Choosing Not to Disclose a Diagnosis is Not Giving in to Shame

So in my last post, I talked about my friend Navi who successfully challenged the documentation requirements to acquire academic accommodations for Mental Health at York University. She won that fight and has been receiving some media interest as a result. In my last post I did two things. I clarified some of the common misconceptions I was noticing in commentary around the media stories. I also criticized some of the media handling around asking questions about accommodations that reinforce prejudice.

Unfortunately one of the side effects of disability self-advocacy is that it inevitably comes along with backlash. As I was preparing that last post, it had already started but mostly consisted of comment trolls and the ill conceived and likely unintentionally poor interview questions. No sooner had I published it however, I became aware of this opinion piece by Heather Mallick in the Toronto Star. It can best be described as utterly ignorant and hateful.

Some of the article is genuinely incomprehensible with lines like

I myself dislike “disability,” especially in reference to temporary states of young people away from home, but I won’t harp.

Up until the word disability, I can follow, I disagree but I understand the words everything after that is word vomit. Is she saying that students away from home will fake disability because we are needy whiny millennials? No, but seriously, I’m not sure. Someone please explain it to me.

She also fails to fully seem to understand that just because a diagnosis is no longer required, doesn’t mean that medical documentation is also now optional. It’s not, you still definitely need it. So this idea that stressed out dishonest students will be flooding university accommodation offices, says a lot more about the author’s lack of faith in the medical profession than it with this hypothetical horde of fakers waiting in the wings to scam the system (please see my previously linked post for reasons why accommodations don’t necessarily benefit people who don’t need them).

She also shows a complete lack of understanding of how disabilities and the needs associated with them manifest themselves. She says, specifically regarding Navi and her request for a quiet separate exam space,

This puzzles me. Exam rooms are silent. And what if her smaller room became claustrophobic? Hard to predict. With each year, the smaller room will become more crowded. Perhaps exams could be written outdoors in the quad. No, grass allergies. Really? Prove it. Don’t have to.

Just to again reiterate, people still need medical documentation in order to be accommodated. Mallick also seems unaware that the policy changes that she is criticizing only apply to psychiatric diagnoses. So someone seeking accommodation for a grass allergy would still have to identify it.

The bigger point here is however that just because someone has one symptom that requires them to write an exam separately would mean that they are also claustrophobic. An argument which makes as little sense as Mallick’s choice to cite the satrical website The Onion. Let’s just pause to let that sink in. She cited THE ONION!

The article she referenced was mocking the over sensitivity of young people. Making it clear that she believes that Navi is lying and her desire to keep her diagnosis private is a cover for those lies. Her real beef appears to be with imaginary whiny youths who are out to get benefits that they aren’t entitled to.

She however cloaks this in pseudo-activism, claiming that keeping diagnoses private is to fall back into supporting stigma and shame. In a weak attempt to support her argument that mandatory openness lowers stigma she references the existence of the Bell “Let’s Talk” Campaign. She just mentions it but fails to elaborate how it proves her point or is even applicable in this situation. Keep in mind that Bell is a media company and not a Mental Health Organization.

She also advocates for an openness about diagnosis that has never been required of students, arguing that students should disclose to their professors. Disclosure has only ever been required to Disability Services. Students are then given certified letters which contain no medical information to take to faculty. This is done precisely because there is an understanding that an ignorant professor might be prejudicial if they have preconceived ideas about a specific condition. Yet, Mallick says,

The legal requirement that a stigmatizing diagnosis be a secret from helpful universities smells of mould and asylums.

In fact, professors may make bad guesses about what ails a student — humans are like that — and that doesn’t help build an intellectual bridge.

Again I clarify. This policy change does not forbid anyone from disclosing. They are welcome to if they choose. It simply removes the requirement that they do. Yet Mallick expects students to submit to and cater to their professors ignorance. Something they have not been required to do before the shift.

Even though I know she doesn’t deserve it, I am now going to give Heather Mallick the benefit of the doubt and explain why having the choice not to disclose a diagnosis is so important.

  1. Despite the existence of campaigns like “Let’s Talk” stigma is still rampant and people should have the choice to minimize the likelihood that they will experience it.
  2. Psychiatric diagnoses often come with a laundry list of possible symptoms, which are not all applicable to every person given a particular label. Withholding a diagnosis forces disability services to deal with the individual, rather than slotting them into a box based on a textbook definition.
  3. Yes even trained professionals who work with disabled people are not immune to stereotyping. Taking the focus away from the diagnosis can help negate that. Remember a medical professional has already signed off on the accommodations. They are not and should not be subject to secondary approval just because a counselor knows a thing or two about a certain condition. People are more complex than a DSM list of symptoms.
  4. Some people don’t like the association with labels. This should not be mistaken as evidence of shame or denial of difference but rather a rejection of the medicalized way they are viewed. They may share or “Talk” a Bell would have them do about their experiences in a less pathologized way.
  5. It’s about choice and respect. People should have control over their medical information. As Navi said in her interview with Matt Galloway. She just wants the same treatment in university that she would get in the workplace where again diagnosis disclosure is not required.

I’m sure there are many more reasons to respect privacy and I invite people to share them in the comments.

Ultimately, the determination of what lowers stigma and betters the lives of disabled people should not come from newspaper columnists but from the people who have affected by that stigma.


