Wednesday, September 29, 2010

Is It Funny?

The other evening I went out with a bunch of people, some long-time friends and some newly met. When someone complimented my black skirt, I said, "Thanks. I made it."

My friend G was sitting next to me at the time and he piped up. "Jen, that's a great red skirt."

I paused looking at him, then started laughing as I gave him a playful smack.

The woman sitting with us was a recent acquaintance and the look on her face must have been truly horrified because through his laughter, G said, "I'm the only person who ever gives Jen any shit." Not exactly true, but close.

Did you laugh? If not, here's a question to ask yourself: Do you think of disability as a negative? For instance, is it my obstacle to overcome, a tragic situation, or something you wish I was spared?

I have a theory that people who view disability as a negative often miss the humor in situations such as the above. the tragic is simply not humorous, akin to poking fun at someone dying. (Btw, is the euphemism for a dying person existence challenged?)

There is a fundamental belief in our culture that something pitiable should be off limits. You don't laugh at another's hardships. When G deadpanned about my skirt being red, he assumed I knew he thought me capable of dressing myself in the desired clothing of the desired color. What happened would not be amusing if G honestly thought I'd believe him for more than about two seconds while I realized he was kidding.

Previously I have touched upon the idea that when it comes to language, the audience matters. Those who know your politics and opinions have a context in which to understand your words. On the other hand, strangers have no more information than the words you utter by which to judge your character. Therefore, using reclaimed words like crip or queer works only when the listener knows certain specifics about you.

This same principle can be applied to humor. A black person making fun of black people can be a source of hilarity whereas a white stranger doing the same thing appears to be racist. It's all about what the audience knows about the speaker. It's all about context.

Saturday Night Live has taken a great deal of heat for its portrayal of New York's Governor Paterson, who is the first legally blind person to ever hold that office. Apparently, they had him stumbling around a room, using charts upside down, and not responding properly before a camera. Basically, SNL banked on the fact that blind people are seen as incapable of doing certain things and played that up for a laugh, along the way giving millions of people the idea that blind folks aren't able to function in a room, develop systems to make certain materials are right side up, or face a camera when given an auditory cue. (On September 26, Paterson was given a chance to dish some of it back to SNL when he appeared on the show.)

In reading about the controversy, I stumbled across a paraphrasing of David Letterman's philosophy: poke fun only at things over which an individual has volition. Those beyond one's control are not appropriate.

G is correct that very few people tease me about things related to blindness. At first glance, it seems like blindness is entirely beyond my volition and therefore, under the Letterman Doctrine, sacrosanct. I would argue that there is a distinction between using misconceptions about a disability to evoke humor and highlighting the mirth in, for example, me using the phrase "at first glance." The former encourages misinformation to spread whereas the latter is about irony and facts.

As this entry might show, I am not completely clear on where the lines should be drawn when it comes to humor based on marginalized group status. I do know that audience matters and I find humor that perpetuates stereotypes to be inappropriate.

Should people make fun of blindness? Definitely. Should they do so without thought of audience and enabling misconceptions? Nope, unless their goal is to be such an ass that even a blind person can se it.

Wednesday, September 22, 2010

An Act of Will

Often when people behave in ways I find objectionable the route explanation is ignorance. They simply lack the knowledge to handle the situation in a "better" way. Expressions of my frustration at the state of affairs elicit the counsel to "have compassion" and sometimes that's even possible. Then there are the times that the ignorance takes on an intentional flavor making me angry.

There's an expression – burying your head in the sand –meaning a person has chosen to not take in knowledge that is offered to them. To me, this constitutes willful ignorance that I find unconscionable because the individual had the option to learn "better" and refused. In fact, I find it worse than someone whose behavior is based on a genuine belief that I am less capable, childlike, pitiable, or whatever. At least in that case the individual has paid attention long enough to listen to another perspective. I may not like their ultimate decision, but respect it as long as it doesn't deny me what I need.

What constitutes willful ignorance? Receiving a request from a dyslexic person for alternative formats with an explanation as to why and two months later acting surprised, baffled, and unprepared when the same inquiry is made. Witnessing how a sighted person assists a blind man and later not knowing what to do. Attending a panel discussion where a wheelchair user explains how insulting the phrase "wheelchair bound" is and continuing to use that phrase over and over. Being given a concrete set of steps for creating alternative formats that is simple and easily done and never doing it. In other words, literally tripping over the facts and pretending the path was clear.

As disabled people become a more visible part of society and their experience better articulated, I see this type of thing with greater frequency and find it utterly incomprehensible. How can a person be told what to do and refuse to do it? Why would they ignore information? What is the mindset that makes this behavior alright? I don't get it. AT all.

Unfortunately, in my own life I am dealing with a case of collective willful ignorance. While I might not understand it or know how to facilitate change, I do know my own limits. I will not lend my talents and energy to benefit a group that buries its collective head in the sand.

I just wish I could wrap my mind around the why of it. While it feels incredibly personal, I suspect it is not. Until I can comprehend the behavior, I know my unanswered questions will rattle around in the back of my mind. Insight welcome.

