Max Setka is not afraid to step up, take on a challenge, and power through tough situations. It takes courage, and Max has that in spades. Born with Arthrogryposis, a rare muscle disorder that causes congenital joint contractures in two or more areas of the body, Max has faced obstacles since he was a child to get his body to work functionally. Over the years, he has learned how to take on things that scare him and, in the process, unveil new opportunities. Now, in his last year at Trent University, Max is more independent than ever. He continues to take on difficult tasks and shares insights to inspire others to do the same. As the elected Student Union Disability Commissioner, he is reshaping Trent University to be more accessible for those with mobility challenges and for other types of disabilities. Max has unlocked his ability to be an effective leader and is having fun making life better for all.
Max is fortunate to have parents who understand him – his strengths, temperament, and challenges. When he was a child, they pushed Max when needed and helped him learn to problem solve. As a pediatric occupational therapist, I have witnessed kids pushing hard to achieve more than I expected of them (but not more than their parents expected of them), which resulted in tough and confident individuals. Max acquired the motor functions of walking, and the ability to use his hands to be independent. He approached each motor task as a challenge, a skill that needed practice, and mitigated mistakes with patience and tolerance. Exercising the virtue of perseverance daily, Max continues to move forward and go far in the challenges he takes on as an adult.
A leader like Max learns over time that no matter one’s personal circumstances, obstacles need to be approached as opportunities. Challenges are the seeds that enable one to grow and discover one’shigher potential. Max reflects, “What is stopping anyone from trying? Whether I’m successful or not, I have the story that I tried.” And that story fuels Max’s confidence to persevere and step-up to lead. It’s the hardest step of all, to take on a challenge and try something scary and new, but it is the only way to unlock the skills of great leadership.
Have you always been a risk taker – pushing boundaries and doing more than what was expected of you?
I have always been a person that people think takes a lot of risks, based on the condition that I was diagnosed with Arthrogryposis. A lot of things I do in general wouldn’t be considered ‘risky’. When I was in grade 9, I started taking public transit by myself because of the freedom; I didn’t have to wait for one of my parents to drive me somewhere. I could be impromptu and see my friend perform in a show or something. I learned very early on if I wanted to have some semblance of independence, I needed to do this. I have found that this is not expected of people with my type of disability. I want to take on responsibility. Other people will say, “Are you sure you can handle this?” It’s the only way I can discover if I can or cannot do it. I don’t want to push an opportunity away just because there might be one piece of it I cannot do. I would just advocate for someone else to help me do it.
I’m in my 5th year of college. I started in 2016, and it’s definitely been an experience for me. I moved away from my family, and had to deal with the stuff around my disability on my own. That meant finding solutions for accessibility challenges on my own, like special pens for writing. In high school, my parents and teachers set out a whole plan for me because they knew what was needed. I had to do this for myself. Of all my friends, I was the one to make the decision to ‘go away’ to school. I made the decision to move into residence where I knew I would have to do everything for myself. I took lots of role modeling from both my parents, who are independent and pushed me. So, when they knew I wanted to move away, they said, “Okay, here is how laundry works, here is how cooking works…” and taught me all those life skills that you need when you’re on your own. Other friends of mine that didn’t move out didn’t need to learn these, because they were coming home every night.
At school, I ran for the position of student union disability commissioner, and I was successful in the election and won the seat. I have a lot of ideas for how to bring accessibility to the school. It’s a good school, fairly accessible, but there is room for improvement. I feel that having someone with firsthand knowledge to point out where more accessibility needs to be is important – not just for my type of disability but several invisible disabilities that need accommodations. I was excited to push this, and I’m glad I’m now in a position to make it happen.
What is your definition of ‘defy convention’?
If you want to be seen as someone with ability, you’ve got to do things that aren’t expected of you. Other people see me as ‘just another guy’. And to be honest – and please bear with me using this symbolism – I don’t use my disability like a crutch. I refuse to say “I’m disabled, so I can’t do that”.
What are your passions in life?
