Not Female. disabled.

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

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).

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.

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.

To Bother or Not To Bother

Whenever I encounter remediable barriers to access, I find myself in a dilemma. Is pointing it out to The Powers That Be worth it? Will anyone pay attention? Do I risk alienating someone I should be cultivating? I have yet to come up with a simple answer or even set of answers. Each time it happens, I must consider anew my priorities.
There are a few types of situations that routinely crop up. The first relates to inaccessible websites by companies both big and small. In this situation, I am not risking much, but the chances for positive change are low. Most companies ignore such email or send back a generic response that typically illustrates they have missed the point entirely.
Recently I received a print survey in the mail from Ipsos Mendelsohn - Personal Interest Survey with $10 enclosed. I was more than willing to accept the money, but there was no way for me to participate in the survey. They did include an email address, so I sent the following admittedly rather snarky email.
Hi there,
I was happy to pocket your $10. I was less pleased that I, a blind person, was receiving a print survey without any indication whatsoever that my existence was taken into consideration. At the very
least, you could supply a link to an online version of the survey or offer to send it on a CD-ROM.
You might want to consider entering the 21st century where technology exists to allow you to take the needs of everyone into consideration. Any sample you collect that doesn't taken the needs of
blind people into account is inherently statistically skewed.
Sincerely,
Jen
Apparently I was trying to vent all my frustrations when I wrote that. In response, I received:
Hello,
Thank you for your email.
We apologize for the inconvenience of sending you this survey. Unfortunately, this study was only conducted using paper survey and there is currently no online version available.
If you haven’t already done so, please consider visiting our website for more information regarding the Personal Interest Survey: www.interestsurvey.com
Kind regards,
James Petersen
Director, Ipsos Mendelsohn - Personal Interest Survey
info@interestsurvey.com
http://www.interestsurvey.com
This response made me feel the fullness of the futility in having sent the email in the first place.
At the other end of the spectrum are people with whom I have a personal relationship. This happens quite frequently with musicians acquaintances when they send out graphical newsletters. I then must decide if I wish to point it out. Typically, these are decent people who quite possibly are nice to me out of a sense of obligation/it's their job. Putting them in an awkward position is not something I enjoy doing. And, if they make a change, are they doing it because they understand my point, to make a fan happy, or to be nice to the blind woman? I act in such situations infrequently.
Now we come to my latest dilemma. In working with the local LBGT Center, I have become increasingly frustrated by their lack of access for disabled people in general and blind folks in particular. Because I am starting up a new discussion group at The Center, I cannot avoid the issue. It's right there staring me in the face going, "So, what are you goanna do?"
It began with demographic forms. Apparently, every person served by The Center needs to fill out some basic information each year. Then I discover those who lead discussion groups receive an entire clipboard of information before each session. There is a form with information about group attendance and topics. There are also the aforementioned demographic forms I'm expected to make people fill out. My rock and a hard place is that I neither want to alienate TheCenter so they cancel the group nor do I wish to allow discriminatory practices to continue. How do I push enough for change and not so much that they push back in ways I don't want?
I've raised the concerns and after some back and forth, I think I will at least get what I need. It is clear, however, that they are not seeing things in an institution-wide, systematic way.
Have I mentioned that as soon as I get The Center to start considering bisexuality in their actions I plan on doing the same thing for disability?

Flavors of Desperation

Saturday I joined a gathering of people with chronic illnesses. While not my first time doing so, the group has only met thrice – I am a novice when it comes to such situations. Historically I tend to do badly when I attempt to join a group based on one of my identities: The blind people don't get the sick people, the sick people don't get the blind people, and the bisexuals understand nobody and are understood by nobody. Let's not even throw facial differences into the mix. The proposed topic of how your illness positively impacted your life journey seemed to fit my overall philosophy, so I went.

Desperation. That room was full of desperation. People were so focused on getting better that they weren't remembering to live in the interim. From my perspective, I wasn't the healthiest person in that room, but I was probably the happiest with my current life.

It's not that I have some magical ability or special power that keeps me happy in the face of the complexities of illness. I think it's that somewhere along the way, long before chronic illness was a part of my reality, I stopped totally listening to what the world was teaching. A partial education in how people "should be," the benchmarks of success, what's appropriate, and what you need to be happy has actually been a benefit when it comes to living a reality outside the norm.

Even I struggle with issues of success, happiness, and feeling like a valuable member of the human race. I just have distance allowing me to see that what makes me feel bad is not within myself but coming from the larger world. Knowing that makes it not just easier to dismiss, but less miserable to feel.

By the end of Saturday's meeting, my contentment was shattered. Something about watching people dedicated to fixing themselves in order to be happy wore at me. Instead of also wishing for health, I became despondent over being single because after realizing I was probably the happiest person in the room, it dawned upon me that I was the least likely to find a life partner. Ridiculous, full of self-pity, and some would say patently untrue, but I felt it. Strongly.

