Recently I’ve had a few people actually ask me about my disability (a rare thing, but more on that later). So while I have mentioned it before on my blog, I thought I would finally get around to writing about it. I’ll post today about my personal experience and then have two more posts over the next few days about disability, theology, and faith.
In case the title of the blog didn’t clue you in, I only have one hand. I was born missing my left arm below the elbow. It is not genetic or drug related, but to this day doctors aren’t sure what other strange environmental toxins causes limbs to stop growing in the womb. But I have never known any different and learned how to do most everything with just one hand. Some things (like hammering in a nail) continue to elude me, but I’ve managed to figure out my own systems for most things. Missing an arm is a strange disability. I mean I am missing an entire limb, but am not really considered handicapped by many. I’m not handicapped enough to get a “Handicapped Parking Permit” and I’ve come to realize that making buildings handicapped accessible refers only to making buildings wheelchair accessible. I continue to struggle with many doors, most sinks, and all child safety systems (which I think require 3 hands for anyone to manage). Granted, I know I don’t face anywhere near the day to day challenges as many other disabled people. But it has nevertheless been interesting to live life as a disabled person who isn’t really permitted to call herself disabled.
I was never upset about missing an arm. I was never angry with God or any of those expected sorts of responses. I of course was called all sorts of names in elementary school. And I never understood why people thought it was funny to tell “stump” jokes around me. But missing am arm is part of who I am so it just had to deal with it.
Throughout my life I have worn various prosthetic arms and have hated them all. I had a hook as a toddler – that didn’t last long. I remember being told that when I was six I could get a new arm and waiting with anticipation for that day. I ended up being extremely disappointed with the contraption I ended up with that had straps that wrapped all around my body. I had been expecting an arm like Luke Skywalker’s. That was my first introduction to the wide gap between real science and science-fiction. Then in Jr. High I was fitted for two arms. One was a purely cosmetic arm that was modeled after my other arm. I could paint the nails and everything. If I wore long sleeves and people didn’t look too hard, it looked somewhat normal. The other arm was a myoelectric one that weighed a ton and looked hideous. By flexing certain muscles by the electrodes I could open and close the hand. It was fun for trying to pinch my brothers with an iron grip, but the huge battery pack sticking out of the arm was just too weird. I wore those for about 4 years and then gave up on prosthetic limbs altogether. And in case you were wondering how I managed to have 4 prosthetic arms in my life when those things usually run at least $20,000 apiece, I somehow was admitted to the Scottish Rite Hospital in Dallas which provides free services like that for children. But as nice as that was, the arms were just not useful to me. They were cumbersome and awkward with no real fine movements or sense of feel. Technology in arms has not developed much in the last 30 years since most research has gone into the much more necessary prosthetic legs. After abandoning my prosthetics (I still have one btw) I said I would never get another one until a real Luke Skywalker hand had been developed (which I saw a few years ago that there is a huge reward being offered anyone who can develop something like that, but our science is nowhere near that advanced yet). Plus as an adult I would never have the funds to cover a “cosmetic procedure” like getting a real arm.
What I find most interesting are the reactions I get from people. Talking about a person’s handicap is seriously taboo in our culture. Most adults avoid the topic and get embarrassed when their children point and stare. And it is the children who do ask, children and the poor. Children I understand. They have not yet been conditioned to pretend to ignore the realities of others, and as they ask “what happened to your hand?” there is always the unspoken “and will it happen to mine?”. Parents usually hush their children up and apologize to me for their audacity. But what really surprised me were the reactions I receive from the urban poor. There have been times when I have passed panhandlers asking for money, but once they see my arm they start apologizing for asking me for money. They ask me if I am okay and if I need anything. Similarly in cities with toilet fees, I’ve had bathroom attendants wave me through without charge because of my arm. The reaction I get is that of pity. It is an odd thing indeed to be treated by panhandlers on the street as pitiable and more in need of help than they are. It is something I have yet to figure out.
I think the most interesting and moving reaction I have had to my arm occurred in Latvia. I went on a missions trip to Latvia and Russia when I was in high school. At one point we visited a Hospital/Orphanage, although it was neither of those things in a traditional sense. It was a place where children born missing limbs or with other defects (often Chernobyl babies) were taken to be removed from society. This children were amazed that I as a “deformed” person was allowed to function as a normal member of society. It broke my heart that all of these kids were not allowed to offend the general public (or be a reminder of a government accident) by allowing people to see them. I have no clue if such homes still exist over there (I was there just a year after the fall of communism), perhaps in a cash strapped system there are no funds for hiding away the undesirable.
So I don’t mind talking about my arm. It is more embarrassing and awkward to have other people be embarrassed by it than for people to just ask about it. But if there is one reaction that seriously annoys me, it would be the one I get most often. It’s when people ask me if I am right or left handed. Perhaps people think this is a “safe” way to talk about my arm, but it drives me nuts. I don’t freaking have a left arm how can I be left handed! But apparently asking that question seems like the most natural thing ever to tons of people. But it is the reactions I get within the church that confuse me the most and I will address those over the next few days.
