Category: Disability

Disability – The Bible and Perfection

Posted on

To conclude my reflections on disability I want to focus on the issue that has been the biggest ongoing struggle for me to deal with, especially within the church. It is the concept of perfection – the idea of needing to be flawless before God. For most of my life, I thought that referred to spirituality, but I have recently been exposed to those who promote physical perfection as necessary for truly serving God.

To back up a bit, in our culture perfection (or at least the absence of any visible physical flaws) is worshipped. We all hear about the millions of dollars spent on cosmetic procedures and the obsession with having a sexy body. But beyond that such obvious flaws like missing a limb are becoming less and less tolerated. This of course ties in with the whole abortion issue. Parents are now bringing “wrongful life” lawsuits against doctors if the doctor doesn’t inform them with enough time to abort that their child will have a defect. Apparently giving a child with a defect a chance at life is just wrong in their eyes. I’ve had people argue to my face that abortion is needed in the case of birth defects. To one such person, I asked, “so are you saying I should have been aborted because I am missing my arm?” Her reply – “I wasn’t talking about you, you’re smart.” But the assumption by many in our society is that unless you are perfect you don’t even deserve to be born. I find it easy to disagree and fight that assumption in culture, but then I find it in scriptures and the church as well.

I had always heard the language of “pure and holy sacrifice” referring to the lambs led to slaughter. Then one day I read the stipulations for Priests making offerings to God –

Leviticus 21:16-23 “The LORD said to Moses, “Say to Aaron: ‘For the generations to come none of your descendants who has a defect may come near to offer the food of his God. No man who has any defect may come near: no man who is blind or lame, disfigured or deformed; no man with a crippled foot or hand, or who is hunchbacked or dwarfed, or who has any eye defect, or who has festering or running sores or damaged testicles. No descendant of Aaron the priest who has any defect is to come near to present the offerings made to the LORD by fire. He has a defect; he must not come near to offer the food of his God. He may eat the most holy food of his God, as well as the holy food; yet because of his defect, he must not go near the curtain or approach the altar, and so desecrate my sanctuary. I am the LORD, who makes them holy.”

Having been taught my whole life that “God made me this way” reading those words was hard. Missing a limb, being the way God intended a person to be, disqualified them from serving God. We weren’t perfect enough to for God. (granted women were automatically disqualified too, but that’s a different issue). Not only were we not perfect enough, we desecrate the sanctuary by our presence. Sure it could be assumed that after Christ came as a “perfect sacrifice for all” that such restrictions are lifted, but what really got to me was discovering that there are branches in the church that still promote these stipulations. In the Orthodox church you cannot be in church leadership if you have a physical defect (well except for the eye thing, they waive that one for people with glasses).

I honestly don’t get it. How does not being physically perfect disqualify a person from serving God? How does this make me any less holy than others? Sure there were tons of purity laws in the OT, all of which could be forgiven. But this was impurity for life. Reading passages like this and hearing about the policies of the Orthodox Church seem to me to fit more within the mindset of the Communists who sequester away the deformed children in Latvia or the parents who sue doctors for the “wrongful life” of their defected child. But while my worldview allowed me to accept such opinions from Communists and abortionists, I can’t seem to wrap my mind around how it fits in the Bible and the church. And so far I have yet to hear any interpretation of this passage that really makes sense. At best it just gets lumped in with all those other “Ancient Near-Eastern worldview” passages (like bashing babies’ heads against rocks) that basically just don’t make sense either.

So where does that leave me? I want my theology of disability to be that God made me to be me and uses me as I am. But the Bible seems to contradict that and tells me that I am unwanted and incapable of serving God because of my arm. I have chosen to just go ahead and serve God (as a disabled woman that obviously isn’t in the Orthodox church), but some days that choice can be hard to align with scripture.

Read more

Disability – Faith and Identity

Posted on

I am writing this week on my experience of disability – of missing my left arm. Growing up I heard two very contradictory messages about my arm from the church. The first was the mantra I was taught to tell people who asked about my arm – “This is the way God made me.” This was the way God wanted me to be and since we can’t question God there is no use in worrying about it. I’m missing my arm that’s just life. The second message I heard though was – “God can fix it.” Apparently even though God made me this way, He could fix the mistake if he wanted to. There were generally two options given for as to how God could fix me.

First, I have been told countless times that if I just prayed with enough faith for God to regrow my arm he would (the whole mustardseed and mountains thing). I always found this response odd because I grew up in Dispensational Cessasionist churches. We didn’t talk about miraculous healings, but apparently my arm was an exception. There were the times I believed that message and prayed for my arm to grow (and of course assumed my faith was too weak when it didn’t). There was never any mention of God’s will or basic laws of nature stuff, just the assumption that of course God would reward me with a new arm if my faith was strong enough. As I hear stories now of people trying to pray other physically manifest aspects of personality out of people (ADHD, Gayness..) I realize how utterly offensive such messages are. Just because we don’t fit into a cultural definition of normal, we are told that we must pray that God will change us to fit the dominant mold. Who we are is apparently less important than appearing to be just like everyone else.

