Stop the stigma: resources to challenge mental illness stigma

Stop the Stigma: Resources to Challenge Mental Illness Stigma

Mental illness can certainly be difficult to live with, but the associated stigma can make it even more challenging. Creating change to stop the stigma requires open conversations and replacing stereotypes with real human faces and stories. So let’s talk about it!

Book cover: A Brief History of Stigma by Ashley L. Peterson

For a more in-depth look at stigma, check out my latest book, A Brief History of Stigma. It explores the nature of stigma, the contexts in which it occurs, and how we can most effectively challenge it. The book page also has a stigma reduction toolkit with resources to help you challenge stigma.

You can find the book on Amazon and Google Play.

Mental Illness Stigma: The Basics

Stigma isn’t inherent in mental illness; rather, it comes from social beliefs about what’s considered “normal” and socially acceptable, and what kinds of identities are considered deviant. These deviant identities are seen as encompassing the whole person, and society views people with these identities as Other.

Stigma involves three elements:

  • Stereotypes: Stereotypes are ideas that represent groups of people. We learn these early in life. Stereotypes about mental illness tend to be rigidly applied to all members of the group as though we’re one homogeneous identity. The stereotype that mentally ill people are violent is particularly pervasive and damaging, and it’s regularly reinforced in the news and entertainment media.
  • Prejudice: Prejudice refers to negative attitudes, including thoughts and emotions, that are based on stereotypes. For example, the violence stereotype may trigger fear and a desire to avoid being around someone who has a mental illness.
  • Discrimination: This refers to behaviours that result from prejudice that end up disadvantaging people with mental illness. An example of discrimination would be an employer choosing not to hire someone with a mental illness based on their prejudiced attitudes towards mental illness and the associated stereotypes.

Levels of Stigma

Stigma can occur on multiple levels:

  • Public stigma: public views and discrimination around mental illness
  • Structural stigma: entrenched in laws and policies in governments and other institutions, often involving arbitrary distinctions based solely on membership in the broad group of people with mental illness
  • Self-stigma: results from internalizing public stigma
  • Feared vs. experienced stigma: even if prejudice and discrimination aren’t presently occurring, the expectation that they’re likely to occur and the hypervigilance that results are also very damaging
Corrigan and Rao's model for the process of how self-stigma happens

The Self-Stigma Process

Sometimes, stigma is internalized to become self-stigma. This happens when stereotypes that are part of public stigma are seen as being valid. These stereotypes are then applied to the self. This has significant consequences, including devaluation of the self and behavioural changes related to a “why try” attitude.

Peer support can be a powerful way of combatting self-stigma. You can read more here about the benefits of peer support.

Strategies to stop the stigma

Strategies to Stop the Stigma

Stigma reduction campaigns often use one of three broad approaches. These are explored further in this post on fighting stigma most effectively, which is based on Patrick Corrigan’s excellent book The Stigma Effect.

Protest

Protest strategies point out stereotypes and discrimination and call on people to address the injustices identified. However, they may end up triggering reactance, which is a psychological phenomenon that can happen when people perceive that their freedom is threatened. Reactance makes people dig in and lean harder into what they’re being told not to do in order to exert their freedom. This means that protest strategies can actually have the opposite of the intended effect.

Education

Education about mental illness can provide corrective information to counteract stereotypes.

Awareness campaigns also aim to increase public knowledge. These types of strategies can be implemented on a large scale, and implementation is relatively low-cost. However, this approach assumes that lack of information is the cause of stigma, which isn’t necessarily the case.

Education campaigns that focus on framing mental illness as a biological brain disease have repeatedly been found to increase stigma, as strange as that may sound. While framing it this way may be useful for those of us dealing with mental illness, in the general public, such framing can make people think that mental illness is permanent and not responsive to treatment. You can read more about this in an article by Patrick Corrigan and Amy Watson in Schizophrenia Bulletin.

Contact

Contact with people who have a mental illness is the most effective way to decrease stigma. This is why opening up about our own illnesses and sharing our stories with others is so important. and valuable Specifically, it’s most effective when that contact involves:

  • equal social status
  • one-on-one contact
  • engaging together in a rewarding activity
  • interactions that moderately disconfirm stereotypes (but the person is still “convincing” as someone who has a mental illness)

Raise Your Voice and Share Your Story

Stigma deals in stereotypes, but by sharing our stories, we can replace those stereotypes with a more realistic picture of what it is to be a person with a mental illness.

Coming out as having a mental illness, and sharing both the challenges and obstacles overcome, can be intimidating, but it’s a powerful way of demonstrating to the world what mental illness actually looks like without the stereotypes. The more of us that speak out, the easier it is for others to feel safe opening up and sharing their own stories.