So You’ve Made Progress in Expanding Rights to Academic Accommodation…But Do You Really Deserve It?

It is the day of my final exam, I have figured out the location for my alternate exam space. I show up early and wait for my invigilator. It is 15 minutes before the exam. 45 minutes later, they have yet to arrive. 5 minutes after that, the invigilator finally shows up, they’ve forgotten to pick up my exam from the department. I start my exam an hour late.

At a different exam, I sit in a small conference room across from my invigilator. I am concentrating on my exam. Across the table, the invigilator opens and starts eating a bag of chips. The bag crinkles, there are audible chewing noises. I try and focus on my exam.

I am writing a geology exam with two other students in an alternate space. We are seated at the same table as we have to share a single set of mineral samples. About half an hour into the exam we realize that we are missing a needed sample. Our invigilator is M.I.A.

These are just three of my experiences taking alternate exams during my undergraduate degree. They are pretty representative of my overall experience of not taking exams with the rest of the class. Sometimes getting academic accommodation is a catch-22, particular if you are writing exams separately.

This however does not diminish the importance of being able to access academic accommodations if you need them, however the process of getting them is daunting and the delivery often spotty.

This is why the new changes around accommodations for mental health disability at York University are so important.

York University PhD student Navi Dhanota (full disclosure: she’s a friend of mine) just completed a two year human rights complaint against York’s Counseling and Disability Services to be able to access academic accommodations without having to disclose a specific DSM diagnosis.

The policy change has been getting media attention in Toronto which in turn has garnered public comment (yes I know “never read the comment”). some of the comments indicate a lack of understanding of, the policy change, what it entails and how it came about.

  1. York University is far from the only university that has policies that require students to provide a DSM diagnosis or psychiatric label to qualify for accommodations. (though hopefully the shift at York will spark change at other universities)
  2. York is not the first university Navi has experienced this policy. However, York is the only university where she sought change through the Human Rights Code.
  3. The change in policy does not mean that people can simply self-identify as having need for accommodation. They still need medical documentation of need for accommodation but the specifics of the diagnosis can be kept confidential between the student and their physician. So the people complaining that fakers will be coming out of the woodwork can shut-up already.
  4. This policy change only applies to students seeking accommodation for psychiatric diagnosis. Students seeking accommodations for physical disabilities, learning disabilities and chronic illness must still provide specific diagnosis to receive accommodation. No that isn’t fair and it remains to be seen if it will require another Human Rights complaint to fix that disparity or if York will be proactive in fixing it without outside intervention.

Now we move on to why I shared those awkward and unfortunate alternate exam stories because I’m going to address the trolls. The people who have been using this as an opportunity to rail against the existence of accommodations in general. The most common complaint being “No one likes writing exams in packed gymnasiums and everyone would probably benefit from not having to do that”.

Normally, I wouldn’t spend taking them on but their sentiments were echoed by CBC As It Happens radio host Carol Off in an interview with Navi. The interview is only 6 1/2 minutes and Off waits until the very end of the interview to throw out the “but everyone hates gymnasium exams” comment right at the end, effectively making Navi defend the entire structure of academic accommodations in less than a minute. An impossible feat, though Navi managed to remain calm under the ridiculous expectation.

By bringing up this question Carol Off legitimized (though by no means invented) the public skepticism that exists any time a disabled person gets an accommodation. By providing so little time to the discussion, she all but guaranteed that the defense would be weak and therefor actively undermined the validity of the system.

I am going to take some time now to address some of these issues. I will touch on the importance of accommodations and the varying arguments around how they are distributed but I am going to primarily look at why the question from Off and the internet trolls is harmful and reinforces prejudice against disabled people. It’s the cousin of the “but what about the fakers?” Argument that has been rampant in the online comments about this story.

First let’s look at accommodations and the differing views around them. They range from the current and most common system (I’ve personally navigated accommodation bureaucracies at three Canadian universities). This system involves offering the bare minimum legally required with as many safeguards (extensive documentation and medical practitioner involvement) possible. The fear of the faker or system abuser is so high that many universities require a physician to sign off on each and every accommodation even when the condition or diagnosis has been disclosed and medically confirmed. Even if the accommodation is extremely common or universally needed by people with that condition. There is no good faith. The assumption is always that people are lying about their needs unless it is corroborated by a doctor.

Some disability activists advocate for a radical shift in the disbursement of services which addresses the mentality of “but we all hate gymnasium exams”. They argue that everyone should have access to accommodations regardless of disability status. Functionally this is untenable in a lot of ways particularly in terms of offering everyone alternate exam spaces. It also ignores that not everyone would benefit from certain accommodations and may actually find them detrimental.

Consider the accommodation of having a note taker. While people’s reaction to my utilizing a note taker during my undergraduate degree generally boiled down to “well everyone would do better if they didn’t have to take notes”. In reality this is more a knee jerk reaction to someone getting different treatment rather than better treatment. Studies actually show that when students take notes they tend to do better than if they don’t, even if notes are provided to them. So no, not everyone actually benefits from a note taker. It might actually harm academic outcomes for most people. My inability to take notes puts me at a disadvantage which is partially rectified by being able to have them provided for me. I will never be able to benefit from the academic advantage of taking my own notes.

