How one Toronto woman with a disability survives our winter

I’m not too fond of winter. 

I know I’m not unique. Few people seem to like the cold, the snow, the freezing rain, the ice or the slush, regardless of whether they’re walking or driving. Shoveling seems like a thankless chore. And getting salt or sand on your shoes and boots is a pain. But having a physical disability can take the struggle to the next level.

I have cerebral palsy.

I live in Toronto, near Greek Town, and walk and take the TTC almost everywhere. The cold weather makes my already too tight, and often sore, muscles hurt even more. I walk pretty well with my canes in the right conditions, but a surprise obstacle or strong wind can quickly bring me down. Add in lots of snow and ice, and I fall a few times a week.  Sometimes I hurt myself, but more often I’m annoyed that my clothes get soaked, or covered in salt. 

I do have a manual wheelchair, which I use for speed and distance, and it significantly improves my stability. But it’s impossible to get over the snowbanks that our plows so thoughtfully push in front of crosswalks.

In my wheelchair, a snowbank might as well be a cement wall. With my canes, it’s a mountain to summit. I often fall, but I usually eventually make it across. On the bright side, falling into a snowbank can be a great way to make friends.

Getting around a snowbank in a wheelchair often means wheeling on the road between the first two shoveled driveways I find, while praying not to get hit by a passing car. Most people know what it’s like to get salt stains on their boots or shoes. In a wheelchair, those stains end up on your coat sleeves, which drag on the wheels, or pockets, which don’t usually stay behind the clothing guards.

I’m lucky to have the ability to choose between mobility devices; not everyone has that luxury.

If possible, I only go out when it’s above -5 degrees Celsius and/or there’s no snow on the ground. 

If I had my choice, I’d be a snowbird. My maternal grandparents are from Edmonton, but began spending winters in Palm Springs about 15 years ago. Since then, I’ve visited every year or two, usually in January or March, depending on when most of my family can go.

Palm Springs is pretty accessible, thanks to its aging population. Seniors and people with disabilities have a fair bit in common in terms of aches, pains and mobility challenges, and share an appreciation for anything that alleviates those concerns. I’ve noticed that we both tend towards guided tours: most aspects of the trip are sorted for you, particularly transportation, which is helpful for those of us who can’t drive or walk long distances.

My family and I spent this past Christmas in Palm Springs. It was fantastic to spend the holidays with my grandparents and to be warm, with no snow to contend with. Most days it was 15 to 17 degrees Celsius. The evenings were chilly, but not cold. Locals knew we were visitors when they saw us in a t-shirt and a hoodie at night, while they wore puffy jackets and toques. On Christmas day, they were surprised to see us swimming in the community pool.

Unfortunately, I’m only 30, and not in the position to fly South each winter. Here are some of my local winter survival strategies.

I order my groceries online from Grocery Gateway, and have them delivered about once a month. Honestly, I do most of my shopping online now. I even get my quad canes from Amazon. This was my last pair

Otherwise, I’m mindful of my outings, and complete multiple errands at one time. I plan my route along wider sidewalks, because they tend to be cleared of snow, or use connected buildings that I can walk through, to avoid the outside. I work from home whenever possible. This is particularly handy when freelancing.

I do struggle with mental health, so to keep isolation and depression at bay, I try to stay busy and social. Spending time with friends, on the phone or in person, is vital. We’ll often get together at my apartment and have food delivered via DoorDash or Uber Eats. Tacos from Mi Taco are my go-to.

I’ve also taken up sit-skiing. About four years ago, I decided I needed an activity to get me out of the house during the winter, and maybe improve my relationship with snow. I’m not athletic, but I love a thrill.

Weaving downhill in a sit-ski is a thrill, even if I fall on my face. I’m still learning, but make progress each season. Rather than a volunteer holding on to my ski to keep me up, they’re now a couple of feet behind, supporting me with tethers. So, I have to keep myself up and I get to make my own turns. I recently figured out how to catch myself with my outriggers, which are like ski poles, when I lose my balance, avoiding a full wipe-out. That’s a major accomplishment. I hope I can do it again.

Joining the Adult Disabled Downhill Ski Club at Mansfield Ski Resort has kept me moving and learning new skills, while making new friends, some now very close.  I’m even a little fonder of winter and dislike snow a little less, at least on the ski hill.

I still dream of being a snowbird. In the meantime, I’m making the best of winter in Toronto and on the slopes.

Originally published by BLOOM.

Thrill of the Hill

Sit-skiing with ADDS volunteers at Mansfield Ski Resort.

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.

Some of my takeaways from the Brain-Child-Partnership Conference 2017

by Pinpoint National Photography
Youth of BCP2017

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.