Thursday, June 30, 2011

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.

Wednesday, June 29, 2011

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.

Wednesday, June 22, 2011

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.

Sunday, June 19, 2011

Tongue As Navigational Tool

Normally I avoid stories like this as if they will contaminate me with The Plague. This one, however, avoids being either "amazing blind man climbs a mountain" or "blind man proves sight doesn't matter." There's a fine line and this story walks it well.
The Blind Rock Climber Who Sees with His Tongue
I had about six reactions, one on the heels of the next. First, at the title, I thought, "Oh, god, I'm going to want to throw my keyboard." Didn't happen. Then, I started betting myself how long until they used a word like tragic, brave, amazing, or overcome. Lost the bet to myself. Next I kept waiting for the heart-string-tugging story of how Eric lost his vision. They restrained themselves to a single sentence about blindness occurring three decades previously.
I have to admit that, since everything is about me, I immediately realized I'd have trouble breathing around something in my mouth, so I would be deprived of any every day applications. Those possible applications, however, are interesting. Once technology like this exists, it tends to be improved upon, so I can easily see a time in the next five years where this device helps you navigate down a sidewalk or is integrated into the car they are developing for blind people to drive. I might actually regret the existence of a nasal airway if I can't take advantage of such tech.
Last but not least, I liked the matter-a-fact way Eric presented himself. He just goes about climbing using what is available to accomplish what he wants. That's the ideal. That's my goal. I want to appear that way to other people. I turn myself into a pretzel trying to give that impression.
Okay, I lied. It's only 5 thoughts.

Tongue As Navigational Tool

Normally I avoid stories like this as if they will contaminate me with The Plague. This one, however, avoids being either "amazing blind man climbs a mountain" or "blind man proves sight doesn't matter." There's a fine line and this story walks it well.
I had about six reactions, one on the heels of the next. First, at the title, I thought, "Oh, god, I'm going to want to throw my keyboard." Didn't happen. Then, I started betting myself how long until they used a word like tragic, brave, amazing, or overcome. Lost the bet to myself. Next I kept waiting for the heart-string-tugging story of how Eric lost his vision. They restrained themselves to a single sentence about blindness occurring three decades previously.
I have to admit that, since everything is about me, I immediately realized I'd have trouble breathing around something in my mouth, so I would be deprived of any every day applications. Those possible applications, however, are interesting. Once technology like this exists, it tends to be improved upon, so I can easily see a time in the next five years where this device helps you navigate down a sidewalk or is integrated into the car they are developing for blind people to drive. I might actually regret the existence of a nasal airway if I can't take advantage of such tech.
Last but not least, I liked the matter-a-fact way Eric presented himself. He just goes about climbing using what is available to accomplish what he wants. That's the ideal. That's my goal. I want to appear that way to other people. I turn myself into a pretzel trying to give that impression.
Okay, I lied. It's only 5 thoughts.

Wednesday, June 15, 2011

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.
Apparently I was trying to vent all my frustrations when I wrote that. In response, I received:
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:
Kind regards,
James Petersen
Director, Ipsos Mendelsohn - Personal Interest Survey
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?

Wednesday, June 8, 2011

Fixing It?

If authenticity represents a greater risk for disabled people, then how do you claim the joy Dr. Brene Brown contends comes from feeling connected which can only be achieved with authenticity and vulnerability? If societal expectations and perceptions of disability foster a disconnect how do you establish connection?

I have been struggling to answer these questions explicitly over the past week, but on some level my entire life. I know being authentic and vulnerable is not easy for anyone, disabled or not. My intuition says disability is a complicating factor like other marginalized group affiliations, but probably represents a dynamic with more impact than most. It is unique because society defines group membership by something the individual cannot "do", pigeonholes members into a tragic but brave category, and yet somehow ignores the fact that membership is a constant possibility. What my intuition refuses to cough up is the way to deal with disability so that it does not decrease one's chance to create connections.

I have some pieces of the answer, like shame. Dr. Brown defines it as the fear of not being worthy of connection – is there something about me that if others knew would make me unworthy in their eyes? Disability is in fact such a stigmatizing trait that we attempt to conceal, divorce ourselves from, and distract so others do not notice. Blind people wear dark glasses, learn to mimic sighted mannerisms, and my personal failing – become paranoid about clothes matching. People with scars cover them up. Deaf people sometimes hide their hearing aids. People with prosthetic legs avoid shorts. The list goes on.

I know and have sometimes parroted the rationalization behind concealment. We live in a world that perceives disability and the "defects" that define it as negatives. Hiding those traits facilitates social interaction. In other words, we do it to maybe avoid some of the crap dished out to us every day.

Yet in order to be authentic and vulnerable, disabled people need to stop hiding "flaws." This will in theory lead to a greater feeling of connectedness. My question, still unanswered, is whether the gain in authenticity can overcome the disconnect inherent in being disabled.

Long ago I stopped concealing my physical manifestations of disability, but I still experience shame. If people find out how much help I need, will they think I'm worthy of knowing? What if I seem incapable? Believe it or not, I experience shame simply by running into something while using my cane. Though I joke around about "sucking as a blind person," it's just a way of trying to coat my shortcomings in a layer of humor that might make them more palatable.

Maybe my problems finding connection are because I don't show my weaknesses. I equally know it is true that societal perceptions and expectations surrounding disability make connection more difficult. I am an imperfect being. The world is an imperfect thing. Guess we could all stand for some improvement.

