"Who are my people?"

Note – this piece is an adaptation of a livejournal entry I wrote a few weeks before about a question I posed to myself after an issue concerning a close friend came to light.  As I have no desire to reveal his or her identity, I’ve reworked it to delete all of the sensitive material.  However, easily 95% of the original text, and the crux of the question (and answer) remain.  As both these needs have been met, I’m comfortable with the publication of the reworked piece of writing.

"…Am I being non-supportive of 'my people'? Who exactly are 'my people'?"

     Well, these are questions that deserve an explanation if ever there were any. Unfortunately they require more backstory than "Hamlet"…

     I can honestly say I never considered myself "disabled" as a child. Sure, I have a limp and was somewhat slower than my friends, but other than surgeries every few years my self-image wasn't radically different from my peers. I have my parents to thank for that. From the age of five onward I was mainstreamed into a normal classroom setting in a public school. Aside from physical (gross motor) and occupational (fine motor) therapy once a week, I was your average child. I even took "normal" gym class with the other kids in my class, and participated in every way that I could - for example, every year I took part in the "Presidential Physical Fitness Challenge" along with everyone else, doing sit-ups, pull-ups, and running track with everyone else (Although now I find the memory a bit laughable, it was a confidence-builder and helped me gain social acceptance, which I'm sure is what the teachers had in mind in allowing me to join in).

This continued through the years, from elementary to middle school, and into high school. However, as the years went by and my peers and myself grew up, there was a sense of separation on my part. In the field of sports, no longer was it kickball and slow-pitch softball that I had a chance in reasonably competing in. This was a world of football, soccer, and wrestling in which simply striving to finish wasn't good enough. Winning was, and in that aspect of socialization I was now relegated to the lineup of "last picked," which anyone with asthma, clumsiness, or general lack of athletic prowess knows all too well. Masculinity as our culture views it was being denied to me.

     At the same time, there was a great variance in my maturity level. In some ways I'd say I was more mature than the average person of my age, owing to my surgeries and general medical issues. Going through experiences where you could very well not survive has a tendency to force you to look at things from a different, more adult perspective. At the same time, because of my time spend having and recovering from various surgeries, I was woefully unprepared for the world of interaction with the opposite sex (a fact I still feel to some degree). As I was now cut off from both sexes (males and sports, females and dating), it's safe to say I retreated. Retreated to the safety of music, books, and my small but loyal group of friends (the vast majority of which I am still in contact with to this day. Loyal might be the understatement of the century - I am indebted to them in ways I'll never be able to explain).

     After my high school years I did what I was supposed to and attended college, but by that time I was thoroughly sick of academics. Considering that I started attending school for my disability before I was three, we're looking at 14 straight years of school attendance, and I was ready to break free. By coincidence I was playing bass in a band with some of my close friends, and people that would soon become close. By my second semester, I dropped out and took a chance that no disabled person is expected to - I was in a band! Over the next 2-½ years I practiced twice a week, worked a full-time job, recorded demos, and played shithole clubs for no money. In short, I took the path well traveled by my able-bodied adolescent male counterparts. I was "normal."

     In retrospect, it was during those years that I came to terms with who I was and my place in the world. With my entrenchment into the supra-male world of rock band, I was able to balance my feeling concerning my disability with a newfound sense of testosterone. The biggest gain I achieved during those years were not songs I recorded, nor shows played. It was a sense of self-esteem that I was in desperate need of. I exited that time in my life with an understanding of who I was, and while I was no Lothario, I had made gains in my understanding and interaction of women.

     It was also during these years (1993-1997) that I was playing and coaching on a local wheelchair basketball team. Partially to be able to compete in an athletic forum better suited to my skills, and partially to interact and provide a role model for younger kids with disabilities, it was on this team that I became close friends with ****, the newly-engaged I spoke of earlier (although we had known each other throughout the years, this periods gave us the chance to solidify our friendship). Through the make-up/break-up/make-up relationship with April, **** was there to provide support, and our friendship was strengthen. Through her I met a group of people with disabilities that were a self-contained group of friends, and over a period of two years I hung on the fringe of their group.

     The surprising thing I learned after observing them was that I had no desire to become a part of their group. One of the reasons was the insulation factor - every outing was composed of the members of the group, with hardly anyone from the "outside" ever joining them. Don't get me wrong - I understand the comfort that a group of your peers can bring you, especially when you're a member of a minority group. However, this group seemed to exclude friends without disabilities simply because they were different. That struck me as simple discrimination of the most ironic form.

     What was worst than that was the self-loathing issues I witnessed by the 8-10 members of the group. Many a conversation was filled with talk of being "crippled", "a gimp", and other derogatory terms toward themselves. While I'm certainly no prude when it comes to the use of language, I felt that the amount and strength of their usage of these and other terms signified a lack of understanding about who they were and what their place was in this world (as I spoke of earlier). It has seemed even to this day that this group of people can only identify themselves as "disabled," and nothing else. I believe that it a fundamental problem when one can only identify themselves with a single characteristic. It was these issues that led me to distance myself from the group as a whole (even though I personally liked many of them, and would have no problem spending time with them on a more personal level. However, the very group dynamic I've spoken about precludes this from happening often).

     Which bring me back to the question I posted yesterday - "Who exactly are my people?" - that's by far the harder question to answer. It's one that I've struggled with for a large part of my life, and I suspect that I'll never be completely comfortable with the answer I find. I haven't lived my life as our culture defines the typically "disabled" person - I've attended public school in "regular" classrooms. I have the ability to drive. I'm a professional musician who’s performed onstage and has gotten paid for professional recording sessions. I'm engaged to a "normal" woman. I've spent the majority of my life around the non-disabled, and can count the number of friends I have with disabilities on one hand.

     However, it still strikes me that I'll never feel completely at ease in the world of "normal" people. Every time I notice someone staring at me, or a child asking his or her parent, "Mommy, why is he walking like that?" I can understand why this group would want to seclude themselves and be with "their own kind." There's safety in numbers, especially when it's people that have faced the same challenges that you have, and therefore know what you've gone through. I feel that I can understand what it's like to be a child of an interracial couple - being torn between two different cultures, wanting to be a member of both while not being able to be a member of either fully.

     After 26 years of living, I think I can say "who I am" with confidence. I will never deny my disability, as it as been one of the biggest characteristic in shaping my personality. At the same time, it's nowhere near the only facet of who I am. Yes, I am disabled. I'm also a man, a musician, a scholar, an athlete (albeit on four wheel instead of legs), a partner and lover to my significant other, and a multitude of other things. If you can narrow yourself down to one personality trait, it wouldn't matter if you're disabled or not - you'd be a pretty boring person either way.