their LBGTQ children and it is not uncommon for families to disown them. That trans quadriplegic kicked out of his parent's house would have to find wheelchair-accessible housing, helpers who not only bath and feed him but support his trans lifestyle, and money to pay for it all when most disabled people are unemployed and government subsidies do not even provide enough to keep someone above the poverty level.

The societal perception of the "caregiver" as a person doing a good deed and the individual needing the help as a burden further complicates having dual identities of disabled and LBGTQ. Recipients of help are expected to be appreciative and not demanding. Should a "caregiver" be prudish or reluctant about their "burden's" LBGTQ identity, it is hard for the individual needing help to speak up. How do you express the required gratitude while insisting someone do what makes them uncomfortable? Pushing too hard could result in help being withdrawn while not trying means denying one's needs as an LBGTQ person.

Then there are more overt acts of prejudice or hate crimes. Typically, prevention efforts are focused on schools, the work place, and our streets. Such labors do not reach the places where disabled people often live, such as long term care facilities or private homes.

The LBGTQ community has not help the situation. We have fought long and hard against the idea that being LBGTQ is a mental illness or defect. WE want to be seen as like everyone else except we happen to love in our own way. In divorcing ourselves from the idea of defect, we have re-enforced the concept that being defective is bad. Guess who society views as defective? Disabled people. So, not only are disabled people defective, which is a bad thing, but defective things can also not be LBGTQ.

A while back there were a rash of LBGTQ teen suicides in the U.S. and the "It Gets Better" Project came into being. LBGTQ adults recorded messages telling LBGTQ youth to hang on until adulthood when they could move out on their own, be autonomous and thus masters of their own destiny. Then, it would get better. This is simply not the case for LBGTQ disabled teens or adults. The perception that they will always be dependent children, the reality that they need help to live with families often the source of that support, and the fact that public awareness campaigns aren't designed to combat homophobia in the places where disabled people live add up to it sometimes never getting better. Far too often, people who are both disabled and LBGTQ are inexorably stuck.


In my own life, I have seen the complexities my disability identity adds to my bisexual identity. From connecting with my community to simply getting people to understand it is possible to be both, I deal with it every day. Fortunately, I have also found common ground.

Bisexuality carries the stigma of a person being indecisive, promiscuous, disloyal, and philandering. Not compliments. Being disabled also comes with negative stereotypes such as child-like, dependent, helpless, asexual, and my personal "favorite, incompetent. While the specific labels differ, the result is the same. I must cope with negative attitudes and find ways to get people to see past their assumptions.

These two identities also share the phenomenon of others not believing they are true. "You can't have a chronic illness because you don't look sick." "You can't be blind because you can match your own clothes." "You can't be bisexual because you're monogamous. "Bisexuals are philanderers and you aren't, so you're not bisexual." It's all the same – I don't live down to the low expectations so I can't possibly be a part of the group. It never enters people's minds to reconsider their assumptions and expand their understanding of what it means to be bisexual or disabled.

And If I dare actually live down to one of the negative stereotypes, it only acts to re-enforce people's belief that blind people are helpless or bisexual people are disloyal. In other words, neither disabled people nor bisexuals can win. If we exceed expectations, we are not a part of that group and if we meet them, then the negative belief grows stronger.

This begs the question: if disability as viewed through the social model is not a matter of impairment or defect but one of how society functions, then can bisexual oppression be separated from the specific sexual behaviors of a bisexual and blamed on society? In fact, that is exactly what Queer Theory argues. Our society is designed for heterosexuals and bisexuals do not fit, so rather than broadening social beliefs and expectations to encompass other behavioral patterns, it oppresses us.

Bisexuality, and indeed sexual orientation in general, is not typically obvious when looking at a person. There are some disabilities, such as my chronic illness, dyslexia, epilepsy, and depression, that are equally not visually obvious. We call them invisible disabilities and as with sexual orientation, the individual faces the constant dilemma of when to tell someone about it. . Should you mention it too soon to a potential friend, they will just walk away and seek companionship elsewhere. If you keep it to yourself until the friendship is establish, then the person might get angry. Telling a potential employer during the job interview risk not getting hired. Waiting until you have the job risks working at a place that doesn't accept you. Notice I never actually specified bisexuality or disability.

It's no wonder that some LBGTQ people choose to "be in the closet," meaning they don't tell anyone about their LBGTQ identity, sometimes not even themselves. The emotional trauma of not being honest about one's sexual identity is well documented. From personal experience, I can tell you that closets exist for disabled people as well. We experience the same mental distress and emotional trauma when we systematically keep our disability identity to ourselves. Furthermore, we don't get what we need to function in the world if we keep silent.

