After a decade in international development and peacebuilding, last year I started working in mental health in the nonprofit sector at the Canadian Mental Health Association (CMHA) National Office. I’ve observed many common themes and best practices from both fields, particularly when it comes to designing, carrying out and evaluating programs. One important theme is the value of including the voices of People with Lived Experience (PWLE) in planning and operations.

Many sectors have worked, to varying degrees, to empower and harness voices that have been marginalized by systems, stereotypes, and stigma: in particular the research sector, academia and the Canadian Public Service. The International Association for Public Participation (IAP2), among others, provides a helpful tool for measuring participation and influence along this spectrum: inform – consult – involve – collaborate – empower/co-create.

Arguably, inclusion of these voices has – or at least should have – a special place in the charitable and nonprofit sectors. Charities and nonprofit organizations, like the ones where we work, predominantly function to support those in need, address systemic injustices, and create a better world. These organizations, perhaps more than others, have a specific responsibility to involve those directly impacted by an issue, like mental health, poverty, injustice and others, in their mission work. In recent decades, many more efforts have been made to decolonize and decentralize the work so as to focus more on the contributions of beneficiaries and service users. This work is about creating partnerships rather than upholding the paternalism of the past. There is, however, still a lot of work to do.

So why are the voices of PWLE so important for informing, co-creating and driving our work?

First, system users, clients, beneficiaries, and PWLE are impacted by the very programs that were designed and developed for them in the first place.

Second, including PWLE can help correct the wrongs of the past – and those that endure – namely marginalization, paternalism, colonialism, neocolonialism, and more. To do this well, it is critical to include diverse voices, particularly Indigenous and racialized voices, in this process.

Third, in order for systems to change and to truly partner with PWLE, they must direct how we develop, organize, carry out, and evaluate our work, and come alongside as co-creators and implementers.

Movements for lived experience in mental health

The movements to include people with lived or living experience with mental illnesses and substance use challenges have deep roots in Canada and around the world. I say movements and not movement, because they are many! They are broad and diverse, and come from the grassroots.

These movements delve into the history of how people with mental illnesses and/or substance use health challenges have been treated over past decades, particularly concerning their loss of autonomy and control. They also address issues of racial and systemic injustice.

These movements illustrate how diverse groups of people have responded, eventually leading to their calls to take back control of their own lives. These movements continue their work to address gaps in equity and over-reach or paternalism in the system. 

1. Lived Experience and Developing Services and Programs

Across the nonprofit sector, the voices of people with lived experience can provide insight into responses and programs that others can’t – and speak to what works as well as what doesn’t. 

Over the decades, the Canadian Mental Health Association (CMHA) has developed multiple resources, guides, and committees, like A Framework for Support and the National Council of Persons with Lived Experience, to help guide how to include people with lived experience in the work, beyond advisory roles. The objective has been to embed their perspectives into the work of CMHA, and the services it provides.

A Framework for Support, for example, looks at several ways to incorporate lived experience. First, it looks at putting the person with lived experience at the centre of the response, within their complete context. Second, it focusses on the unique knowledge and experience that people with lived experience bring to the field of mental health, including our social, policy and clinical knowledge. Finally, it is about building confidence and control for people with lived experience, so that they can be the agents of their own destiny. 

A program that embodies this work is CMHA’s Recovery Colleges. With over 20 programs across the country, and growing, Recovery Colleges offer group sessions centred on mental health recovery. They consist of virtual and in-person learning opportunities, specifically designed for the local community and participants, service users and PWLE. Curriculum experts work directly with mental health professionals and PWLE to design each local Recovery College – so no two programs look exactly alike.

2. Lived experience and righting the wrongs of the past…and present

We’ve heard about the dire conditions that pervaded the asylums and the dominance of the medical profession there. Asylums were closed en masse from the 1960s through the 1970s, but discrimination and concerns about human rights persist, as does a lively debate about involuntary treatment in today’s psychiatric facilities, including in general hospitals. The health care system continues to deprive people of full agency and trust in their own experience. It maintains a kind of paternalistic hold. The mental health system will become accountable when we adopt a rights-based approach to mental health treatment, and we centre the voices of PWLE.

