Disability – My Experience
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.
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julieclawson(at)gmail(dot)com 
Julie,
That last sentence is kinda haunting… please don't say someone told you to have more faith or some asinine comment like that! Now I'm potentially dreading the next post…
When I was in college, there was a girl there who also had only one hand. Her story was much the same, she was simply born with only one hand, the other arm extending to just above the wrist, iirc. Eventually married a doctor but as far as I know still just has the one hand.
I have to say it took me several months to figure out the blog title… but I think one of "your" strangest posts was when you injured your hand and couldn't type so Mike posted a photo. I confess I found it more amusing than pitiful ;^) The fact is you might still type faster than some of us!
I have to tell you Julie…when we met at Convergence, all I could think of was that you could type way faster with one hand than I can with two. I was wowed.
So Brother Maynard: Yes, she does.
Thanks for the post. It is interesting how blogs allow such conversations to take place. And I would love to see the typing.
Thanks for sharing that Julie. I had seen you refer to yourself as disabled before but hadn't made the connection to the title of the blog.
Well, count me un-clued in, 'cause I hadn't figured out that you have only one hand! (Not that I've been reading your blog for yonks, anyway… but I do remember smiling when I first came across the title, as my brother has taught himself to clap with just one hand…
anyway… I can half guess what the mystifying reactions from within the church might be – but I'll stay tuned to see if my nudgings were right.
sunshiny greetings from the other side of the globe…
Well, as you well know I so totally forget about you only having one hand I make stupid blue tooth comments…..
Well, with the typing thing… I can only type fast with the help of spell check that catches all of my typos. I remember the long nights in early high school where I would be up nearly all night just trying to type an already written 3 page paper. I had to learn to type faster just for my own sanity.
Julie:
I was very interested to find this post here today for a couple of reasons:
1. I had *just* been wondering about the name of your blog and what it signified.
2. I have been contemplating when to "come out" on my blog about my own disability.
I do appreciate your sharing this post with us, and it is really very interesting, particularly the bit about the urban poor "taking pity" on you. I'm trying to figure that one out myself.
Thanks.
Julie, I'm going to use your post to talk with my 8 year old about people with differences. So far, though, the worse "mommy look" moment was when she was about 3 or 4 (of course) and said, "look at the lady with the pretty lipstick!" I turned to see, right in front of me, an elderly woman with bright orange lipstick that extended a least a quarter inch past her lips all the way around. I stuttered, felt faint, and did in fact rush off. I think that day I'd have done better with a question about a missing arm.
anyway- thanks for this post. I'm a little afraid to read what's coming about the church response, too.
Julie:
I got to thinking about the urban poor thing last night, and eventually came up with a plausable explaination.
For the urban poor, career opportunities are typically limited to manual labor, service industry stuff (i.e. working in a kitchen or restaurant), some type of health care (i.e. a nurses assistant, nursing home attendant) or working in a retail establishment. All of these jobs typically require the use of two hands, so the lack of a hand would be percieved as a very, very serious disability indeed. Since the urban poor are often marginalized from "polite society", it seems fair to assume that they wouldn't be able to conceive of the job opportunities available to someone with a college education (many of which do not absolutely require the use of two hands).
Just my .02, and probably worth every penny.
Cindy – I think it is really great for all parents to talk to their kids about the differences people have. Having a framework with which to make sense of things reduces the "weirdness" factor and the fear issues that kids often face when encountering disability.
Lainie – that's seems like a possible reason, it makes sense to me at least. and I look forward to hearing your story.
The whole piece was fascinating, but the last part absolutely amazed me. The right-handed or left handed thing. This is supposedly an intro into a conversation?
Oh well, it's just another of the thousands of things I've heard but do not understand.
I suspect the people asking "are you right- or left-handed?" question actually mean to ask: "Do you know, somehow, whether you would have been naturally left-handed if you'd happened to have a left hand?"
Wow, Julie.
I'm shocked at how incredibly similar our lives are. I've had all the same prosthetic devices that you had, yet I hated them all. I get the same question about my right hand/left hand preference. I get the same jokes (even though I'm quicker to the draw, and make up most of them myself in order to diminish awkwardness).
Kate re-vamped that hand preference question, and its still the dumbest question I've ever heard, especially if you know ANYTHING about the brain and how it works in relation to the body.
As far as hammering nails, and given that we have identical arm situations, here's my solution that works well without aid of a prosthetic: 1: hold the hammer between your stump and your body while using your able hand to hold the nail. 2: Use the mobile part of your stump (or your body, whatever feels more natural) to tap the nail in the wood and to start it. 3: Once the nail is started, it should be upright in the wood, and with practice, you should be able to use the hammer in your able hand to finish the job.
