No one chooses to have a legitimate disability. No one. Are their people who will feign a disability for money or attention? Yes. The difference between the two is obvious and they are not comparable or synonymous.
Having a disability goes much deeper than the simple fact that there are just certain things that a disability changes about a person's abilities to live normally in the world as it is. It is pervasive on an emotional level.
There is not a part of life that it doesn't somehow reach it's fingers into. That's just the way it is. We have to learn to cope, adapt, make decisions based on what our disability allows.
Something that is ultimately frustrating and very common in the life of a person with a disability, is exclusion. Whether it is done intentionally or unintentionally. It hurts. Every time, it hurts. Not only is it a very lonely feeling, we wrestle with the reality that it is unfair to expect those in our lives to also give up things simply because we can't do them. We feel like a burden, a kill joy, and a pariah. So we stay silent, for the most part, about how we feel emotionally when we are excluded. This is not to be a martyr.. it is default behavior. It is a coping skill we use in order to take the burden off of others.
But, it is a lonely place to be. No matter how many times it happens, no matter the duration of the exclusion...it hurts every time. There is just no two ways about it. Normal social emotions lend us to wanting to be involved and part of our crowd. It's a natural feeling. We have to shove that feeling down, a lot.
Going one step further... it is frustrating when those in our lives suggest alternative ways for us to still do an activity that we know is something we can't manage. It is common for someone with a disability to get loads of suggestions about things we should try to be more normal. This type of behavior is a slap in the face. It suggests that we haven't tried to think of every single possibility there is in order to be involved, to take that emotional burden off of those we love and ourselves, to be NORMAL.
I have a disease called Reflexive Sympathetic Dystrophy. I do not say this for attention. For the love of God, that's the last thing I want. I say this to let you know, I am not speaking from a place of inexperience. This is my life. This is also my burden to carry, along with anyone else who has a disability.
I used to be an avid hiker, camper, outdoors lover. This disease has limited my ability to do those things to a degree that was extremely depressing at times. I still struggle with the loss of activities that I loved.
The list of things I can still do, far outweigh the list of things I can't. I am thankful for that.
But I feel compelled to talk about this. Not for my own sake, but for the awareness this brings in general.
I am not asking you to change your behavior for me or anyone else. I am asking you to simply consider the other side of the coin when interacting with a disabled person. Think about exclusion. Think about what it would be like to have your abilities taken from you. Think about the sheer amount of letting go and giving up a person has to do because their disability dictates that. Trust a person when they say, "I'm sorry, but I'm not able to do that." Do not question them, give suggestions, make them feel like they don't know what is best for themselves. Chances are, they've wrestled with every feeling to get to the point of accepting the "I can'ts."
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