Amon remembers waking up covered in blood from all the scratching.
He was born with 13 allergies, eczema, and asthma. His conditions made him different and his peers didn’t understand. They couldn’t see what was going on inside.
For many Canadians, accessing school support for their disability can take years of work, if it’s available at all. And it only gets more challenging for people with English as a second language, people in a visible minority and people with invisible disabilities like Amon.
According to 2023 data published by Statistics Canada, one in four Canadians had at least one disability in 2022. Mental health and pain-related disabilities made up 25 per cent of all reports.
“It’s kind of hard to justify to other people why I can’t do what they can do because it’s invisible,” Amon said. “They can’t tell. They can’t verify that I’m different than them.”
Amon started high school and things got worse. He developed an allergy to water and to the school itself.
“I was barely going to school,” he said. “Even my parents didn’t fully understand what was going on for me, so they were making me go to school, and then I would have an asthma attack and I’d ask them, ‘Please let me come home. I can’t be here.’”
Amon is 15 now, and for the first time, he is getting support with his classes through a Student Alternate Learning Program, letting him study remotely.
It took a long time for Amon to get the help he needed, and he wasn’t alone on that long journey to care.
“Schools are doing it so terribly,” said Carly Fox, 21, the communications and partnerships director at the National Educational Association of Disabled Students in Canada (NEADS).
“What we’ve really seen across the board, and it’s really unfortunate, is that there is a bit of an adversarial relationship a lot of the time between administration and students, but also between accessibility service providers and students. And a lot of the time this does come from a lack of resources for those accessibility offices.”
NEADS is a Canadian advocacy organization, led by people with disabilities, who lobby for enhanced accessibility supports at post-secondary schools across Canada, according to Fox.
In their January 2023 State of the Schools Report, NEADS’ researchers Elizabeth Mohler and Chloée Godin-Jacques wrote, “Disabled students are attending post-secondary institutions in rapidly growing numbers, the number of disabled students graduating is not rising at the same rate.”
According to the researchers, students with disabilities must advocate for care themselves and may be rejected despite laws in place to protect them.
“The ability to understand your rights and communicate them greatly contributes to the ability to self-advocate effectively,” wrote Mohler and Godin-Jacques.
Fox said only five provinces have laws around accessibility, British Columbia., Quebec, Nova Scotia, Manitoba and Ontario.
But many people don’t know their rights around accessibility or have the words to ask for help in the face of the complex systems at schools.
Dr. Allyson Eamer, associate dean of Ontario Tech University’s Mitch and Leslie Frazer Faculty of Education said people may not receive support because they don’t speak and write English as a first language, making detailed applications and constant communication a barrier.
Eamer said she began researching the inequalities of support when she experienced challenges advocating for her grandson, who was born with an invisible disability.
“I have levels of frustration with respect to the kind of care that my grandson got and that I’m not comfortable going into a lot of details simply because some of those practitioners are still involved in his care,” she said.
She said she spoke to Black, Muslim and South Asian parent support groups who formed due to negative experiences with health care or other more general groups who didn’t understand “the racist reactions that occur when a Black teenage male is behaving oddly” in public due to an invisible disability like autism or cerebral palsy.
When it comes to getting support, parents must be the “squeaky wheel” and push for it, often ending up on long wait-lists, as she found while looking for support for her grandson, according to Eamer.
She said, once on the list, parents often must regularly reply to “double negative” emails opting to remain waiting or they’ll be dropped.
“I think, ‘What if I didn’t speak English as a first language?’,” she said. “What if I didn’t check that email but somebody set it up for me and told me that I should have it, but I don’t understand English well enough to know what’s being asked of me here?”
“It’s a function of the fact that those organizations themselves are underfunded and overwhelmed,” Eamer said. “[They] aren’t getting the funding they need to do the staffing to get through the wait-lists.”
For Amon, he said it’s sometimes hard to accept the help he’s getting, like his accommodations at school, because it feels like he’s taking the space of someone who might need it more, despite his diagnosis.
One teacher runs the entire SAL program at his school, putting a limit on the number of students who can participate, according to Amon.
“For me, I kind of have this mentality that it’s kind of damaging to me just because so many people tell me that I’m just faking it or I’m lying,” he said. “I kind of have the boy who cried wolf mentality. I feel like sometimes I’m lying, even though I can tell physically I’m not. But no one else can.”
Amon said he just wants people to be more aware of invisible disabilities and more understanding. And more understanding might make it easier for people with invisible disabilities to get the support they need.
“Even if you can’t see it, other people are always struggling,” he said. “And I think we all need to acknowledge that we are not the only person who experiences pain, sadness, things like that.
“And we need to ask people what their experience is and not accuse them of not telling the truth.”