Breaking down stigma on the road to recovery

Addressing inequality to change how we view mental health

From the early days of the asylum, psychiatry has had a long, and often dark, history.

The previously used asylum model placed patients under indefinite custodial care. Later, the development of more treatment options in the field of mental health brought on the deinstitutionalization movement of the late 20th century. This shifted the focus of psychiatry to treating and managing symptoms – what is known as the medical model. Patients were moved out of mental institutions, but the diagnosis remained tied to the patient like a lifelong label.

Recovery did not enter the mental health scene until approximately 10 to 15 years ago. The recovery based mental health movement is a complete redefining of the system; treatment becomes less focused on the symptoms and more focused on the individual. What becomes important is that the individual be able to live a hopeful and contributing life despite their diagnosis.

In a 1996 article in the Psychiatric Rehabilitation Journal, psychologist, researcher, and activist in the mental health recovery movement in the U.S. Patricia Deegan, published an article where she outlined her own journey towards recovery and explained its goals and importance. In the article, she describes recovery as “[being] rooted in the simple yet profound realization that people who have been diagnosed with mental illness are human beings,” adding, “many of us who have been psychiatrically labeled have received powerful messages from professionals who in effect tell us that by virtue of our diagnosis the question of our being has already been answered and our futures are already sealed.”

Pam* is the mother of a schizophrenic son who was hospitalized for a number of years in his childhood. In an interview with The Daily, she discussed the stark contrast between care when he was hospitalized at the Allan Memorial Institute and then at the Douglas Mental Health University Institute (Douglas Institute).

She described the two and a half years at the Allan Memorial as years strewn with horrible side-effects of medication and lack of communication. “The illness itself was very bad,” recalled Pam, “but I think what really bothered me the most was the whole attitude and culture on the unit. If you go on a unit where patients are physically sick, you see nurses going around being sympathetic to patients – you see care. What I felt on the unit was that there was very little care.”

When Pam finally succeeded in transferring him to the Douglas Institute, she noticed a significant difference in attitude from the staff. Her son was immediately enrolled into a program to address his cigarette addiction, and there was a willingness to address her concerns which was not present at the Allan Memorial. In this new environment, Pam finally began to see improvement, which led to an eventual release from hospitalization.

According to Mimi Israël, a psychiatrist at the Douglas Institute, recovery means a shift in culture. “The medical model produced a certain culture. And the asylum model produced a culture. The Douglas has both because it used to be an asylum.”

“Moving away from the medical model and the asylum model – to turn that around is going to take a while.”

Recovery means a transformative change, stated Myra Piat, a researcher at the Douglas Institute and an assistant professor in the department of Psychiatry at McGill University. Piat is involved in knowledge translation and implementation of mental health recovery in Quebec and Canada.

When asked about the success of implementing recovery based mental health at the Douglas Institute, Piat reflected, “There have been efforts taken, but the efforts have been first order change, which are good in itself, but the core values and structures are not transformative.” Piat highlighted a number of key elements required for transformative change to occur: addressing the stigma and discrimination surrounding mental health and its practice, allowing greater involvement of peer experts (individuals who have lived experience with psychiatric diagnoses), and internalizing the core value that the client is the expert.

Frances Skerritt, a peer expert at the Wellington Centre – a community support and psychosocial rehabilitation centre affiliated with the Douglas Institute – recounted her experience and involvement with the centre’s recovery program. Skerrit had initially come to the Wellington Centre for her own benefit. After a while, she realized she was helping others and no longer using the service for herself. From there, she was invited to become a peer expert, taking her on a whirlwind journey which brought her to where she is today.

For Skerritt, the road to becoming a peer expert helping over 500 individuals, both inside and outside the Wellington Centre, was not an easy one. “When I first came to the committee, I didn’t speak. Because when I spoke for years, people didn’t listen,” she remembers. Additionally, when she first entered her role less than 10 years ago, she had no idea what the title “peer expert” entailed; there was no job description, so she developed her service from the bottom up. She went around asking people what they would want from such a service. She spread the news of her service through word of mouth, and people eventually started coming. “No one had ever heard of the word ‘recovery,’ recalled Skerritt. “It’s not even that it’s not widely accepted – it’s that it doesn’t go to the people who should actually know about [it] – the people who use the service.”

Through her interactions with individuals with mental health diagnoses, she has seen the dehumanizing effects of the medical model. “Imagine a person telling me I helped them see themselves as human again. I hear it all the time. And it doesn’t make sense to me. They were never not a human. And people keep talking about becoming a part of society. I didn’t know I wasn’t a part of society.”

We live in a society filled with labels. From race to socioeconomic status, categorizing individuals has become second nature. And a label tied to mental illness diagnosis like “schizophrenic” is one that sticks. It seeps into a person’s identity, and becomes who that person is – until they forget who they are outside the diagnosis. By giving patients power to express their wants, hopes, and dreams, the stigma and discrimination are shed, and the individual’s road to recovery becomes clearer.

From Piat’s perspective, in a recovery oriented system, “We need to recognize people as full citizens capable of decision making. [We] need to fight against stigma, inequalities in housing, education, and employment.” Recovery is a key component of “Changing Directions, Changing Lives” – the mental health strategy for Canada – released in May 2012.

Paradigm shift, transformational change, shifts in culture – recovery in mental health has many faces. Proponents of recovery from all areas attest to the success they see with the new system, and are moving to spread the movement far and wide. “Everything needs to change,” said Skerritt, “from top to bottom. They have activists outside, but we also need people inside. It’s not going to be one thing that changes the system. It’s going to be a whole bunch of things.”

*name has been changed for privacy