Over the past few days, I have come to know this is my weak area. I might not feel broken, I may not need health to find happiness, and I feel no need to fit any traditional roles, but I am firmly and unwaveringly convinced my chances of finding a life partner are lower than the average person. Moreover, lower far too often translates into not going to happen. Friends have tried to use logic and reason, pep talks, contradicting examples, and every other method under the sun to get me to see it otherwise, but I'm stuck. Totally stuck. I'm so stuck that I'm starting to annoy even myself.

I did have one useful realization: If I think it's most likely that I'll partner with a man, then maybe I should hang around heterosexuals more and queer folk less. At the moment, I'm eating, breathing and dreaming bisexuality as I put together a panel workshop. Perhaps my next endeavor should be more heterosexual. Then again, of my last three crushes, two came from the bi community, so maybe the focus should be on men who actually date women. Anyone know where to find those? So far they haven't created a guide dog command, "Find a man."

Lessons Learned

This past weekend San Diego held its annual Pride Festival. As a co-coordinator of San Diego Bisexual Forum (Bi Forum), I was heavily involved in planning and executing our parade contingent and informational booth. Tons of effort was expended by me and my fellow coordinator as well as a core group of members. Then, this weekend, the event.

I know this was specific to me, but my overwhelming feeling throughout was boredom. Parades are not for blind folks and the only thing worse than watching is marching. Actually, to conserve energy, I rode in the back of a truck. I was by myself and therefore had nobody to describe the sights. My only salvation was the group behind us that had a loudspeaker with an amusing man whipping up the crowd.

I spent Friday setting up the booth making sure I knew where each item was placed and that it was an obstacle-free zone. By the time I arrived at the booth Saturday, that was no longer the case. Chairs were everywhere. Bins tucked under tables were pulled partially out. People were in the way. I sat in the back and tried not to need to move. Had I been able to move freely, I would have not been equipped to snag those walking past and interest them in what we had to offer. Well, I could have talked to them, but getting there attention initially would have been…. impossible. I was utterly useless. I guess useless goes right up there with boredom as my overwhelming feeling. And, in case you didn’t know this, I loathe feeling useless.

I hold nobody responsible for this happening. Unless blind people were running everything, there was no way for me to truly participate. I can think of some ways people could have made me more a part of things -- of more use -- but bottom line is that it is not a great situation in which to be blind.


From the above experience, I learned a few things that will help with future events. This is not the first time Bi Forum has taught me something, though. Five years ago, when I began attending meetings with a friend, I was isolated. In fact, whenever people freely mingled, I sat alone. Sometimes people came to speak with me, the interaction having the flavor of them taking pity upon me instead of wanting to get to know me. And, conversation petered out fairly quickly. Less formal events like parties were equally disappointing. Previously, my experiences with LBGT groups was limited to organizations affiliated with universities. There, as you would expect, I felt a part of the community. Bi Forum felt like just another collection of non-disabled people who didn’t get it. Usually, time and repeated exposure to me solves the problem, but not in this case.

When my friend stopped attending, so did I. In June of 2008, I was present when some Bi Forum members were discussing Pride. At the time, I had been considering getting involved with something to test my limits in terms of “professional” commitments, so this seemed like a great option. Besides, if I failed I would not be letting down a group that was central to my happiness.

This time around, things changed. First, it was somebody commenting on how I had “stopped hiding.” I think he mistook the necessity of me walking behind a sighted guide in crowded areas as a personality trait. The fact that I brought baked goodies to every meeting also helped. Mostly, though, I think it was the leadership role I assumed. As a co-coordinator, I was in the middle of everything and people had to deal with me, like it or not. This became even more the case when I started facilitating the support group. They could not simply avoid interaction because they were uncomfortable or unable to figure out what to do. I never realized that leadership positions can actually break down barriers erected by social norms.

Another piece of the puzzle became clear when a member told me he was enjoying getting to know me. I bluntly said, “Umm, I have been around the group for four years. What’s the difference?” He told me he previously thought we would have nothing in common because I was blind and conversation would be limited. I found this to be especially interesting since we did share a common sexual orientation. To him, that common ground was not sufficient to bridge the gap between blind and sighted. I have no idea what caused him to change his mind, but he did.

I am not the most outgoing person on the planet and describe myself as a shy extrovert. Social interactions in large groups of strangers when I am not familiar with the surroundings are even more challenging. I think having a job brings out the overachiever in me and forces me to deal with other people as well as occupying my time. I suspect, but do not like to admit, that I could probably better deal with social situations if I pushed my boundaries just a little.

The tool of taking on a leadership role to force people to overcome their discomfort intrigues me. Now I need to find a way to apply it to my most irritating social situation – the live music venue I haunt. After more than three years of regular attendance, the people who acknowledge my presence can be counted on one hand. There is a cluster of regulars like me, but no means to become a leader. I shall ponder.