The Complex Stigma of Schizophrenia 

Content warning: suicide

In 2020, a University of Toronto student named Anushka went to the Health and Counselling Centre (HCC) on campus. She expressed that she was experiencing anxiety and suicidal ideation, and she needed help.¹Sarah Treleaven. “Inside the mental health crisis at Canadian universities,” Maclean’s, October 8 2020. She saw a campus doctor, who immediately directed her to a hospital. Anushka had a test that very day so she told them she would go to the hospital the next day. But the doctor called campus police, who marched her out of the HCC, handcuffed her in public, placed her in a car, and took her to hospital. They refused to allow her friend to accompany her even though she had begun to panic and fell into an anxiety attack. The campus police later issued a statement that handcuffing is used “to prevent a person’s escape, for a member’s safety and for the subject’s safety.” But in forcibly taking students to the hospital, they leave students feeling powerless and unsafe, removing their agency and capacity to make decisions over their own bodies. Anushka’s experience was brutal but by no means unique, as this appears to be a common problem in Canadian universities. Victims often describe that their experiences deter them from ever seeking help again.

This event was hardly surprising to me. When I studied at U of T, my family member was terminally ill. I had reached out to staff at U of T to ask for help, and not only did they refuse to defer my exams, but they also informed me that the university’s counseling therapy service, which our tuition – one of the highest in Canada²Universities Canada, “Tuition fees by university … 2021 – 2022”.  – covers, was overbooked for almost a year. Instead, I could go to a campus library and pet Bella the therapy dog for an hour every week.³University of Toronto. “Past Events & Exhibits at Gerstein.”  In my graduating year, 2017, a student committed suicide at the Bahen Centre, where many engineering students have lectures. Since then, 2 more students have committed suicide in that building, sparking outrage from students.⁴May Warren “Students criticize U of T after third death at same building in under two years,”Toronto Star, September 30, 2019.

Many have spoken up about the treatment of mental illness by Canada’s institutions and their sluggishness in enacting any measures to make respectful and humane accommodations. Despite tweeting regularly about supporting mental health, U of T has failed to meet students actual requests while disastrously mishandling more serious concerns.⁵Melissa Mancini, and Ioanna Roumeliotis. “’It’s literally life or death’: Students say University of Toronto dragging feet on mental health services,”CBC, November 21, 2019. At the end of the day, mental illness requires urgent help while respecting the autonomy and agency of an individual. 

~

Why do people who suffer from mental illness sometimes kill themselves? What many don’t like to consider is that, at least historically, it can have less to do with the person themselves than with the ways their illness opens them up to stigmatization or state violence. 

Many young people and mental health organizations have spoken up about debilitating illnesses such as anxiety and depression, and this has been a promising turn in public discourse. 

However, there remains one branch of disorders for which not much has changed: schizophrenia and psychotic disorders. One may be surprised to learn that psychotic disorders are quite common. As of March 2022, about 4% of Canadians, or 1.5 million people are known to have schizophrenia or other psychotic disorders.⁶Lecomte et al. “The Canadian Network for Research in Schizophrenia and Psychoses: A Nationally Focused Approach to Psychosis and Schizophrenia Research”. Canadian journal of psychiatry 67, no. 3 (2022): 172-175. Notably, research also shows that schizophrenic patients are 14 times more likely to be victims of violence rather than perpetrators.⁷Wehring and Carpenter. “Violence and schizophrenia.” Schizophrenia bulletin 37, no. 5 (2011): 877-878. ⁸A 2006 national study of violent behavior in the US looked at 1,410 people with schizophrenia and found that only 3.6% or 51 of them had engaged in serious violent behavior – see Swanson et al. “A national study of violent behavior in persons with schizophrenia.” Archives of General Psychiatry 63, no. 5 (2006): 490-499. In 2020, a 6-year study of 1,119 patients also found that only 1.8% of patients had attacked or abused others after the onset of schizophrenia – see Faay et al. “Aggressive behavior, hostility, and associated care needs in patients with psychotic disorders: a 6-year follow-up study.” Frontiers in Psychiatry 10 (2020): 934. Only 2.8% reported behaving maliciously or hostile ways towards others and 0.8% reported that they believed they could be dangerous to other people. Notably, research also shows that schizophrenic patients are 14 times more likely to be victims of violence rather than perpetrators. See Wehring and Carpenter. “Violence and schizophrenia.” Schizophrenia Bulletin 37, no. 5 (2011): 877-878. Certainly, a small minority of patients with schizophrenia may engage in violent behavior, but the overwhelming majority are peaceful –  and yet, it remains one of the most stigmatized disorders today.  

