Hydrocephalus Canada

I am me, but also you

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By Hunímano Coelho

I rarely think about my spina bifida anymore.

I was born in Angola, Africa in 1981, to very young parents who were barely prepared to have their first baby. I was born at home premature by a month. Once at the hospital I was diagnosed with Spina Bifida and with congenital bilateral hip dysplasia (I also have severe scoliosis). I had my first surgery when I was a day old. After that I had surgery on both my feet and an unsuccessful attempt to have my hips fused. By the time I was eight years old my lower body was filled with the scars of surgery.

Growing up with a disability in a country where there was barely any system or infrastructure to help people with disabilities was, and still is, very challenging. There are very few options available to us even on the small basics like healthcare, education, employment, etc. However, rather than allowing me to fall through the cracks of our society, my parents took to task and ensured that I would not only survive but that I would also excel in life. Along with my healthcare, my education was top priority on their list.

To my father it did not matter that the schools I attended as a child had stairs and that I was on crutches. It did not matter that washrooms were not accessible and I had to go on schedule or face wetting myself. He had to be the tough one to make sure I learned my lessons and didn’t become dependant on anyone. Throughout my childhood my parents instilled a very simple message to me: There is no sitting on the sidelines because of my disability, no giving up, and I must always try and do my best, just like everyone else, and when I can do better than everyone else. Not because I had to but because I could. Our society was not setup for people with disabilities in mind. That leaves you no option but to do like everyone else. You adapt to what works, push as much as you can, and life goes on.

I did not get a chance to participate n physical education at school. My father taught me how to swim when I was about six, and since then I have enjoyed swimming in the beautiful south Atlantic with my friends and family. And while most people my age were out and about having fun I delved deeply into an array of books. Jules Verne, Ernest Hemingway, Mark Twain, tons of encyclopaedias, to name a few. Thanks to all the spaghetti westerns I grew up watching I decided to learn English. One of my aunts had course on LP and quite a few books on the matter. So I learned English. I was semi-fluent by the time I was ten, fully fluent by 14 and by 16 also spoke Spanish and French, and of course Portuguese is my first language. I have travelled to Europe, many times, been to Brazil and Cuba, but had never come to North America. When I completed my HS in Angola, I knew that my options in the country were limited. Despite my skills and abilities the reality of society’s stigmas was too obvious to ignore. So I decided to migrate and take on the challenge somewhere I would have more parity with society at large. It wasn’t the venturing part that was difficult for my parents but the going alone into a completely different country so far away from them. But they knew I had the drive in me, not to mention all the amazing lessons I learned from them.

I migrated to Canada when I was 18-years-old without fully understanding how much it would change my life. Having arrived without knowing anyone I lived in a youth shelter for year. Within six months of my arrival I took my first job as a telemarketer. It was quite the experience. The day I received my first paycheque was one of the most memorable ones from my early days here. I also had to go back to high school to meet the Canadian equivalence. And for the first time in my life I started meeting people on the street who kept on telling me how inspired they were to see me going to school and holding a job. I never quite understood that because to me I was just doing what everyone else was doing, trying to live life and make ends meet.

A few years after being here I established contact with SB&H. For the first time in my life I obtained so much information about my disability that I was almost overwhelmed. However, I never fully took advantage of their resources and did not pursue on the subject any further. I was always too focused on the matters at hand. I moved from the shelter and between social assistance and part-time work and full-time school I graduated from high school. I took a legal assistance course through correspondence and decided to look for work in the field.

It was only after completing high school and trying to find full-time employment that I was able to fully understand the level of discrimination and difficulty that people with disabilities face when it comes to finding employment. Up to that point I had taken part-time jobs primarily in telemarketing or data entry. Those are relatively easy to enter. It was meeting interviewer after interviewer and seeing the same look in their faces, the look of shock and surprise, the feeling of pity in the air. It was a difficult period for me, having to accept that despite all my skills and willingness to learn and adapt that people would still look first and foremost at my disability rather than what I had to offer. But I persisted. I was able to get a temporary legal assistant position for a small immigration firm in midtown Toronto. And by 2005, I was able to secure employment with Michael Korman who, coincidentally, helped me with my immigration matters. In him I found an employer that not once brought my disability as an issue and treated me like everyone else. He soon became my mentor and a good friend.

Once I started working full-time and was able to become completely self-sufficient I took on other challenges. I learned to drive and bought a car. Also I was now able to fully enjoy things that I had wanted to do for years. Went sky diving, did road trips. I started doing indoor rock climbing, sailing, skiing, and scuba diving. I became more engaged in the community at large volunteering my time and experiences with various organizations. As I continue to grow as an individual, I look forward to further challenges in my career and in life. I decided to go back to school. I am now completing my first year, double major in Political Economy and Psychology, at Athabasca University.

My upbringing makes me think of my disability differently than what I have grown accustomed to hearing from people here in Canada. It is part of who I am, and that I cannot change, and don’t want to change. To quote my parents, “always try and do your best, just like everyone else, and when you can do better than everyone else.”