Tuesday, July 27, 2010

Credit Where Credit's Due

A friend has a tag on her blog that says "People Who Get It Right." Like her, I believe it's not only important to point out problems, but also highlight exceptional occurrences in TAB behavior. Recently one happened worthy of its own entry.

In Blindness v. Medical Profession, , I described the radically different experiences I had with the removal of my left eye versus the unblocking of my trachea, with the former suffering from the juxtaposition. Staff behavior was one issue I mentioned because people kept coming and going from my cubical without telling me or beginning procedures without alerting me. Though my friend tried to address the situation, he was ignored.

When I scheduled my right eye removal, I decided to directly address the situation mentioning my experience to the pre-op nurse. She put me in touch with the Nurse Manager.

I freely admit I was not expecting much based on previous similar events. I freely admit I was very wrong. The Nurse Manager called me and I explained my concern. I said something like, "I know people aren't used to interacting with blind folks."

She said, "We treat eye conditions, so we should be."

"Yeah, I replied, "but probably newly blind people not long-term blind people."

"We need to do better," she stated, quite firmly.

I told the Nurse Manager that I was impressed at her response and she said, "It's my job. This should not be happening to you"

The day of the surgery, I showed up curious about how things might go. It was like the same staff members had been taken over by a body snatcher with perfect blind person manners. Everyone said who they were, made their comings and goings crystal clear, and let me know what was happening before it happened. I kept looking at my friend with amazement and we both kept saying, "Wow, it's completely different."

I called to thank the Nurse Manager. Usually, speaking up about TAB bad behavior gets a list of justifications and excuses. I was thrilled that my concerns were not only heard but addressed in such an complete way. Kudos to the Nurse Manager.

Wednesday, July 14, 2010

The Power of She

Ever been talked about as if you weren't standing right there? Disabled people are more than familiar with this experience. Our companions are directed where to take us, given things intended for us, and asked what we want as if they have a direct line to our brains. It's annoying. In the extreme.

The word "she" has the power to totally alter reality. "She needs to go over there." "What does she want?" I become a body that is unable to interact with the world. I become unnecessary in the conversation. Three letters – one syllable – and I vanish.

Lately, this has happened so much that I have wanted to wear a sign that says, "She Can TALK!" Instead, I keep saying, "Where do I need to go?" or "I want..." You would think this might clue the person "she"ing me into nonexistence that I possess the ability to communicate, but no such luck.

When the "she"ing happens, some of my friends play dumb, others pointedly look at me, and every so often one will say, "I don't know what she wants. Maybe you should ask her?" Often this has more corrective power reinforcing the fact that my presence is irrelevant.

I am most likely to be "she"ed in medical settings where disability is constructed around the physical limitations of the body and corrective intervention. This focus on what cannot be done probably causes medical professionals to have a keen awareness of my deficits as opposed to either my strengths or ways to work around my limitations.

Right now, as I deal with the medical establishment seemingly constantly, I lack the patience to understand the factors that contribute to this "she"ing behavior. I care not a wit as to what socially-perpetuated beliefs about disability have shaped individual behavior. I have no compassion for ignorance. I just want to be treated like a person not disappeared by simple word choice. Because, well, it isn't simple word choice. It's an indication of a pervasive, flawed perception of me.

I am having yet more surgery. It seems my right eye socket is jealous of the left and has decided to evict it's occupying eye. The blog will be dark until the first week of August. All positive thoughts are welcome and appreciated.

Wednesday, July 7, 2010

Invalid or Invalid

Before you read any further, make sure to look at the title of this entry. The word could be invalid as in bedridden or it could be invalid as in unfounded, worthless, or null. I shudder whenever I hear the term used in the former denotation of a person who is weak or ill because it so easily could mean the other as well. Is the term on some level a denial of personhood? While I suspect the answer is yes, I have no logical argument to prove it.

Now how about another favorite of mine: wheelchair bound. Users of wheelchairs are typically unable to get themselves from point a to point b solely under their own power, so they plop themselves into this device and suddenly can move about with freedom. Does that experience fit with the word bound? Replace it with the grammatically appropriate version of the word use, as in wheelchair user or person who uses a wheelchair and suddenly something more reflective of reality.

There is a place between saying anything and scrutinizing each word endlessly. I wish people would strive for that place. To most achieving it feels daunting, so they give up and stop referring to things forthrightly. In my opinion, it is far more doable than you think.

Start with the premise that the person you are referring to is simply different from you. This means you acknowledge human variation and the atypical way the person interacts with the world but you do not judge or rank it. Next determine the concept you wish to articulate and attempt to find an equivalent in your life. For example, you move from point a to point b by use of your feet, a car, bike or bus. How would you describe that? Hoofing it, riding in a car, riding a bike, or bus rider would work. None of those terms imply you are glued to your method of locomotion so why would you describe a wheelchair user in those terms?

The term bound is one that probably can be traced back to somebody thinking about how they, a TAB, would feel if they needed to use a wheelchair and could only come up with the feeling of trapped. Don't try to put yourself in the shoes of a disabled person when it comes to judging their life or how they feel about it. Simply put, it cannot be done in a neutral way free of societal beliefs about ability and physical difference. As a TAB you are also unaware of the techniques we are taught to accomplish tasks, emotional changes our disability has facilitated, and what windows might have opened when doors closed. In other words, you lack basic information necessary to occupy our footwear.

It is far better to seek an equivalent concept in your able-bodied life and find a way to describe it that would work for you. Here's a great example. From time to time, friends of mine find themselves in the position of wanting to know if a person they've met is acquainted with me. Usually, if this happened with a non-disabled person, a description of the individual would be given. To me that makes it completely reasonable and efficient to say, "Do you know Jen? She's blind, has curly hair, and her face is pretty unusual." It's the equivalent of saying, "He's tall, really skinny, and has long hair."

Back to invalid. Usually that word refers to a person who cannot get out of bed or leave the house. If you treat that as a fact that has no inherent implications about the person's quality of life, then I imagine you can come up with a better term than one which means null with a change in emphasis. It is probably going to take a few more words, but I think it might be worth the effort.