The unheard voices
The 10th December is Human Rights Day, and this year the UN is committing to a year-long campaign to shine a light on the inalienable and inherent rights of global citizens -- now, and always: “Our Rights. Our Freedoms. Always.”
This timely campaign fits well with the renewed intentions stated at the recent 4th biannual Global Mental Health Summit, hosted at The Tata Institute of Social Science, Mumbai, India. The Summit took place on 28-29th November in collaboration with the Public Health Foundation of India, The Banyan and The Banyan Academy of Leadership in Mental Health (BALM) as a part of the Movement for Global Mental Health (MGMH). The overriding message of the Summit was "There is a critical need for the voice of people living with mental disorders to be heard", and this message was powerfully portrayed through the arts.
MGMH was founded in 2008, following the Call for Action published in the Lancet series on global mental health, and is a network aiming to improve services for people living with mental health problems. Human rights is a fundamental principle underlying this intention; and this principle was effectively reinforced during the Summit. The focus of this year’s Health Summit, “Nothing About Us, Without Us”, was driven by persons living with mental health issues and disabilities.
The Summit served as an engaging platform through which people with lived experience told their stories. Attendees were treated to dialogue, plays, dance, yoga and much more, in order to portray individual people’s stories. Of particular note, one afternoon event consisted of a ‘forum theatre’. Through this unique theatrical method, the audience first watched a play, spoken in two languages, where two different stories of people accessing mental health care services were portrayed: the first took place in a clinic, the second within a community - and at home. After the first scene, audience members were invited to come on stage and take the place of one of the actors, in order to try and overcome some of the barriers to accessing care that had been represented. The difficulty that audience members experienced when “acting” in this scene worked to very effectively highlight challenges faced by people with lived experience, their families, as well as health providers.
“We need to empower ourselves, and not rely on others to empower us”
Challenging barriers: Language
One of the big challenges faced during the Summit was the difference in languages spoken between some individuals expressing their experiences, and other global mental health stakeholders. These barriers can also be translated to the broader global mental health community, where the language of individuals with lived experience often varies drastically from the scientific or international languages of researchers, practitioners and policy-makers.
This presents many challenges, for example the explanation of basic instructions from doctors to their patients, such as how to take medications and what side effects might be experienced. Due to the lack of appropriate and accessible language being used to convey simple messages on treatment and care, individuals can feel isolated, lost and vulnerable. It is therefore critical that language and practices are used appropriately to ensure that treatment and care are accessible for those who need it - this barrier must first be overcome before other challenges can be addressed.
Despite these barriers, attendees left with a clear message: there’s a need for the community of people living with mental disorders to “step forward and share their stories, otherwise other people will never understand”.
“I was nameless, homeless, and hardly a person because of my label of mental illness”
It was also clear from the summit that we, as a global mental health community, do not do enough to realise this need.
Providing a platform for unheard voices
At MHIN, we are dedicated to provide a platform for every global mental health stakeholder, including service users, to share their ideas and experiences. Many of the ideas discussed in MHIN’s World Mental Health Day blog series on the subject of dignity were echoed in the talks at the MGMH summit, as evidenced by the series of quotes stated by people with mental health illness speaking at the conference, and are presented in this blog.
More importantly however, out of this Summit came a dedicated committee who plan to create an annual forum to ensure that service user voices are rightfully heard, specifically within South Asia. This is a step in the right direction to give people with lived experience a voice, a platform and a position in which to speak.
“I want to go on surviving, and actually live a fulfilling life”