A place for Andrew
He is exceptional in many ways, but Andrew’s disability will make it difficult for him to access postsecondary education. Where does he fit in?
Photo: Remi Thériault
As Andrew’s 18th birthday approached, the application deadline loomed. There were the in-person appointments to schedule, forms to fill out and documentation to gather. We made it, with two days to spare. A month or so later the good news arrived: he’d been accepted.
No, it wasn’t by Guelph or Queen’s or Brock. It was by the Ontario Disability Support Program, which will provide about $800-a-month assistance once he turns 18, and a few hundred more if he lives on his own. The college or university issue won’t arise for another few years – he’s not setting any speed records in high school. Still, last year he passed the Ontario literacy test, unlike almost 50 percent of other so-called special-needs kids. Currently he’s taking 20th-century Canadian history and can vividly describe World War I trench warfare. Before the American election, unprompted, he cogently explained why he would vote for Barack Obama if he lived in the States, and why he thought the Republicans were “lame.” He has other strengths, too: he’s been playing guitar since he was 12 (actually three – an electric, a bass and a 12-string acoustic), and far from being a lonely outsider, he has a posse largely made up of “normal” kids, including the ones in his band. In most respects, including age-appropriate obnoxiousness, he’s indistinguishable from his pals.
Andrew’s disability is not the kind we tend to think of when we hear the word in the postsecondary environment, largely because we don’t encounter it there. He’s not in a wheelchair or hard of hearing; he doesn’t have the kind of information-processing problem that can be accommodated simply by additional time for tests. His fetal alcohol syndrome, or FAS, which translates to permanent brain damage, is the result of his mom’s drinking during her pregnancy.
When he was 16 months old, Children’s Aid intervened and he’s been with me, his step-grandmother, ever since, although for simplicity’s sake, I usually just refer to him as “my kid.” His deficits include almost non-existent organization skills – his teachers know by now not to send any important notices home with him because they’re bound to dematerialize long before they get to me. His handwriting is that of a 10-year-old. Give him more than two or three instructions at a time, written or oral, and you can almost hear the brain circuits shorting out.
However, Andrew is exceptional in more ways than the provincial public school system recognizes (there are 12 categories of “exceptionality” in Ontario, including behaviour, learning disability, mild intellectual disability and giftedness; Andrew’s slot is learning disability, or LD). If he were like many teens with FAS, by now he would have dropped out of school, perhaps be living on the streets, even be in the slammer.
That’s the story of most of the children whose parents attend the FAS support group to which I belong. Instead, Andrew hardly ever misses school, where he takes most courses in regular classrooms but returns to a special home room, for about 10 teens, that’s staffed by a teacher, a youth worker and, one day a week, a psychiatrist. There he gets the support that allows him to complete assignments and study for tests. Last year, when I asked him whether he thought he wanted to complete school, he responded with a withering teenage riposte: “Well, duh. Otherwise, what’s the point?”
Good question. Another is, what is the point of advanced education for him and other kids with intellectual disabilities? Don’t they belong in sheltered workshops or what used to be called “opportunity classes” when I was in high school? (Two years of hairdressing and short-order cooking for the girls, auto repair for the boys.)
Not according to Harvey Weingarten, president of the University of Calgary, which in 1992 was the second university in Canada – the first being the University of Alberta, in 1987 – to fully integrate students with intellectual disabilities.
“It’s important that as many people who can benefit from postsecondary have the opportunity,” he has said. “Our job is to give our students, all of our students, as many opportunities to prepare themselves for the world ahead.”
Twenty years ago, Bruce Uditsky, now chief executive of the Alberta Association for Community Living, and consultant Bruce Kappel elaborated on this point. Among the benefits of inclusive postsecondary policies, they listed “improved opportunities to secure employment” and “preparation for challenges within the larger community.”
The biggest hurdle for Andrew and his cohort, though, is finding someplace to be challenged at.
I started my search at Ryerson University, where I teach, since immediate family members can attend free of charge. The director of the Access Centre,
Tanya Lewis is clearly supportive of the inclusivity model, and was encouraging when I outlined the kinds of supports Andrew needs to learn. A tutor? Check. Extended time for test taking? Check. Modified assignment instructions to compensate for his trouble with receptive language? No problem. No big classes? That might be an issue, but there could be a way around it.
My optimism faded considerably when I talked to the registrar. “Being a student at Ryerson involves certain things,” Keith Alnwick said dampeningly. “Are students capable of doing what is required of students?”
And of course the first thing required of students is to get in, which, under the regular enrolment process, Andrew would not, given his scatter of credits across applied, college and university levels. What about future planning regarding broadened inclusion? “There’s no initiative at the present time,” Mr. Alnwick said. Just to make his point clear, he added, “It has not reached an action level for us.”
It may be about to. Fran Marinic-Jaffer describes herself as engaged in removing “massive roadblocks” for her 21-year-old son, Ashif, who has Down syndrome. An Ontario Scholar, he attended York University’s Glendon campus, starting in 2006. For reasons that may ultimately be illuminated via a lawsuit launched by Ashif, the university failed to provide the accommodations that were available to other students: a note-taker, a tutor to help him retrieve information, extended time for exams. (A university spokesperson’s 2006 comments about “maintaining the integrity of degrees” hint at the issue from York’s perspective.) Now Ashif is applying to Ryerson.
