Is It?

Today you all have the power to decide! Does the following constitute discrimination and/or an illegal act?
Earlier today I received a call asking me to participate in an online survey about music in my area with monetary compensation offered as incentive. My obvious question had to do with screenreader accessibility of the online survey. Managers were consulted and they did not know the answer, so they decided to skip me as a possible subject. The man was most apologetic telling me they would use this experience to get better information the next time around.
This is not the first time I have been unable to participate in a survey because of disability and I suspect I am not the only disabled person to have such an experience. When those conducting a survey limit their subject pool by disability, doesn’t that skew the results? Does anyone ever cover that confounding variable when they publish the study findings?
The broader question, though, is whether or not this is discrimination and since they were offering pay, illegal based on employment law. I suppose an additional question exists: Am I being utterly ridiculous to frame this issue in terms of discrimination and the law?

Pause for Laughter

I think everyone – me, you, and this blog – are in need of some levity.
About ten days ago, I realized my wireless computer keyboard was disgustingly dirty and set about cleaning it. There was water and sponges and scrubbing and vigor. There was also apparently some damage done.
I brought the keyboard and the computer back together and chaos erupted. Eventually, the computer just went quiet – a cataclysmic event equal to the blank blue screen – and I shut down the computer. It turned on just fine, but made no sound.
I removed the keyboard from the area, hooked up a new one, and rebooted. Repeatedly. No sound.
I used my netbook to access the desktop’s hard drive and confirmed it was working. Just not talking. My assumption was that the sound card had died tragically.
Usually, such a thing would evoke panic, but this time I was rather distracted by surgery, so I just used my netbook and iPhone. It sucked in terms of speed, but wasn’t that big of a deal.
Finally, I came across something I could not accomplish with the tools at hand. To burn something to cd, I dragged out my monitor and enlisted sighted assistance. We went through the process of making the CDs, then my partner happened to look down at the speaker icon and saw it was Xed out in red. She clicked. Talking happened.
I went without my computer FOR TEN DAYS because mute somehow got hit when my wireless keyboard went nuts after I graciously cleaned it.
Now my computer just does it’s usual dying routine about once a day. That I can live with because my resurrection rituals work under those circumstances.
And then there was the man at open mic. I was sitting in a chair when someone started, I thought, speaking to me. I did the usual, “Are you speaking to me?”
He affirmed that he was and asked if I was going to play the drums that night.
“Um, no. Why?”
“I can see your drumsticks.”
I thought, reached under my chair, pulled out my folded up cane, put it back together, wiggled it, and said with a laugh, “Not drumsticks.”
He apparently didn’t think I was all that funny because that pretty much ended the conversation.

The Ugly Part

I probably shouldn’t be allowed near a blog right now. Someone should be here to say, “Jen, drop the keyboard and slowly walk away from the blog.” There is, however, nobody to do that.
This is in fact precisely the point. Disabled people, or at least this one, have trouble with both acquiring romantic partners and establishing and maintaining close friendships. Aside from the obvious consequences such as isolation, it means I do not have A Person – that one individual who I know will always be there no matter what. And, unfortunately, my particular circumstances mean I have need for A Person more than most.
I have known all this for quite some time, but last week it became a bit more relevant. Southern California went dark in a massive blackout. Exactly one person went out of her way to check on me. While it turned out I was fine, what if I hadn’t been? When push comes to shove, who will make certain I’m okay?
I suspect some of you are thinking, “There’s the Red Cross, 911, and surely neighbors will help.” Well, the power company has a list of people who might have problems if the power goes out. I got my call from them 16 hours after the power went out and 9 hours after it went back on. Additionally, in my apartment complex where I have lived for six years, not one of the twenty-five residents asked me if I needed anything.
This scares the out of me. I have a vivid and slightly pessimistic imagination, so I can come up with numerous circumstances where I might need help and can’t do anything to make that need known. I hate admitting this, but my life is pretty much a carefully stacked pile of rocks. One seemingly small shift could cause boulders to go tumbling every which way. Last week was a visceral reminder that disability both makes me more vulnerable and also limits who knows of the plight and helps.
A solution occurred to me. Once a friend told me I was “too independent for my own good.” Is that possibly the case? If I were to appear more helpless, would I thus get more help?
I don’t know about you, but I don’t want to live in a world where I have to be les than I am in order to get what I might need. I’m not even sure I’m capable of behaving in that way.
So, on behalf of all the disabled people who walk in shoes similar to mine, even if you don know us well and even if we seem like we have it all together, when disasters like floods, hurricanes, wild fire and massive blackouts occur, knock on a door and use your words to say, “Things are a little bit nuts. I was wondering if you needed anything.”
At the top of this blog, I said I should probably not be allowed to post. This entry is going up tonight because tomorrow I am having yet another surgery (minor, promise). I’ve asked people for rides. I’ve asked people to come by and check on me. I’ve reached out for emotional support because my PTSDis acting up. Mostly people have been more than willing.
As I “reap” the benefits of this support, I feel a bit horrible even speaking about how abandoned I felt last week. This blog is supposed to show the good, bad, and ugly. Guess I’m living up to the ugly part today.

Will We Learn?

When Vietnam vets began to get sick and babies were born with unexpected birth defects, nobody believed it was Agent Orange. Even today, Veterans Affairs does not acknowledge all the conditions caused by exposure to the chemical.

To put a personal face on it, the most commonly accepted theory of why I turned out the way I did has to do with my Dad’s exposure to Agent Orange. Midline facial birth defects became far more common in Vietnam’s children. I don’t have statistics for this, but I believe the incidents were also higher in vet’s children. I had a midline facial birth defect, yet the VA has never acknowledged my father’s service to his country might have resulted in my disabilities.

Then we have the first Gulf War where service members began experiencing weird medical conditions after service. They are still fighting for their conditions, such as ALS, to be recognized as service-related.

9/11 happened and many of those who ran toward the disaster to help began developing medical issues in the days, months, and years after. They still struggle to get help.

Now vets are coming home with PTSD and they are not getting the help they need.

As a people, are we really that dumb? As a people, do we want this to be how those who help and defend us are treated when they need our help and support?

You are probably thinking, “Yes, our government needs to do better. I’m ashamed.” While I acknowledge that our government ultimately must take responsibility for those harmed in the line of duty, I think it is easy to see this as something beyond one person’s ability to impact.

You may not be able to offer health care, you may not be able to beat the VA into submission, and you might not be able to change the world, but you can still do something. We’ve all heard the horror stories such as like this one and wile we feel for the people involved, we don’t really do much.

I know the brother of the soldier described in that blog and I think the fact that I keep asking how his brother is doing matters. I think the fact that I tell his brother’s story matters. I can’t do anything to fix the broken system, but I can at least make sure those impacted know people care and the stories are spread until someone who can help hears them.

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.