Wednesday, September 15, 2010

My Brain Hurts

With age is suppose to come wisdom, but as I grow older the human race becomes more baffling. In fact, the deeper my understanding of human motivation the less certainty I possess. And while I suspect this is not unique to the disability experience, I do think my membership in that group adds a layer of complexity to an already jumbled muddle.

Meeting a new person and having a great conversation cannot be taken at face value. We all have to ask ourselves if the friendliness was genuine. Should the answer be yes, most folks move on to determining their next step. I, on the other hand, must then field a second question: Was the friendliness based on a perceived obligation to be nice to a disabled person or on feeling sorry for me? Unfortunately, authentic warmth and that based upon obligation or pity look remarkably similar because the sentiment is genuine and the variation is only that of motive.

I don't think people realize that affability based on duty or sympathy is actually harmful because it sets up an expectation that will not be met. Everyone has mistaken another's actions as an overture of friendship and felt the resulting sting. Now imagine being told that person thought they were doing a "good" thing. It tends to make my brain hurt.

Another case of "The older I get the harder it becomes" revolves around people's "bad" behavior. Take my favorite situation of sitting alone at a party. I find it harder and harder to feel simple anger at such a state of affairs. Instead, my head starts to analyze the situation. What did I do wrong? What dynamics contributed to what occurred? Besides, being angry at behavior based on ignorance or not knowing what to do seems unmerited. More brain pain.

Then you have the truly obnoxious behavior. Perfect real life case in point. Recently, someone I have been acquainted with for years told me how great it was that with both eyes removed I had a chance to look normal. This came on the heels of a prior conversation in which he told me how off-putting my appearance is and how I should hide my eyes behind glasses to make others comfortable. Believe it or not, he's still walking this earth with all his "equipment" in tact.

Did I get angry? Definitely. However, about five seconds later my brain started explaining to me why what he said reflected his generational background, that maybe he mistook my dark glasses as concealing behavior, and I probably misunderstood anyway.

This all happens because I am constantly seeking understanding of why TABs react to disabled people in particular ways. My knowledge base grows almost daily and I can call upon it to interpret actions directed at me. It's like having the traditional angel and devil perched on either shoulder. My angel is a compilation of everyone who tells me to "See it from the other person's perspective" while my devil is the amalgamation of every disabled activist I've ever admired.

Often a blog entry emerges from whatever issue I am currently trying to understand. Prior to sitting down at the computer, I talk – some probably think endlessly – about whatever I am wrestling. This week I have discovered that I feel responsible for how people feel about their less than stellar behavior. Example: I'm with another person and the cashier interacts with my companion while processing what is clearly my stuff. If I were to say, "Umm, that's my stuff so maybe you should talk to me" and the cashier became upset about their own actions, I would feel like I caused their upset.

Fortunately a new perspective has emerged. When a person does something, they are responsible for how they feel about it. My role is to request a change in behavior and be responsible for how I feel about it. In other words, I didn't do anything so how can I be to blame?

Wednesday, September 8, 2010

Fox V. Reeve

In 1995, I lived in an apartment with three other disabled people. Watching Christopher Reeve's spinal cord injury (SCI) unfold on national television, believe it or not, we cheered. Finally, someone with an activist bent and massive public attention had joined our ranks. This was the beginning of disability rights becoming such a visible battle that nobody could ignore it.

Time passed and we became disillusioned. Reeve seemed completely focused on walking again. That was the media story at any rate. Cheers turned to curses.

I finally forced myself to read "Still Me," which is Reeve's autobiographical account of his life with emphasis on the SCI. I was extremely worried I might start throwing things, but that didn't happen. Unfortunately, neither did I discover a markedly different story from the one fed to us by the media. The man had accessibility consultants. Who has those?

In many ways, celebrity and money insulated Reeve from the lack of physical access most wheelchair users encounter daily. Even hourly. Perhaps that explains why instead of becoming an advocate for ramps, elevators, and open minds, he went after a "cure" with single-minded focus. I know his foundation is committed to helping people get what they need, but from what I read it was mostly in relation to quality care and access to equipment to keep bodies in good physical condition allowing for the "cure" to be administered when it was found.

A few years later, Michael J. Fox announced he had Parkinson's and I didn't allow my heart to even hope. If Reeve, with his background, didn't fulfill my dreams, Fox seemed like something beyond a long shot. Wrong again. From the moment I heard Fox speak about his condition, I was elated. He articulated Parkinson's positive impact on his life. He spoke about his condition like it wasn't the end of the world. He expressed a desire to find a cure, but in the meantime LIVES his life to the fullest. Happily.

An argument can be made that the nature of Fox's and Reeve's disabilities explains their different reactions to their new circumstances. A difference also exists in terms of sudden onset versus gradual decline. Finally, Fox had years to accept his condition before he presented it to the public whereas Reeve was instantaneously in the spotlight.

All of these things are true yet to me they do not adequately explain the difference in approach. If the nature of a disability had a strong correlation with how a person learned to cope, then we would see this relationship in the research and that is not the case. In my personal experience, rapid change from one stable state to another mostly stable state is far easier to adjust to than a situation in constant flux, which is the opposite when you compare Reeve and Fox.

