Invisible Disabilities

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The divide between our conceptions of access and success

By Rachel Braeuer
Photos by Mark Burnham

If you can read this, consider yourself lucky. Jeffrey Moore couldn’t have when he was eight years old. Finn Long is just four years old, but it’s doubtful he could read it out loud to you, even if he had the ability to read. What these two have in common is that both experienced barriers to learning, and sadly they seem to be representative of BC’s education systems. At SFU, we talk a lot about engagement, but how engaged can we possibly be if intelligent and capable people from our communities face such a host of barriers to access this so-called “public education”?

The logical first step to getting into university is getting your high school diploma, but cases like Moore and Long’s are emblematic of how difficult that can be. Moore’s parents were told 17 years ago that his North Vancouver elementary school wouldn’t be able to support his needs. Instead, the school suggested he go to a private school, paid for entirely out of pocket. Long was diagnosed with autism and waited 920 days for treatment in Surrey, a city that supposedly has a “no wait list policy.”

He is four years old and he still can’t speak, but videos of him show that he’s a happy and intelligent little boy. Despite the money the government claims to be throwing at services, stories like Long’s and Moore’s let us infer that these efforts are not working. In theory, the adequate support for kids who experience barriers to learning is there; in praxis, however, this is often not the case. More importantly, do you want the diagnosis — and the stigma that comes with it — that is necessary in order to access this extra support?

Elementary and Secondary School
There is a distinct difference between the kind of support that elementary and secondary schools must provide for students with a legitimate disability, and that found in post-secondary school — the difference of a right versus a privilege. Despite the various forms of funding that are made available to students, post-secondary as a whole is still legally a privilege in Canada whereas a grade 12 education is a right. This legal difference affects the way the education system must operate to address the different needs of students with disabilities, and is part of the reason the Individualized Education Plan (IEP) exists.

Where the focus in postsecondary becomes providing disabled students with the resources to equally access an education, primary and secondary institutions work around success-based mandates.

An IEP acknowledges that not all students can define success in the same way. In theory, a team of teachers, support workers, counsellors, and family would work together to define what success means for that individual and then proceed based on that plan, rather than on the general standards set out by the ministry. The good news is that students who might have otherwise failed are now able to succeed on a scale that is fair to them. The bad news is that this scale can’t always translate into the qualifications necessary for achieving a grade 12-equivalency diploma; while some students may graduate, they do not graduate with the same credentials as everyone else.

The counter argument is that without the IEPs, these students probably wouldn’t have succeeded to the degree that they had. While this may be true, questions over the effectiveness of IEPs in general abound. Tiffany Lodoen has a Master’s degree in counseling and has worked in the Alberta school system, both in the public and private sectors. While completing her undergraduate degree in education, she recalls having only one class on how to write an IPP [Alberta’s IEP], and this class was so large that her professor made writing one IPP into a group project. To her surprise, after becoming a teacher, she was responsible for completing nine IPPs by herself in her first month of teaching, something that her education had left her wanting.

This isn’t to say that individual- based assessment programs don’t work. “I have seen the IPP program work extremely well with children who have very high needs,” says Lodoen. “[But only] when implemented by teachers who know how to set appropriate goals, how to measure those goals, and who are able to access the resources needed to set the child up for success.” Emphasis here needs to be placed on providing teachers with the resources necessary to implement these plans.

After completing her BA and PDP at UBC, Joanna Martinez went on to do her practicum in a classroom containing five ESL students, one extreme student, two students with ADHD/ADD, and two unlabelled students. She was not provided with an educational assistant (EA) because the one extreme student had not been labelled extreme enough. Unfortunately, there were no job openings available for her in the public system upon her completion. Instead, she took her current position as the director of education at a local Sylvan Learning Centre. “Students with learning disabilities can learn to work around that disability in a lot of circumstances, and be just as successful as a ‘normal’ student,” she says of her experience.

She feels that, when it comes down to it, the question is one of providing alternatives and ample resources. Martinez is not the only educator hesitating to label ability levels in the name of acquiring funding and resources. In fact, there is a movement in the education field towards response to intervention (RTI)— a theory that seeks to provide a host of resources to struggling students before finding a diagnosis, rather than relying on a diagnosis.