There are accommodations that I would love to see universalized like access to speech to text software and good text to speech software. As it stands, the first is not an accommodation, it can be used by everyone at their own expense. In the case of the latter, universities might provide textbooks in alternate formats (something copyright law will bar the universal distribution of) but access to screenreading software is not provided. This software is very expensive so students who require it have to wither pay out of pocket or navigate the maze that is technology grant applications.

Many more people than those who require these programs for reasons of disability and expanding demand an access would likely bring the cost down to more manageable levels.

When people, particularly people with a public platform like Carol Off voice opinions (even in the forms of questions) that boil down to “everyone’s life is hard, why do you deserve different treatment?” it fundamentally erases the reality of disability.

Are there fundamental problems with how universities are run that hurt all students? Yes. But that is a separate issue from the systemic disadvantage experienced by disabled people. The two things should not be conflated. Doing so only further marginalizes disabled students.

At a university level, issues like crowded exams and the large class sizes that contribute to them are issues of under staffing. They can and should be addressed. The thing is even if they were, students with disabilities would still be disadvantaged in universities. Alternate exams exist not only for students who can’t write in gymnasium environments. Even a small exams can be to much for some students.

Accommodations aren’t about catering to a student’s preferences. They exist to rectify actual measurable disadvantages not experienced by other students. Constantly framing the conversation around nondisabled people and what they’re not getting ignores the fact that even though the delivery of post-secondary education is flawed, it was set up with them in mind. Accommodations aren’t perks or extras. They exist to level the playing field. To alleviate a structural imbalance.

Getting people to this understanding is crucial to help start alleviating some of the frankly overwhelming discrimination and prejudice, disabled students experience from their nondisabled peers and the university as a whole.

If the sheer rage that some people express when accommodations for disability are mentioned is any indication, people seem to view accommodations as this Utopian land of privilege. It is in reality far more often a quagmire of hurdles and stigma.

My general experience with accessing accommodations has been one where the response often feels like “ugh, I guess I’ll do this, if I have to”, that is if a professor doesn’t ignore you outright (see here for more information on that).

Add to that, the fact that accessing accommodations beyond the complex bureaucratic requirements for extensive documentation is deeply stigmatized. It is shrouded in secrecy and students are often made to feel guilty or ashamed for utilizing them.

After a classmate discovered I had a note taker (a service that is supposed to be confidential but is often not), I was told that I shouldn’t be allowed in university.

Without giving the full story about academic accommodations and their function, it is irresponsible to then question their validity more so when the respondent isn’t given adequate time to respond and has their argument be artificially weakened by the circumstances of the question. This legitimizes the already existing stigma.

As mentioned above, academic accommodations are often delivered in a piecemeal and less than respectful manner. The system is already flawed enough without adding to the existing skepticism we recipients face not only from the universities that deliver those services but from our peers as well.

When the Real Life Murder of a Disabled Child Was Used as a Moral Dilemma in a University Class

Being disabled in academia can be difficult. Not just in terms of access to physical and academic supports but also in terms of the disability is presented in academic discourse. The social environment of universities can be toxic for disabled students and academics. So much so that some people feel that they have to leave. It is bad enough that we have to navigate and fight for accommodations. We shouldn’t be faced with bigotry in the classroom.

It is not entirely surprising that issues of disability are coming up in academia, I mean disabled people have existed as song as the rest of humanity. What is unfortunate is how disability is framed when it does come up and how poor representations are not questioned or contextualized.

Writer s.e smith (name left uncapitalized in line with author’s preference) wrote an article about why disabled people leave academia. In it ou profiles a woman who fought through the bureaucratic quagmire necessary for accommodations. She railed against but ultimately put up with issues in physical accessibility. It was not until she faced a professor who refused to contextualize a discussion of how disability is used as a metaphor for evil throughout literature, that she finally had enough.

Now it cannot be argued that disability has been used as a metaphor for evil throughout literature and media generally, and so it is a valid topic of discussion. It should however be questioned and contextualized in terms of the social position of disabled people. Disabled people are real and are not a metaphorical construct and any time a group of people are used to symbolize something, particularly something negative, people should absolutely ask, why? Failure to do that gives a historical and continuing trend of marginalizing disabled people legitimacy.

I have found myself in a classroom environment where negative feelings about disability were not only discussed but tacitly encouraged. It was during my undergrad and I was taking Political Science 100. At the beginning of the semester as I was perusing the syllabus and noticed the the Latimer trial was going to be discussed, I got worried. I read the associated reading and my worse fears were confirmed. The class was going to discuss the Latimer trial. A case involving the murder of a disabled child at the hands of her father, with only a biased news article as context.

First off I’ll start with the history of the Latimer case.

I was still a young child when Tracy Latimer was killed but the news coverage was so overwhelming that I couldn’t help but be aware of it.

In October of 1993, Robert Latimer (a Saskatchewan farmer) killed his twelve year old daughter Tracy, I was aware of the situation as soon as it hit the news. At the time I was to young to understand the nuances of the case but I was aware that Robert Latimer had killed Tracy because he claimed she suffered greatly from her cerebral palsy.