There are many reasons for this stigma. Firstly, it’s often hard for people to empathize with schizophrenic patients. We are more likely to understand depression and anxiety because we commonly feel “sad” or “anxious.” Even if this is not an accurate understanding of depression or anxiety, it does allow people to conceptualize how these conditions can manifest and how severe cases can be debilitating. Stigma towards schizophrenia is uniquely pronounced because symptoms are less relatable. Schizophrenia’s symptoms often include hallucinations, where a person may perceive a touch, smell, taste, sound, or vision without a stimulus, and delusions, meaning that they may hold false beliefs.⁹Picchioni and Murray. “Schizophrenia.”BMJ (Clinical research ed.) 335 no. 7610 (2007): 91–95. Symptoms typical of schizophrenia, such as distorted or illogical speech, may appear incongruent with social norms. As a result, many patients experience social isolation and withdrawal, and an inability to relate their lived experiences to others. People associate schizophrenic patients with danger, violence, or unpredictability significantly more than “normal” illnesses like depression because it is assumed to be genetic and outside of their control.¹⁰Norman et al. “Examining differences in the stigma of depression and schizophrenia.” International Journal of Social Psychiatry 58, no. 1 (2012): 69-78. This inability to empathize is deepened by a lack of representation of the lived experiences of most people with schizophrenia.  

The public stigma even appears to affect organizations established specifically to assist people with schizophrenia. According to the CBC, some Canadian mental health organizations, such as the Institute for Advancements in Mental Health, are removing the word “schizophrenia” from their names.¹¹“Some Canadians fear mental health groups are reinforcing stigma by erasing ‘schizophrenia’ from their names” CBC, April 23, 2022. The Schizophrenia Society of Nova Scotia has changed their name to Hope for Mental Health. 12“About,”Hope for Mental Health. Their executive director, Karen Slaunwhite, has said that corporate sponsors simply do not find schizophrenia as “attractive” as other mental illnesses, because “anxiety and depression are considered more mainstream.”  

But ultimately, schizophrenic cases exist on a spectrum of functionality, where severity can be significantly exacerbated by social stigma. A more accurate understanding would distinguish schizophrenia from violence and derangement. To assume all cases are violent and treat all people as violent criminals is decidedly inhumane. With more flexible treatments and public education, we can gradually help others understand that the vast majority of schizophrenia cases are not dangerous.

The stigma against schizophrenia kills. Schizophrenic patients regularly experience discrimination from their friends, their family members, their employers, and their intimate partners, which can result in social marginalization and work instability.¹³Thornicroft et al. “Global pattern of experienced and anticipated discrimination against people with schizophrenia: a cross-sectional survey.”The Lancet 373, no. 9661 (2009): 408-415. In one UK survey, about 70% of 1,737 respondents considered people with schizophrenia, alcoholism, and drug addiction as “dangerous,” while 80% rated them as “unpredictable.”¹⁴Crisp et al. “Stigmatisation of people with mental illnesses.” The British journal of psychiatry 177, no. 1 (2000): 4-7. Stigma can affect self-esteem and the perception of one’s own cognitive abilities as schizophrenic individuals internalize shame and negative perceptions.¹⁵Violeau et al. “How internalised stigma reduces self-esteem in schizophrenia: the crucial role of off-line metacognition.”Cognitive Neuropsychiatry 25, no. 2 (2020): 154-161.  The mere anticipation of rejection by the general population drives self-isolation, and often damages overall confidence. Around half of all schizophrenia patients refuse treatment due to stigma. Alarmingly, the stress alone can increase the likelihood or hasten the onset of psychosis.¹⁶In one UK survey, about 70% of 1,737 respondents considered people with schizophrenia, alcoholism, and drug addiction as “dangerous,” while 80% rated them as “unpredictable.” See Crisp et al. “Stigmatisation of people with mental illnesses.”The British journal of psychiatry 177, no. 1 (2000): 4-7. But ultimately, the leading cause of reduced life expectancy among people with schizophrenia is suicide: patients have a 10% suicide rate while somewhere between 18-55% of patients attempt suicide, according to one 2019 study.¹⁷Sher and Kahn. “Suicide in schizophrenia: an educational overview.”Medicina 55, no. 7 (2019): 361 One of the biggest predictors of suicide?  Isolation or loneliness. As Esme Weijun Wang explains, stigma runs so deep that some physicians also attempt to avoid diagnosing patients with schizophrenia, to avoid these adverse social dynamics. 

