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Friday, August 5, 2016

Don't Box Me In: Breaking Out of the Disablity Mold

Having a disability offers an interesting perspective of the world. It seems that everyone has a preconceived idea of who you are and what you are about. It can become disheartening and frustrating when you come up against these imposed expectations. People, in general, are not happy to have their pre-conceived ideas challenged. They push back, trying to force who you are and what you are capable of into a box titled everything from "Disabled" to "Un-able".

The belief of "Unable" is a common one. Many people focus on what was lost, what we don't have, what we are perceived to be lacking. The idea that all persons with disability are somehow unable or incapable is just wrong. Many of those who fall into the disability category offer many more abilities. Those abilities can be stronger and function at a different level even than fully well persons.

One example of this is my own hearing loss. After extensive and exhaustive study it has been determined that my hearing will not be able to come back. I am fully deaf on one side. Any one who has been following my writing can tell you that I suffer from hearing so acute that I can experience physical pain in normal social settings. Pain because the volume and tones that I am able to detect are heard at a higher and more intense level than those with normal hearing.  In order to attend events such as watching a movie with my family I take along headphones to muffle the sound enough that I can tolerate sitting with them for the duration of the movie. Despite such precautions, I still hear the movie so acutely that it taps my energy and often leaves me fatigued for hours afterward.

Another example from current media is the idea of Dare Devil. His loss of sight led to an uncanny awareness of everything that he could hear, see, and even touch. This is not to say that all persons with disabilities have overly developed senses in other areas, but each of us has adaptations in other areas where our mind and body have come together to allow us a higher level of living. Higher than if we just wallowed and sank into our disability.

People are comfortable with the predictable. Challenging our own perceptions and paradigms is hard enough, then we venture into the world. Taking our internal fight into society engenders a fight of another kind, the fight to be seen. It is talked about in the disability community the idea of invisibility. We are looked past in the grocery store, eyes skim over us, pretending we are not seen or that the "shame" of our disability is not noticed.

Children are rushed away, not able or encouraged to ask questions and find understanding. Many of us are prepared for and love questions, when we can take the unknown out of the equation, we are seen. Children are incredibly honest, they will call it like it is. This is utterly refreshing. The open and nonjudgmental queries of a child trying to understand why someone looks or sounds different opens the rest of us up to really see one another. I am no longer invisible.

How do I think other people should treat disability? Disability is simply a part of life that we work around or through. It is a corner of who I am, but it is not everything I am. Like having brown hair, it is a physical descriptor, not my identity.

I am not ashamed to use a cane or have trouble hearing on one side. I am not ashamed to stutter, have trouble forming words, or misuse words. I know who I am and where I come from. Those who look past, who don't see, who use the excuse of "I didn't want to offend", they should be ashamed. It is when we stop seeing one another and really listening that problems fester and worsen.

If you really want to look past the label, if you really want to avoid offense, then see me as a person. Don't pretend that I am not there or that I don't exist. Ask me questions out of concern and a desire to understand and then move on. Ask me about the rest of my full life. Ask me about my kids, my dog, my husband. Talk to me about stars and small towns. I can talk about spirituality for hours. I love to go hiking. I paint, I draw. I am not my disability. It is a reality of my life, but it is only one part of my life.

The lessons I have learned through this journey continue to amaze me. I can teach you about having and creating a full life outside of your challenges. I can teach you that bad days don't last, that life is beautiful and worth living. I can teach you about losing everything you thought you were only to discover who you really are.

What I can offer is valid and needed, so I will continue to share and write. I will keep standing up and demanding not to be boxed in by the expectations and preconceptions of others. I will keep demanding to be seen, to shake up the ideas of what you think you know until each of us is seen for who we are, instead of the idea that is most comfortable for someone else. I will keep speaking until those who are considered "Disabled" are no longer seen as unable but valued as members of the same society who can offer valuable and necessary perspective and insight. Let us out of the box, we don't belong here.

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