Omar Sheikh, a Pakistani-American with Becker Muscular Dystrophy (BMD), spent eight months undertaking an independent project focused on muscular dystrophy (MD) treatment with a Fulbright Open Study/Research Award in Edmonton, Canada. Read on as the NCDE interviews him about this life-changing experience.
Describe your disability and what it means for you on a day-to-day basis.
When I was five, my mother noticed my legs would abruptly lock up, forcing me to rest often. Something was not right but the doctors were not able to figure out what happened. My mom insisted they keep searching for a way to help me. After a year, the diagnosis came in as Becker Muscular Dystrophy (BMD), a genetic disorder that impedes physical activity. I was told never to overexert myself or my muscles would atrophy.
Overall, I have a mild form of muscular dystrophy, which allows me to keep aspects invisible. This condition primarily impacts my walking and ability to use force. Some fine motor tasks are also tough for me, which has required some additional motor practice. However, I also have a heart muscle condition that demands examination every couple of years, so I give special attention to my heart, too. This does not impact me daily per se, but I do have to pay special attention to keeping my heart healthy. Beyond the obvious, I monitor my energy levels throughout the day, as they dip. However, living with my BMD for years has taught me how to manage it.
What types of accommodations did you use on your experience? Your blog mentioned that you use a scooter sometimes. How does that work?
Here’s a general idea of my condition and capabilities. My ability to walk is variable, which makes my need for accommodation variable, too. A rule of thumb I use is to keep the walk under 15 minutes unless I am in a comfortable position (such as a familiar place or a place with benches). For longer distances or much back-and-forth, I use a mobility scooter to help me conserve my energy and reduce pain. For a short while, I used a cane, but I tend to rely on walking or my scooter. Public transit and cars help me extend this distance.
Using my scooter helped me traverse Canada during both the quiet weather of August and the snowy, frigid air of the winter months. There were many chances for problem solving, such as the lack of ramps in key areas or maneuvering through snow and ice. (More about this below.) However, I generally found the public transit system effective in traveling across Edmonton with my scooter. For nearby U of A buildings, I actually could just walk, provided I was going to sit for a while. Going to the lab, I took my mobility scooter, helping me focus my energy on the lab work.
How else would you describe yourself?
I am a Pakistani-American, an Eagle Scout, and a member of the public speaking group Toastmasters.
Tell us about your Fulbright Research Award in Canada.
I carried out my Fulbright Open Study grant project from August 2019 – March 2020 at the University of Alberta in Edmonton, Canada. Showing my passions in scientific research and community building provided a golden moment of growth for me. I applied my perspective towards researching muscular dystrophy, even working on patient derived cells. This was a great chance to meet Canada and insert myself fully and bring the U.S. and Canada together. Making friends across borders, achieving a professional milestone as a researcher, and even creating a global impact. Fulbright allowed me to bring my ambitions and creative problem-solving to new exciting adventures.
Share three highlights of your Canada experience.
-
A massive highlight of my Canadian experience was befriending people originally from Canada, Lebanon, Japan, and all over. Though many of my friends from Fulbright are Canadians, born there, numerous friends were also new to Canada themselves. Being a cultural ambassador cemented my desire to make friends with all kinds of people, pushing me to try new things. During Fulbright, I was more outgoing, more driven to make friends and explore. Before this experience, maybe I would have stayed put more often.
-
I entered Canada with a plan to work with as many organizations as possible. Coming in, I received an affiliation letter from Muscular Dystrophy Canada (an equivalent organization to the USA’s Muscular Dystrophy Association). Searching around, I located other organizations to explore. For example, the University of Alberta Toastmasters (UTM) met very close to where I lived. Within my first week, even before starting labwork, I participated in UTM meetings. While there, I mentored many other members, even past my time physically in Alberta. However, my engagement grew beyond that. For example, I learned about the Japanese Conversational Club from a friend and found myself joining the U of A Feminist Club. I also connected with U of A faculty, met with the Alberta Office of Advocacy for People with Disabilities, and even talked to the Voices of Albertans with Disabilities group. I did a lot!
-
Exploring an entirely new environment. During my first few days, I explored Calgary (the other big city in Alberta) and went to the immensely famous Banff national park. In September, I was whisked away to Ottawa for the Fulbright Canada orientation, allowing me to meet my cohort and stay at the illustrious Lord Elgin hotel. Of course, in Edmonton, I explored much of everything to offer, including a cinnamon roll place I liked, and found other new food spots to try out and appreciate. There is also a host of indoor malls, including the most known one – West Edmonton Mall.
Share three challenges that you had to solve while on your Fulbright.