This concept troubled me as I saw a lot of similarities between myself and Tracy. I too lived in Saskatchewan and I also had cerebral palsy. I was aware of the basic differences as well. I knew Tracy had used a wheelchair and couldn’t speak but for me the connections were stronger than our differences.

It was the initial crime that unsettled me at first but as the trial progressed and the subsequent reporting on it through the years, the most disturbing thing about the case sadly is not that a child was murdered by her father but that he has gained almost folk hero status in Canada for his actions. People readily believed and continue to believe his assertion that he killed Tracy because he wanted to end her suffering. This narrative is so widely believed that though he was convicted of murder, people still defend his actions and Latimer himself has firmly positioned himself within Canada’s assisted suicide debate, which though his actions would still be illegal under our recently relaxed restrictions on assisted suicide, his presence in the debate gives him legitimacy.

When the Latimer trial is covered in the news and it still is even 22 years later, Tracy is almost always reduced to a non-being who was just a thing that was alive and suffering. Her father is almost always framed as a loving father who killed his daughter out of necessity to relieve her suffering.

That narrative did not ultimately sway the court (after a mistrial, retrial and his sentence being debated all the way to the supreme court). He was convicted of murder. However, in the court of public opinion, he is very much the victim of a miscarriage of justice.

This narrative however does Tracy a disservice, it entirely dehumanizes her and if you look past the lazy journalism it isn’t all that difficult to find holes.

Things that don’t generally enter the public discourse

  • Laura Latimer’s (Tracy’s mother) own records refute the idea that Tracy had no quality of life. She described how Tracy was socially included in the family and clearly enjoyed this social engagement.
  • Robert Latimer refused to allow Tracy to have a feeding tube despite the fact that Tracy had difficulty eating, was malnourished. and a feeding tube might have allowed for more effective pain management.
  • Robert Latimer had a phobia of medical intervention. It is not hard to see how this fear might have influenced his perception of his daughter’s life.*

I was aware of the more contextualized reality of the Latimer case and was more than a little concerned about how the the class would approach the case or why it was being presented at all. I contacted the professor with my concerns and provided sources that gave the case more context. She rejected my concerns and refused to provide the class with more context. She claimed that nothing negative would come of the limited view of the case being presented.

In reality on the day that the Latimer case was presented in class, I was surrounded by ableist sentiments that deviated from the specific Latimer case. Comments were general “well of course people like that would want to die” “If I was like that I would want to die”

I tried to give context in discussion and explain that disabled people do not as a group universally want to die and that many of us are perfectly happy with our lives. Even disabled people with conditions considered severe. I was roundly ignored and accused of having an unhealthy bias.

Turns out the professor not only believes the miscarriage of justice narrative of the Latimer trial but intended it to show that just because the outcome of the trial was in line with the law that it was not just.

To this day I regret not filing an official complaint over the class. Not because she holds a differing opinion from me but because she created an entirely toxic and unsafe environment in her classroom.

I also know that she is not alone in using the Latimer trial in this way. I have at least one other disabled friend who found herself in a similar classroom experience. The discussion just as bad. In her case however when she brought her concerns to the professor, he apologized and tried to contextualize the conversation in the next class.

The willingness to frame the disabled experience through the Latimer case is problematic outside of the harm it does to individual disabled people who happen to be in those classes because it happens when we aren’t there to try and defend ourselves as well.

This came into sharp focus for me one day on Facebook when I was trying to explain why many disabled people have issues with bioethicist Peter Singer (who has argued that disabled children should be euthenized or that disabled people should be denied health care). An acquaintance mentioned the Latimer case as a defense of why killing disabled people without their consent might in certain circumstances be acceptable. He presented it as a given, that it was right to kill Tracy. That mentioning the case was enough of an argument in itself. When I refused to accept such an unnuanced argument he said “well we studied it in one of my Philosophy classes” and my heart sank. I then disabused him of his narrow understanding of the case. He was then forced to defend nonconsensual euthanasia through hypotheticals that had nothing to do with disability “well what if you are in a war and your friend has been gut shot, is going to die and there is no medical treatment available?” kind of scenarios. Things that deviated so far from the original discussion as to be irrelevant to it.

The social atmosphere that universities build for disabled people is just as if not more important than the physical accessibility of the academic space. The key thing here is that this is true whether disabled people are present or not. Considerations of how disabled people are presented in course content and discussion should be considered without a disabled person actually having to be present because eventually those people in those classes will likely be faced with an actual disabled person. Building an inclusive space doesn’t just mean when the marginalized group is present. It means that when they do show up, people won’t have to fight to not be excluded socially or physically.

This does not mean ignoring things like the history of disability in literature or the Latimer trial. Disabled people deserve to have their history and social context be a part of academic discourse. We however don’t deserve to be treated to one sided arguments that devalue our lives and experiences.

*reference: Enns, R. (1999). A voice unheard: The Latimer case and people with disabilities. Halifax, N.S.: Fernwood Pub

How Secret Limitations on Grants for Disabled Students Hurt Us

Being a student with disabilities can be a complicated and expensive endeavor. While university is a financial strain for most students, disabled students often have additional costs associated with either services or equipment that we require to succeed academically. The government does recognize this additional financial burden and has grants in place to offset them.

The problem arises from the fact that the policies and restrictions for these grants are shrouded in mystery and if you can identify them, don’t necessarily mesh with reality.

