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.