By Javeed Sukhera, Western University, first published in The Conversation
Every year, Canada has a conversation about the stigma of mental illness. We tweet and we talk. We share stories and break the silence. Yet, this year we are all bearing witness to the plain fact that our current approach to stigma reduction is not working.
The tragic story of David Pontone is an example of our collective failure. A video of him crawling on the hospital floor highlights the human cost of stigma within our hospitals and health-care system. He shared that after disclosing a history of bipolar disorder, he felt his concerns about physical symptoms and excruciating pain were not given the attention they deserved.
In my own research and teaching, I have heard countless stories that are similar to Pontone’s. I have heard of patients being dehumanized and denigrated when they build up the courage to ask for help. I have witnessed patients waiting for days in a hospital hallway for an inpatient bed. I have watched organizations justify discriminatory and prejudicial violence prevention policies that cause harm towards individuals with mental illness and substance use disorders.
We know that stigma is socially constructed. Historically, stigma referred to a discrediting label that may be applied to an individual to mark them as deviant or discrepant from the norm. Through labelling, devaluation, mistrust and further discrimination, stigma perpetuates inequities in care.
The current approach often focuses on stigma as a social process that occurs within individuals. Unfortunately, many stigma reduction efforts struggle to produce sustained outcomes. Part of the reason for this is that approaches typically focus on social stigma related to labelling and stereotypes. We neglect the structural forms of stigma that are baked into the system.
Structural stigma refers to inequities that are manifested through rules, policies and procedures within organizations and society at large. Structural stigma is reflected through systems that treat people with mental illness and addiction as less treatable and less deserving of care. It is further manifested through cycles of blame, shame and mistrust for individuals who seek help for their mental illness or addiction.
An example of addressing structural stigma in our own research involved co-designing training and policy change with those who have experienced harm and mistrust in the system. We brought together youth with lived experience of mental illness along with health professions’ students such as those in medicine and nursing to create the Shared Humanity Project that provides digital tools for health professionals and youth to break cycles of stigma.
We have also explored structural stigma towards people who use drugs and learned that stigma can be built into policies, such as those that abide individuals leaving hospitals against medical advice rather than offering harm reduction programs such as supervised consumption sites. Stigma is also reflected in the criminalization of mental illness and substance use and in how we design spaces for care.
Dismantling structural stigma requires recognizing that stigma is baked into all aspects of the system. To address structural stigma, we must advocate for structural change. Such change involves equitable funding for mental health and substance use disorders. It involves ensuring that those who need help can access it when they need it. It requires hospitals to shift away from coercive approaches that treat individuals with mental illness and addiction as less than human.
Most importantly, addressing structural stigma requires that we create space for those with lived and living experience of mental illness and addiction to lead. Those of us who work in health care must recognize that we are both part of the problem and part of the solution.
Although we can continue to bring stigma out of the shadows and encourage those who are suffering to speak up and ask for help, we must ask ourselves if we are creating the kind of system that they deserve. Talk is great, but it’s time to roll up our sleeves and get to work.