-
Snow and cold – this challenge provided cascading issues to solve. For one, I had to dress warmly knowing that weather and other access issues could delay me and force staying outside for longer. A relatively thin layer of snow can delay the scooter, which doesn’t have a winter tire available by Pride the manufacturer. Some clever individuals can modify their equipment themselves, but snow is pretty challenging. Packed snow also produced a very rocky feeling that caused me soreness and some grief. A weird issue comes up in extreme cold temperatures – the scooter battery charge starts dropping quickly. To handle the situation, I had to charge my scooter both at the lab building and at home.
-
Difficulty establishing new social ties – making friends in a new place is really challenging, even with the Fulbright connections. I was fortunate to be in a residence space, to attend a Toastmasters group, and also have a fellow Fulbrighter at the university. At the same time, you are only there for so long, which adds another challenge. I spent lots of energy trying to find friends in different places and keep building upon the fresh social networks.
-
Difficulty making a lasting impact – though the Fulbright itself is a great award, I felt ‘pressured’ to make a great, lasting impact with my work and disability rights advocacy. My Fulbright advisor from Oregon State reminded me that us Fulbrighters already had the accomplishment. The rest was just doing our best. My project ended 3 months early because of the COVID-19 pandemic, which prevented me from producing a scientific paper on my work. Simultaneously, there was also trouble with extending new social ties to create new outreach opportunities, and that same issue of ‘not enough time.’ A pretty good amount of my Fulbright accomplishments actually come from right after I returned to the U.S., funnily enough.
Where did your interest in Muscular Dystrophy research come from?
There are two main contributors to my interest in Muscular Dystrophy Research: on a personal level and a professional level. Having muscular dystrophy predisposed my interest, but that is just one aspect. Going to many specialists – including neuromuscular doctors and cardiologists – allowed me to learn a little about therapies, like steroids and stem cells. Incrementally, I got more excited to keep up with this subject. In turn, high school science classes like AP Biology and AP Chemistry inspired me to pursue the field of bioengineering, which focuses on the application of biology. Fall 2014 brought my exposure directly to a muscular dystrophy researcher. An Oregon State Professor named Hong Moulton gave a talk about a specific kind of therapy (antisense therapy) for Duchenne muscular dystrophy, sparking my academic and scientific passion in this emerging area. Two years later, Professor Moulton hosted Professor Toshifumi Yokota at Oregon State for a talk, which introduced me to his great work. Through this connection, I applied for the Fulbright to study under Professor Yokota. The rest is, as they say, history.
How did you find the opportunity to work in a lab in Alberta Canada?
The opportunity to work in a Canadian lab was fantastic. My mentorship in the Yokota Lab was stellar and gave me many chances to expand as a scientist and as a professional. Some aspects of the lab, like the rigorous research approach and many familiar tools and facilities, are pretty similar to biomedical labs here in the U.S. At the sametime, Canada proportionally has more immigrants than the U.S.; in this lab, many of us, including the professor, were not originally from Canada but fostered a great community. I also found that Canadian labs focus more on completing your work effectively over focusing on hours spent. The lab days still extended from morning to afternoon, but rarely was evening or weekend work required. This slightly slower pace felt more comfortable to me than lab experiences in the U.S.
You also have an interesting background with Japan, having studied Japanese and traveled there. Could you share about that?
My background with Japan starts young. I have long been interested in Japanese culture. For example, there are games like The Legend of Zelda: The Ocarina of Time. In that game, you play a swordsperson named Link and explore forests, volcanoes, deserts, and other fascinating locales. Ocarina of Time in fact came out around the time of my diagnosis with muscular dystrophy but gave me this immersive environment without limitations. By 2014, when I went to Japan, I was already very fond of Japanese animated series (anime), for instance, but this gave me a chance to step forward into cultural immersion. On top of a language barrier, I navigated a rather significant accessibility barrier with how different Japanese systems are from American ones. Though I studied Japanese language on and off, I really got going while attending the Japanese Conversational Club at the University of Alberta during my Fulbright. Even with the pandemic, I continued attending the club until 2022, helping shape my cultural interests further. Later in 2022, in fact, I wrote an article about depicting wheelchair users and their experiences in Japan in the film Josee, the Tiger and the Fish for a website. Integrating my personal research into Japanese disability rights with my own experiences in Japan made this an especially meaningful experience. Still fondly think about my memories of Ocarina of Time, the Japanese Conversation Club, and more. My return trip to Japan is a matter of when, not if.
NCDE is a project of the U.S. Department of State’s Bureau of Educational and Cultural Affairs, designed to increase the participation of people with disabilities in international exchange between the United States and other countries, and is supported in its implementation by Mobility International USA.
