Eye of the Beholder

Telling people about my eye removal unearthed a microcosm that spanned the variety of ways people perceive disability. My usual announcement went something like this: “I’m having my eye removed. Sounds way more dramatic than the reality. It’s no big deal especially since it doesn’t really work.”

Reactions fell into three basic and to me predictable categories. The broadest group was composed of people who tell me I’m amazing for accomplishing basic tasks, see blindness, etc., as a burden, and tend to cast me as heroine in the drama of my life. Even though I tended to tell such people in a manner designed to prevent strong responses, some managed to do so with such gems as repeated cursing. For them, my eye removal represented a Major Tragedy.

Then there were the collection of people who know me and have come to view my blindness as something that makes me different. While they do not believe my life to be tragic, they still often see me as inspiring. Their reaction tended to be less intense; along the lines of “Wow. That sucks. I’m really sorry.” In other words, Copious Concern.

Finally there are close friends who tend to accept blindness as a fact of my life needing to be taken into consideration but not pitied. They said things like, “I know you don’t use it, but that is going to kind of suck.” I mentally dubbed this group Sensibly Sighted.

Because these were friends, I allowed the announcement to turn into a dialogue. “It’s just an eye and takes about the same time to remove as an appendix. Seriously, it’s no big deal.” The conversation typically ended when I proclaimed, “It just seems like a major thing to you because you use your eyes.”

In my mind, surgery engendered more upset than the organ’s loss. The short procedure time, outpatient status, and my own lack of attachment to the body part made me pretty much blasé. I mostly kept thinking, “Get this thing out of my head already.” Others’ reactions were dismissed as just sighted people showing their own attachment to a body part upon which they relied. A small voice in my mind sometimes added “too much.”

Now, as my recovery crawls along in the dust of snails, I have come to realize that the human body’s response is more in keeping with the Sensibly Sighted and possibly even warranted Copious Concern. Seemingly, removal of a body part, working or not, upsets your system. Who knew?

When I expressed this surprise to a friend, he said, “Jen, I mentioned it might be a big deal.” My response was some sort of muttered reference to his bias because of sight. Luckily my friend was gracious.

To me, this physiological response constitutes betrayal on the part of my body. I have no attachment to the orb, but my physical self refuses to get with the program. Apparently blood and tissue haven’t absorbed my beliefs about disability through their cell membranes.

Sometimes I need to behold my own life not through the eyes of disability, but with a more fundamental understanding that loss is loss and theory cannot repair cut muscles and swollen tissue. Seems pretty simple in hindsight.

Bit of a Break

I’m having surgery tomorrow and have decided to take the next two Wednesdays off from posting here. I’ll be back by February 24 probably with new material since the medical profession is almost as inspiring as airport staff.

Beyond Acceptance

Today “boys” and “girls” we will begin with a story. Once upon a time, Jen took a shower and put on clothes that made her feel sexy, then headed off to a party with a friend. Upon arrival, the friend introduced her to the hosts and Jen presented a plate of cookies. Because the friend did not know anyone else in the room, there were no other introductions to be made. Jen hung out with her friend for a time, then told her she was under no obligation to be by her side all evening, so the friend moved off. Sitting on a comfortable couch, Jen drank her water and listened to the animated conversation all around. When somebody sat next to her, she smiled and said hello, but nothing came of it. From time to time, the friend came over to make certain Jen had what she needed and at the end of the night, they went home, the friend having thoroughly enjoyed herself.

Here are my two questions: did the people at the party demonstrate acceptance of Jen? Was Jen treated reasonably by these strangers? The reality is that nobody did anything wrong and yet it was not how I, at any rate, want the world to be.

Recently I read somebody’s wish for 2010. “People will understand children with disabilities do not have a disease; children with disabilities are not looking for a cure but ACCEPTANCE.” While I agree completely with the sentiment, my heart yearns for something that reaches beyond a solitary person isolated within a crowd.

Let me tell you another story. Jen bakes some of her killer chocolate cupcakes, puts on a cute outfit, and goes to a potluck with a friend. Upon entering, she is introduced to the crowd in the kitchen and offered a chair, which she accepts. The person beside her begins to engage her in conversation that goes on for a time, until he’s distracted by food preparations. Turning to another cluster of talking people, Jen listens until something she does indicates her interest and the group grows to encompass her. The night passes with talking, laughing, and both Jen and her friend go home having thoroughly enjoyed themselves.

The contrast between the two stories is obvious, whereas the reasons for the difference are elusive. There are no striking differences in education, political bent, socio-economic status, or gender balance. While the baked goodies varied, the cupcakes can’t be that spectacular. Clearly, in both groups I was accepted, but only in one was I included.

Age was the only factor varying between groups, with the potluckers all under 33 years old, and the partygoers above that age. At first glance there is no obvious connection between behavior around disabled people and years spent on this planet. But if you know something of the history of special education, it makes more sense. Starting in 1977, public schools were required by law to educate disabled children in the “least restrictive environment.” As this policy took root, disabled children’s presence in the regular classroom became more commonplace. Non-disabled children educated alongside their disabled peers gained a familiarity with disability that older generations lack. Such exposure breeds an ease around disabled people not readily achievable in other ways.

It may be that the media has been a force for constructive social change. With positive images of disability becoming increasingly pervasive, the younger generations have been exposed to more accurate portrayals of disabled people during their formative years. Maybe the potluckers had a different mental context through which they perceived me.

At a fundamental level, neither age nor media exposure are adequate explanations for ease around disabled people, and even being “at ease” around the disabled does not necessarily mean immediate inclusion. My pet theory is all about the subconscious. Without even realizing it, people see somebody like me and discard me as potential friend, date, or even interesting conversationalist. Simply put, it doesn’t dawn on people to even approach me. I believe that familiarity with and exposure to positive images of disability have shaped subconscious processes in younger people making them more likely to view me as a person. After that, conscious choices play a role, but that is for another day.

My dream is to have a world where I am not just accepted but also included. I only hope a generosity of spirit amongst humans becomes more rather than less commonplace. Including a disabled person doesn’t need to be about pity, being nice to the disabled person, or what a good human being does. It can simply be making an effort to overcome subconscious processes with conscious choice.