Being “Fixed” vs. Being Self Aware And Listened To

This is a touchy subject, on many levels, especially when it comes to Arthrogryposis and people NOT living with it. This is a very important article for Doctors, Parents and anyone who deals with anyone else with Arthrogryposis and thinks they need to be “fixed” based simply off of how they might do things, or even worse off, how they ‘look’.

As I  wrote in a previous article, what everyone needs to understand is that those of us with muscle control have learned how to do things our own way. Which to everyday people that may seem odd, strange or as if we need help all the time. Well, here’s a some insight, from my perspective, if I need help I will ask. I first will try every technique I can do do something, like tying my shoes, taking off a shirt, etc. before asking for help because I know damn well I can do anything I put my mind to.

I had an issue once, when I was in my upper teens, I was learning how to clip my toe nails. As anyone knows, when you first learn to do this and clip them too short, or slightly off, they bleed, A LOT. Well I did that to my one toe, which happened to go under my big toe and the doctor at the time saw this. The shit literally hit the fan with them all, they were convinced my toe was always like that and went on this rant about how I needed to “fix” it with a surgery. Regardless of me explaining that I just clipped my toe nail wrong, that it will heal and it is never like that. Even at 17/18 yrs old I was ignored, apparently I didn’t know shit about my own body, so we went through with it.

I had the surgery, scheduled the appointment to have the pin removed from my toe after it was in there for 7 weeks. They wanted me to wait and see the doctor at the time again to go over it but at that point I had made up my mind as was finished with ALL of it. Because they had proven beyond a doubt that the direction they were going in was WRONG, “fixing” things that were not broken because they wanted to try a surgery to fix a toe, that went under my big toe, to see if it worked, was WRONG. Or even worse yet to treat someone, a human being, like they are not aware of their own bodies is WRONG. My toe, by the way, is worse then it was, still under my big toe and now the nail is all sorts of jacked up and is now really tricky to cut.

So I can not stress enough to Doctors and Parents out their dealing with kids with Arthrogryposis, that they need to clearly evaluate their situation and if that person is coherent enough and is aware of their situation, then they NEED to listen to them. If they are saying they do not want to be “fixed” then listen to them. If they are explaining any situation, about what ever it may be, that they are being told that part of their bodies need to be “fixed” and do not feel the same way, then LISTEN. Unless the Doctors are suggesting a procedure that will benefit them down the road, and not cosmetically, but actually help them remain a contributing person in society then, by all means pursue that. But this need/desire for Doctors/Parents/Society to “fix” a persons body, because it doesn’t ‘look’ like everyone elses, is wrong to do to people who live with it that way and don’t feel like it’s wrong.

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