Wednesday, July 27, 2011


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

Wednesday, July 20, 2011

What I Want Cured

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

Wednesday, July 13, 2011

Becoming *That* Person

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

Wednesday, July 6, 2011

Gone Fishing

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