My colleague Laura O’Grady recently blogged about her reflections on the HIV / AIDS movements and how far its come in 25 years and how much further it has to go. With the 2010 world AIDS conference having recently wrapped up in Vienna, it is worth considering how something that was virtually unknown 30 years ago (AIDS) has become arguably the most high profile health issue on the global stage.
One of the touchstones of progress has been the way that HIV-related stigma has eroded over time. It still has a ways to go as the picture above illustrates*, but focusing on the positive aspects, its easy to see that change has come through the HIV / AIDS movement:
One of the most important shifts in the AIDS movement was the legitimacy and status of those infected. How many remember the Four H club: homosexual, hemophiliac, Haitian and heroin user? The shift away from this stigmatizing labeling was a slow process. A handful of people publicly disclosing their status, many (e.g. Ryan White, Rock Hudson, Elizabeth Glaser) because they were forced to so. No doubt this helped bring a face to the disease. But there was still much stigma, especially centred around transmission. Camps between those who “got it the right way” (e.g. by transfusion) separated themselves from others who engaged in behaviour considered deserving of certain death. It was a great time for the “holier than thou” crowd.
Dr. O’Grady makes the distinction between getting HIV “the right way” and those that might have “deserved” it because of their choices. I couldn’t help but read this post and consider the parallels to mental health and the role that stigma plays in governing our interactions with the various conditions and people who wrestle with such conditions. Although much has been written about how to change behaviour related to HIV risk (here, here, here and here for examples), the focus of change is too often directed at individuals. Individual change is a necessary, but not sufficient condition for population health improvement and one of the more weaker forms of intervention. Studies looking at individual-level change rarely account for even half of the variance in change explained using traditional models. Systems change is where it is at for true impact and HIV / AIDS shows this more than anything. A movement is needed and even then, it is slow going.
Mental health is a puzzle. On one hand, the absence of any clear ‘mode of transmission’ has always made mental health a more insidious and mysterious problem to wrestle with. Historically-rooted myths have abounded about ‘catching’ mental diseases, but that largely subsided in the 20th century and was replaced with a true individual-focused model. This new approach put blame on the individual, or the family, as the root cause of mental illness. This new vision for mental health stopped short of placing those individuals in a context and thus, ignored the role that factors such as work demands (or under-employment or unemployment), poverty, racism, social support, gender inequity, access to services and other social determinants play in contributing to mental wellbeing.
What we are now learning is that the brain and society are both complex adaptive systems, suggesting that the moods and thoughts emerging from such systems might best be understood from the lens of complexity science and systems thinking. If this is the case, then the entire issue of mental health needs re-thinking in how we address the problem. Taking a systems approach leads to very different strategies and questions about where mental health problems emerge from and how they are best addressed. It also means that we’re all responsible, whether we like it or not.
HIV/ AIDS, even though the disease mechanisms are now well known and indicative of a complicated process, the social context in which AIDS exists is truly complex. There are the myriad overlapping issues of fear of the others, gender inequality, homophobia, racism, poverty, geo-political discrimination, the community vs. clinic debate among many others that make tackling HIV a challenge because the context is so varied and global.
Like HIV / AIDS, we need a movement in mental health because of the same issues. The challenges of understanding mental health in a globalised and multiculutural climate were eloquently discussed on TVO’s The Agenda with guest Kwame McKenzie from the Centre for Addiction of Mental Health in Toronto. He pointed to the research that shows how conditions that are more commonplace in North America such as depression have no parallel in some cultures. Just like HIV, the way in which depression is understood and treated is vastly different from place to place, even within Western countries that are often thought to be similar.
Movements occur when diverse actors come together under a common (but not always unified) banner to advance issues of shared importance. Like HIV/AIDS, there are great divisions within the mental health community about certain definitions and approaches to addressing the problem, but there is also widespread areas of agreement and a shared desire for a plan. Is now the time? It might be worth considering what HIV / AIDS community did to serve as lessons for those of us striving to advance mental health promotion.
1 thought on “Change as a Social Movement: Lessons for Mental Health?”
Thanks for mentioning my article in your post.
Interestingly enough I have tried to work with the mental health movement both as a researcher and an advocate. Since these issues tend to go hand in hand with me it became quickly apparent that what we did in the AIDS movement (e.g. advocacy, peer-to-peer collaborative learning (www.catie.ca), perhaps the earliest example of knowledge translation for patients (Sean Hosein’s excellent publication, “Treatment Update” and many other initiatives) was not likely possible in mental health.
I spoke at length with colleagues of mine who had worked in HIV and were now in mental health. Admittedly this was the population referred to as “severe mental illness” in which their health is quite compromised. We concluded that the number one barrier was that they were just not able to speak for themselves. There was no face to the disease on a DAY to DAY basis like we had in AIDS. Those who are stabilized with meds move on with their lives. No peer to peer support or community-based research.
Sure, many famous people have disclosed that have mental health issues but as the saying goes, “those who are mentally ill with money are “eccentric” and those without are “crazy”. This can also distract from your credibility (i.e. “That guy’s not right in the head, can we really take his theory on complexity theory and social networking seriously”?). Sadly this type of discrimination and stigma still exists.
The people my colleagues from HIV work with in the mental health movement are, in many cases, struggling with fundamental issues like stable housing, enough money to live on and finding some quality of life. Many have lost contact with their friends, family and other supports due to their illness. See in particular Jen Poole’s work in this area: http://www.ryerson.ca/socialwork/faculty/bios/poole.html. I’ll never forget her presentation, “A home, a job, a friend? Policy, place and the recovery vision for mental health” http://www.hctp.utoronto.ca/EventsSeminarResults.asp?pRid=38. Outstanding insights into living with mental illness.
I somehow doubt those living with severe mental illness represented in this work will be attending Liberal party fundraiser dinners any time soon 😉 Those who find medications to treat their symptoms tend to move on. Or perhaps they are at these types of dinners but have chosen to say nothing.
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