When I told my mother that I was writing for BLOOM, she said it was ironic given her memory that we were kicked out of Bloorview rehab after my rhizotomy surgery in 1994 for being “difficult.” I was a strong-willed child and she was opinionated and independent. But she was also quick to remind me that those so-called difficulties led to immediate and visible improvements after she made suggestions during a parent support group while we were there. “It was confusing and disorienting being in a new place,” she told me. “Some parents didn’t speak English. I figured that if I struggled then they must have even worse.” So those who appreciate being greeted by a smiling staff member to explain the ins and outs as they enter rehab at Holland Bloorview with their child have Susan Geboers, and other parents, no doubt, to thank.
My mother was the one who taught me I could do, maybe not everything (because no one can go everything), but a lot that others could. I don’t remember there ever being a question of whether or not I would go to college or university—in fact, I graduated from Durham College in 2011 and will graduate from Ryerson University on June 8—live away from home or have a career, date and one day get married. It was just assumed. I only recently learned that my parents were quietly worried this entire time, as pointed out by my father’s psychic (because my parents believe in that kind of thing). But I’ve been assured that it’s normal for parents to worry about their children’s future, regardless of their physical or mental ability.
I was born on January 23, 1990. Nine weeks early, I was about one pound and small enough to fit in the palm of my 19-year-old mother’s hand. It was two months and four more pounds before I was allowed to leave Sick Kids Hospital. Aside from my small size and wonky eyes, caused by an over exposure to oxygen at birth, I seemed like any other baby. It wasn’t until I was meant to start rolling over and sitting up on my own that my mom began to realize that I wasn’t reaching the normal development milestones. After multiple doctors and tests, at two years old I was diagnosed with cerebral palsy spastic diplegia. My mom says that when the doctor called to give her the news, she was so relieved just to have an answer that she said “Okay, thank you,” then hung up. It wasn’t until she began to think about it a few minutes later that she realized she had no idea what cerebral palsy was. So she called the doctor back. Unsure of what exactly my future would hold and not wanting to give my mother false hope, the doctor told her I would likely never walk. This is where, I believe, the problem begins.
In the 23 years since that cryptic prognosis, I’ve not only learned to walk but also relearned to walk after my rhizotomy and again after my leg surgery in 1999 (although my boyfriend’s mother doesn’t consider walking with canes to be walking). It took a lot of hard work by both my mother and I, but I seemed to have fared a lot better in life than the doctors predicted. I don’t blame them, as there are many forms of cerebral palsy and even the same form can differ further from person to person. For example, while my best friend, Hanako, and I both have spastic diplegia, she can walk on her own but I need at least one cane.
It hasn’t always been an easy life, full of the ups and downs of growing up. I’ve struggled with depression and trying to find my place in a world that I often feel I don’t quite fit into. I’ve felt like I’m stuck between the able and disabled worlds with a foot in each—too disabled to go unnoticed but not disabled enough to entirely relate to the disabled community. But despite all of this I’ve always considered my life to be quite unquestionably normal. This is why I find it odd, and a bit sad, when I meet people who are surprised to learn that I live away from home with a roommate, study journalism, spent a semester studying and traveling in New Zealand (during which I went skydiving and bungy jumping), love going to concerts and, not only have a boyfriend, but a boyfriend who is not disabled. This last point is particularly interesting given that I’ve never given much thought to dating someone with a disability. Not because I am a “disabled hater,” as Mom jokingly accuses me, but because most of the guys I come across in daily life are able-bodied. Once people move past their surprise, they often tell me what a great inspiration I am for being so accomplished. But while it is sometimes nice to hear I’m doing well, I hate the implied assumption that people with disabilities don’t do these things and that I am therefore special.
I recently saw a TedTalk by Tamara Taggart, whose son, Becket, has Down syndrome. She speaks about how the doctor apologized and consoled her when giving the news of her son’s condition, just five days after his birth. Tamara said that set the tone for all of the negative conversations with doctors thereafter about all of the things Becket would never do, such as walk, talk, go to school or fit in with his peers (to which the doctor actually said “yes, that is a legitimate fear, as people with Downs are often lonely.”) But she also speaks about another conversation she had with a very hopeful and empathetic oncologist a few years later when she was diagnosed with cancer. This doctor focused on all the positives and told her about how this experience would change her for the better. Tamara wishes that when telling her about Becket’s Down syndrome, the first doctor had offered the same hope and told her about how wonderful her little boy would grow up to be. Parents generally hear first about their child’s disability from a doctor. That’s why doctors should be more mindful of the negativity and stereotypes they are fostering.
It reminded me of how some friends of mine reacted when they were told their son had cerebral palsy—already worrying about how he would never have a job or get married. Don’t get me wrong, I understand fear of the unknown and mourning for the perfect life and child parents thought they would have. But age two is far too young to predict or write-off a child’s future. Having cerebral palsy doesn’t have to mean that the life a parent envisions for their child is impossible—it may just be accomplished in a slightly different way, or better than they could have ever imagined. Maybe he won’t play soccer, but maybe he will play sledge hockey, become a writer or go into the arts or sciences. Finding work is challenging to say the least but a good education, patience and connections are helpful—that’s how I came to be writing for BLOOM. Dating is not always easy (not that it is for anyone). My boyfriend’s parents are old-school European immigrants who dislike me simply because I have a disability. While that is a whole other story, what is important is that this is an extreme case that does not, and will not, happen to everyone.
Being aware of the science of your child’s condition and doing what needs to be done in order to improve their quality of life is important. But it’s also important to help them feel comfortable with themselves and their disability by calling attention to their positive qualities and potential to live a happy, productive and, possibly, somewhat ordinary life.
Originally published by BLOOM on April 2, 2015.