~

A major contributor to the public’s fears and taboos around schizophrenia is negative depictions and stereotypes in media such as the news and films. When a schizophrenic patient does behave violently, it’s often overblown and sensationalized – even though such instances of violence are rare.

For example, in 1995 Jeffrey Arenburg, a schizophrenic man who was off his medication shot and killed Brian Smith.¹⁸Gord Holder. “Revisiting a tragedy that shocked Ottawa: Sportscaster Brian Smith’s legacy lives on, 25 years after his killing,”Ottawa Citizen, July 25, 2020. Macleans reported that the murder was caused by “one man’s dislike for the media.”¹⁹Warren Caragata. “The price of fame,”Macleans, August 14, 1995. They also called it “ironic” that the murder happened right after a news report from Statistics Canada that violent crime was at record low – as if this murder suddenly undid that trend. It also heightened public fear of being violently killed by a schizophrenic patient. Smith’s fame as a sportscaster led news media to mythologize Smith as an exemplary citizen and Arenburg as a dangerous mentally ill killer. 

This public spectacle culminated in Ontario passing Brian’s Law or Bill 68, which introduced involuntary community treatment orders (CTOs) for individuals who have previously been admitted to psychiatric facilities.²⁰Brian’s Law (Mental Health Legislative Reform), 2000, S.O. 2000, c. 9 – Bill 68. A CTO is essentially a legal order from a physician or psychiatrist which sets requirements a patient must meet when leaving a psychiatric facility – medication regimens, conditions on where they are permitted to live, etc. If they fail to follow instructions, police can detain them for reassessment and potentially institutionalize them. Alana Kainz, Smith’s widow, publicly stated: “This law will be Brian’s legacy… Brian’s Law will save lives and prevent other tragedies.”²¹Walker. “The Legacy of a Story: Commemoration and the Double-Narrative of Jeffrey Arenburg and Brian Smith.”Disability Studies Quarterly 28, no. 1 (2008).

Brian’s Law demonstrates how fear and stigma can have lasting institutional consequences. The media created a demonized caricature of schizophrenia, leading many to fear being killed by a homicidal stranger with schizophrenia. In reality, a 2011 meta-analysis determined that the odds of being killed by a person with a psychotic illness are about 1 in 14.3 million.²²Nielssen et al. “Homicide of strangers by people with a psychotic illness.”Schizophrenia Bulletin 37, no. 3 (2011): 572-579.  That’s a smaller chance than being struck by lightning twice.

So what about the many people Bill 68 will police? The policy has been met with extensive criticism. At the time, the concept of CTOs was limply depicted as “better” than immediate confinement in psychiatric facilities because only physicians may issue CTOs. However, the overwhelming reality is that these rigid and blunt instruments overturn patients’ decision making capacity and exacerbate internalized stigma. The Canada Civil Liberties Association (CCLA) has argued that the restrictions of this compulsory treatment are unjustified.²³“Talking About Community Treatment Orders and Discrimination.” May 19, 2015. Canadian Civil Liberties Association.  They mischaracterize the mentally ill as “a problem” that must be dealt with rather than people who require care and understanding.

The policy assumes that schizophrenic individuals cannot independently make their own lifestyle or treatment decisions, and places sole decision-making power into the hands of a physician. CTOs include bizarre orders as distant from treatment as a prohibition on smoking. Is it even possible that such a policy could still respect a person’s agency and bodily autonomy if the doctor has absolute power to decide how a patient will live their life? 

