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The phrase "nothing about us without us" originated in the disability rights community, and is the title of a seminal 1998 book by James Charlton, in which he argues that people with physical disabilities have been unfairly stereotyped and marginalized, overlooking the untapped potential of millions with much to offer.
In recent years, the phrase has had increasing resonance for people with mental health disabilities. It neatly sums up a radical vision that people with lived experience of mental illness must be meaningfully involved in every domain of mental health activity including service delivery, research, training, and governance.
Such meaningful involvement is considered an ethical imperative, as it can help prevent patronizing and exclusionary policies and actions. However, it also takes advantage of the considerable expertise accrued by people with lived experience of mental illness.
These ‘experts by experience’ have often navigated complex health systems, developed effective self-care strategies and wrestled with stigma and discrimination. They have been there, done that, and got the T-shirt, amassing substantial knowledge in the process.
In this article, I outline four mental health domains where the ‘nothing about us without us’ mantra could be better enacted to the benefit of all who care about community mental health.
Mental Health Service Delivery
People making a good recovery from mental illness can use their expertise by experience to help guide, support and instruct other people in the early steps of recovery: an activity known as ‘peer support’. This can occur informally within devoted peer support drop-in centers such as Laing House in Nova Scotia, a thriving center for youth with mental illness.
Peer support can also occur more formally with paid peer support workers attached to official mental health services including emergency rooms, outpatient units, inpatient units, and rehabilitation centers. Research indicates that formal and informal peer support is a cost-effective intervention that can help facilitate recovery among recipients.
Sadly, peer support remains an uncommon and under-resourced intervention. As such, the further implementation of peer support should be considered essential to enacting the "nothing about us without us" maxim.
Mental Health Workforce Training
The mental health workforce consists of various professions including psychiatrists, psychologists, social workers and the like. These professionals undergo a lengthy education (as well as Continuing Medical Education) almost wholly delivered by clinical instructors.
‘Nothing about us without us’ vis-à-vis workforce training means that people with lived experience of mental illness must be involved in the delivery of education to mental health professionals. This is rarely enacted.
That said, some individual professors are making an effort to integrate experts by experience into training. For example, when I teach psychiatry residents about recovery from mental illness, I invite people with lived experience to co-deliver the session with me. This provides much-needed context and personal narrative to a session that would otherwise be replete with dry facts and figures. Such efforts could be repeated elsewhere.
Mental Health Research
By the same token, much mental health research has been criticized for treating people with mental illness as guinea pigs rather than active participants. This has led to the emergence of new models of ‘participatory action research’, where people with mental illness collaborate as active members of the research team from beginning to end.
These ‘experts by experience’ can be particularly helpful in terms of conceptual development, participant recruitment, data collection, and analysis. This is especially so in topics such as stigma and recovery, where their unique experience-based insights can be well-integrated.
Importantly, peer researchers must be offered the appropriate training, support, and rewards for their participation, including fair payment for their work. This must include involvement in the more prestigious and pleasant aspects of academic life; including co-authoring academic publications as well as attending and co-presenting at academic conferences.
Interestingly, numerous peer-staffed research groups have emerged in recent years which are collaborating with academic researchers on various projects. These include World of Difference (University of Otago) in New Zealand and the Service User Research Enterprise (King’s College London); important initiatives that could be emulated elsewhere.
Mental Health Governance
Mental hospitals, mental health commissions and the like are often led by an executive leadership team and administered by a board of governors. Some have paid commissioners who take a prominent role in the organization.
Interestingly, more and more organizations are recognizing the importance of having experts by experience in governing roles. For example, the Mental Health Commission of Canada Board of Directors includes several ‘experts by experience’. Likewise, the New Zealand Government appointed renowned peer leader Mary O’Hagan as an official mental health commissioner responsible for recovery work.
In addition to high-profile roles, people with mental illness can play a role in intermediate levels of governance and administration. My colleagues and I have been pushing for the inclusion of ‘experts by experience’ on job recruitment committees for new mental health staff and researchers, believing that their unique insights and experience can help in the assessment of candidates. They can also be integrated into management committees of local services and policy committees.
Resources
Numerous resources are available for individuals and organizations attempting to enact the ‘nothing about us without us’ mantra. One international organization is PeerZone, which exists to "leverage the power of lived experience." It has produced numerous helpful toolkits and conducts training and consultation across the world. Another is Peer Support Canada, which works alongside the Canadian Mental Health Association to provider mentorship and certification for peer supporters across the country. Other effective organizations exist in other jurisdictions.
Much is happening, but much remains to be done, in enacting the "nothing about us without us" mantra. There is developing consensus that the implementation of this mantra is essential to providing a just and effective mental health system.
We live in hope that this will be achieved.
