Living with Lines

In the last entry, I wrote of my frustration with people who want to tear down arbitrary borders yet have some very arbitrary definitions of what constitutes a differentiation worth eradicating. Today I want to talk about life with all those boundaries.

Whether it be about sexual orientation, disability, gender, chronic illness, or class, my life has a plethora of delineations. Trying to find my place within that complexity is difficult. Can I stand in both the disability and bisexuality areas simultaneously? Do I need to abandon my gender to stand in the area set aside for my sexual orientation? Can I balance on the toes of one foot to be in the place delineated by all my boundaries? At best, it is a complicated prospect and at worst a failing endeavor.

More and more, I find myself faced with the question of what identity is most important at that moment in time. While working to create a new discussion group on bisexuality at my local LGBT Center, I kept encountering disablist attitudes ranging from people not thinking alternative formats were important to constant underestimation of my abilities. Each time I had to take a deep breath and remind myself that my current goal had nothing to do with disability and that pushing such an agenda in the midst of trying to gain cooperation on another project would not achieve my goal.

Then there are the times when adding together two identities has an exponential result. Disabled people are helpless. Women, especially those of us who look small, are fragile. This makes me a fragile, helpless being.

There are also cases when one identity overpowers the other. Bisexual people are promiscuous, but disabled people aren’t sexual. If you’ve been reading this blog for any period of time, you know the misconception of hypersexuality cannot overpower the desexuality disability status imparts.

Years ago, when disability was the sole focus of my existence, it was easier to negotiate all this. I simply went around being disabled and that was that. Now, as I have somehow managed to amerce myself in the bisexual community, I have far more complexity. Not only do I feel the conflict between the two, but it also highlights my other memberships. For example, I have become aware that being a woman does matter if someone hasn’t figured out I’m disabled.

My mind contains a map of all these memberships delineated by a network of lines and I have instinctively learned to negotiate it. Some days it is about deciding what space I wish to inhabit that particular day. Some days it is about stretching myself between two spaces so a foot can be planted in both. Some days I attempt to balance on the very lines that define all the areas.

Alone I can often ignore this map. When others are around I am forever aware of where I place my feet and the consequences of a misstep. If I had been the cartographer, I would have no objections, nut I did not decide that my disability made me asexual, that bisexuals were hypersexualized, women are fragile, or chronic illness is a fate worse than death. Society as a whole has imposed these ideas upon me.

I am, however, responsible for bowing to them without question. The choice, between treading carefully or ignoring the consequences of walking wherever I wish, is a choice even if the options aren’t particularly good.

This is where courage comes into play. Moving forward knowing you are going to encounter unpleasantness and doing it anyway takes serious ovarian fortitude (female balls).

Borders of the Mind

This past weekend I attended the 40th anniversary celebration of the dedication of Friendship Park. (If you aren’t familiar with it, go here.) The original concept was to create a space where people from the Mexican and U.S. sides of the border could come together to create community. It became a place where families would picnic, grandparents could meet their grandchildren, and the power of an artificial barrier to separate could be diminished by basic human interaction. For years, the barrier was minimal, but in our era of terrorism fears and militarization, there are now a minimum of 2 fences and five feet between loved ones. In fact, you cannot even get within conversational distance without waiting to be 1 of twenty five people allowed into a “cage” for thirty minutes.

The celebration was about re-affirming the original intent to minimize the divisiveness of concrete, steel, and distance. As salsa dancing took place on both sides of the border simultaneously, there was tangible effort made to pretend no barriers existed. Politicians and other speakers talked of a future where people could again actually clasp hands and grandparents touch their grandchildren. The day was about reaching across borders bridging not just the physical barriers but those of culture, class, and national affiliation.

As I stood by myself, I had a lot of time to consider the idea of borders, boundaries, and the lines we draw. It was easy to jump from the bars of a cage to the intangible forces that divide people. After all, the day was about removing walls to encourage changes in thinking. So why, then, was I alone?

I went with my friend who was the mastermind of the event and thus reasonably a bit too busy to baby-sit a grown woman. Luckily I did get to hang out with his mother, who pretty much embodied the exception to every pattern of behavior I observed throughout the day. Given she raised a son who gets it, I should have expected nothing less.

In hindsight, I realized I made an unthinking assumption that an event about removing barriers would be populated by people who didn’t exclusively try to banish obstructions related to national borders. I thought disability wouldn’t be a big deal. I was wrong.

My inkling of the day ahead came early when people introduced to me could not figure out how to shake my hand, even after I went and actually grabbed my cane propping it next to me as a very clear signal of my disability. While people listened to what I had to say, they did not return my efforts at conversation. Manners were evident. Friendship and genuine interest were not.

When we got to the event sight, border patrol decided that the blind person’s I.D. didn’t need to be scrutinized and my presence attached to a person’s elbow made them exempt from the check as well. At the onset of salsa dancing, the directions required functional eyeballs to follow. The Japanese man who traveled thousands of miles for the event was unable to conversationally bridge the gap of disability to speak with me though I was standing next to and clearly with his conversational partner. The man coaxing his daughter to sit atop the wall on which I also perched les than five feet distance ignored my presence even when I laughed aloud at some of the cute things his child said. Exactly one man, a border angel, seemed genuinely aware of me as a person who warranted more than the exercising of good manners.

I therefore had a great deal of time to consider the societally perpetuated boundaries we possess in our minds. The physical difference disability represents is unfortunately not conceptualized as a form of human variation given arbitrary meaning. Whether out of fear, ignorance, or callousness, disability is a line people feel unable to cross. They will work to remove the physical barriers created by nations and educate to remove the mental blocks those barriers have societalized, but they will not reach out to connect with a person “too different” from themselves. Race, class, culture, and national origin are one thing. Eyes that don’t work are another. Apparently some lines are to be crossed and others are to be obeyed as if several feet of concrete and rebar stand in the way. When it comes to border politics, fear, ignorance, and heartlessness are the enemy. When it comes to disability, they aren’t.

Having been able to conceptualize border fences in terms of disability, I actually now have a far more profound understanding of the situation especially on an emotional level. I know exactly how it feels to have a socially-constructed thing profoundly impact and limit my life. I guess I just wish people who see the human cost levied by concrete and steel could also perceive a flight of stairs as equally restrictive and without rhyme or reason.

Avoid Disability Access Act

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