My biggest career goal since I was 9 years old was to be a sports journalist. Obviously, living in Toronto, you have the ability to do that in different capacities. I originally went into a Journalism and Literature major, but by my third year, it wasn’t the direction I wanted to go in because of the way it’s structured at this particular school. Instead, I took a double major in Journalism and History to now a straight History degree. A lot of people think I’m going to teach, but I say “no”. You can go into a lot of fields with a history degree, including journalism. I’ve definitely found something I am passionate about, so I’ll need to finish my degree, and then go into sports journalism.
What I like about history is the different variety of periods. I love the courses I’ve been able to take, from Alexander the Great, to WWII, to poly-science. These courses have definitely given me an interesting view on disability, and shown me how views and flaws evolve over time, and to see how things lead to change. I’ve done searches on disabilities. For example, I did one from the medieval period to the mid 1940’s to now, including how people with disabilities were seen as ‘broken’, and Nazi Germany seeing disabled people as ‘flawed’ and getting rid of them.
I’ve always been big on reading in general. It was one of the things I could do even before I could walk as a child. I was told I was able to read in grade 1 at a grade 11 level in terms of speed and comprehension. I had read the first Harry Potter books before I went into grade 2. Reading kept me educated while I was trying to make the rest of myself work. I really got into non-fiction later in high school, and that helped seed the history major in me. I have to thank my high school English teacher for that, because up until then I was reading just Harry Potter types of books. I was able to get into a few different ‘head spaces’ thanks to the assignments she had us do, and the books she had us read.
Cooking is another big one for me. I learned to cook a couple of things prior to university. I’m getting pretty good at cooking, considering my hand tremors. I don’t adapt much. I’m just careful of cutting, so I monitor things closely. It takes me longer, but I enjoy it.
What is your favourite thing about SideStix?
I tried a couple of different styles of crutches until I found SideStix. My dad found them, and they were exactly what I was looking for – versatility. I use them for everything. If I don’t have them, I feel uncomfortable getting out of the car.
I like the durability best. I’ve even dropped them in the lake (my mom dove in and rescued them). I’ve brought them everywhere – I like the variety of tips. I recently found out you have the ice cleats. Now I can walk around in between classes when it’s icy out, and that makes things safer. Also, they’re removable, so you don’t have to have them stuck on your crutches when you don’t want them.
What gives you courage?
I like to say I’ve experienced something, whether or not it goes well. If I’ve missed out on something because I was too scared to do It, I may never go back to pushing myself. So, courage to me is putting myself out there and doing something even if you’re scared to do it.
I’ve learned that it’s not totally certain you’ll ever succeed at something, but if you don’t take the opportunity to do the thing you fear, you’ll never be able to tell the story about when you overcame something you thought you couldn’t do. Or if I fail, I can say that I failed, but I did it.
When do you feel most powerful?
When I’m doing something that people I know would most likely not do. I can say that I’ve done something, and tell my friend that despite your situation, you can do it too. What’s stopping you from trying? That’s definitely big for me.
What’s the best investment you’ve made in life?
I think my SideStix were an investment to expand what I’m able to do on my feet. I was taking my wheelchair to a lot of places, and obviously it’s a big piece of metal. Now, I can throw these SideStix in the car and still have that same level of support no matter where I am. So, SideStix was definitely one big investment.
Knowing what you know now, would you have done anything differently in the past if you were just starting out on your journey?
Yes, I would have taken more risks. I just didn’t know that I could challenge myself like I do now. If I had just pushed myself a bit, I probably could have done more.
What are some of your favourite ways to stay motivated?
I like to see the good things going on in the world. I know there are a lot of difficult things in the media, and when I get down, I look for what good is going on in the world. There’s a lot. Also, thinking about how far I’ve come personally. When I get to a point when I’m not motivated, I think of what I’ve done in my life so far, and what people said I couldn’t do or didn’t believe I could do.
Do you have a message for other crutch users?
Don’t let it stop you. Don’t worry about what people think you can’t do with them, and look at what you CAN do with them.