Unlike staying in the closet, passing involves actively trying to hide one's identity. While you might admit your identity to some people, at other times you conceal it by masking physical signs and altering behavioral patterns. These days, if I want to pass as sighted, I often just need to hide my cane. To be perceived as heterosexual, it's even easier because I'm already seen as asexual. I'll only blow my cover if I happen to mention I find a woman attractive. Passing seems like a good idea because it avoids all that nasty stereotyping, people don't treat you oddly, and you can just slide through the world with ease. Unfortunately, you must constantly monitor your behavior so as not to reveal yourself as well as settling for a life that's not honest or true to yourself. For me, sometimes for short periods, it's worth the effort, but then I start forgetting what I am trying to pass as and mess it up. am I trying to be sighted? Heterosexual? Both?

It is also true that both bisexuality and disability are facts the world would like to erase. Many people literally believe bisexuality doesn't exist claiming we are all just making it up or refusing to choose. With disability, people would rather we didn't exist because we need things in order to function in the world like ramps, Braille, closed captions, and accessible housing which cost money and are inconvenient. Really, if disabled people and bisexuals vanished from the planet, it would make a lot of people more comfortable.

When I began to go through the process of coming out as bisexual, I discovered an interesting fact. The TABs around me were going through a great deal of emotional angst trying to reconcile themselves to a lifetime of negative stereotypes and bigotry. I, on the other hand, wasn't phased in the slightest because I was already used to discrimination and stigmatization. I also noticed that most of my disabled friends had an equally easy time "coming to terms" with their sexual identity. Heck, the mistaken notion that bisexuals are promiscuous is a stigma I'd love to have because at least I'd be perceived as sexual.

I have spent a great deal of time giving you a laundry list of all the negative ways the world views disability and bisexuality. I have even said that the LBGTQ community has done things making it harder to be both disabled and LBGTQ. Now I would like to give you a few ideas as to how the LBGTQ community can positively impact the situation.

First, stop believing the negative stereotypes about disability that society teaches. Take the time to route them out of your thinking so that when you encounter a disabled person you do it with an open mind. Believe it or not, that will probably make the biggest difference.

Second, in planning group activities, consider things like whether the venue is wheelchair accessible and when it is, note that in promotional materials. Simply adding a line to a flyer that says, "If you need an accommodation, contact" shows that you are considering the needs of disabled LBGTQ people.

If you, a TAB, is going to an event and you know there's someone in the group who needs a ride, don't wait to be asked, but offer. "Do you need a ride?" is not a hard question. Even if the person makes you uncomfortable and you have no idea what to do, do it anyway.

When trying to combat homophobia, biphobia, and transphobia, consider targeting not just the places where LBGTQ TABs experience it but also where disabled LBGTQ folks encounter it.

Earlier I spoke about the "It Gets Better" Project and said for disabled LBGTQ youth who become adults, this is often not the case because they lack the resources to be autonomous. To turn this situation around, money is needed. If a disabled LBGTQ person can pay the higher rent often associated with accessible housing, if they can afford higher hourly rates that attract paid help that can provide the assistance they needs to live as an LBGTQ individual, and if they can pay for accessible transportation, then they do not need to rely upon aid from people who do not support their LBGTQ lifestyle.

In describing what it's like to have the dual identities of bisexuality and disability, I might have given you the impression that it is a lousy situation full of lousy things. In fact, that is not the case. I am clear deep down into my bones that society has a problem with my identities but I do not need to share that opinion. Bisexuality and disability teach me something new each and every day. They are aspects of my life I would not change if given a choice. I cannot imagine what life would be like if I were just a heterosexual TAB woman. Actually, I think it would be rather boring.

Going South

In May I went to Tijuana Mexico to speak at the conference linked to their Pride festival this year entitled La jornada cultural contra la homophobia (Confronting homophobia with arts and culture). I spoke about Where Crip and Queer Collide and will post the text of the speech in a separate entry.

The opportunity came about through my friend Dan, who works to create connections across the border with events that happen on either side simultaneously. He's created a garden encompassing both U.S. and Mexican soil. (To read more about it, go here.)

One of the amazing ways he has fostered friendships is through sign language. People can no longer go up to the fence and speak to each other through the gaps in the wire, so now he has sign language interpreters on both sides to transmit messages between friends and especially family. It's only one of the ways the tools of disability can be used to accomplish other goals.