He is clear about his motivation with regard to the suit: “I need to stand up for my rights as a person.” His mother is too: “We live in an extremely deceptive environment about tolerance. We’re talking about visual discrimination and we’re talking about barriers. Because there is that horrific assumption that a person with this genetic disposition is not a functioning member of society.” Championing her son’s and others’ rights to inclusive education has led her to do doctoral studies at the Ontario Institute for Studies in Education at the University of Toronto (where she was about to defend her thesis in late 2008). Now she’s planning to apply to law school.
Feisty doesn’t come close to describing Ms. Marinic-Jaffer. She relates how York suggested Ashif just audit courses and describes her response. “I told them, ‘You can kiss my ass,’” she says, relishing every syllable. She’s the epitome of what Melanie Panitch, director of Ryerson’s school of disabilities studies, calls “accidental activists” – mothers who, because of a child’s disability, have been drawn into struggles with institutions and agencies, in the process improving conditions for other children as well as their own.
Dr. Panitch has been an activist in her own right. In 1984, when she was working at Toronto’s Humber College, she supported a father’s request that his intellectually challenged son be allowed to attend the school. With the assistance of the Community Integration through Cooperative Education program, or CICE, a pilot project was launched. Today, Humber admits 18 students annually to its two-year certificate course, and three other Ontario community colleges – Lambton College, Sault College and, most recently, Durham College – have established similar undertakings.
Is one of these the place for Andrew? As he would say in a non-scatological moment, “Not even.” Unfortunately, I think he’s right.
I was buoyed when first I talked with Rosanna Tothe, coordinator of Humber’s CICE operation. Her school’s music program has an excellent reputation, and I visualized my kid being able to be part of it. Then she mentioned that the average intellectual age of the CICE participants is Grade 1 or 2. I was reminded of my search a few years ago for an appropriate high school for Andrew. One visit was to an MID – mild intellectual disability – class. Depending on what definition you use, MID can mean an IQ of 70 to 75 or lower. Andrew tested at 76 the last time he was assessed, although everyone believes he’s higher on the scale. Even looking at the dozen or so students – all boys – it was apparent this was not the place for my style-conscious, two-earringed, rock-star-wannabe kid.
Nor are the excellent programs at 19 universities and colleges in Alberta (see "Alberta can't meet demand from disabled" below). That is, even if he could get in, which would first entail his living there for at least three months and also qualifying for individualized funding from the provincial Persons with Developmental Disabilities program before even being able to compete for one of the 85 or so slots available annually. Besides, literature about this worthy endeavour features tales of young adults initially afraid to cross the road by themselves who become markedly more independent. Independence for my kid, who has been getting to school by Toronto public transit since Grade 6, is planning a winter trip to Mexico with some of his pals.
I also get a little queasy when good-hearted peer-support students say of their charges things like, “Never seen him in a bad mood. Just waiting for the next chance to smile,” or “I have learned about pure enjoyment of life. … Everyone strives for it and he is that guy.” Andrew, I’m sorry to report, is not that guy.
Back in the 1970s, a bright young man was accepted in a master’s program at the U of T’s St. George campus. The only impediment to his attending was that he wore heavy braces and used a cane to walk. His classes were located all over the 100-plus acres, and while he was given permission to park in any school lot, there was no guarantee there would be a spot close to where he was headed. Did anyone consider creating special parking places for disabled students and staff? Such an idea had not reached an action level at the institution in question. While this lack of imagination may have altered David Onley’s career path, it didn’t blight it. Today, he’s the lieutenant-governor of Ontario.
Thirty-odd years later, the notion of such obstinacy seems positively Victorian. Thirty years hence I believe we’ll think the same way about genuinely inclusive postsecondary opportunities for the Andrews among us. Meanwhile, I wonder whether he’ll ever have the chance to submit that kind of application.
Lynn Cunningham is a professor in the school of journalism at Ryerson University.
Alberta can’t meet demand from disabled
In Alberta, 19 colleges and universities accept students who traditionally would not be admitted because of intellectual challenges, making it the world leader in terms of the number of participating institutions. Among the institutions involved are the universities of Calgary and Alberta, as well as Grant MacEwan, Mount Royal, Red Deer, and Lethbridge community colleges and Northern Alberta Institute of Technology. These days, unlike two decades ago when the initiative began, the province’s postsecondary schools are virtually lining up to participate, says Bruce Uditsky, chief executive of the Alberta Association for Community Living.
Admission is by interview rather than the usual process. Once accepted, students pay tuition, are eligible for all services available to other students, attend regular classes as auditors and participate as fully as they are able, with the assistance of volunteer peer mentors. Professors modify their course materials if necessary to accommodate students’ needs. The course of study parallels that of other students and generally lasts for the same length of time. At the end of their studies they receive a certificate of completion.
Attending university or college is a “culturally normative pathway to adulthood” that “allows young people to mature within the context of a learning environment,” write Mr. Uditsky and Anne Hughson, a professor of community health sciences at the University of Calgary, in a paper about postsecondary education for people with developmental disabilities (“A Promising Path to an Inclusive Life” (PDF)).
Robin Swift, in her 2001 master’s thesis on inclusive postsecondary education, interviewed a number of students with intellectual disabilities attending Alberta schools. One was “Simon,” then a 22-year-old in his fourth year at U of C, who told Ms. Swift, “In order to grow, we have to stretch our comfort zones and that means you have to try new things.”
Although the majority of Alberta postsecondary programs are receptive to trying the new idea of inclusion, only a small number of Simons get to experience that kind of stretch. One of the selling points of the “Alberta model” is the limited impact special-needs students will have, so each institution accepts only a handful at a time – two or three to perhaps nine or 10 at the most, says Mr. Uditsky.