Informed consent generally requires that patients have the cognitive ability to consider information about available treatment, to apply it to their own circumstances, to consider possible consequences, and to reach a decision.²⁴Neilson and Chaimovitz. “Informed consent to treatment in psychiatry.”Canadian Journal of Psychiatry. 60, no. 4 (2015): 1. Mental illness is never homogeneous; we cannot accurately say that a specific illness impairs one’s ability to consent or make decisions. Studies reflect that schizophrenic patients sometimes exhibit impaired decision-making capacity (DMC), but this is highly variable due to individual differences between patients. Instead, the ability to make an informed decision varies based on education level, psychotic symptoms, and a complex system of cognitive ability.²⁵Raffard et al. “Cognitive insight as an indicator of competence to consent to treatment in schizophrenia.”Schizophrenia Research 144, no. 1-3 (2013): 118-121. Cognitive ability in this case refers to capacities like attention and conceptual thinking – which may be impaired in some cases if patients experience hallucinations or delusions. DMC also depends on whether a person has been allowed to make decisions voluntarily; in other words, if decisions have been consistently made for someone, they may not have exercised their decision-making skills very much. Researchers therefore theorize that therapy for schizophrenic patients should include a hypothetical reasoning component that could help them strengthen this skill.

Some schizophrenic patients score lower on cognitive tests that evaluate DMC, but one specific subgroup of patients shows no difference in their scores compared to the general population – namely, patients who have insight. “Insight” refers to a patient’s awareness and acceptance of their condition. Although further research is required, there is a positive correlation between insight and the competence to consent.²⁶Capdevielle et al. “Competence to consent and insight in schizophrenia: Is there an association? A pilot study.” Schizophrenia research 108, no. 1-3 (2009): 272-279. In addition, schizophrenic patients are more likely to have insight if they have attended schooling and received education. 

Even patients with poor scores can improve if their insight is cultivated. When patients with poor DMC scores were medicated and received a week to a month of instruction about informed consent, their DMC scores significantly improved. Much of the impairment in decision-making may stem simply from miscommunication or a lack of instruction about their condition, their treatment options, and their potential outcomes. With the right help instead of incarceration and stigma, such patients could potentially become much more independent. 

And even if a patient is incapable, should we enforce involuntary CTOs anyway? 

In a famous Canadian case concerning informed consent, physicist Scott Starson – who had schizoaffective disorder and whom the Globe and Mail (one of Canada’s biggest newspapers) called the “crazy professor”²⁷Margaret Wente. Wente, Margaret. “The case of the crazy professor,”The Globe and Mail, June 10, 2003. –  was involuntarily detained after making death threats. He began a legal battle for the right to refuse a medication-based treatment. 

Two psychiatrists testified that Starson could not understand the importance of medication-based treatment and thus was incapable of refusing treatment. The basis of their argument was that Starson refused to accept his illness; however, this may have simply been a misinterpretation of his rhetoric, because Starson acknowledged his condition but refused to classify it as an illness. The case reached Canada’s Supreme Court in 2003, whose ultimate decision favored Starson.²⁸Starson v. Swayze 2003 SCC 32 [2003] 1. S.C.R. 722 Starson not only understood and acknowledged his condition, but also understood the hypothetical outcomes of refusing or agreeing to medications. He was willing to receive psychotherapy, but he had refused medication because he worried of their side effects which include numbness and lethargy. His scholarly and engineering work remained clear, coherent, and validated by his peers.

Starson’s case illuminates the importance of respecting the wishes, intellect, and bodily autonomy of people with psychosis. Yes, he had made death threats, which remain disturbing and uncomfortable. This type of outburst may occur among some schizophrenic patients – and also among many idle Twitter users.²⁹Notably, today there are thousands of death threats online every day, according to Pew Research. They are so common that 41% of Americans have experienced it themselves, while 66% have witnessed others. It does not warrant a CTO that forces patients to take medication against their will, which is highly unethical and arguably a violation of rights under the Charter of Rights and Freedoms.³⁰Sheldon and Spector. “Law as a site of mad resistance: User and refuser perspectives in legal challenges to psychiatric detention” Journal of Ethics in Mental Health 10, (2019): 1-19. People with schizoaffective disorder are disproportionately victims of violence compared to  the general population. Further careful study should determine how negative experiences such as past violence, or abusive behavior, may contribute to the likelihood of the onset of psychosis or violent tendencies.³¹Graham and Mulvale. “Commentary: Framing people as the problem: The effects of problem definition in ‘Brian’s Law’ on people with mental illness.”McMaster University Medical Journal 10, no. 1 (2013): 36-38. 

