Inspiring Lower Expectations

Tell a TAB that they are inspiring and the person will be aglow with pride. Compliment me in the same way and I'll duck my head and try to become invisible, which of course never works when I want. It is almost as bad as being told I'm amazing.

A seatmate on an airplane asked me a crucial question, "Isn't it good if by your example you cause another to do something worthwhile?" Since nobody can argue with that result, of course I agreed which began me thinking. What is so objectionable in being an inspiration?

I realized there are two forms of inspiration: the role model type and the amazing flavor. They differ in that in the former inspiration has led to act and achievement whereas the latter is focused on emotion.

Their common ground is that of expectation. In order for something to inspire, it must seem out of the ordinary for human behavior. An obstacle assessed as insurmountable must be overcome. Circumstances determined as utterly bleak must have been successfully plumbed for happiness. A perceived burden must be shouldered as though it is feather-light.

If it were simply about behavior out of the ordinary for human beings, I would have no objections to engendering inspiration, but it's not. People based their expectations on the limits they assume my disabilities impart. These constraints are typically based on socially perpetuated beliefs about disability as opposed to the reality. Thus people think I can't bake, so when I do they find it inspiring. This makes me crazy.

If the inspiration leads to an individual behaving differently and accomplishing something, I have more tolerance. Perhaps this is because the inspired person has perceived us to have common ground. They are not viewing me as other and setting the bar lower as a result. Instead they realize my reality has traits familiar because they are present in their own lives and use an identical yardstick to measure both of us. This feels far less like being thought less competent and hence less objectionable. It also helps that a person is getting more out of the comparisons than a surge of emotion.

It dawns upon me that there is a subset of inspiration that has always been nebulous to me. I tend to engage in these discussions when people start gushing about my amazingness and I feel obligated to object. Sometimes the person says something like, "I can't sow, so I'm amazed you made that skirt." When questioned, they seem genuinely convinced that it isn't my blindness that makes the act seem extraordinary, but rather the common ground we share as human beings.

So I suppose my objections to those who find me inspiring are solely related to whether or not the person sees us as the same or different. It's about whether they use the same yardstick to judge me as they use to judge themselves. The instant my disabilities inspire them to create a separate set of expectations, it becomes insulting. If the expectations were higher, I'd probably find it irritating, but somehow they're always lower.

Body Image Rears Its Ugly Head

This is hard to write, not because I'm unearthing unfamiliar feelings but because I hate contemplating what it all means. Bottom line is that I feel like I've been incredibly wrong and failed. Both make me a wee bit crazy. Okay, fine, crazier.

It all began with a man and a crush. A few times in my presence, he very obviously noticed other attractive women, once almost turning completely around to keep the beauty in his sights. Because the crush had moments of it being mutual, I knew he was at least alright with my appearance, but each time he ogled another woman, I felt particularly ugly. Obviously what he was staring at was somehow superior to gazing at me.

Fast forward to this past spring. Two people – they're best friends – came into my life. Both have this habit of talking about other women with major emphasis on her beauty, her wardrobe, and the impact it has on them. It's like this constant barrage of reminders that appearance is noticed by everyone every second of the day. As a result, I am constantly aware of the fact that others notice me and since I know the majority of people out there have issues with how I look, it becomes a continuous prod at one of my vulnerable places.

An odd side effect of their constant noticing of other women is that when they say nice things about how I look, I discount them out of hand. They say it about everyone, diluting believability to almost nothing.

Then, of course, there's my lack of eyes. I've spent the majority of this year missing at least one eye-like entity from my head. At the moment, I have one prosthetic and one socket with a sort of blank in it. Dark glasses have been Ditched, so it's all there for anyone to see. And evaluate. Probably not all that favorably, because I doubt most think, "She's made a choice to not cover up anything. Good for her."

If you've read My Brain Hurts, you know that at least one person has vocalized their thoughts about my eyes, their disconcerting nature, and the strong opinion that I should hide them until I have prosthetics.

Before all of this happened, I was good with my appearance. Although I knew others had issues, I had a clarity that that was not my opinion and thus secondary to what I felt. With what seems like daily reminders of how much people notice appearance, my positive body image is cracking. It's not so much that I suddenly dislike how I look, but rather it's that my approval has been drowned out by a flood of other voices.

This has not been helped by things like the ophthalmic reconstructive surgeon asking, "Are you having more reconstructive surgery?" implying there was something needing fixing. No small children have run screaming, but my brain argues it's a fluke.

I have gained a new found love of my blindness. Constant visuals of how others look in relation to my own image would be making this far worse. Actually, it's highly likely that my positive body image was possible only because I lacked the vision to see how much my appearance diverged from what's acceptable. Maybe what I proclaim about self-acceptance and body image can't fairly be applied to sighted people. Maybe if I could see myself clearly I'd be horrified.

I like to think I have this great body image and I'm finding it hard to admit right now I feel out of touch with those positive feelings. My approval is buried under this thick layer of muck composed of a continual awareness that everyone is evaluating me and a certain knowledge that most aren't staring out of a desire to gaze upon something attractive.

I abhor the fact that my body image is being so twisted. There's a self consciousness within me that I've never experienced in quite this way. The thing I hate most, though, is the fear that my body image can only be positive because I have built a world that allows me to be oblivious to other's perceptions. If I lived in reality, I couldn't possibly maintain anything close to a positive body image. Therefore, denial becomes an essential component of liking my appearance. Denial isn't healthy making me not healthy. Peachy.

It Gets Better

Dan Savage, sex columnist extraordinaire, has embarked on a mission to give hope to lesbian, bisexual, gay, and transgendered (LBGT) youth who are facing ridicule and bulling from their peers. Called the It Gets Better Project, the point is to talk about how good life can be once you leave the harsh high school environment. For more information, go here.

As I watched the accompanying video, I began considering how much the equivalent was needed for disabled teens who face similar potentially rough high school years. I can totally tell a bunch of kids that it does get better, right? Actually, not exactly.

Granted, my high school years were a kind of miserable that I haven't experienced since and I prefer now to then without question, but the issues I had back then with people's attitudes and behavior hasn't magically morphed into some idyllic world. I struggled with social isolation, people not understanding, and being underestimated as a teen. From my blog, you can tell that it hasn't particularly changed.

When an LBGT teen leaves high school and either enters the work force or goes off to college, they are suddenly endowed with freedom allowing them to pick their friends, environment, and activities. eventual financial independence strips away the last of the constraints on lifestyle choices. In modern times and with modern conveniences, Jane doesn't need Dick to survive and thrive.

As anyone with a physical disability can tell you, we need other people on a regular basis. It is as much a fact of life as the need for oxygen. This reliance on others places constraints on our lives – on our choices.

From buying groceries to reading annoying print mail, I rely upon people to do things small and large. If Jane wants to have dinner with Joan, she gets herself to the desired place, meets her friend, picks her meal from the menu options, pays her portion of the bill by glancing at the check and adding things up, then gets herself home. When I want to have dinner with a friend, I must figure out how I'm getting there, pick a place that can feed me, rely upon my companion to read the menu, ask someone to tell me how much my food cost, and arrange for a way home. It's a completely different reality full of limitations on my choices.

Savage's It Gets Better Project essentially tells LBGT youth that life will improve because they will have the ability to shape their lives. If I were to start an It Gets Better Project for disabled youth, I would have a different sort of message. In fact, my project would more accurately be called the You Get Better Project because while I face the same issues now, I feel radically different about myself and that makes all the difference in the world.

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.

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.