Changemaker Approaches to Mental Health

Changemaker Health Series — Essay №7

How might we own our well-being and help create a culture the nurtures the whole-self?

by Amy Badiani, editing and contributions by Chris Underhill, Lakshmi Narasimhan, Simone Honikman, Vandana Gopikumar

How many people in your daily life — you, your family, friends, and coworkers — may be living with mental health issues?

It may be more than you realize; one in four people across the world will be affected by mental or neurological disorders.

Tragic life incidents — death of a loved one, violence, inadequate access to basic amenities combined with a denial of rights, isolation, and other experiences can trigger mental illness. But we often do not realize that day-to-day stress — a lost opportunity, a conflict, a shattering of hope, a voice unheard — can also have lasting negative effects on our mental health.

Anyone can experience this vulnerability. Let’s acknowledge that.

As Ashoka India Intrapreneur and self proclaimed recovering lawyer Supriya Sankaran, highlights, we need to change the way we think about mental health.

To illustrate perspectives on mental health, consider these statements from people affected by mental or neurological disorders:

‘I feel considerably better and am amazed that I almost abandoned my wife and children during the most difficult part of my illness.’

‘Overcoming a deeply embedded community prejudice of me with mental illness seems more challenging than the illness itself.’

‘Sharing my story has sparked a stark increase in individuals seeking help for mental health and breaking stereotypes.’

‘I am like everyone else. I have abilities as much as I experience challenges and limitations. See me as a whole.’

Along with the insights of those living with mental health conditions, the work of leading social entrepreneurs in health gives us actionable ways to shift our approach towards better understanding and care. These insights are adapted from The Emerging Paradigm in Mental Health; Social Innovation Mapping.

“Who is affected by mental health conditions, and what causes them?” Let’s move from the misconception that a small group of individuals in society are affected by mental illness, to the reality that every human is psychologically vulnerable.

Mental illness is influenced by brain chemistry, genetic factors, social, economic, living standards, and livelihood opportunities. Personality traits may make the person feel responsible and the illness itself may only be attributed to these traits.

Akira Sawa, Director of The Johns Hopkins Schizophrenia Center shares an example that highlights the importance of considering contextual factors beyond personality. “Being an immigrant can bring on chronic stress… there’s difficulty adjusting to a new language… and it’s usually thought that a person might be isolated from the core of their community.”

It is essential to design solutions that tackle the issue at not just a biological level, but also at the psychological, social, economic, and political levels.

“How do we see people with mental health conditions?” How can we raise awareness and empathy that mental health is only one part of one’s identity? How can society place value on the person living a full-life and support this?

Let’s humanize the process. Having a mental health issue should not be the defining characteristic of one’s identity. When you introduce someone, do you start by sharing their issues and ailments or do you introduce them holistically and start with their name, strengths, interests, etc.?

Ashoka Fellow Lisa Brown founded Workman Arts in Canada as she became increasingly inspired with the artistic abilities and potential of her patients. Lisa created an arts production company that helps early stage and mature artists living with mental illness to develop their skills and find commercial commissions. Importantly, the rates these artists are paid are on par with art industry standards.

Lisa reflects on the power of context to transcend stigma: “They were thought to be less than, to be amateurs and basket weavers, as opposed to great painters, singers, or poets. And it’s all a matter of context. If we were to put an art show in a psychiatric facility, people would see that artwork as being psychiatric art. If we put the same artwork in a gallery, you’re not going to know the difference between that art and someone else’s art.” Workman Arts members see themselves — and are recognized as — professional artists and individuals living with, rather than suffering from psychosocial disabilities.

“What is the goal of the system?” How can healthcare providers go beyond treating mental health as a disease to preserving individuals and their place in society?

Imagine a system that is focused on creating an environment where an individual can thrive while removing the symptoms of illness. To achieve this, the system is incentivized to handle prevention, identify problems early, and consider the whole life span of a person. Measures of success go beyond curing the illness, to including the person’s ability to live independently, earn a livelihood, and participate in community life.