In planning for this event, I thought I would be bringing my guide dog, so I tried doing research on my rights. I don't have any. None. Let me make this clear: guide dog users don't seem to have any right to bring their mobility aid into a public place. Moreover, the Mexican consulate did not know this and were confused by the concept of a service animal. I hoed it might be a case of no laws needed because nobody cared, but I was unfortunately not able to test that theory.

While in Tijuana, I encountered no other disabled people, which doesn't surprise me. What did give me pause was the fact that my friend, who spends about half of his time there, has met exactly one disabled person.
Later in the day, someone explained it to me. Disabled people don't go out in public, typically living at home with their families or in institutions. Even if someone lived out in the community, it would seemingly be almost impossible. The sidewalks are not remotely level and the busses were about 30 years behind ours in terms of design, so accessibility was not a feasible consideration. With a “cheaper” taxi system, there is some means to work around limited physical access, but I suspect my economic resources, however limited they seem to me, are far greater than what the average disabled Mexican has available.

Much of this came from one person who waxed eloquent about how good disabled people have it in the U.S. and in comparison, he's right. Unfortunately, his vision of our social welfare system is biased by the nonexistent system he knows. Trying to explain that made me feel like an arrogant person who has it all and judges others from a place of privilege.

At the conference, I discovered other indications of the social position disabled people occupy. Nobody was rude or even insensitive. That would have taken a connection being made between me being disabled and what that meant on their end. In other words, people in the U.S. seemingly have a sense that they should behave in certain ways and much of the problem lies in not knowing precisely how. I had the sense that the people I encountered saw me more as so foreign that they had no frame of reference. None. I thought that was interesting.

For over ten years, I’ve lived very close to this city, yet this is the first time I ventured south of the fence. I am adding to the list of "stuff to do when I have time," learning more about my disabled brothers and sisters who live so close and yet have such a different experience. Little does he realize, but my garden-planting friend is going to get roped into my efforts.

Making It About the Person

Yet again life pushes my planned post aside for something more of the moment. Seems to be a theme lately.
When a disabled person asks for an accommodation, the subsequent exchange typically becomes focused on the individual making the request. It is about what *they* need, why *they* need it, and how *they* will be given it. Viewed from that personal perspective, blame, judgment, and criticism are far easier and more likely to happen. Moreover, it pits the individual against a system, which is daunting and disempowering.
I grant you that when a single person makes an accommodation request, it is easy to frame the entire thing around the individual. If you can make it about *them* and *their* needs, then once it is done, nothing further must happen and you can see the individual as one of those annoying disabled people who always wants something special. The alternative, of seeing the request as one person pointing out an area in need of improvement, is far more challenging and represents a kind of thinking that naturally makes necessary broader changes. Should a wheelchair user point out an event is held in an inaccessible location and it is viewed as demonstative of a larger concern, then not only does that person need to be accommodated, but other events must be planned with similar considerations in mind. Furthermore, any failing cannot be foisted onto the requesting individual because they were just pointing out the problem.
There are probably other ways of deconstructing accommodation requests, but for now I want to stick with these two because I believe they represent the medical and social model of disability beautifully. The medical model says disability is a result of a specific body not being able to do specific tasks. (Inherent is the assumption that you *should* be able to do those tasks in a specific way.) The social model explains disability as a function of societal structure where the individual is only disabled because the world functions in one way and the individual functions in another. (For an excellent demonstration of the concept, read about hereditary Deafness on Martha's Vineyard in the 19th century.)
This has suddenly become crystal clear in my life as I deal with the latest bit of insanity. The short story is That I volunteered to be the liaison between the LGBT Center and a person promoting a documentary on bisexuality. It took me a while to get to reading the literature, but when I did and got clarification, I discovered I was helping to promote an event where I would not be able to follow the film because certain portions were in French and German with English subtitles only. I got rather annoyed and took a few days before deciding I could not be involved in the event.
The LGBT Center supported my choice, but the person promoting the documentary decided to take the issue to the Bi Forum's discussion group. She made it about me. " Jen has been in the forefront in organizing the event for August, but when she found out this film had some subtitles, which she is unable to read, she has felt compelled to pull out all together." She went on to ask if anyone knew how I could be accommodated, although I'd explained it to her in an email, and asked if someone else would like to promote the event in my stead.
By using my name, by saying "can't read," and by minimizing the subtitles with "some, this woman has made it about me, my inability to do something, and that I am upset over a trivial thing. From my perspective, this is not about me but about anyone with a print-related disability and I simply pointed out a flaw and backed out of promoting an event that was inaccessible. Juxtaposing the two ways of viewing the same situation in light of the medical and social models of disability I thought might be illustrative to my readers.