I am in no way athletic and have little interest in sports. That said, I do like a thrill. I’ve always loved rollercoasters, and I jumped at the chance to skydive and bungee jump while travelling in New Zealand.
I learned to sail independently at Easter Seals Camp. It quickly became my favourite activity, and I’d be out on the water as often as possible while at camp each summer. I loved the freedom and the exhilarating feeling as the sails caught the wind and the boat gained speed––leaning to one side, almost tipping but never capsizing. Sailing is probably the closest I’ve come to participating in sports.
Fast-forward about 18 years. It’s October 2016, and I’m dreading the coming winter. I hate winter. The cold makes my muscles stiff and sore. The snow and ice make it challenging, and sometimes dangerous, to walk around with my canes; but even more challenging to get around in my wheelchair. So, not wanting to spend yet another winter pissed off and isolated, I joined the Adult Disabled Downhill Ski Club (ADDS) at Mansfield Ski Resort, through CADS Ontario. I thought it might improve my relationship with snow.
It turns out weaving down a hill in a sit-ski feels similar to catching the wind in a sailboat and is just as thrilling. I enjoy skiing much more than I thought I would. Yes, I love the thrill, but I also like the challenge of learning new skills. I often don’t even mind falling on my face, because it means I’m progressing and becoming a more independent skier.
I’ve also made new friends through ADDS. In many ways, these new relationships are the best thing to come from me joining the group. Not only do they make ski days more enjoyable, but they also extend beyond the ski season and improve my life overall.
I now have a slightly better relationship with snow.
I had the pleasure of attending the Brain-Child-Partners conference here in Toronto on Nov. 6-7, 2017. I was there with CanChild but was also representing the youth voice.
The first session, Can We Fix the Brain? shared some fascinating and exciting therapies that help to rewire the brain and improve mobility. But it was the question posed in the title that really engaged the crowd, a question which quickly morphed into, “Should we fix kids with disabilities, and to what extent?” Given this is likely a common question among parents of newly diagnosed children, many parents in attendance stepped up to the microphones to over their thoughts and experiences. Listening to the many opinions on this question, a theme became clear to me: We don’t need to be fixed; we need understanding and tools to help us achieve our potential and participate in society without stigma.
BCP2017, my first such conference, was an excellent example of research and community uniting around a common interest and goal — patient engagement. But how do we achieve effective patient engagement that satisfies all parties? This was a question that received a lot of attention but lacked a clear answer.
Several parents, both official presenters––including Rachel Martens, Julie Drury and Ann Douglas––and those in the audience shared their experiences advocating for their children, what they’ve done, learned and need to change. I appreciate these stories more and more as I get older because they help me to better understand the challenges that my own parents faced and concurred to give me the best life possible. And it is by listening to these experiences that help researchers and clinicians understand what and how they can improve the lives of patients moving forward. I particularly loved what Louise Kinross, editor of BLOOM, had to say about clear and effective communication––if you want to know if parents understand your message, just ask.
Louise also used one of my favourite quotes, from Albert Einstein, to illustrate her point: “If you can’t explain something simply, you don’t understand it well.” Those buried in science often seem to lose sight of the fact that not all of us can, or care to, speak science. Though we much appreciate their work, it should be communicated in the language of those it is intended to help, otherwise, it is almost entirely useless.
As important as the parent voice is, so is the view of the patient. Symon Hay captured the issue well when he said, “I think quality of life should be the root as individuals, health care practitioners, caregivers and researchers.” He also spoke about how lucky he was to have had a doctor who put more stock into who Symon was as a person than just his diagnoses alone. This enabled him to live a full and active life (We have a shared love of travel), when it seemed, on paper at least, that he shouldn’t. I couldn’t agree with Symon more.
I was thrilled to be included with and meet the small group of fellow youth with disabilities from across Canada at BCP2017. However, there should have been more of us. We should have been as considered and granted had as great a platform as parents.
Many of us with disabilities wouldn’t be where we are today without our parents, research, medical advancements and early intervention. For this, I am forever thankful to all those involved in my care and success. But it’s important to remember that we, the patients, lived it and are here to share our insights. This is especially important when discussing the transitions from childhood to adulthood or youth engagement. If you want to know what we think or need, either for ourselves or future generations of children and youth with disabilities––as you should––ask us.
Scott & I are back! In this episode we discuss their experiences with Cerebral Palsy and try to figure out when C.P. Awareness Month actually is. We debate the potential need and reasons for a figurative holiday celebrating individuals with the diagnosis. Give it a listen here.
I’m also participating in a free CP-NET webinar on Friday April 21 from 11:30 a.m.-12:30 p.m.: Growing Up with CP: Mental Health and Well-being. Please register, save the date and share with your network. See the event poster here.