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.