The BasicNeeds Model for Mental Health and Development, founded by Ashoka Fellow Chris Underhill, puts the mentally ill and their families in charge of resolving challenges. The system includes building self-help groups, getting the support of community volunteers, livelihood training and development, and ensuring people with mental health conditions can advocate for their own rights. In this system, medical practitioners consider themselves part of a larger system of care and rehabilitation.

How is the system of care structured?” How can we decentralize care so it also includes community members and local institutions?

The community mental health model creates a role for everyone to be involved in care at an individual and institutional level. Support systems are embedded in existing social structure which gives people with mental distress a chance to still live in their community. Medical treatment is decentralized and the community creates a safety net for the person in need.

The Banyan, founded by Ashoka Fellow Vandana Gopikumar and Vaishnavi Jayakumar has successfully demonstrated that one can develop treatment, care, and rehabilitation strategies for homeless and poor persons with mental health issues in low resource settings using both hospital and community based care approaches. The Banyan’s focus is on building a culture of care that promotes inclusion, engagement in socio economic life and interdependence. It serves clients across diverse settings ranging from clinics, hospitals to homeless shelters and the streets, providing recovery based options as well as emergency and long term care in therapeutic and healing environments.

The Banyan’s efforts to decentralize care and include community members and local institutions include recruiting and training peer service providers, activating community level centers as hubs for social care, and utilizing active public places such as cafes, and tourism trails to challenge existing narratives of mental illness.

Who are the decision-makers?” How can people living with mental illness play an active role in decision-making and in their own treatment?

People affected by mental health conditions still have agency to make decisions regarding care and life. They play a vital role in ensuring transparency, protecting rights, co-designing policy services, and providing peer support for those in recovery.

BasicNeeds country offices have played a significant role in national mental health policy reforms in Kenya, Lao People’s Democratic Republic, Sri Lanka, Tanzania, and Uganda. The actual draft mental health policies are called for and reviewed by the people with mental illness themselves. For example, in Uganda BasicNeeds brought together 300 users and carers from self-help groups to review the draft mental health bill and policy. This resulted in the National Strategy on Mental, Neurological, and Substance Abuse Disorders Policy.

Perinatal Mental Health Project (PMHP), founded by Ashoka Fellow Dr. Simone Honikman empowers pregnant women and new mothers from disadvantaged communities in South Africa to promote their well-being and that of their children and communities.

PMHP’s mental health services include: capacity building of maternity staff, mental health screening and risk screening at first antenatal visit, on-site counseling, referral to psychiatric and other specialist services, follow-up and monitoring. The model ensures optimal access to care.

Simone shares that “our mission for this project is that we become obsolete.” Simone hopes that the South African public healthcare and social development platforms will provide comprehensive care for pregnant women’s physical and psychological problems.

Changemaker health refers to a movement within healthcare systems to provide more open and participatory pathways for patients and customers to be involved in their own healthcare. Recognizing that patients are the experts of their own lived experiences, changemaker health goes above and beyond being patient-centered to being patient-owned. Within changemaker health, patients are not simply involved in the design of healthcare products and services, but they are empowered to be in control over their own care. The first article in the series introduces the concept.

Ashoka is a global network of leading social entrepreneurs — individuals who tackle society’s complex social problems with scalable, innovative solutions. Launched in 2010 by Ashoka and the global healthcare company Boehringer Ingelheim, the Making More Health (MMH) initiative identifies, supports, and scales innovative, entrepreneurial solutions to global health challenges. To date, the MMH initiative has identified and supported 87 social entrepreneurs in the field of healthcare from across 37 countries. This article series synthesizes the emerging patterns and insights of the MMH network, as well as other social entrepreneurs working in healthcare, in order to explore the theme of changemaker health.

Full list of articles in the series:

Case Study 1: Patients Know Best: A Changemaker Health Case Study

Article 1: The Shifting Role of Patients in Today’s Healthcare System: Introducing Changemaker Health

Article 2: The Role of Co-Creation in Changemaker Health

Article 3: How Community-Led Caregiving Is Transforming Healthcare

Article 4: Tech for Changemaker Health

Article 5: Detection and Diagnosis for Changemaker Health

Article 6: Changemaker Health is Good for Patients and Even Better for Business