True Story: I Have Cerebral Palsy and I Travel The World

I’m a 21 year-old junior at the University of Oregon, double majoring in International Studies and Public Policy. I enjoy riding my Segway scooter in the sunshine, chowing down on copious amounts of farmer’s market produce and people watching on the BART train. When I’m not doing that, I work as the Co-President of my University’s buildOn Chapter.

Cerebral Palsy (CP) is a neuromuscular disorder. There are different types, and I have spastic diplegia, which means that the CP primarily affects the muscle function in my legs. In my daily life, this manifests for me as having very tight leg muscles and needing to use crutches to help me walk.

How old were you when you were diagnosed? What sort of treatments are available to you?

I was diagnosed with CP at birth. I was born premature at 28 weeks and because CP is primarily a disability that affects premature babies, the doctors identified it right away. When I was three, I had my first operation to stabilize my hip joints. After that, my parents started taking me to physical and occupational therapy.

Both my mom and dad were adamant about avoiding surgeries for as long as possible while also doing everything they could to help me live the most active and independent life I could. At thirteen, I had hamstring lengthening surgery, which has made it significantly easier to walk because my are not as tight as they once were. Making the choice to do the operation was really difficult, but I’m so glad I did it because it turned my life around 180°. Finally, within the last ten years, Botox has developed as a very successful treatment for people with CP, so I started these series of injections last summer and do the procedure every 4-6 months to keep my muscles relaxed.

When you were diagnosed, how did you/your family/your doctors expect that cerebral palsy would affect your life?

My parents knew it would be difficult, but from as early as I can remember, they constantly worked to make sure I lived the most integrated and wholesome life possible. 95% of the doctors I’ve encountered have given me really dim prognosis’ on my future and told me “no, you can’t do that.” I’ve defied all of their expectations. My parents had a “tough love” mentality when it came to parenting me, and while I’m not sure I agree with every aspect of this philosophy, I’m grateful for it now because it gave me the independence to be who I am today.

Now I understand that my disability is only one aspect of my identity, and that my disability will never define who I am or what I’m capable of. Physically, I expend so much more energy than an able bodied person and everything in daily life, even the little things, such as tying my shoes, takes me longer. I’ve just had to accept that.

You’ve traveled all over the world and taken part in heaps of volunteer projects. How do you manage such physically demanding adventures?

I manage such physically demanding adventures by learning as much as I can about the place that I’m going before I get there so I can mentally prepare myself. Thinking ahead is an essential key to navigating any city without burning out, but this becomes even more crucial when traveling outside the U.S. where they are laws regarding equal access either don’t exist or are lacking in the implementation on the ground.

On the other hand, there’s the necessity of being flexible because time and time again I’m reminded that nothing ever goes according to plan no matter how much I prepare ahead of time. I’ve also had to learn how to be my own advocate, especially now that I’m starting to travel more on my own. I’ve accepted that asking for help is okay and that I don’t need to feel ashamed of myself for needing an extra hand here and there.

How have your school and the organizations you’ve worked with dealt with your disability?

My school has been super supportive as well as the vast majority of the organizations I’ve traveled with. My attitude has always been that no one is going to stop me from doing what I want. I encounter shitty institutional bureaucracies on a daily basis but I’m a pro at cutting through even the thickest layers of red tape. I’m determined to keep up the good fight so that maybe later on down the road, the next person with a disability who wants to build schools in West Africa like I did will have an easier time making that a reality. Breaking down societal barriers isn’t easy, but extremely necessary and worth it.

What are the biggest challenges of navigating travel with a physical disability?

The biggest challenges of navigating travel with a disability comes in managing my day to day routine. I didn’t realize how much I took accessibility for granted until I left the U.S. Even within the States, there’s just a lot more logistics that I need to take into account that an able-bodied traveler might not be so preoccupied with.

For example, I travel to Minneapolis often to visit my relatives and while getting around is the airport is fine with the help of baggage handlers and wheelchair escorts, I need to always make sure that there is someone on the other end to help me with my bags because I haven’t figured out quite how to carry my suitcases while walking with my crutches. By the way, if anyone reading this is a traveler with a disability and has found a workable solution for carry luggage independently, I would love to hear your idea!

In contrast, when I’m traveling outside the U.S. the anticipation of logistical challenges is just amplified times ten. Solving these challenges requires the most creativity and patience I can muster. Right now, I’m in Buenos Aires, Argentina on a study abroad program and the little things that I don’t ever think about at home, such as finding restaurants with bathrooms on the first floor is a significant challenge I encounter daily.

What adventure are you planning next?

After college, I plan on going into the Peace Corps or similar post-grad service program and writing a memoir about my travels.

What advice would you give to others in a similar situation?

Be determined yet patient. Plan ahead but expect the unexpected. Know deep down that the only person keeping you from doing what you want or being who you want to be is yourself.