Honest Open Proud is a three-session group program developed to support people around disclosing their mental illness. Even if the group isn’t available where you are, the program manual and workbook is available online.

Sharing your mental health story to challenge stigma

Your story is your own to tell in whatever way you wish. However, when sharing your story specifically for the purpose of stigma reduction, there are certain strategies that can help you to be more effective with that. These resources have some useful tips:


Writing

Writing is a great way to share your story. If you’re feeling hesitant about sharing your story openly, sharing anonymously can be a good way to start. The post Ways to Share Your Story contains links to a wide range of different mental health sites where you can submit stories.


Speaking

Public speaking isn’t everyone’s cup of tea, but it can be a powerful way to share your story. Check with your local mental health charities to find out about speaking opportunities in your area. These national charities offer speaking opportunities:


Media

Speaking with the media is another option for getting the word out. Most of us don’t have much, if any, practice with that, but there are resources that can help you out. The University of Kansas Community Toolbox has tips on media advocacy, and the Berkeley Media Studies Group has resources for Getting Started with Media Advocacy.

In the UK, the charity Mind has media volunteer opportunities. On Twitter, the hashtag #journorequest is a good way to connect with journalists looking for sources for stories.

In Australia, SANE’s Stigma Watch program monitors and responds to inappropriate media reporting on mental illness. You can let them know if you come across something concerning.


Resources for Advocates

WEGO Health’s Patient Leader Network has a variety of resources for health advocates, including networking opportunities and advocacy training. I invite you to join me there!

These sites also have information and tools to support you in your advocacy work:

The Advocacy 101 video below is from the AFSP (American Foundation for Suicide Prevention).

There’s no need to go it alone in challenging stigma. These are some of the organization that are trying to promote dialogue around mental illness and challenge stigma on a broader scale:


Legislative & Policy Advocacy

Whether you like politics or not, governments’ actions can have a big impact on those of us with mental illness, so it’s imperative that they hear our voices. Getting in touch with your local elected officials is one way to get active with political advocacy; you can also jump on board with the efforts of mental health organizations lobbying for positive changes.

These organizations have ongoing advocacy work that you may want to get involved with:

Language and mental illness stigma

Language & Mental Illness Stigma

Words can hurt, but words stem from attitudes, and attitude change is what will lead to positive change for people living with illness. It’s important not to get so caught up in words that we lose sight of the bigger picture.


Language Policing

Language policing, or word policing, involves identifying certain words as being right or wrong, telling people which words to use, and then scolding people if they use the words that have been deemed to be wrong. In many cases, the “correct” words have essentially the same dictionary definition as the words they’re replacing (e.g. “person with a mental illness” rather than “mentally ill person”).

The euphemism treadmil, offers a fascinating way of looking at how neutral words become tainted by society’s negative attitudes towards what the words refer to. Eventually, the new “correct” words become tainted as well, and it’s time for new words. A fairly common euphemism I’ve noticed is to use mental health as though it was synonymous with mental illness.

Another issue is that telling people how to talk can trigger reactance, a psychological phenomenon that makes people tend to do the opposite of what they’re being told to do if they perceive it as a threat to their freedom. This may be particularly likely if people perceive language change efforts as a form of political correctness.

Language policing is particularly problematic when it targets people talking about their own mental illnesses; that’s very much the wrong target audience.

While it may be possible to control language in certain specific circumstances and contexts, changing the attitudes that underlie word choices is more likely to produce lasting change across contexts. There’s more on this topic in Patrick Corrigan’s article Beware the Word Police in the journal Psychiatric Services.


person-first language and mental illness

Person-First vs. Identity-First Language

Person-first language has become the “correct” way of talking about illness and disability. This involves using nouns (e.g. “I have a mental illness” or “I am a person with depression”) rather than adjectives (e.g. “I am mentally ill” or “I am depressed”). The idea is that identity-first language using adjectives implies that the person is nothing but the adjectives.

However, not everyone identifies themselves using person-first language.

Where I really see a weakness in person-first language is that we use identity-first adjectives to describe positive and neutral characteristics. I am intelligent, educated, brown-haired, female, Canadian, and mentally ill, but the only one of those I’m not supposed to say is the last one.

If someone assumes that being mentally ill defines me as a person, that’s not a matter of grammar, because you wouldn’t assume the same thing with “brown-haired.” It’s the nature of stigma that deviant identities are seen as all-consuming. If someone has a problem with me because I’m mentally ill, that has a lot more to do with the stereotypes in their minds rather than the fact that I say I am “mentally ill” instead of “person with a mental illness.” Changing the wording doesn’t address the underlying issue; it just sweeps it under the rug where it’s less visible, but still very much present.