I hope that helps!
One thing that also might help you: I have videos on youtube of myself playing drums using a homemade prosthesis. I also have an instructional video on how to make and use a similar device, and I believe that this device has even more potential inside and outside of the musical realm in application. Leave it to your imagination to improve the design or apply it in a different realm!
Here are the videos:
Drumming: http://ca.youtube.com/watch?v=OJtnUdp0ArQ
Prosthetic:
http://ca.youtube.com/watch?v=zzUFGXlVOVU
I look forward to reading more of your blog on disability. Thanks for sharing!
Your fellow congenital amputee,
Jimmy
I was doing research on disability theology and found your blog! I hope you don't mind if I keep checking it out!
Hi I have a little boy that is also missing his left hand. And he is so cute I love him he surpise me ever day the thigs that he can do. And trust me he hates help he wants to do it all alone. Thank you
Hi!
I was born with only one arm, I'm missing my left arm. I never had issues working, but few months ago I started experience some pain. I'm doing PT but still not helping me. I use a software for typing but still have to use the computer. I feel ver depressed. I don't know what else to do. I'm not for sure I'm able to apply for SSDI. I have work non stop for the past 10 years. If any one have any ideas that might help.
Thanks,
Hi!
I was born with only one arm, I'm missing my left arm. I never had issues working, but few months ago I started experience some pain. I'm doing PT but still not helping me. I use a software for typing but still have to use the computer. I feel very depressed. I don't know what else to do. I'm not for sure if I'm able to apply for SSDI. I have work non stop for the past 10 years. If any one have any ideas that might help.
Thanks,
Hi Julie… thank you for sharing your story. I look forward to hearing the rest of it.
Like most others, I've always had problems knowing how to address disability– or at least at a first awkward meeting. Eg when I first meet someone who has a visible disability, my line of vision will unintentionally and unwittingly drift to the sign/site of disability, simply because that's what our brain registers as "new/unknown" and therefore catches the eye. From there once I realise I'm looking/staring it degenerates into a paroxysm of—> oh crap, how rude of me– I must be making them uncomfortable/feel objectified–> avert gaze—> realise they must notice that I'm looking away–> try to act as normally as possible and ignore the 'newness' of the situation–> wonder if I'm being too gratingly, self consciously "nice" or "casual" and wonder if the person might feel patronised.
Usually after the initial awkwardness for the first few minutes the situation is normalised and thereafter I don't notice the wheelchair etc. except when a situation arises where help with it etc might be needed, which would be no different from any other friend who doesn't happen to have a watch asking for the time… But basically the questions remain– how do you be helpful without patronizing? Not unnecessarily wrap your friend up in cotton wool but not be insensitive to their needs? That and the politics of disability and difference… for example… is one a person with dyslexia, or a dyslexic… when trying to just focus on your friend without placing too much undue emphasis on their condition, are you ignoring what is a very real part of their experience/identity? Or if you keep trying to see their experience in terms of their condition, are you reducing them to a simple category, when they are much more than that? It just feels… complex… or maybe I'm overthinking it too much… geez…
Umm, wow, geez, I *am* clueless… "I'm looking forward to hearing the rest of it…"– I didn't realise that this was written 2 years ago! Am just catching up with your other posts on disability. *blushes furiously*
Hi, Just wanted to let you know that I am delighted to know that your blog exist. I have a daughter who has a missing left hand. She is 4, and about to began pre-school. I want you to know that your stories are very touching. It has enabled me to know what she will probably face in this world as a individual with a visibal disability. I am in the process of establishing a non-profit organization for children like her, and yourself. It would be wonderful if you could be a volunteer guest writer once the it is up and going. Currently, we have a local organization, but we anticipate going national. Please keep the e-mail address, and check back with us. Your stories are moving, and they should be heard. God Bless.
Your post really hit home because im like you I was born the same way im missing my left hand. I ve experience everything you have and more and I do get the strange reaction but more of a shock that theres nothing I can't do. Because of that people barely notice at times unless I tell them. I do get the questions but more of what happened and how are you able to do this and that. People at times do try to pitty me but I dont let them I just say im just like you just a little more talented.lol! THANKS again for the post!!!!!
Hi Julie,
I have just come across your post, I am a womenswear design student at the London College of Fashion and I am currently doing a brief called Identity which encourages us to look and design for different people instead of your average size 8 6 foot model, and I wondered if i could ask you some questions as part of my research, please email me i would be love to hear from you and more about your experiences
Many thanks