On the surface the Canadian grant for Special Services and Equipment for Students with Permanent Disabilities seems amazing. It is advertised as offering qualifying students with funding up to $8000.00/academic year for services like tutoring or equipment like computers and adaptive software.

I have benefited from this grant in the past and hoped to access it again as I begin my PhD. Much of what I had received previously is either functionally obsolete after two operating system upgrades makes them no longer compatible with modern computers or just no longer functioning at all. As a result I applied for an updated version of Kurzweil 3000 (mine no longer works properly). If you are unfamiliar with Kurzweil it retails for over $2000.00 CND. It is also invaluable in that it enables me to get through my extensive list of required course readings.

The problem, the grant policies don’t allow for full upgrades of Kurzweil (purchasing an updated copy), only software upgrades (something that isn’t even available). On paper it looks like they understand that software evolves and that students need access to that update except they will only pay for it in a form that doesn’t exist. Effectively making their upgrade policy useless.

The biggest problem here isn’t that the policies are bad. Bad policies can be combated with evidence of their uselessness but that, the policies aren’t readily available to grant applicants. All you know when you apply is that you could be eligible for up to $8000.00/year. All the fine print surrounding cost restrictions and what they will replace is hidden and only available to the people deciding on whether or not you are approved.

I only found out about the restrictions after, I was only approved for a fraction of the funding I had applied for. I call my local student loan office and was met with a wall of statements like “well it is not our policy…” or “we have funding limits on…”

None of this information is available to applicants, you just end up with wrenching disappointment when you are not approved for things you were counting on.

On the National Student Loan Service Centre website, the grant is described like this

If you require exceptional education-related services or equipment, you may be eligible to receive the Canada Student Grant for Services and Equipment for Students with Permanent Disabilities. This grant offers:

  • up to $8,000 per academic year (August 1 to July 31) for each year of studies after high school (including undergraduate and graduate levels), provided you continue to meet the eligibility criteria.

The assistance provided under this grant is determined apart from your assessed need.


You are eligible if you:

  • apply and qualify for student financial assistance (have at least a $1 of assessed need)
  • are in a full-time or part-time program at a designated post-secondary institution
  • meet the criteria for students with permanent disabilities
  • include one of the following with your loan application as proof of your permanent disability: a medical certificate, a psycho-educational assessment, or documents that prove you’ve received federal or provincial permanent disability assistance
  • provide written confirmation that you are in need of exceptional education-related services or equipment from a person qualified to determine such need
  • show, in writing, the exact cost of the equipment and services.

The website for my provincial loans website is even more optimistic. It says that if your needs exceed the $8000.00 limit that you may be eligible for an additional $2000.00 from the province. They then link to the various forms that must be filled out. There is no mention of specific policies or restrictions (even though it’s the government you know they must exist).

You only learn about a policy if you ask for something that goes against it. You’ve already waded into the deep end of bureaucracy through the application process. You got the proof of permanent of disability, the statement of need, and the exact cost of what you need (which you need two quotes for each item, yeah they didn’t mention that on the website either). Now you are met with even more bureaucracy as you try to figure out why you weren’t approved for the full amount. The fact that classes start next week and these things were needed already. You are now faced with the reality that you may not get them at all.

It is hard to fight a system that knows all the rules and only informs you of them piecemeal when you break one.

It isn’t entirely surprising that the Canadian government won’t replace broken or obsolete technology. They are already skeptical  that disability itself can be permanent. I have in my dealings with them had to reprove my permanent disabilities countless times. The government seems to think that people miraculously recover. Forcing disabled people to waste time doing the same thing over and over.

This is best exemplified in this rant by Rick Mercer on benefits for disabled veterans.

It should be noted that in the case of veterans, the Canadian government now believes that miracles only occur every three years and have extended the length between required reproof by veterans to that time frame.

Under this system of miracles it is not difficult to understand that the government does not understand that computers break and that software becomes old and obsolete (or does not upgrade the way they want it to) necessitating repurchase.

Putting those kinds of limitations on disabled students effectively limits or can limit how much education that student can get. If the technology they received during their undergraduate degree is no longer suitable when they reach graduate school, it may affect their ability to continue in school.

Yet available information on this grant only hints at restrictions with phrases like “eligible students may qualify” and focusing on the high amount of the grant and making it seem that the help will continue by saying the money is available each year, giving the impression that you can apply for replacements.

Making the policies available or even summarizing the most common things that come up would go a long way in helping applicants tailor their applications for maximum success.

Keeping them secret makes it seem that the government doesn’t want applications to succeed or make the appeals process to onerous for applicants.

Completely erasing the fine print hurts disabled students while allowing the government to appear to be offering more aid than is actually available.

How University Professors React to Requests for Disability Accommodations

Requiring accommodations in post-secondary education can be complicated to maneuver through. I have had experience with the bureaucracy of asking for accommodation at three separate universities and my experiences have been mixed at all of them.

Most universities in my experience have similar policies around delivering accommodations to disabled students. The process goes like this.

