Part 1: Origins of Peer Support for Individuals with Mental Illness

Peers have gained increased visibility and prominence in today’s behavioral health system. In this six-part blog series, we will discuss how the peer movement evolved in mental health and substance use care. We will also share the current state of the peer movement and what the future looks like for these services. In the first part of the series, we begin by looking at the interesting history of peer support for individuals with mental illness that dates back more than 200 years.

The terms recovery and peer support are common in today’s behavioral health vocabulary, but their presence is relatively recent – at least in its current form. Peer support encompasses a range of activities and interactions between people who share similar experiences of being diagnosed with mental health conditions, substance use disorders or both. This mutuality – often called “peerness” – between a peer support worker and person in or seeking recovery promotes connection and inspires hope. Peer support offers a level of acceptance, understanding and validation not found in many other professional relationships (Mead & McNeil, 2006).

According to Davidson et al., 2012, the peer movement’s roots can be traced back to a mental hospital in France in the 18th century. The superintendent of the hospital, Jean Baptiste Pussin was himself a former patient at the hospital. Along with the chief physician Phillipe Pinel, the two began what was a radical departure from the inhumane conditions often experienced by the mentally ill at the time. Pussin hired many former patients because he found them “disposed to kindness” towards the patients in his care. Because of this change, Pussin and Pinel were able to remove restraints and end the practice of routine abuse typically experienced by patients. The practice of using peer support in mental health care has fluctuated in popularity and implementation over the years. In its current practice, recovery and peer support have successfully shifted the focus from being a patient to being a consumer. Often intertwined, these movements have changed the way people with serious mental illnesses are viewed and treated.

The motivation for this most recent practice started in the late 1980s and early 1990s. A significant driver for people experiencing mental illness, was a reaction to the restrictive attitudes of healthcare providers who believed the prognosis for people with these problems was poor and that they would need to be “taken care of” forever. This desire for people with mental illness to have a say in their own care ultimately formed the slogan “nothing about us without us”.

This shift between patients and their individual providers soon expanded into changing attitudes, revised policies and improved provider awareness about the value of patient input in the clinical process for both physical and mental health encounters.

The move to deinstitutionalize the mentally ill began under President John F. Kennedy with the Community Mental Health Act of 1963. The number of institutionalized mentally ill people had fallen from its peak of 560,000 in the 1950s to 130,000 in 1980. This Act established the importance of the community as the preferred place of treatment for those with mental illness.

However, changing geography is not the same as changing attitudes. For many years community-based care offered only a little more freedom of movement and no more empowerment of seriously mentally ill patients in decisions about their own health care. Instead of “deinstitutionalization,” some authors have referred to this change as “transinstitutionalization.” Talbott (1979) noted, "the chronic mentally ill patient had his locus of living and care transferred from a single lousy institution to multiple wretched ones." In truth, this is a gross overgeneralization because many of the institutions and community-based systems of the time were excellent. However, saying the quality of one institution is better than another institution does not equate to “deinstitutionalization,” so Talbott’s point has some validity. It is probably more accurate to say that patients were “dehospitalized” rather than “deinstitutionalized.”

People with “lived experience” i.e., those who have had mental illness, trauma and other related experiences, were beginning to share their perspectives. Dr. Pat Deegan, Shery Mead, Mary O’Hagan and others began writing about recovery from mental illness, empowerment in psychiatric decision-making and the possibility of living a non-custodial life. Their voices had rarely been heard and it’s fair to say that members of the traditional mental health establishment were at least surprised. The perspective of life as someone with a serious mental illness is well summarized by Mead et al (2014):

“The cultural mainstream defines and decides ranges of “normal”, seeking to have those of us with psychiatric labels blend into those ranges. People labeled with mental illness often fall outside the typical definition of “normal” and do not smoothly blend with the dominant culture. We, as users of mental health services, often referred to as “consumers”, are forced to understand our problems as solely a biological matter. This denies the social and environmental factors that may have precipitated or contribute to the distress. Having been marginalized by this model we have adopted roles as “mental patients.”

As noted previously, the recovery movement began in the late 1980s and early 1990s as a grassroots, self-help and advocacy movement. The term began showing up in professional literature, especially psychiatric rehabilitation literature, in the early 1990s. It grew quickly into an international movement showing up in New Zealand and other European countries shortly after that. The literature began reporting long-term outcomes that would challenge the status quo perception that serious mental illness always leads to an inevitable decline. Instead, the data was showing that multiple outcomes, including full recovery, were achievable. Even for those who had not fully recovered, leading meaningful lives despite serious symptoms was possible.

In the next installment of this series, we will discuss the recent history of how peers have evolved in the United States and how its growth was different compared to other countries, such as New Zealand that also have strong peer support.