This theory moves away from the medicalization of disabilities and towards the normalization of them; not surprisingly, it has proven wildly successful in all available test data. However, in a system so poorly funded that it can’t afford to hire welltrained teachers — and that informs parents of children with disabilities they’d be better off footing the bill for themselves — it’s questionable whether students would really be given fair access to the resources they might require.

Post-Secondary
Many students have had to simply deal with their disabilities, regardless of IEP’s or RTI’s. “[My dyslexia] was never diagnosed and I never got tested because I wasn’t disruptive in class,” says Douglas College student Jenelle Davies. “They just thought I was lazy.” When she got to university, she attempted to go about the process of getting help from the disabilities centre on campus.

The response she got was less than helpful. “Since I was never formally diagnosed in high school, the college said I needed to pay $2,000 to a psychologist to do all the testing,” she remembers. Until then she could receive no formal assistance, and while they did indicate that they could try to reimburse her the fee paid, there was no 100 per cent guarantee they would be able to.

Kate M. has dropped out of university twice now, and only discovered she had a learning disability a year after leaving the second time. “The first time, I dropped out because forcing myself to write papers made me incapable of sleeping for two weeks,” she says. The second time she was physicaly unable to sit still for the length of the class. She quipped that she didn’t even consider that ADHD could have been a cause — and why would she? She otherwise achieved well, and her professors were usually good about giving her extensions. What was shocking, however, was that Kate wasn’t aware that her university even had a disabilities centre or that there were services available to people like her.

Disabilities at SFU
How does a university’s disabilities centre work, then? If there is a move away from labeling at the primary and secondary levels, then why would education at the tertiary level require a doctor’s note of sorts to access its resources? It comes down to legal definitions and responsibilities on the school’s behalf. “The reality is that there is a Charter of Rights and Freedoms, there are rights and there are university policies,” explains Mitchell Stoddard, director of SFU’s Centre for Students with Disabilities. “[In this document], there are protected classes of individuals, of which disabilities is one.” Institutions like SFU need to ensure that there is no discrimination against these individuals; groups within the institution like the centre ensure that these legal requirements are met.

Moreover, without these documents, the centre wouldn’t have the authority to give students with disabilities any resources. The legal position of those with disabilities as a “classified group of individuals” means that the centre must first have some form of vetted documentation before they can offer any assistance. SFU, like all Canadian universities, is working on an access-based mandate. Because universities focus on access rather than success, the responsibility to prove need is placed on the individual and not the school; once need is established, however, it becomes the university’s responsibility to accommodate them however possible.

Once the legal threshold is surpassed, the centre can and does provide a fantastic array of confidential services to students, including granting extra time to write exams or the ability to write exams away from peers, note-taking services, and providing alternatively formatted learning materials. The centre also acknowledges the effects of mental health on academic success, offering services to those with certain anxiety disorders, depression, and a myriad of other mental health impairments.

Individuals don’t have to have a diagnosed disability to come in and see someone at the centre. “[University is a] common time for people to first experience mental health problems,” says Stoddard. He goes on to explain that the rites of passage associated with coming to university can trigger previously dormant mental health issues. Anyone who is experiencing difficulties with their education at SFU that they hadn’t before should consider making use of SFU’s resources. “A student can approach us to talk about their condition or their concerns, and we’re not going to be reporting to anyone who they are,” Stoddard assures. “We don’t inform other bodies within the institution of whether or not someone is registered with us. Students need to know we’re a confidential service to the degree possible.”

While the process of getting diagnosed with a disability may seem costly and daunting, the benefits of being identified with this classified group seem to outweigh the cons. Logistically, what is a large fee for the individual translates into a much larger cost for the institution, something that SFU — unlike many other institutions — is actually willing to invest in.

Conclusion
There is a dissonance between institutional mandates regarding disabilities and education that confuses this issue. While the necessity to label and diagnose is often expensive and cumbersome, without naming these groups, we cannot grant them specific protected rights. Revisiting the notion of tertiary education as a right and not a privilege might offer a source of unity for the two educational sectors.

That fact that families like the Moores and the Longs are receiving attention for their struggles with disabilities is indicative of the positive shifts that seem to be occurring in terms of the growing acceptance and support of disabilities in a wide context. In terms of education, it is clear that the systems we currently have in place have a long way to go before they can be considered wholly beneficial to the groups that make use of them. We can only hope that a more informed public will bring greater support for initiatives like RTI that would give young students in Canada more opportunities to grow.

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