1. Get all the necessary documentation to prove you are disabled and in need of the requested accommodations.

2. Draft a letter to all potential professors outlining your individual needs.

3. Send copies of the letters to potential professors and you.

4. Have you approach professors individually to discuss accommodations and acquire their consent.

5. You and your professor sign the letter indicating that they agree to provide accommodations

6. Send copies of the letter to the academic department and the Accessibility Office.

7. Professors provides all pertinent accommodations to their course.

8. Never follow up with you or the professor fails to submit the letter to the necessary people.

The system is based in the idea that self-advocacy is important for disabled students and this is true to an extent. People need to know not only how to make their needs known but also that it is ok to make those requests. What the system  fails to do is recognize and address the inherent power imbalances at play in accommodation requests. The professor has significantly more power. They control the student’s grade and learning experience so if a needed accommodation is refused, a student might not feel comfortable reporting it. Particularly if the course is required for the student’s degree (unfortunately some required courses are only taught by one person so the option of leaving isn’t available). Even if the student decides to complain, there is no guarantee that the university will address the issue.

So for the benefit of both universities and disabled students I will describe professors in terms of how they respond to accommodation requests (I haven’t experienced them all personally but where applicable I will give personal context and outcome).

The Good

1. The professor who not only accommodates but troubleshoots to make the learning experience a good one.

I had a professor who not only unreservedly provided my needed note taker and made sure the notes were good but also gave me copies of her power points which she did not usually distribute which helped keep the notes in context.

2. The professor who accommodates

These professors happily accommodate as required with no other follow-up.

The Middle-Ground

3. The overzealous professor

I don’t need all my accommodations all the time. Usually indicating that a particular accommodation won’t be necessary for a given glass is sufficient. I one instant though, I had a professor insist that she must not only provide all my accommodations but she also felt they required stricter implementation. I didn’t need a note taker but she insisted that I would have one. Usually a note taker is just another class member who provides copies of their notes either via e-mail or carbon copy. This the professor insisted was not sufficient. She needed to hire me a grad student. Remember this was for an accommodation I didn’t need.

I felt that this would draw unnecessary attention to me so I had the Accessibility Office send her an e-mail confirming that I could in fact decline my accommodations if I saw fit. She calmed down, I Aced the course.

4. The professors who accommodate during the course but fail to make sure that accommodations are available during exams.

I had a class in an auditorium which features only partial desks, with so little space, I couldn’t juggle all my course material with my one good arm. During the semester I was provided a table and chair. I was assured that it would be available for the final exam. It wasn’t and I was forced to choose between writing on the inaccessible desk or delaying everyone while the professor tried to fix the situation at the last moment. I chose the first option and had a very uncomfortable exam experience.

After that I began writing exams separately but even that was problematic as separate exams still need to be supervised. I once had a supervisor be 40 minutes late and when he arrived, he realized that he had forgotten the exam.

These professors are good intentioned but fail to make sure that the accommodations they are responsible for are actually provided.

The Bad

5. The professors who agree to accommodate but have some personal issue with bureaucracy of the university and don’t want to sign and submit the necessary letter.

The scene: I am alone with the professor in the office, my accommodation letter is out and we have discussed my needs

The professor “I have no problem providing these accommodations, I also think that it is unnecessary to tether students to these forms. I don’t think it’s really necessary to fill out the form, make copies and submit them”

Now I’m stuck in an awkward situation, I can agree and move forward hoping that the professor will honour their stated intention to accommodate or insist that they honour the bureaucratic process and leave the impression that I think they’re dishonest. Not a fun situation. I’ve had this happen a couple of times. I never felt comfortable insisting they sign the form, I was lucky in that they did honour their word but it was unnecessarily stressful.

6. The professor who agrees to accommodate but doesn’t like the standard mode of accommodation. They promise to provide the accommodation in an alternate format, they don’t. Or just agrees to accommodate and then doesn’t

I had a professor who for some reason didn’t like the standard note taking procedure of providing the note taker with carbon copy paper (this allowed them to take a single set of notes and provide the professor with the disabled student’s copy right after class). He promised I would get my notes but was vague on how that was going to happen. Turns out he gave the same line to two other students. We had to harass him for 6 weeks (half the semester) before he got us copies of the notes.

7. The professor who suggests that you should repeat the pre-requisite course before continuing.

On the first day of class about 10 minutes before it was supposed to begin, I told a professor that I was disabled and asked if we could set up a time after class to discuss accommodations. The classroom was already mostly full but she pulled me out of the room into the far from empty hallway and proceeded to tell me–with no context of what my needs were–that it would be in my best interests to repeat the pre-requisite class I’d already taken and excelled at. She specifically cited my disability to justify her suggestion.

I sat through the class in shock. After it was over I reported the incident to the Accessibility Office. They said there was nothing they could do and defended her by saying “She probably doesn’t know any better”

I dropped the class.

8. The non-accommodating professor

I have never had a professor refuse to accommodate outright though the last example might count as I didn’t continue with the class it’s hard to tell. I have heard many stories of professors refusing accommodations for a number of reasons like

  • providing the accommodation infringes on their academic freedom
  • they think they know the student’s needs better than the student (refusing to use a microphone for a hard of hearing student because they don’t think it will be a problem in the classroom space)
  • They are concerned about their privacy (refusing to let students audio record lectures)
  • I’m sure there are many others

Universities tend to work on a reporting system so if something goes wrong, students are put in the position of reporting the bad behaviour of people who have power over their academic success. Often the response is to do nothing or fall back on the mantra of “self-advocacy” but effective self-advocy is difficult in a situation with such a huge power imbalance. The situation has to be dire before the university will step in and the first step is usually mediation. As a result many students simply do not report professors who refuse to accommodate out of fear of alienating the person in charge of grading their work.