~

When Jeffrey Arenburg murdered the sportscaster Brian Smith, he immediately turned himself in. He was held in a psychiatric facility until 2006 when he was discharged, and shortly thereafter was arrested when he stopped taking his medications and punched a US border guard. In 2017, he died of a heart attack.³²Crawford, Blair. “Jeffrey Arenburg, killer of sportscaster Brian Smith, dead of heart attack,”Ottawa Citizen, June 27, 2017. His family had not spoken to him in years, saying that he was “kind of a loner.” There is no evidence of any investigation into why Arenburg chose to go off his medications. He evidently experienced major social isolation. Instead of creating a public fear campaign, we should have elevated the voices of schizophrenic patients to create legislation that could provide an agency-enhancing and respectful way of life for people with schizophrenia. Meanwhile, in 2016, the Supreme Court of Ontario ruled that Brian’s Law was not discriminatory despite appellants arguing that the involuntary institutionalization of a patient to a facility for simply not complying with conditions is “injustifiable.”³³Canadian Press. “Brian’s Law constitutional, province’s highest court rules,”CBC, September 14, 2016.  

CTOs remain controversial today; they are less restrictive than institutionalization, but many patients on CTOs feel alienated, and hopeless, “like criminals” that society must be protected from. Healthcare providers have also voiced concern that the current legislation simply reinforces stereotypes around schizophrenia and worsens patients’ self-esteem – often to the point of exacerbating the silent crisis of isolation, treatment refusal, and suicide among people with schizophrenia. 

An ethical approach would reimagine treatment for people with this debilitating mental illness. It would focus less on forced medication use or systems of punishment, and more on providing extra modes of help such as peer groups, psychoeducation, vocational intervention, and self-help programs. It would offer cognitive therapy sessions to patients who have gone off medication or have shown some erratic behavior towards others, to assist them in socializing and reasoning, rather than an involuntary CTO that forces them to continue to take medication they do not want. These therapy sessions could include a focus on hypothetical reasoning, including a conceptualization of their condition and their experiences that might help them become more independent in the long run. Individuals with a predisposition to schizophrenia should also be encouraged to assign substitute decision-makers such as family members or loved ones who have a robust understanding of their wishes and who will vigorously advocate for them in the face of an indifferent and expedient system. Making decisions in advance is an important fall-back, in case an individual loses decision-making capacity later.

We must rethink mental health care reform in its entirety – particularly legislation such as Brian’s Law, whose emotionally charged title reminds many Canadians of one sensationalized violent incident and ignores the struggles of everyday citizens with opinions, thoughts, and goals. We must better research the social factors that influence schizophrenic symptoms and the onset of psychosis, and we must understand that schizophrenic individuals are a significant and permanent part of our community who deserve respect and dignity. They are not dangerous criminals to be removed from the general population; most of the time, the patients are far more vulnerable than we realize. The people with schizophrenia who commit violent acts will typically have multiple factors that contribute to their actions, including a history of abuse from parents or concurrent substance abuse.³⁴Buchanan et al. “Correlates of future violence in people being treated for schizophrenia.”American Journal of Psychiatry 176, no. 9 (2019): 694-701 We also see violence from people suffering from post-traumatic stress disorder – up to 19.5% in war veterans³⁵Norman, Sonya, Elbogen Eric B, and Paula Schnurr. “Research Findings on PTSD and Violence,” U.S. Department of Veterans Affairs. and we certainly do not treat them the same way we treat patients with schizophrenia. 

Schizophrenia is highly variable, and patients are dynamic individuals. Many of their experiences are shaped by context. Our institutions – including our media, healthcare, and justice system –  create a context where many patients lose hope, refuse treatment, and ultimately die. Would you trust an institution to help you after they humiliate and harm you? Perhaps it’s time for counterproductive mechanisms like Brian’s Law to be modified – or better yet, shelved and replaced completely. ~