Sunday, June 5, 2011

Creating Disconnect

I am dissecting Dr. Brown's ideas about vulnerability and connection in relation to disability. She argues that feeling connected to other people makes life worth living and in order to achieve this, people need to be authentic and thus vulnerable. While I completely agree with her overall point, my immediate reaction was to wonder how disability fit into the picture. In my last entry Authenticity's Risk, I examined how the vulnerability is made more complex by disability. Even if it were possible to erase all those implications, societal expectations and perceptions of disability would still foster a disconnect between disabled people and our TAB counterparts. Obviously I have examined this issue before, but not specifically as it relates to connection/disconnection.

The first element is the "us/them" mentality. The physical or behavioral differences between disabled and TABs have been given a vast amount of significance that creates the two distinct groups. The artificial boundary promotes disconnect.

Then society fleshes out the us and them distinction with perceived implications such as abilities, limitations, potential accomplishments, and estimations of worth. No longer is it simply people who can see and people who cannot see. It is people who are independent and people who need help. More disconnect.

Societal structure and function also plays a role. With stair-dominate architecture, wheelchair users cannot easily access buildings and you literally have the physical separation of those who can get inside and those left on the sidewalk. Disconnect.

What about amazing? Even viewing a disabled person in a favorable light because of how they cope with their "situation" fosters lack of connection. It puts the disabled person up on a pedestal to be admired like a Chinese vase or rare bird. Disconnect.

I could probably go on for quite some time about how societal expectations and perceptions of disability foster disconnect, but I shall leave that as an exercise for the student. Rather, I want to think about this from a more positive perspective. Is connection across the us/them gulf possible?

Aside from the obvious solution of ridding ourselves of societal expectations and perceptions of disability – filling in the gulf -- I believe there have to be more feasible strategies.

Maybe my pessimistic nature is showing because I can only come up with methods requiring TABs to take action. Unfortunately, history has proven that TABs do not go out of their way not as a conscious choice so much as a factor of priorities and scarce resources like time. Still, what happens if the TAB hangs out on the sidewalk with the wheelchair users who cannot enter a building? Connection.

There have to be ways to erase the disconnect society has created around issues of disability. If you can pull it apart, you can put it back together, right?

Wednesday, June 1, 2011

Authenticity's Risk

Last night I listened to Dr. Brene Brown speak about vulnerability and feeling connected. Of course I immediately began putting it into a disability context.

Dr. Brown's overall message is that feeling connected to other people gives our lives meaning and purpose. In order to establish connections, we must allow ourselves to be fully seen by others – be vulnerable. Shame, a sense that if we were truly seen something about us would make us unworthy of love and belonging, often impedes upon this process. Simply put, we don't think we are good enough, so we do not let others see our weaknesses increasing our sense of disconnection. Thus, the ability to be vulnerable based on knowing you are "good enough" hence worthy of connection is essential to feeling connected.

I have written extensively about not having a sense of connection and struggling to find it. While being disabled in general and the way I write this blog in particular imply I am comfortable with vulnerability, I have started wondering if I do in fact have a vulnerability issue.

Consider what it means to be disabled. The things "wrong" with us carry a very heavy social stigma which means being vulnerable has a greater sense of risk. You often must parade your weaknesses before others in order to get what you need. Then there is the vulnerability inherent in having a condition that makes you dependent upon others. In fact, I would argue there is emotional vulnerability – the focus of Dr. Brown's research – and physical vulnerability. Their complex interaction changes the vulnerability/authenticity/connection relationship.

For example, a wheelchair user needs help eating constituting a physical vulnerability. Enlightening your personal assistant about what you think of their cooking could result in them immediately quitting. As anyone who uses personal assistants can tell you, finding a new one is a hard, prolonged process. Being authentic becomes more than a risk of being ridiculed with physical well-being on the line pitting it against a desire to feel connected.

If connection is indeed, as Dr. Brown argues, what makes life worth living, then the conflict becomes a no win situation. Authenticity makes joy possible. Authenticity risks physical welfare. While physical stability allows for the pursuit of connection and thus happiness, it is only gained through lack of authenticity that is anathema to connectedness. The only "solution" is to walk a tightrope trying to balance it all without ever truly getting one hundred percent of anything.

While other marginalized groups typically do not have a physical vulnerability component (except maybe women and rape), they do share a risk of vulnerability based on the social stigma of their group membership. We are burdened by increased risk because our actions are viewed through the filter of stereotypes. A woman speaking out is vulnerable to criticism of being a "bitch." An Asian man into all things geeky risks being dismissed with a shrug and "figures" if he expresses his passion. Marginalized group membership comes with a increased vulnerability. Remaining authentic in the face of it takes a little extra wherewithal.

Societal expectations about disability and other marginalized groups further complicate the situation. Visible signs of disability status often are stigmata we try to conceal with dark glasses, clothing style choices, cosmetics, and other things. This grants social affirmation because it fulfills the expectation that we try and look "normal." An normalized appearance supposedly makes it easier to get a job, create friendships, find romantic love... Since it also is decidedly not authentic, it may place a ceiling on how much connectedness is achievable.

If authenticity threatens social acceptance and risks physical well-being, how can you be vulnerable to achieve social connection and thus happiness? Great question for another entry.