Self-advocacy works great with people who are receptive to the requests. In cases where there is dissent the power swings in favour of the professor. While this is an issue that is difficult to remedy a good start would be to check in with professors who don’t submit the paperwork as a matter of policy. This way they have to explain themselves without the student having to report an issue. The professor then can’t blame the student for being held accountable.

This doesn’t address all of the issues like professors who submit the paperwork and then don’t follow through but it is a start. To fix the other issues there needs to be a real cultural shift in academia that normalizes the reality of people who learn differently.

Why I am Trying to CrowdFund my PhD in Disability Studies

I was fortunate to be able to complete both my undergraduate and masters degrees with relatively little financial difficulty. Cumulatively, I accrued less than $5,000 in student debt. I was able to cover the rest by working and the odd scholarship and bursary. With this history in mind, I entered my gap year between my MA and PhD with optimism. I even imagined being able to pay off my existing loans and starting my PhD with a clean slate. It was not to be.

I initially tried to find work in Toronto because I knew it was the most likely destination for my PhD , either continuing in Disability Studies at York University or pursuing Sociology at the University of Toronto (I have been accepted into the PhD program at York). I sent out dozens of job applications to no avail. I eventually ran out of money and had to return to Saskatchewan in the interim and stay with my mother.

I continued my job search from Saskatchewan while maxing out my credit card on PhD application fees. Here I had a little more luck in that I actually got responses to some of my seemingly unending applications. In one case a local government branch tantalized me with possible work if I could pass their proof of clerical ability tests. I passed all the tests but only gained a place in a database with the dozens of other successful test takers. The province had also instituted a hiring freeze so the jobs available to the database pool were beyond few. I didn’t get a call.

Then, I got an interview with another government agency, for a client services position. The kind that requires a thorough security clearance. The clearance portion of the interview process was to be completed first. I filled in and submitted the 48 page questionnaire and related permission forms and waited.

Several weeks later, I received confirmation that my clearance had gone through and invited me for an interview. The interview request was accompanied by another request asking that I confirm my willingness to submit to a typing speed test and affirm that I was confident in my ability to pass it.

I’m hemiplegic, I type one handed so typing at high speeds is well out of my skill set. I was however confident that the position I had applied for did not require high levels of typing as it was more face to face client oriented. Computer use would be part of it but extensive typing would not. I responded saying that I was available for the interview but that I would be unable to pass a typing test because of my mobility disability. The response was swift and pointed.

“This position is 100% data entry at high volumes. No accommodation can be made in this instance. I will keep your resume on file if something better suited to your skills becomes available, I will contact you”


“How dare you apply for a job that you are entirely unqualified for, you will never work for this organization”

I was floored. I went back to the original job listing to see if there was any way I could have misunderstood it. It had had responsibilities like; process client document requests (basically look up the form and print it out), research freedom of information requests, and provide relief for the central client relations desk. None of these tasks can be performed in conjunction with continuous data entry (I’ve done data entry, it’s all consuming). Nowhere in the job description were the words data entry or any task that so much as suggested extensive typing.

I responded to the employer e-mail expressing my confusion and including a link to the original job listing.

The response I got was full of over the top apologies and a claim that they had gotten confused about which position I had applied for. I was of course qualified for the position I had applied for and been offered an interview to and was welcome to interview.

At this point I knew I would never get this job, No HR rep wants to hire someone whose application is tinged with discrimination. I however wasn’t in a position to turn down an interview, so I went and was interviewed by the very same individual who had been involved in the e-mail exchange. It was the most awkward job interview of my life. I didn’t get the job.

The next job interview I was offered was cancelled two days later because the position funding fell through.

My final job interview that initially looked promising took a swift turn to the wildly inappropriate when one of the first questions I was asked by the middle aged male interviewer was “If we had to travel for work, would you be comfortable sharing a hotel room with me?”. I was shocked and very uncomfortable. We were alone. I stammered through an ” I guess so” (because I didn’t feel comfortable saying no in that context). Then he showed me where I would be working. It was a basement where we would be the only two people working.

I left the interview really uncomfortable and freaked out. I was offered that job but the little money I would have made was not worth the safety risk. I turned it down.

Now it is less than two months until I return to Toronto and finding a job is no longer a realistic goal. My Go Fund Me campaign has been active for 18 days and I have had no luck. I can’t rely on family for the money as they are not in the financial position to assist me.

I goal is to get as much as I would have made if I had been able to get a summer job. Just enough to handle moving costs and initial expenses like tuition and rent.

Please share my campaign.

Kim’s PhD Fund

The Bureaucracy of Disability Accommodation in University

So I will be starting my PhD in Critical Disability Studies this Autumn. In preparation for this I have been applying for housing. I learned my lesson about campus housing during my Masters. I need physical accommodations for housing.

