A leader and advocate in the fight against ableism
Geoff McMaster - 1 August 2024
The irony of the situation was too cruel to ignore.
Hussain Alhussainy was heading to class one day on the walker he uses because of cerebral palsy, a neurological condition that limits mobility. Access to the building he was entering was obstructed due to construction, so he had to find another way in, carrying his walker through the snow.
“I couldn’t help thinking, ‘The walker’s supposed to help me. I’m not supposed to be helping the walker,’” he says.
It was just one of countless instances when Alhussainy felt excluded from the full university experience many students take for granted, and it was starting to chafe.
His condition mostly affects his lower limbs, requiring a wheelchair or walker to get around. “But it also affects every aspect of your being in some way or another,” he says.
His hands have almost full range of motion and co-ordination, but he finds it difficult to do precise tasks such as handwriting or typing. He also has limited vision when reading.
A patient in the health-care system since birth, he knew it had a long way to go to adequately accommodate people living with disabilities. When he arrived at the U of A, he burned with a long-held dream to study medicine and change the system from within.
As a first-year biology minor, he would make simple requests for help in the lab — someone to pour solutions, for example, or handle gear that required a degree of co-ordination to operate. He found no recourse.
“I thought, ‘There goes my dream,’ — there was literally no place for me to go.”
His major was political science. He ran into obstacles there, too, finding it hard to get help with taking notes and typing. But at least he could keep disability at the forefront of his intellectual pursuits, studying disability rights and the systemic barriers that prevent people like him from succeeding.
He also immersed himself in student politics, “pestering the right people” to promote change. He served as president of the Organization for Arts Students and Interdisciplinary Studies, represented undergraduates at the Arts Faculty Council and General Faculties Council, and joined the Council on Systemic Ableism as a founding member — the only undergraduate.
Formed in 2023 by Carrie Smith, vice-provost, equity, diversity and inclusion, the council comprises members who have lived experience of ableism — discrimination in favour of normative bodies, minds, or capacities — and work toward “collective access, equity and affirmation.”
“In his role as a founding member of the Council on Systemic Ableism, Hussain has been a staunch advocate for disabled students, speaking publicly on the importance of not only barrier removal but also the U of A’s commitment to embracing disability culture. Through his continued efforts, the U of A is well on its way to making good on its commitments toward becoming a more inclusive institution for all students,” Smith says.
“Hussain is a leader — in all senses of the word — and I am fortunate to have learned from and with him.”
For his persistent activism, Alhussainy received the Judge Gurcharan Singh Bhatia, C.M. Outstanding Leadership Silver Medal in Arts this year.
“I grew up with this mentality to never take no for an answer,” he says.
His parents immigrated to Canada in the late 1990s, his father born in Iraq and his mother from Lebanon. Both were well educated in petrochemical engineering and education respectively. But because his father was supporting family back home, he had to go straight to work, unable to afford the time and expense to requalify in his field in Canada.
“They basically started from zero,” Alhussainy says. When he was born shortly thereafter, his mother decided to devote her full-time attention to his medical needs. “The greatest sacrifice a person can make,” he says.
“They always taught me the importance of doing what you can with what you have — of bettering your life, but more importantly the lives of people around you.
“‘You’re on this earth for a very limited time,’ they said. ‘The best thing you can do with this time is make sure the next generation and people around you have it better than you did.’”
His early education was painful as teachers didn’t know how to respond to his needs, often swayed to stereotypical notions of people with disabilities being incapable of fully participating in the classroom, he says.
“As I got older, I gained a certain sense of maturity and was able to advocate for myself and for others. In Grade 5, I started finding out what works for me as a student and what I needed to succeed.”
By the time he reached high school, he made the honour roll each year, his parents supporting him every step of the way.
“They kept saying, ‘Show them you belong. Make space for yourself.’ They used to joke, ‘You have a walker, people will move because they’re scared to get run over by your wheels.’”
Alhussainy is now making space for himself in disability studies, heading into a master’s degree in political science. He calls it one of life’s great strokes of fortune to have met Joshua St. Pierre, ’13 MA, ’19 PhD, Canada Research Chair in Critical Disability Studies, who supervised his honours thesis on ableism within the postsecondary institution and the barriers to accommodation and full participation for disabled students.
St. Pierre has just launched a dysfluency studies project called the Stuttering Commons to create a community of people affected by dysfluency and to question the dominance of a medicalized approach to stuttering.
Alhussainy’s master’s project will expand on his honours thesis, combining disability and postcolonial studies of the Middle East, and challenging narratives of his ancestral homeland as indifferent to disability rights and inclusion.
“I aim to contribute to a more nuanced understanding of disability inclusion in the Middle East,” he says, “addressing the root causes of inequality to promote justice for the disabled in the region.”