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.

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7 responses to “Choosing Not to Disclose a Diagnosis is Not Giving in to Shame

  1. I think she (Heather) means that since some cases of mental illness are not lifelong, the ones these students are experiencing must all fall into that same category.
    Which totally isn’t true and undermines the fact that regardless of how long an illness takes the person experiencing it still experiences it. Way to downplay people’s experiences Heather Mallick.

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  2. I love the idea of keeping your diagnosis private for accommodations. I have CFS/SEID which is a very politicized and contested diagnosis. Especially contested by arrogant assholes who have never dealt with it in their lives but also by doctors who don’t believe it exists. I am a pro-science skeptic and do think some conditions such as MCS are not based in evidence but you have to be ignoring research to deny that there is evidence for CFS/SEID existing.

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    • It’s unfortunate that in the case of this ruling that it currently only covers mental health diagnosis but I know people are working on extending it and this finding should give precedent for it to expand to all diagnoses

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      • (US Perspective:) Firstly, thank you for making what should have been an obvious point very eloquently. Secondly, #1 is infuriating, so thank you for calling it out for the largely impractical twaddle it is for many people in the day to day reality of social stigma enforcement. Thirdly #5, as any individual’s right to engage in information management (need-to-know disclosure) to avoid it (or just basic confusion). In the social model of disability, at least some of what may just be fact-of-life conditions in many contexts will most definitely be disabling when forced into the wrong one on the wrong terms by lack of universal design, or extrernally imposed through social discrimination/ignorance/stigma. An increasingly common attitude seems to conflate the meaning of “private/personal/confidential” with “secrets I won’t actually ask you about”, at least in proximity to the tech industry here.

        Most professors & other university lecturers aren’t trained in educational psychology or androgogy at all, so even with ironclad paperwork there is still much room for misunderstanding or distrust, exacerbated by some students who do indeed falsely claim to have disabilities to faculty, yet never seem to have documentation of documentation on file, which should be enough for instructors to sort by. When you are a grad student or academic yourself, such imprecise perceptions by colleagues can have real professional or fellowship/funding consequences, as I note even current research out of the UK still uses “learning disability” interchangeably with intellectual/developmental disability (iDD).

        While I do think there is some sincere yet increasingly common colloquial confusion about the difference between emotional states & diagnosed clinical conditions in everyday usage (particularly among today’s traditionally college-age), the idea that institutions (& many instructors) would provide any accommodations whatsoever without ironclad medical documentation at least on file with Disability Services just demonstrates callous ignorance, as if one can simply go on WebMD then get a parking placard or government social services simply on a self-diagnosis. Which many believe, despite the ubiquitous blogs by PWD around the entire virtual Anglo-sphere which seem to be posted daily. If Brits (& Kiwis & Aussies) hadn’t already disabused me, might have briefly hoped that Canadians would at least be less raging in their bigotry when expressing their outrage at the entitled disabled getting unfair privileges, compared to what I expect from the cynical social Darwinism of my fellow countrymen.

        Taking it further, the continued relevance of your critique to receiving basic clinical neuropsych-based health care in everyday practice, let alone in work/education/housing accommodations, seems most fundamental. Particularly as the US Mental Health Parity Act 2010 & ACA 2012 finally made parity of insurance coverage for “medically necessary” mental/cognitive/behavioral health care a federal mandate, the latter also allowing patients to finally opt out of compulsory binding arbitration with Managed Care/HMO insurance/care providers for the first time in over 50 years for many, allowing patient-consumers to finally pursue compliance-by-litigation when regulatory bodies are captured, fail, or otherwise unacceptably defer/deny care.

        Clinicians outside boutique Fee-For-Service neuropsychiatry specialists are largely either unfamiliar with non-“classical” mental health, non-traditional neurological (TBI etc.), conditions* & their treatment modalities (i.e. coaching for ADHD, behavioral interventions for ASD, etc.), or simply cannot provide such care given their limited contact time with individual patients within the brief & infrequent (covered) clinical visits, it is no wonder there is little non-curiousity based incentive for engaing in ongoing professional development which cannot be applied in practice. This leads to defaulting to 100-years of the mental “illness” model, even when treating primarily cognitive, behavioral, and/or developmental conditions with minimal primary affective or personality-based dimensions, which often means focusing on treating symptoms of secondary effects of primary conditions which are familiar, rather than addressing the root causes which could likely be adapted to, managed, or supported better without the derail of dealing with depression from underachievement/understimulation, social anxiety from repeated stigma-based abuse, or reasonable expectations of external parties engaging in discriminatory social gatekeeping.

        When neither (covered/affordable) psychiatrists nor psychotherapists in clinical practice outside government rehab agencies are rarely even systematically trained in (or ever directly exposed to) the primary Activity of Daily Life & functional impact concerns not always appearant during brief office sessions, even well-meaning providers often fall into routine habits of clinical practice, or are restricted to them due to often unlawful constraints around intervening efficaciously with primarily cognitive, behavioral, and neurodevelopmental conditions. Often the “band-aid” of targetting symptoms of secondary mental health conditions with therapy and/or med man wind up even trumping more basic medical care when there are physical health multimorbidities presenting alongside secondary/exacerbated mood, anxiety, dissociative, trauma, or personality disorders.

        Examples include parents of ASD children aged 0-6 advocating for a neurodevelopmentally time-sensitive yet very inexpensive behavioral intervention, then having to spend half a dozen years litigating parity of coverage with their HMO in a class action suit which is settled once that optimal intervention is no longer an option, leaving only more remedial than preventative interventions available, or Adult ADHD patient-consumers not wanting to take medication being unable to have coaching for their executive functions covered, even though again it would be cheaper, briefer, & more efficacious than either an MD writing scripts indefinitely or a psychotherapist adapting CBT-for-anxiety ad hoc (if at all).

        As someone who has managed a mood disorder since childhood with varying degrees of success, I am absolutely not diminishing the *rights* of those with mental health conditions to receive reasonable accommodations, or to receive timely, covered MHC on parity with internal medicine. However, even with MDD & other more common chronic mood disorders, many MH providers do not seem familiar with even with reccommending psychiatric “reasonable accommodations” for employment, academics, and housing unless they work closely with Dept of Rehab or its consumers (in the US).

        The State of California and some well-intentioned major MH advocacy groups like NAMI are pushing an unqualified “come out of the attic to end stigma” campaign right now, without acknowledging how complex disclosure(s) are, so this piece is particularly timely. Despite being out about MDD my entire life, only started to catch shade in recent years when chronic medical conditions undermined my lifelong ability to microadapt to make individuals comfortable, which I hadn’t realized I relied so heavily upon to “pass” as merely eccentric.

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  3. I have both CFS and NVLD, which leads people taking the name alone and drawing a ton of false conclusions from it. For example, if I say I have CFS they tell me to get some rest, not knowing unrefreshing sleep is a symptom. Or think I’m non-verbal because I have Non-verbal Learning Disability.

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