Earlier this year Dr. Nicola Wright – a psychologist with the Integrated Schizophrenia Recovery Program – asked the members of The Royal’s hearing voices group what they thought about “taking the show on the road” and attending the World Hearing Voices Congress in Montreal as speakers and active participants in their own workshop.
The hearing voices group is an opportunity for individuals to come together, share their experiences, and support one another.
Weeks of proposal writing, emails, meetings, trial runs, and a trip by train culminated in what Wright calls “a recovery movement in action.”
A total of 17 individuals from The Royal attended the conference, which took place in November. Eleven gave presentations, one brought along an afghan she crocheted with a message of recovery, and the rest supported their colleagues and connected with others in the hearing voices community.
According to Intervoice, a non-profit organization that advocates for the hearing voice movement, hearing voices is apparent in two to four percent of the population. Some research suggests this figure may be as high as eight percent.
“Voice hearing is often associated with people having experienced bullying and trauma, developmental trauma and other forms of trauma. The antidote to that – besides therapy – is getting out and living one’s life in a meaningful way and feeling like you’re contributing. And this conference an example of that,” says Wright, who’s been at The Royal since 1999.
Each member of the group had a five- to eight-minute window to speak during a session called “Inspiring Transformation: A Workshop on Innovative Collaborative Recovery-Oriented Approaches to Voice Hearing.”
“We all get so much out of hearing other people’s stories and experiences and I think that’s what we wanted people to understand at the conference in Montreal – how helpful that actually is.”
Wright uses words like beautiful, healthy, healing, and nurturing to describe the individual presentations.
Shazad spoke about spirituality as a way of “living our best value-filled life… and a way for people to not lose hope.” Jackie spoke about “how we were all so different yet we all had so much in common,” and reminded the audience that “every day is a challenge but there’s always beauty.” Andrew – who is now a volunteer research assistant at The Royal – spoke about his lived experience and the challenge of holding down a job. Kirsten spoke about her grandfather, a diplomat, and her great-grandmother, a nurse; two people who heard voices and had fulfilling lives.
Dr. Tom Fogl was also part of the group from The Royal who attended the Hearing Voices Congress in Montreal.
“I think the amazing thing is that people sharing their stories with other people is very healing for everyone,” says Fogl, a psychiatrist who has been part of the Schizophrenia Recovery Program at The Royal since 2005. “We all get so much out of hearing other people’s stories and experiences and I think that’s what we wanted people to understand at the conference in Montreal –how helpful that actually is.”
Not only was the conference a safe space for individuals to share their stories, but there was also an opportunity to attend some of the other sessions.
“When I listened to the presenters – whether they were patients or other experts – you really learned a lot. It’s really beneficial to hear everybody, because you learn a lot to improve yourself,” says Shazad. “We think that we’re isolated and alone… We don’t realize that it’s a common, human, condition. So it makes you feel better that it’s not just you, everybody’s having these same types of emotions, feelings, and thoughts.”
The international hearing voices movement is about education and destigmatization, but it’s also about hope.
For Andrew, the conference served as a welcome reminder of an “international community of academics, of physicians, social workers who are all helping people like us.”
“They appreciate what we go though,” he says. “They try to help us survive this and make our lives better. That they would even have an international conference like this, it just makes me feel positive about hope for dealing with this issue. It’s no longer just a private struggle, it’s a worldwide phenomenon and a lot of people are paying attention.”
Of course, participating in a conference like this involves fees and transportation, and Wright is grateful to the Royal’s Foundation.
Members of Wright’s multidisciplinary group – which includes experts by experience, health care professionals, researchers, volunteers, and students – are keen to expand their experience and share their stories and they’re submitting abstracts and writing proposals for other upcoming conferences.
The principle behind these efforts, however, extends far beyond giving presentations. Among the medical community, there is a growing understanding that deeper engagement with people who have lived experience is the key to meaningful research, service delivery, and system change.
“We’re not just looking at co-designing research, we’re looking at co-designing the question, the treatment approach, how we implement that treatment, how we evaluate it, how we talk about it, and share that knowledge,” says Wright.
“It changes the whole trajectory because it’s no longer ‘I’m just a patient’ or ‘I’m just someone with schizophrenia’,” says Wright. “It’s a whole person approach – seeing people for who they are – their strengths, their qualities, their contributions, and their values. All the beauty.”