Mental illness stereotypes - person in a straitjacket

Mental Illness Stereotypes

Stereotypes are social knowledge structures that capture social knowledge and attitudes about members of a particular group. This becomes a problem when people rigidly apply stereotypes to all members of a group. While there may be a grain of truth in some cases some of the time, mental illness stereotypes do not accurately represent the population of people with a mental illness as a whole.

Common mental illness stereotypes: violent, unpredictable, unreliable, incompetent, weak character

Common stereotypes associated with mental illness are that we’re:

  • Dangerous
  • Unpredictable
  • Untrustworthy
  • Unreliable
  • Lacking control/willpower
  • Weak character
  • Responsible for causing our own illness
  • Incompetent

Health care professionals may also have stereotypes about what a “good patient” should look like. These tend to relate to the incompetence stereotype, and the notion that patients shouldn’t have autonomy because they need others to make decisions for them.

While stigma and stereotypes reduce us down to only one thing, i.e. mentally ill, we are so much more than that. Being grounded in an awareness of your own many identities and social roles can help with deflecting stigma away from the whole self and framing it as something arising from society’s attitudes towards that one specific mentally ill identity.


The Violence Stereotype

One of the most common, enduring, and damaging stereotypes about mental illness is that mentally ill people are chronically dangerous and violence-prone. This stereotype is particularly associated with psychotic illnesses like schizophrenia.

This stereotype, which the media regularly reinforces, evokes fear, leading to discriminatory behaviours. No matter how attached to it people are, though, the stereotype is not accurate.

The following posts address this:

Structural stigma: hospitals, police, laws, housing

Structural Stigma

Structural stigma can be found in the laws and policies of governments and institutions that limit the opportunities available to people who have a mental illness. These limitations are applied due to membership in a broad group (e.g. everyone with mental illness) rather than factors specific to the individual.

Stigma in Health Care

If knowing better was enough to stop stigma, then it wouldn’t exist in health care. Unfortunately, that’s not the case, and health professionals can be a significant source of stigma. Stereotyping, prejudice, and discrimination in health care can occur on a structural level as well as on the level of individual professionals.

This affects both the mental and physical health care that people with mental illness receive. “Diagnostic overshadowing” is a term that refers to health care providers getting so distracted by a mental illness diagnosis that they fail to recognize physical health issues (sometimes very serious ones) that a patient has.

These are some of the blog posts on MH@H that address stigma in health care:

There’s also significant stigma associated with health professionals who themselves have a mental illness. I write about this issue and my personal experiences in this post on The Health Professions Act and the Fight Against Stigma.

Further reading:

An Example of the Power of Advocacy

Serenity Integrated Mentoring was a program adopted by almost half of NHS Trusts in England. It involved pairing high emergency service users (mostly people with borderline PD and a history of sexual abuse) with a police “mentor.” Under SIM, patients could be refused emergency services, including at an A&E (ER) after a suicide attempt.

A grassroots coalition of mental health service users and allies called StopSIM forced the NHS to stand up and take notice, in a remarkable example of the impact people with mental illness can have when they come together.

This post on StopSIM’s campaign addresses both the serious problems of SIM and the impact of StopSIM.

Recovery-Oriented Practice

Another way to address stigma among health care professionals might be a shift toward recovery-oriented practice, which is an approach to mental health care that emphasizes hope, choice, empowerment, and self-determination, and frames recovery as an individual journey rather than the absence of symptoms (i.e. remission).

This is very different from the incompetence stereotypes and pessimism for recovery that often play a part in health professionals’ stigmatized attitudes. However, lip service to recovery-oriented practice while holding onto stigmatized beliefs isn’t good enough.

These sites have information on implementing recovery-oriented practice:

Funding Mental Health Care

One way that structural stigma shows up is in the underfunding of mental health care. Mental health care and research have not kept up with the resources allocated to physical health. However, investing in mental health actually makes good financial sense. Various organizations have laid out strong economic cases for investment in mental health care, including the Mental Health Commission of Canada, the UK’s Centre for Mental Health, and the World Health Organization.


Law Enforcement

Why have police become the de facto emergency mental health service? Mental illness is not a crime, yet far too many people have police, and even handcuffs, involved when they’re in crisis and require mental health care. This is traumatizing for mentally ill people, plus it’s likely to be stigma-reinforcing for members of the public witnessing this. The Mental Health Commission of Canada published a report in 2011 that sheds light on the often difficult nature of mentally ill people’s interactions with police.