Finally, the element of time. I've read the books both men penned and at the approximate same time post accident/diagnosis, they were remarkably distinct in how they related to their disability.

The true explanation may lie in their personalities. Through his words, Reeve painted a picture of a serious man focused on succeeding. Fox, on the other hand, is a self-proclaimed incurable optimist. It is easy to imagine approach to life impacting approach to life-changing circumstances.

Whatever the reason, these two celebrities publicly reacted to their conditions disparately and I have started speaking about how people cope with disability by describing The Reeve Approach then The Fox Method. To me, it illustrates a fundamental difference in how they each conceive of their condition. Is the disability a burden to be thrown off as soon as possible or is it something to be appreciated for what it teaches, dealt with to optimize happiness, and potentially some day laid aside for the next life-changing experience? Who knew that in a Alex P. Keaton versus Superman contest I'd be opting for the conservative.

My way of dealing with disability mostly follows The Fox Method, except I feel no need to put aside either blindness or my appearance issues. I would gladly give away the chronic illness. Gratis.

Sunday, September 5, 2010

Equal versus Equitable

Put two proud, angry and strong disabled people together and interesting ideas will abound. This year I acquired such a person and she keeps saying things that make me think. Fairly fortuitous since I was in need of new blog material.

Here I write constantly about how TABs behave and why for one reason or another it bothers me. It would be easy to have the impression that I want special treatment and more consideration than the average person gives to the average stranger. And, in a way, I do.

When there are 3 kids and 2 chocolate chip cookies, someone must divide them into 3 servings of equal amounts. It is crucial that each child feel the portioning was fair. In life, we often apply this principle to our behavior – treat people the same way and it will be fair. In actuality, that is not remotely the case.

Loading a family's books into a shelving unit, you would naturally put the child's books near the bottom and likely the books interesting the tallest member of the family at the top. Equal would be even distribution of all the books over all the shelves, but would it be fair? Not particularly since shorter individuals would need to climb stepstools. allocation by height and interest is equitable because nobody would need to go to extra effort to achieve the same goal.

When I am isolated in a crowd and feeling invisible, nobody is violating the laws of equalness. They are making eye contact with another person and carrying on a conversation. Equivalent eye contact with me will get them exactly nowhere, so I remain solitary. Having to make additional effort to get my attention creates imbalance, but isn't that equitable?

Wednesday, September 1, 2010

Becoming Invisible

Sometimes I feel invisible as if I could walk through a room of people naked and nobody would notice. On my part, it's neither intentional nor is its timing under my control. I have also not dawned Harry Potter's cloak of invisibility. Suddenly, without even a puff of smoke, I'm gone.

Because I cannot see people's eyes, I cannot say whether they skim past me, look through me, or simply never turn in my direction. Reading the minds of those around me to truly know what thoughts they entertain is also beyond my abilities. I can say with some authority that people behave as though I am not there. And while I might be small, I'm not microscopic.

The other night I went to a concert with two women I know well. A good friend of one of them met up with us. When we met, he shook my hand and was told my name which my friends used throughout the evening. He giggled with the other total stranger in my female trio. As he had with the other women, he hugged me goodbye. At one point, he made a comment -- "They're talking about people we don't even know." -- that might have been directed at me. I attempted to engage him in small talk twice. While he politely answered my questions, there was absolutely no effort made to further the conversation.

It took me a while to realize it, but for him I didn't really exist except perhaps in relation to the other women. Had he not shaken my hand or hugged me goodbye, he would have been judged rude by my companions. Ditto with my direct remarks to him. His one comment possibly directed at me served the purpose of reinserting himself into the conversation. Otherwise, I was not present.

Here's the thing that seems so contradictory: he is a genuinely nice person. My friend has known him for over ten years and she doesn't spend time and energy on mean people. Even I could tell he was a good person simply by the way he handled himself and the way he spoke. Yet somehow I vanished. Into thin air. For most of the night.

Melissa Etheridge has a line in "Nowhere to Go" that summarizes my theory on all this. "And they don't understand what they don't see/And they look through you and they look past me." In other words, this otherwise nice man couldn't wrap his mind around my existence, so he disappeared me and because I was disappeared, he would never understand me.

Maybe I was showing too many scars. I had on a spaghetti-strap dress, so you could see several, one pretty huge. Maybe I finally met the one person put off by me wearing dark glasses. (A habit I will gladly stop as soon as I know my lack of a right eye won't gross anyone out.) Maybe he didn't think we had anything in common. Maybe he'd never met a blind person. Maybe I had bad breath or smelled.

Honestly, I don't even need to know the why of it. My interest lies in how this particular tendency contributes to those things that make me most frustrated, namely social isolation, trouble making friends, and lack of dates. With my actions, I can force people to notice me. Plaguing this man all night with questions would have done the job, but that is so not my style. I refuse to become obnoxious in order to compensate for another's lacks.

Yet I still involuntarily disappear into thin air. If I could only do it at will, I'd have a far more interesting life with a large bank account.