Adaptive Skiing Taught Me to Embrace the Evolving Nature of My Disability

When I was learning to ski as a kid in Eastern Washington, my parents would give me lessons so they could ski more advanced terrain. Like anyone new to this sport, I fell a lot and struggled with the equipment, but I also kept some core memories. I still remember the wooden cartoon animal signs along the trail and found motivation trying to spot all the creatures as I made my way down the mountain. The feeling of being on the mountain, the independence I had and how it felt to push my limits as an athlete still resonates today.

Around second grade, I was diagnosed with Becker muscular dystrophy, a degenerative condition that affects muscles over time. Although he had enjoyed a very active childhood, some of the activities he enjoyed were becoming more difficult to do, including skiing. When I was 10 years old, I found it increasingly difficult to ski down the mountain. I would get tired earlier in the day and spend more time in the hostel. Even walking through the snow in ski boots was becoming exhausting.

Although it was an activity I did with my family, frustration as my body changed began to take away the joy and freedom of skiing. In the end I decided that it was an activity that I could no longer do. This was a feeling I have felt many times since then, as my muscular dystrophy progressed: my outdoor passions felt out of reach and were no longer for me.

Shortly after I stopped skiing, my brother signed up as a volunteer ski instructor with a Seattle-based adaptive sports organization called Outdoors for All. I imagine this was a push from my parents to continue skiing as my body changed.

As I struggled with my identity, I simultaneously had thoughts that I was not “disabled enough” to fit into a disability program and that I was “too” disabled to be an athlete. I remember having internalized feelings of guilt: that I wasn’t really disabled, right? I could still walk and do a lot of things when I was younger. Could I really play sports and be active? I have since realized that there is no one way to have a disability: each person’s experience is unique and valid. The outdoors is for all of us and disability simply means that we experience it in unique ways.

Back to the slopes

I resisted the attraction of skiing until I was 20 years old. I felt like I didn’t know anyone “like me” who skied, so I told myself it wasn’t for me anymore. My partner at the time, an avid skier and someone I credit for rekindling my love for the outdoors, suggested I try skiing. I finally signed up for Outdoors for All at Snoqualmie Pass in Washington State in early January 2019.

Turns out I loved it. That first week I didn’t have the right gear to keep me warm enough, but I quickly got hooked on sliding on the snow. There are many different sit skis, but the mechanics are similar in all of them. I use a tight seat, called a “bucket,” which keeps me very comfortable, with one ski (mono-ski) or two (bi-ski) underneath. It was amazing how the familiar feeling transported me back in time to when I was learning to ski, and the power I felt in using my body again.

For a long time I had worried that I wouldn’t have enough strength to ski, but now I realized how important it was balance is. It was amazing to be able to travel in a straight line and only need to make small movements to influence the direction of the ski. All it takes is a slight tilt, a tilt of the head, and some nuanced movements. I’ve learned that skiing is more about efficiency and economy of movement than anything else, and the more I’ve refined my technique, the less fatigue I experience, even as my body changes.

Having used an electric wheelchair for many years, I have learned what terrain it works on and, more importantly, where it cannot go. Snow was always one of those forbidden areas. To be clear, my wheelchair is a tool that gives me freedom and independence; Phrases like “in a wheelchair” always irritated me. I found it difficult to walk more than a few steps without getting tired; My wheelchair opened the world to me. It allowed me to live independently, travel and quickly cover distances that I would otherwise no longer be able to travel. But sit skiing showed me that by using a different tool, I could use my body to navigate the hill, even as my strength changed over time. I could be an athlete again.

My goal as an athlete, especially with a degenerative disability, is not necessarily to ski independently. Instead, I just want to ski.. I want to push my limits within the limitations of my changing body. The creativity of trying new tools and methods is what inspires me. If having the support of a ski buddy is what I need to push those limits and feel like an athlete, then it’s the right method for me.

Instructor in training

The following season, I signed up for Outdoors for All again and continued to develop as an athlete, grow my community, and discover the methods that work best for me. Outdoors for All predominantly uses a method called “tethering,” where the adaptive skier is a few feet in front of an instructor, but is still attached to them. I found that instructors help me brake and turn, but they also limit the terrain I can ski on.

On trips to Whistler, British Columbia, skiing with Whistler Blackcomb Ski Resort’s adaptive program exposed me to a new method some adaptive programs call “piloting,” in which an instructor holds onto a handle on the back of the ski. It opens up much more terrain that is too narrow or too steep for anchoring to be safe. It is a unique partnership that requires constant communication and coordination as we navigate down the mountain. The thrill of initiating and leading turns, and the confidence it requires, is unlike any other experience I’ve had and has allowed me to ski more advanced terrain than I did when I was younger as a stand-up skier.

I never thought piloting was the correct term to use. To me, it does not reflect the experience of the athlete and there is a perception among some members of the adaptive sports community that it is the instructor who does all the work. After all, who is the “pilot”? Adaptive skiing is and should always be focused on athletes who practice the sport in all aspects, including language. Instead of piloting, terms like “assisted sit skiing” better reflect the athlete’s ability to influence the sit ski. When I ski, I lead the way, but my ski buddies are there to provide support when I need it.

At the beginning of 2024, I spent as much time as I could in Whistler, perfecting my own skiing and pushing my limits, but also looking for new ways to develop. I joined a Level 1 Adaptive Instructor Training hosted by Whistler Adaptive. I realized the great potential there is for instructors to better understand the experiences of athletes with disabilities. And how much representation matters in helping others find adaptive sports: I would have tried sit skiing sooner if I had seen instructors or other athletes with a similar lived experience.

For example, I cannot independently transfer onto my ski and frequently coach new ski partners on the best transfer technique. This is usually someone’s first interaction with sit-skiing, and if it’s an awkward transfer, someone is less likely to enjoy the experience overall. Although someone without a disability can teach this, I believe that sharing my experience can help instructors become “grounded” in the potential impact of each of our actions.

As my body continues to change, it has become easier to reframe what I once considered a “loss” of ability into an opportunity to be creative and adapt. Skiing has helped me change my way of thinking and see my muscular dystrophy as a fundamental part of who I am; Although the degenerative nature of muscular dystrophy is uncertain, what fulfills me is seeking experiences that help me grow. There are endless opportunities to evolve and continue discovering new ways to ski and experience the wonders of the mountains.

I am encouraged by innovations such as TetraSkia project led by the University of Utah, which uses a joystick or sip-and-puff device to allow athletes who do not have the strength or range of motion to use traditional methods to continue skiing. As equipment and technology continue to advance, innovation and creativity mean there is always a way for anyone, with or without disabilities, to venture outdoors.

I discovered my love for skiing and I would encourage anyone to take a similar leap and try something new. You never know how much joy and passion it could ignite, and how much it could change your life.