Cherry Picking

Okay, other disabled people, I have a question for you. Have you ever noticed that non-disabled people in your life seem to pick and choose what aspects of your disability they will and will not deal with? This is the friend who will come over and visit, but not go out because finding a wheelchair accessible restaurant is just too hard. This is the person who will understand what it is like to encounter an inaccessible building, but will not understand how socializing can be inaccessible. This is the individual who knows all about your deafness and moves heaven and earth to accommodate it, but thinks you should maybe just try harder to be less depressed.
Society creates disability. Society makes dealing with the disability the responsibility of the disabled person. Our loved ones further add to the situation by cheery picking the consequences of our disabilities they do and do not wish to cope with. In this age of unconditional love, disability is somehow outside the bounds of what those who love us are expected to handle. It's somehow too much to ask or expect.
I guess I've missed all the chances in my life I've been given to "decide" if I wish to deal with this or that aspect of my disabilities. Maybe the offer was tendered in print?
Should such a proposition have been made, for my entire adult life, I would have replied that disability is a package deal and to separate it is akin to selling a house one room at a time.
Lately the conditionality with which those around me "accept" my disabilities has begun to irritate me in a way I cannot dismiss. Maybe if the conditionality was explained in terms of their shortcomings. "Jen, I want to drag you to this movie, but I don't think I can describe it. What can I do?" Instead, people just conveniently assume, despite me saying the contrary, that I can't go to movies. Or maybe if it was broached forthrightly. "Jen, what do we do about my other friends who don't know how to interact with a blind person?" Unfortunately, in its place, I'm left to fend for myself.
More and more, I've been feeling like one of those boxes you get at a yard sale or auction. You bought it for the cool bowl on top. When you get it home, you sort through and set aside what you want and what you will discard.
Well, I've decided I'm no longer a yard sale box. I haven't yet figured out how you go about manifesting such a decision in the real world.

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.

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.