The other way I was told that God would fix me would be in giving me a perfect resurrected body. It was apparently supposed to be a comfort that when I go to heaven after I die I will have two hands. But honestly, will I? If my life and my personality have been shaped by having one arm, why would my resurrected body necessarily be different? I don’t pretend to understand any of that stuff or assume how much of an echo of ourselves we will be in eternity, but the assumption that I would have two hands in heaven was always strange to me.

I guess my perceptions of God have changed over time. Do I still think that God “made me this way”? Maybe, I honestly don’t know. I don’t believe God micromanages everything, or does stuff like this to punish or build faith. But in creating me to me be, I can say God made me this way. I do believe in the possibility of miracles, but don’t see them as rewards for faith or as really all that necessary. And I don’t believe in wishing for a miracle to make a person appear more mainstream. And I’ve learned that living incarnationally in the world now, whatever our personal lot, is much more important than pining after what Heaven may be like. I want to be who I am not in spite of or in reaction to my arm. It is part of who I am, but doesn’t completely define me.

Read more

Disability – My Experience

Posted on

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.

Read more

Racism in my Life

Posted on

I was having a discussion with friends recently about racism and our personal experiences with understanding race issues. All of us were white and everyone but me grew up in neighborhoods that were completely white as well. They all remembered the first time a non-white person moved into their neighborhood. I though grew up in Dallas where the majority of my classmates and most of my teachers were African-American. I then moved to Austin when I was 12 and encountered an even larger ethnic mix. We lived in a mostly Jewish neighborhood, but I had friends who were Korean, Russian, Egyptian, Brazilian, Indian, Mexican, and Iranian. The dividing lines in Austin were less racial and more economic and educational. Most of my friends had parents involved either with the University of Texas or in the lucrative computer technology boom. So I didn’t think much about racism until I had to deal with it head on in 8th grade.

Austin spent the majority of the 80’s and 90’s imposing forced integration on its school system. Kids from one sort of ethnic neighborhood were bused across town to go to school in neighborhoods that were generally of a different racial mix. So for Jr. High I got to catch the bus at 6AM to go to school in East Austin. My school also happened to be the Math and Science Academy to which I applied and joined. Those of us in the academy represented just about every race and nationality, but the kids in the regular classes who were from the local neighborhoods around the school were almost exclusively African-American. And these were very poor rough neighborhoods. Riding the bus through them we would frequently see drug deals taking place and the boys on the bus (Jr. High remember) would toss nickels to the prostitutes on the streets. It goes without saying there there was a lot of tension between the local students and the academy students. Teachers did their best to ignore it and never got involved in inter-racial fights – they valued their job too much. The principal was an African-American woman who also ran a night-club. Two of her husbands had mysteriously died from poisoning. She spoke every morning on the intercom about what a nice happy family we all were, but that did nothing to relieve the racial tension. We students thought she was a joke.

That tension came to a head for me in 8th grade. That year a local African-American girl named Kiva started attending the school. We never had classes together (I was in the academy, she wasn’t) but we passed each other in the hall. One day she noticed I was missing my left arm (it was harder to notice then because I wore a cosmetic prosthesis). She freaked out and started screaming. From that point on she would start screaming “it’s the one armed girl” every time she saw me and run away from me. It was Jr. High, so that was embarrassing, but then it got worse. She got over her fear of my arm and started harassing me. She would follow me around calling me names, throw my books down the stairs, and rip my folders and homework. She would open the courtyard doors during lunch and let her gang member friends in to harass and throw things at me. Teachers would witness this, but like I said, they would not get involved in inter-racial issues.

One day I was about to walk up the stairs and she came up behind me and told me she commanded me to walk up the stairs. I told her I didn’t want to and started walking away. She then told me that even though I was white and thought I was better than her because she was black, I really wasn’t because I was missing my arm. She was better than a handicapped person and so could tell me what to do. She then tried to make me give her my watch, and I said, “leave me alone bitch” and walked away.

Things came to a head one day when (in front of two watching teachers) she stabbed me with her pen and it drew blood. I had to tell my parents then. They were of course livid and called the school to complain. So both Kiva and I were sent to the principal to talk. I told her all that Kiva had done to me and then she asked Kiva why she did it. Kiva said because I called her a bitch. And so I got in trouble for using a curse word and not trying to be part of the big happy family. Kiva was asked to be nicer to me.

I had a hard time learning to deal with that sort of racial tension. I had friends from various racial backgrounds, but I didn’t know how to cope with being hated for being white, educated, relatively wealthy, and handicapped. I think it opened my eyes to a lot of the underlying issues behind racism and the systemic nature of the problem. But that didn’t mean I did anything to help heal racial relations. I left that school for the highly educated IB Academy high school, I went to a nearly all-white college, and now live in a homogeneously white Midwestern town. And I have conversations with friends about racism, but instead of learning from my Jr. High experience on how to tear down the walls that divide I’ve apparently only managed to build thicker walls. And I don’t know how to change that.

Read more