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Mahadeo Sukhai Challenges the Norms for Scientists with Disabilities

Mahadeo Sukhai. Credit: Michaela Burton

For his entire career, Mahadeo Sukhai has devoted himself to both cancer research and improving STEM education for students with disabilities. His extended resume often fools people into thinking he is much older than 39.

That’s just one of the misconceptions he grapples with on a regular basis. The other is that he can’t be a scientist because he is partially blind.

Born with congenital cataracts, Sukhai does not see the same way most other people do. The condition, which can typically be treated, was not diagnosed at birth. Even with surgery to remove the cloudy lenses that blurred his vision, Sukhai’s brain never developed the wiring needed to control focusing and movement of his eyes.

“There are all sorts of functional consequences of what I was born with,” Sukhai said. “But you can’t infer from ‘bilateral congenital cataracts’ what I can or cannot do.”

His spectacles enable him to resolve detail at a set focal length. He moves his whole head while reading, not just his eyes — “like the head of an old typewriter,” he said. But he has difficulty looking at objects or people for longer than a few seconds because it causes severe headaches.

Growing up in Guyana, Jamaica, and Barbados, there was little support in the elementary schools for children with disabilities. Initially, Sukhai was home-schooled by his parents who were both scientists by training. His mother was a chemist and educator, and his father studied agricultural sciences before entering the corporate world.

Sukhai devoured encyclopedias as a child. He showed a particular interest in science from an early age. He recalls seeing the high-contrast painting “Saturn as seen from Titan” by Chesley Bonestell, when he was four, and thinking “I want to understand that.” (He notes that now we know the 1944 image is scientifically inaccurate.)

While not having any formal support systems in the Caribbean presented a challenge, it also meant he grew up in a society where no one told his parents their blind child could not pursue his dreams.

“That was the beauty of it,” he said.

They found a small private school that prepared students to pass a standardized test, normally taken at age 11, to determine which high school they would attend. He began studying what was necessary to enter high school when most children learn basic arithmetic and spelling.

“I ended up being in an environment that allowed me to speed up,” Sukhai said. “It seems perverse given everything people say about kids with disabilities and how long they take to get things done.”

Sukhai and his family moved to Toronto, Canada, in 1989, where he was able to pursue a more traditional education, even though he was often much younger than his classmates. He started high school at 10, undergrad at 15 and graduate school at 19. While he originally planned to study astronomy at the University of Toronto, he was completely turned off by a bad computer science professor. He switched to biology, having loved the subject in high school thanks to an excellent teacher.

Within the biological world, he was attracted to genetics partly because of his own genetic condition, but also because he was fascinated by how changes in something as small as a gene have such outsized impacts.

In graduate school, Sukhai studied the genetic mechanisms of leukemia using a mouse model. He designed experiments and analyzed the data, and a lab technician helped with detailed hands-on tasks. Instead of squinting at specimens under a microscope, he viewed enlarged images on a screen. He earned a master’s degree in pharmaceutical sciences and defended his PhD on cancer genetics from the University of Toronto in 2007.

For the last decade, he conducted research for the University Health Network in Toronto, where he investigated a leukemia treatment using a compound usually found in anti-malaria drugs. He also led a team of researchers that used next-generation DNA sequencing to analyze genetic changes in response to cancer treatments and evaluated the potential effectiveness for individual patients. They developed a framework for these genetic interpretations.

Sukhai found bench-to-bedside research very rewarding. “You are able to figure out how to apply a discovery made in the lab to how a patient does in real life,” he said.

At the same time, Sukhai has been interested in science, technology, engineering and mathematics (STEM) education broadly, and the experience of STEM students with disabilities in particular.

Even though people with disabilities are increasingly accepted in some parts of society, Sukhai observes that resistance in the STEM community still remains high. He has led several large-scale research initiatives analyzing the barriers to scientific higher education and research and identifying ways to make spaces at universities and in laboratories more accessible.

Now, as the head of research and chief accessibility officer for the Canadian National Institute for the Blind (CNIB), he investigates the experiences of people with vision loss in education, the workplace, healthcare, and society at large, and how to improve systems so people with vision loss are empowered to fully participate in society.

During his research, Sukhai has found an overwhelming amount of default thinking in STEM education — rules and policies that have been followed for generations, but never questioned. Often, simple solutions to improve educational experiences for students with disabilities are available and could easily be implemented, Sukhai said. For example, allow pupils more time to finish exams; this is critical for students with vision loss if large print materials are unavailable, but could actually benefit many students.

“We don’t think about the student experience,” Sukhai said. “We don’t think about why we teach science the way we teach it… we just do it.”

He suggests that all students be encouraged to explore and to fail. Rather than only giving them experiments designed to succeed, teach them how to troubleshoot when things go wrong. And instead of emphasizing dry facts, ignite their curiosity with stories of discovery.

“The spirit of science isn’t taught,” Sukhai said. “We distill it down to ‘this is what we found,’ as opposed to ‘this is how we found it.’ The joy of discovery is 90 percent of the fun of science.”

If more educators changed their approach to STEM education and students with disabilities, Sukhai suspects it could go a long way towards fostering the next generation of passionate, innovative scientists — one that includes many more researchers with different abilities, or as he puts it, “the full range of human phenotype variation.”

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<p>Mahadeo Sukhai.&nbsp;Credit: Michaela Burton</p>
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