“Made you look”! That was the game I played with myself in my early teens when I first become disabled. You see, I was quite sensitive to the stares of others. Sure I knew the reason, I was different and we humans have a hard time accepting anything in our environment that is different…especially in the human form.
So, my way of dealing with the pain was to pretend I was being gawked at for reasons of envy. The game was called, “Made you Look” and when I would feel that uneasy stare, I’d say to myself, “Oh no, you discovered me! Yes, I’m Madonna (the sexy goddess of rock… at that time), incognito!” Or, if the stare was quick, followed by eyes searching for anything but eye contact, I’d say to myself, “ah, the great hair style I’m sporting that you always wanted, but will never have… eat it up!”
The humour of this game got me through adolescence, but looking back, “the look” was really a sad indication that the other person could not see me as ‘just another human being’. They see the physical manifestation of the disability, forgetting, or ignoring the fact that at the core we are all human beings and whether a physical disability, or an ‘ugly Santa sweater’ sets one apart, this difference is merely one of a myriad aspects that makes every person unique.
In my profession as a pediatric occupational therapist, I work with children from birth to age 5. I feel so privileged to work with these little people, because time and again I witness them struggling with new concepts and activities, trying and failing and trying again! Their world is fresh and exciting and when something new, something different, comes to their attention, their instinct isn’t to shun or shy away. They often say with a concerned tone, “What happen to you?” I always give a quick explanation as to why I am an amputee and why I walk on SideStix (and if the age is appropriate, I use the opportunity to caution them to be really careful on their bicycles!) These wee ones then go on their merry way, often hopping, to try out the ‘one legged life-style’. Exhausted by hopping, they soon come back to me and say, “I’m lucky to have two legs!”
Young kids who haven’t yet been indoctrinated in the ‘social mores’ of reacting to dis-ability are open to differences in others, especially if the reasons for the difference make sense to them. They are full of curiosity and ask the 101 questions to understand the world around them. I’m always refreshed that they see me first and then my disability. I am glad I can instill an appreciation of their “able-bodiedness” when they discover it is harder to go through life with a mobility challenge…or any challenge for that matter.
Adolescents and adults are perhaps not as open to accepting differences as the little people I work with on a daily basis and I’ve always wondered how to educate adults, both young and old, to see me first and look past my disability.
The thing is, disability can happen to anyone and most of us are just an accident or devastating diagnosis away from not being abled bodied. Changing the way you “look” at an individual with disability essentially starts by understanding and embracing your own vulnerabilities and acknowledging “this could happen to me”.
Once you empathize and place yourself as the ‘first person in their story’ you are able to feel and observe more keenly what the person is capable of and what they may need in terms of help, if any. This observation of the ‘whole person’ will give a much better understanding of their strengths and capabilities and will help to bring down that inner fear of, “oh no, that person is disabled, I don’t know how to react… so I’ll just avoid them instead.”
An actor from the television show “Breaking Bad”, RJ Mitte, talks about his role as Walt Jr. and changing the ‘look’ on disability by having the opportunity of allowing his viewers to join him and the White family in this gripping crime drama.
“It was able to educate [people] in the way of looking past the physical and seeing someone for who they are,” he says. “When you first watch Breaking Bad, you see Walt Junior, and you see the crutches… but after you’ve watched the show for a while, the crutches start to fade away. You no longer see a disabled kid, you see a kid who’s just trying to grow and learn.”
Mitte refers to his cerebral palsy not as a disability but as a physical attribute. “It’s a small but powerful shift in language and view, that cuts to the heart of the issue — cerebral palsy is a physical attribute in the same way as having brown hair”.
Bruce Kramer who wrote extensively on living and dying with ALS, said in his interview on the ‘On Being’ podcast, entitled “Forgiving the Body”:
“We see the guy on crutches, on a cane, the woman in a wheelchair. But ‘The Look’ goes right through them. We are afraid to acknowledge their disabled regalia, how they struggle, walk without balance, or don’t have a free hand when one is needed. In my old normal, I gave ‘The Look’ as often as I didn’t, secure and confident in my able-bodiedness. I’d look right through disability, and I wouldn’t have to face its possibility in the person that I’d looked through.” ‘The Look’ was looking through them, looking around them. But not actually looking at them.”
As I have aged, I still notice the stares, but only once in a while if they’re extreme and emotionally cutting. I’ve learned to be comfortable with who I am and tune-out what’s not important in helping me grow and be stronger.
I do hope someday, the individuals who now ‘look past me or stare in horror’ will eventually begin to embrace their vulnerabilities and mine; see me first, without fear and then my disability. They will be able understand that a challenge can be an opportunity to become stronger and more of who you are within, regardless of age or physical ability. They will see my disability is the root of my strength. Now that’s a great reason to ‘Make you Look’!