I am me! Since before I was born until today and forever into the future I will always be me.
To the best of my knowledge, my birth was typical, my childhood unremarkable, my teenage years uneventful and my days as an adult predictable. If my life seemed to be on a predestined path, that path was smooth, unchanging and easy to travel. A move to Yellowknife in the mid-‘90’s in search of adventure didn’t really change how things were passing by. Life was good, and I was happy. But life has a habit of changing without any warning and my easy life was abruptly nudged onto a new path during an anxiously awaited medical appointment. On a sunny August afternoon, in a doctor’s office in Edmonton, I heard the words primary, progressive multiple sclerosis (MS) applied to me for the very first time. As I listened to the doctor, my mind heard that a wheelchair would be in my future, but my heart understood that I would forever be different — that I would be labelled as disabled.
Why is my disability more important than I am?
MS is not a deadly disease, but although one is actively being researched, currently there is no known cure. Within two years of the doctor’s prognosis its inevitable progression robbed me of my ability to walk and my independence. As foretold, a wheelchair became my constant companion. Where once I had been identified as an old man with a beard, I was now an old man with a beard in a wheelchair. I was still me but I had changed. Would the label I now wore, and the wheelchair I now rode, also change how other people saw me?
When I took that first ‘roll’ in my wheelchair down the squeaky-clean corridors of the occupational therapy rooms at Stanton Hospital, I joined a community of people in Yellowknife who are outside of what is thought of as mainstream society. As a newbie to the community, I was quickly taken aback by the widespread use of the term disabled person, and by handicapped parking signs . I might be wrong, but a grade seven grammar lesson taught me that when an adjective precedes a noun, the adjective has prominence. When a noun precedes an adjective, the noun has prominence. Why, I wondered, were the disabilities of the people of this community more important than the people, the individuals?
Who do you think of when the term ‘disabled’ is mentioned? Do you think of the accident victim lying in bed, unable to care for themself? Do you think of the older person slowly shuffling down the mall, lonely and disoriented? Or do you think of the young athlete straining toward the finish line in an Olympic event?
Just as there are many different people who have disabilities, there are many forms of disability. The important thing to remember is that each person who is living with a disability is an individual and that individual has a disability. Just because they cannot do everything that most other people can do doesn’t make them ‘disabled’. In fact they are sometimes more ‘abled’ than many others in society.
British mathematician Stephen W. Hawking, author of A Brief History of Time, lives with ALS, a disease which has robbed him of the ability to walk and to talk. This pre-eminent scientist is a person with a disability. Given his accomplishments, is it right to call him ‘disabled’? Canadian Rick Hansen is paralysed from the waist down as a result of a motor vehicle accident. Throughout the world he is known as the ‘Man in Motion’ for his epic two-year circumnavigation of the globe in a wheelchair. Is he disabled or is he a person with a disability?
I have lived in Yellowknife for 22 years. For 16 of those years, I have required the use of a wheelchair for mobility. Where once I was invisible as just one among tens of thousands, now, in my wheelchair, I stand out as one among tens. I am different in a society that does not deal well with differentness. As I roll about town, reaction to my passing varies from innocent amazement by the young to nonchalant indifference by teens to cautious consideration by adults. My difference, my disability, affects my daily life. It means that I need assistance to get dressed and to have a shower.
But I am stubborn. As much as I am able, I do things on my own. When something is difficult or impossible to do myself, I appreciate offers of assistance. In some ways though I am no different from my ‘able bodied’ friends. I have a full-time job in the design-construction industry. From my wheelchair I administer construction projects throughout Yellowknife and the Northwest Territories. Like them, I pay my share of taxes. Am I disabled? Or am I a person with a disability?
When I was a child we would recite the following little ditty when other children were being mean:
Sticks and stones may break my bones
But words can never hurt me.
The truth is that words can and do hurt. A smiling face can hide a crying heart or a broken spirit. Like a poison-tipped barb, an inappropriate comment can gradually work itself deep into the psyche of the unfortunate victim, silently and maliciously killing hopes, dreams and desires.
Many people identify me as a disabled person. Why am I firstly considered as disabled? Why is my disability more important than I am? Why is my contribution to society of less value than that of my ‘able-bodied’ friends? I think of myself as a person with a disability. Like many other people, I do the best I can at what I can and I am tired of being labelled as disabled. When I achieve a success why is my disability a focus of the story of my achievement? I think that the time has come to change society’s concept of me from being a disabled person to being a person with a disability.
In 1595 when William Shakespeare coined the phrase “a rose by any other name is still a rose” he was only partially right. What we name something does not change what that something is, but it goes a long way toward the perception of what that something is. If I am seen first as a disabled person, I am seen as less than my able-bodied neighbour. The disability colours and defines me. If I am seen as a person who happens to have a disability then I am no different from any other person who also is different — a person who is tall, a person who is short, a person who is afraid of heights, or a person who is a workaholic. I become me. I become a person of worth.
Yellowknife is not a wheelchair-friendly city — its climate and geography wreak havoc with attempts to make it fully accessible. The cold, the darkness, the snow and the rocks are formidable obstacles. Too many doors remain unopenable. Too many social programs remain too exclusive to qualify for. In the global picture, Yellowknife is rather small and insignificant. What if we were to change that? What if we were to become leaders in making our community accessible and inclusive to everyone? The power of positive thinking could change our world. Let’s drop the term ‘handicapped.’ Let’s drop the term ‘disabled person.’ When we stop thinking about what cannot be done and focus on what can be done we give everyone the opportunity to live to their individual potential. Whatever I do, wherever I go, I AM ME.