I like many other disabled people have been taught to shun accommodation wherever possible. I grew up believing that the less obtrusive my disability was, the more value I had as a person. I know this wasn’t my parents’ intent, they just wanted me to be independent and were a bit misguided in how that should be achieved. If I asked for help with something, I was often refused under the assumption that if I just tried hard enough, I would eventually figure it out. In reality this lack of support led to a lot of frustration and often things didn’t get done.

That is not to say that disabled people shouldn’t strive to learn to do new things but the mentality of responding to a request for assistance with “You’ll just have to figure it out” is generally not helpful. It also at least in my case led to the internalized idea that I shouldn’t ask for help even if I needed it (you can read about how well that went for me in grade school here).

While I have been getting better at asking for and even demanding (when necessary) the accommodations I need, I still often find myself with the idea that there are certain appropriate accommodations and that if my needs don’t fit that narrow description that I don’t need accommodation.

Which is how for the length of my master’s degree I found myself living on the fourth floor of a walk-up apartment building. I just assumed that because I don’t require adapted appliances or lowered sinks that I didn’t require accommodation.

As such I ended up in the general housing application pool and got what I was assigned.

As I mentioned, I ended up on the fourth floor of a four story walk-up. I managed but it wasn’t easy. Moving in and out were the worst, carrying everything up and down the stairs. I had help in those instances. While I walk well and can climb stairs, my balance is poor, particularly while carrying things. Added to that, stairs are difficult when I am wearing my AFO (leg brace) because it holds my ankle in a stationary position. Consequently I didn’t wear it much.

Getting groceries was particularly difficult, at first because I had to shop and get them on the bus and then from the stop up to my apartment. I was extremely limited in what I could buy because weight and balance were always a consideration. In order to avoid having to make multiple trips to the grocery store, I began having them delivered. Though it was easier for me physically, I still had to contend with delivery personnel  who were less than impressed with having to carry the food for me.

Now it is time for university housing round two, I know a lot more and I know what I need. Getting it however is a different story.

I know that to live comfortably and safely I need the option to avoid stairs when I am carrying things or wearing my leg brace so I need a ground floor apartment or an apartment in a building with an elevator. In order to get this, I had to get a form filled out by my doctor who is unfamiliar with the housing arrangements at my university. I filled the form out myself and luckily my doctor trusts that I know what I need and signed it for me. Because I saved her the trouble of filling out the form, I also luckily saved myself the usual fee charged for such services.

This was annoying enough but it was after I submitted the form that things got even more complicated.

Most universities have a single disability services regardless of type of disability (psychiatric, physical, learning, etc.). All your needs are taken care of in a single location. Not so at my current university. There it is broken up into three separate offices; physical and sensory disabilities, psychiatric disabilities and learning disabilities. They also much prefer it if you are only registered through one of them. Heaven forbid you have multiple disabilities with diverse needs. You have to decide what your “primary” disability is and go through that office.

Trying to choose a primary disability is ridiculous and kind of depends on circumstances.

I have both cerebral palsy and an autism spectrum disorder. Because the entire point of university is to learn and my autism is the most likely to impact my ability to do that, I registered with Learning Disability Services during my master’s. My cerebral palsy is rarely an impediment to learning. I can get around buildings and classrooms with minimal difficulty.

Where housing is concerned however my cerebral palsy becomes the key consideration, though it is important to note that not being accommodated for my physical needs does inevitably negatively impact my autism as added stress makes my autism more apparent.

I however cannot request housing accommodations through Learning Disability Services, they are in the domain of Physical Disability Services. So despite having already gone through the bureaucratic intake for my learning disability, I had to redo the process for physical disability.

When you go through having to prove that you are disabled and therefor entitled to accommodation you learn a few things.

1. Your permanent disabilities are assumed miraculously cured if the diagnosis or documentation is not recent

I learned this when I registered through Learning Disability Services. I provided documentation of my diagnosis but because I don’t generally feel the need to get rediagnosed on a regular basis it was considered to be out of date despite the fact that autism is permanent. All of my accommodation were thus given very begrudgingly. The reason I didn’t have more current documentation? My home is over a thousand kilometres from school and I didn’t have access to doctors that know me and my medical history. Which brings me to…

2. Disabled people are not expected to be traveling long distances to go to school (I guess if a program isn’t offered locally we are supposed to just not go)

As I mentioned, I don’t live close to my university and am trying to organize accommodations for housing. Yet upon submitting my intake form. I am invited to an in person interview. When I explain that going isn’t possible until I return to school I am treated to an explanation as to how the interview and filling out of additional forms is usually necessary before accommodations can be considered. They eventually agree to allowing me housing accommodations without the interview as I need housing in place before I arrive at school.

I was also treated to questions about why I was already registered with Learning Disability Services and a not to subtle suggestion that if I needed physical accommodations that I shouldn’t have done that.

Having secured permission to apply for housing accommodations, I begin to fill out the request form. I am reminded of my past beliefs that certain accommodations shouldn’t be sought because on the form only 3 types of accommodations are listed.

1. Do you need an automatic door opener?

2. Do you need light flashing alarms instead of audible alarms?

3. Do you require adapted appliances and a wheelchair accessible space?

My answer to all three is no. The form offers no question or space to request accommodations that are not met by those changes. I end up using an unrelated text box to discuss my needs. Hopefully I will be accommodated but it is obvious that they are not used to getting requests that deviate from what they expect disabled people to need.