Perhaps defunding the police is part of the answer, including shifting responsibility for non-violent mental health crisis response over to the health care system. Having armed police showing up unannounced to do wellness checks” is not a therapeutic intervention.


Correctional System

People with mental illness are over-represented in jails and prisons. This phenomenon has developed since deinstitutionalization beginning in the 1960s dumped large numbers of people out of psychiatric hospitals without adequate community supports. This has been referred to as transinstitutionalization.

The term “criminalization of mental illness” has also been used to describe people with serious mental illness getting caught up in the criminal justice system for minor nuisance offenses that could better be addressed by mental health treatment and better social supports, including housing.

These sites have more information on this issue:


Employment

People who have a mental illness have higher than average levels of unemployment, and they can face significant challenges in the workplace. Decisions around disclosure can be very difficult because of the potential for stigma.

The stigma reduction toolkit that accompanies A Brief History of Stigma has a module on workplace issues, which includes information on accommodations for mental illness-related disabilities. The Mental Health Resource Directory also has links to workplace mental health resources.

Various organizations have put together business cases for investing in workplace mental health, including:


Social stigma: Outline of a woman's head with the words "we judge because we don't understand"

Social Stigma

The COVID pandemic has put mental health on more people’s radar, but will that bring about a change in stigma once restrictions are over? Unfortunately, I’m not convinced that it’s not going to have much of an effect when it comes to more serious forms of mental illness.

One way that stigma manifests is as a desire for social distance. In some rather surprising statistics from 2008, 55% of Canadians said they would be unlikely to marry someone with a mental illness, 46% saw mental illness as an excuse for bad behaviour, and 27% would be afraid to be around someone who was mentally ill. Those numbers seem incredibly high for not all that long ago.

NIMBYism (Not In My BackYard) is another manifestation of the desire for social distance. This can be a major barrier to creating more supportive housing. Stigma can also make landlords reluctant to rent to potential tenants who have a mental illness.

The narcissistic personality disorder and narcissistic abuse phenomenon that’s all over the internet makes an interesting example of stigma being not only condoned but encouraged. Emotional abuse is clearly a bad thing; however, the way that abuse is framed as inherent in a certain mental illness and the amount of armchair diagnosing going on seems like an awfully slippery slope.


Problematic Attitudes About Mental Health & Illness

  • Toxic masculinity messaging tells men that they need to “man up” and not show emotion or weakness.
  • Some people believe that addiction is a choice and a moral failing rather than an illness.
  • Some people attribute mental illness to flaws in families and parenting. Collectivist cultures are more likely to view mental illness as reflecting negatively on the family.
  • Within some religious communities, there are expectations that faith and prayer are enough to handle mental health issues, and mental illness represents a lack of faith.

In some cultures, people believe that mental illness comes from God or demons/evil spirits. Attempts to manage the illness are religious rather than medical in nature. In some countries, such as Ghana, mentally ill people are sometimes chained to trees for years at a time either by their family home or at prayer camps. The World Health Organization has made some progress addressing this, but there’s still a long way to go.

In Somalia, a traditional belief is that hyenas can scare away the evil spirits that are thought to cause mental illness, so mentally ill people are sometimes put in cages with hyenas.


Mass Media

The news and entertainment media can play a major role in perpetuating stereotypes, especially the mentally ill = violent stereotype. Several organizations have put together media reporting guidelines to support responsible reporting related to mental illness, including:

Films also play a role in perpetuating stigma related to mental illness and different forms of treatment. Documentaries like A Prescription for Murder and Take Your Pills promote negative attitudes about psychiatric medications. Electroconvulsive therapy is another treatment that’s associated with significant stigma, and public attitudes tend to be heavily influenced by One Flew Over the Cuckoo’s Nest, which is not a realistic depiction of modern ECT.

Learn more about stigma

Learn More About Mental Illness Stigma

These are my top three picks for books on mental illness stigma:

A book from the National Academies of Sciences, Engineering and Medicine titled Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change is available to read free online.


Anti-Stigma Training

These resources offer anti-stigma training targeted at health professionals:


TED Talks

In this talk, Sangu Delle addresses the stigma faced by African men experiencing mental health problems. He shares the results of a Nigerian study, in which 34% thought mental illness was due to drug use, 19% thought divine wrath was the cause, and 12% blamed witchcraft.

In this powerful talk, Max Silverman speaks to the ways in which people treat mental illness differently than mental illness.

In this passionate, high-energy talk, Ruby Wax uses humour to address common stereotypes and misconceptions about mental illness.

You can find more quotes on mental illness stigma here.

Together we have the power to stop the stigma!

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