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.

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.

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.

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.

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?

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.

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.

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.

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.

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).