Handy Guide to Amputees: Origins

*Warning: Contains an Amputee’s cursing thoughts*

Everything I write is based on my own experience. I cannot and do not want to talk for people with disabilities in general. Same applies to other amputees I cannot and do not want to talk for other amputees. This is just my personal account.

I’ve been meaning to write the following lines for a while now, trying to write about a few things concerning my disability. There are many stereotypes and misconceptions about disabilities out there that can be summarized into three categories: 1. Able-bodied people are unaware that certain facts are not true. 2. Able-bodied people are too insecure to talk to disabled people about disability whether they are aware off false misconceptions or not. 3. Able-bodied people don’t give a fuck about the reality of living with a disability or chronic illness. Throughout my life, I’ve met people of all three categories which made me realize that most able-bodied really have no clues about the most basic aspects concerning my disability. I don’t think I’ll be able to address everything in one post, so be prepared for more ramblings.

For those that are new on this blog, I’m a twenty eight year old congenital amputee. I was born without a right hand as you can see in the post “Lend Me a Hand?”. Which brings me to the first misconceptions: Not all congenital disabilities are caused by a genetic disorder. I’m also not a victim of Chernobyl even though I was, indeed, born in the Soviet Union. In order to understand why Chernobyl was not the cause for my disability you have to know that I was born thousands of kilometres away from the Ukraine (where Chernobyl is situated in case your geography is a little bit rusty) in Uzbekistan, so neither of my parents was even close to the affected area. Also, due to the wind directions at that time, radioactive material was swept away to Western Europe and not Central Asia. All this might be obvious to many, but I’ve been asked too often whether Chernobyl was the cause due to my birth year and birth place that I needed to clarify a few things straight away. Moving on to genetic causes, there are many disorders and mutations that might cause a deformed limb, but not everyone born with a deformed limb can blame genetics. In my case it is easier to say what was NOT the cause than to figure out for certain what was. It is impossible to say for certain because the tiny central Asian hospital I was born in had no ultrasound scanner. One very likely scenario is believed to be the cause my disability. At an early stage of the development of the limbs, either the umbilical cord or fibrous string-like amniotic bands (more about this so called Amniotic Band Syndrome over here), got itself entangled around my arm causing a prohibited development.

Why I’m telling you this? When people see me they instantly assume that I had an accident and that either the hypothetical accident or my current disability must cause pain. My right arm is not causing pain. Not everyone with a visible disability is suffering from pain and not every seemingly able-bodied person (not all disabilities are visible) is pain free. So please, don’t go on talking about whether I’m in pain or not after I’ve explained you why I’m one-handed. Less than two months ago, I’ve talked to a guy that couldn’t stop talking about how painful it might be to lose a limb while telling me (in horror) about one of his friends who once lost a finger. This, by the way, happens all too often. People see me (an amputee), hear about why I’m the way I am, yet proceed to tell me about random acquaintances that lost a limb in a tragic and painful way. Yes I’m an amputee, but I have no clue what a traumatic experience it must be to lose a limb and trying to adjust to that new life. The trauma of losing a limb is as foreign to me as it is for able-bodied people. To me, being one-handed is a natural state of being. To me, possessing two legs, two feet, two arms, and one hand is as natural as it is for many others to possess two hands. So don’t you fucking assume I know what your friend/acquaintance must’ve gone through. Also don’t keep asking , repeatedly,  whether I really, reeeeally don’t feel pain in my arm-stump.

Also, why the fuck do you want to touch my arm-stump? It is made up out of the same material as my left, healthy, arm. This, however, is an issue for another blog entry.


6 thoughts on “Handy Guide to Amputees: Origins

  1. Well said! I’m partially handicapped, too, due to an accident when I was younger, but it’s not as visible so I rarely get comments like the ones you mention. But when I do explain what happened, the reactions are much the same as you describe. Some are insensitive, yes, but most are – I think – genuinely curious.

    I know I don’t have to tell you this, but you are a beautiful young woman with more drive than most people I know, and you’ll go far in life. Your smile alone could slay from 100 paces. Anyone who sees anything else but a strong, intelligent being when first looking upon you is blind.


  2. Hello there, one of my blog is a collaborative project on self portraits (including some written pieces):
    I wonder if you would give me your permission to share some of your self portraits there?
    I’d like to include this written piece with the photos included too.
    Credit given, a link back to your blog, and publicized on Google+
    What do you say?


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