In addition, we need to specifically attend to the unique experiences and treatment of Indigenous and other racialized populations within the mental health system, both historically and in the present. Academic and popular literature increasingly addresses this. Abuses and neglect don’t reside in the past alone. We see wellness checks that end in violence. We see violence and discrimination perpetrated by other police services. It is also particularly dangerous for some populations to disclose a mental illness given public fear that they may be prone to violence. As K.J. Aiello wrote in the Walrus, stigma may be decreasing for some populations because mental health is talked about more openly, but not for all,  with Indigenous Peoples and people of colour, and men, continuing to face particular stigmas.

Across the nonprofit sector, PWLE can speak to abuses of power both past and present and about their marginalization, especially those PWLE who are Indigenous Peoples and people of colour. Their voices must be at the table, influencing decisions and actions.

3. Lived experience and empowerment/co-creation

Judi Chamberlain was one of the key voices in a movement for lived experience in mental health that took root in the 1960s and 1970s. It came to be known as the consumer/survivor/ex-patient movement. In her 1978 book, On Our Own, she delves into her own experience in the mental health system and closely examines alternatives to supports that centre a medical approach. These include services and projects run by survivors and people with lived experience. She focused on the empowerment of survivors and on their ability to create and maintain effective programs.

The questions for us in mental health nonprofits are how can we empower people with lived experience to provide essential guidance, support, and direction, and how can we move to a model of co-creation?

At organizations like CMHA, we need to make the case that community responses are essential and often deal with issues that the medical sector cannot solve alone. Peer support is an excellent example of this work in progress. CMHA trains and guides people with a lived experience of a mental health or substance use health issue to walk alongside others experiencing similar challenges. It puts the work of recovery into the hands of people with lived experience rather than in the medical system and recognizes lived experience as a powerful skill and driver of the work.

If we are truly working to empower voices of people with lived experience, a seat at the table is required. This might mean replacing over-represented voices. But it also requires so much more.

Lessons from the international development sector

A kind of parallel process from the international development sector in empowering voices of lived experience is a movement called “localization” that puts decision-making power for programming in the hands of communities in the Global South. It is gaining momentum.

One important feature of localization is following the lead of those impacted by crises or shocks – putting their voices at the centre of the response. International organizations are usually scrambling, in terms of how to respond quickly and how to respond well, often without necessarily understanding the complex issues and impacts on the ground. Local organizations often know the landscape better and can respond specifically to immediate needs.

When talking about past wrongs in the international development sector we talk a lot about the wrongs of colonization, which mirror issues from the asylum era, namely the loss of control and agency, cruelty, submission, and paternalism. Today, forms of neocolonialism and paternalism in the Global South very much continue despite efforts to help resolve relationships between communities and organizations in the Global North with their counterparts in the Global South. Localization seeks to truly empower those impacted directly in leading programs and responses.

Finally, in thinking about co-creation, in the design and implementation of programming, localization challenges practitioners to ask: how can we move to more of a true partnership model, in sharing the design and implementation of the program in the local and foreign settings? At its core, the localization movement is about fundamentally changing who holds the power and influence and who makes the decisions and designs the programs. It’s so much more than just ticking a box, saying, “Look, we’ve consulted with local communities.” It is a fundamental shift in how we do things.

Conclusion

CMHA’s statement that “lived experience guides us,” serves as a beacon to direct and lead our work, both present and future. It raises important questions about how the work gets done and is a measure of accountability. At CMHA National, we’re exploring the expansion of lived experience advisory groups and exploring other ways to incorporate the voices of people with lived experience across the CMHA federation. It’s a long process, but it’s important work and the rewards are substantial. CMHA, and organizations across the nonprofit and charitable sector, still have a lot of work to do. But it’s happening and it’s exciting.

Rebekah (Bekah) Sears has worked in the non-profit sector for her entire career. Since May 2023 she has been the Lived Experience Specialist with the Canadian Mental Health Association (CMHA) National Office. Before that, she worked for over a decade on international development, peace, and policy, where she engaged regularly on mental health and trauma within the sector. She is from Fredericton NB, but currently lives in Ottawa. Connect with her on LinkedIn and read one of her past articles.