I started to become aware of the existence of my disability through the stares and general lack of awareness of other people around the age of four. I did not feel different. I was just a girl who liked long dresses and the color blue. Other people were aware of my walking differences before I was.
People saw my metal walking braces and crutches as some kind of brand that made me different. I grew to hate the repetitious clicking sounds from the braces, metal that rubbed on metal every time I took a step.
I really loved long and flowing dresses. I loved to spin and twirl and watch the material of the dress cast around me. The dresses also hid the metal braces that I grew to hate. The devices that supported me to move became a brand that made me different.
People with disabilities are isolated in many contexts –from their peers and from their community due to a lack of awareness about disabilities, lack of access, and a number of other well-documented factors. I was speaking with a friend of mine who is a trained Certified Therapeutic Recreation Specialist. We talked about disability awareness.
Disability awareness is not about being an expert on diagnostic criteria for a particular disability. It is not about being politically correct or using the terms or descriptors of the moment to describe disabilities.
My friend raised the idea that people have not grasped the concept of people-first. In my case, I would rather be thought of as a writer or liking the color blue before being identified by disability criteria.
Somewhere in the process of sensitizing people, we have missed it. People with disabilities do have struggles. People with disabilities experience pain but that there is a difference between pain – the physical experience of pain and the mental experience of pain compared to pity.
People with disabilities do not want to be pitied.
Somewhere in the process of sensitizing people, we, (parents, teachers, health professionals, service providers, policymakers etc.) collectively have missed something.
There was a time growing up where I did not feel different, but grew to hate tools that help me navigate the world. When I was Senior in High school I wrote a poem about the experience of my disability – entitled
Black and Blue.
There is something mysterious and enigmatic about poetry. It is subjective and the reader is left to draw their own conclusions. I resurrected Black and Blue and it makes the same point as it did years before, but with more complexity-
Black and Blue
Cross legged in the dark
The grip is tight,
A lump rises staring at the missing eye.
Fingers dare not touch the stained flesh
Faces turn behind.
The air,
Clammy,
False from pretense
Turn around.
Ignore the corner,
The missing eye
The twisted leg,
Fingers dare not touch the same flesh.
Cross legged in the dark,
Surroundings are strange.
Tainted is the flesh,
Broken,
Black and blue
Reality is weak compared to illusion.
In the corner,
Staring out of the missing eye
Is there a void?
Black is black,
Look again.
Turn around.
Blue is blue.
The fingers are cold
The flesh is charred and broken
Cross legged,
Alone and weak
Faces turn behind.
Missing eye
Twisted leg
Fingers dare not touch the same flesh.
Disability awareness is about taking the time to see the writer, the athlete, and the person as a whole. Person-first means seeing the writer and the athlete before the disabling condition.
I would like to re-visit the girl who loved to twirl in the long skirts to say I see what you will become and it has nothing to do with the braces. Black and blue should be colors on fabric, not bruises left by ignorance.
This article were originally published in 2011 in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability (www.nchpad.org). NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).