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When My Son Told Me He Wouldn't Opt Out of Having His Disability

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Recently while watching my son play soccer (power wheelchair soccer, that is, as he has cerebral palsy and uses a wheelchair for mobility), I stepped outside of the gym for a moment to encounter a man who proceeded to comment on how sad he was. It took me a moment to realize the gentleman was referring to the fact that all these young people were using wheelchairs and how terribly sad their lives must be. So I took some time to talk to him about the fact that, actually, everyone out there was having quite a good time and I doubted they would want anyone feeling pity for them.

I’ve frequently pondered this idea — of pity for those with disabilities — especially after great sporting events such as the Olympic and Paralympic games, where we celebrate every individual’s accomplishments and unique abilities. Although our society has come a great distance in embracing ability instead of focusing on disability, many people still see individuals who require varying levels of support as somehow needing our sympathy. It’s interesting, though, that many people with challenges I’ve met actually wouldn’t want to change who they are and certainly would not want other people’s pity. Many were born this way and know no other life.

My son expressed this to me a couple years ago when we were discussing heaven and that, perhaps there, he wouldn’t have CP. He clearly exclaimed to me that he loved having CP and wouldn’t want to “not have it.” 

This struck me as interesting, and I felt this must be one of his unique quirks. However, during the 2010 Paralympics, when he had the opportunity to meet several members of Canada’s sledge hockey team, one of the players, who had been born with spina bifida, expressed that he would never want to be any different. He’s been afforded many opportunities in life; why would he want to change anything? 

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With this in mind, I further consider my role as a parent of a child with a disability. When my son was young, and even now, I would have given anything to have him be able to walk and be just like “every other kid.” Countless hours have been spent on therapy. My husband and I are rarely able to go out alone. Many, many dollars have been spent on home renovations, equipment, etc., and many battles have been fought to receive services. So, yes, it’s a lot of work,  and it’s not an easy road for parents to travel. However, if given the option, my son’s desire would not be to walk and be like everyone else.

The only time I can remember him being sad about his disability (apart from all the surgeries he’s had to endure) was when he was about 6 years old and was denied access to the skating rink because of his wheelchair. He felt this was unfair and was saddened that his friend got to go skating while he couldn’t even go on the ice. I, of course, responded with anger, but, in the long run, something good came out of it; the rink changed their policy, and no other individual who uses a wheelchair has been denied access since.

I also find it interesting that people with disabilities are often seen, somehow, as weaker members of society when, actually, many of them have been through far more than the average adult will ever have to experience. They’re strong and resilient. I recall my son’s amusement on grade nine immunization day and how many of his fellow students were terrified of the pain they’d endure (he described it as “freaking out”); to him, of course, a simple shot in the arm is less of a challenge than eating breakfast, so what’s all the fuss?

Really, what I’m trying to convey is, yes, it can be incredibly challenging having a child with a disability, and I often feel like my heart is being torn, but my son has taught me more than I could ever learn from a book. I have a far greater appreciation for the small things in life. I’ve often found strength that I otherwise would never had known was there. I believe my son is a wonderful gift from God, as is any other child. And my role as his mother? Well, I guess a big part of it is to help him reach his full potential — that may not include walking, but I know it will include being a valuable member of society, having fun, being happy and having the opportunity to experience the things he wants in life. I’m also so thankful every day that I do live in a society may still have a ways to go in terms of varying levels of acceptance but offers so many opportunities to celebrate every individual’s abilities.

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Originally published: March 29, 2015
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