In the realm of global mental health, a movement toward equity and justice is gaining momentum, with a focus on recognizing and compensating the unique expertise of individuals with lived experience of mental and emotional distress and/or psychosocial disabilities.
A new article by Claudia Sartor of The Global Mental Health Peer Network demands a critical reform: equitable pay for individuals with psychosocial disabilities who contribute their expertise to the Movement for Global Mental Health.
Sartor’s recent article, grounded in the principles of human rights and equity, argues for a reform that is both moral and pragmatic: the expertise derived from the lived experience of mental health conditions should be compensated on equal footing with traditional professional expertise. This demand challenges a persistent inequity within global mental health, where the invaluable insights of individuals with firsthand experience often go uncompensated, a situation that Sartor deems both unjust and detrimental to the cause.
“Despite the established consensus on the experiential value of the expertise of people living with mental health conditions, there remains a gap in acknowledging their monetary value in the global mental health sector in service delivery and co-production of projects and programs. Therefore, reducing opportunities for lived experience advocates to drive systemic change and make recommendations for positive change,” Sartor writes.
“Appreciating the current evidence on international law and human rights instruments, people with lived experience and peer-led organizations continue their advocacy efforts for equal and fair treatment of persons with disabilities, including psychosocial disabilities, for reasonable, fair, and equal remuneration for work done.”
Her argument aligns with international human rights directives, such as the United Nations Convention on the Rights of Persons with Psychosocial Disabilities, framing the inclusion of lived experience not only as beneficial but as a fundamental human right. Sartor illustrates that meaningful participation by individuals with psychosocial disabilities can enrich policy, enhance service delivery, and foster more resilient and rights-based mental health systems.
The disability-justice movement has long advocated for the inclusion of service users and people with psychosocial disabilities. Sartor’s work underscores the need for equitable pay and decision-making power for those with lived experiences. This holistic approach insists on their involvement in every aspect of advocacy work, from the drafting of policies to the design and evaluation of programs.
This emphasis on equitable treatment resonates with recent findings from the World Health Organization and The Lancet Commission, highlighting the need for increased leadership from those with lived experiences. Such recognition heralds a transformative potential for the mental health sector to empower rather than merely serve those with psychosocial disabilities.
Linking the recognition of lived experience expertise with critical legal instruments, including the Universal Declaration of Human Rights and the International Covenant on Economic, Social, and Cultural Rights (ICESCR), the article reinforces the principle of equal pay for equal work. It calls for a rights-based approach to health that is in harmony with the 2030 Agenda for Sustainable Development and Universal Health Coverage, advocating for no one to be left behind.
The principles for including those with lived experiences in decision-making emphasize creating an environment of mutual respect and trust, where participants feel valued for their skills and dependability. Openness and clarity about the project details and engagement processes are key, as is ensuring a non-discriminatory and inclusive atmosphere. True inclusion means avoiding tokenistic gestures and instead promoting genuine diversity and equality across all demographics, such as age, race, gender, and religion.
Accommodations should be flexible to meet participants’ needs, especially those related to mental health, to enhance productivity and involvement. Empowering participants means involving them from the project’s beginning, valuing their input, and maintaining clear communication about expectations, timelines, and deadlines.
The Global Mental Health Peer Network (GMHPN) is at the forefront of championing equal pay for those with lived mental health experiences who contribute to the field. The organization is dedicated to enhancing the leadership abilities, empowerment, and development of these individuals on a global scale.
Several members from GMHPN’s leadership committee from various countries have expressed how being compensated has impacted them. For example, Muskan Lamba from India pointed out the necessity of acknowledging the cultural diversity of those with lived experiences:
“Our world is becoming increasingly culturally diverse, and it’s really important to factor in the socio-cultural backgrounds of people with lived experience while engaging them in projects. Society and culture massively impact people’s lives and well-being, deeply intertwining with—their worldview, decision-making abilities, interactions with others, language, identity, and the social and cultural stigmas that often come attached—all of which can enable a person to propel a project forward, or hold them back in their potential.”
Sartor’s article brings to the fore a critical issue: recognizing the lived experience of mental health conditions as a unique and valuable form of expertise deserving of equitable compensation. This recognition is essential for fostering an inclusive, equitable, and empowered mental health sector. The article concludes with a note of optimism, anticipating that with strategic planning and commitment to these principles, transformative change on a global scale is within reach.
Sartor C. (2023). Mental health and lived experience: The value of lived experience expertise in global mental health. Global mental health (Cambridge, England), 10, e38. https://doi.org/10.1017/gmh.2023.24 (Link)
Editor’s note: this post was originally published on our sister site, Mad in America, and is reposted with permission here