Breaking Stigma, Building Empowerment

The Ontario Brain Institute's Breaking Stigma, Building Empowerment storytelling project consists of honest and diverse first-person narratives from representatives with lived experience within the brain health community. Sharing their journey with us, individuals provide us with personal insights into the barriers of stigma and how it has impacted their experiences. They also shine light on moments of resiliency and triumphs in overcoming these adversities. By amplifying the power of lived experience and personal narratives, we hope to continue to break down the barriers of stigma, provide educational insights about brain conditions and empower individuals impacted by brain disorders.

These stories encompass many themes and provide insight into the importance of self-identity, acceptance, belonging and social connectedness. However, they also critically address societal expectations and structural inequalities that reinforce stigma and have a negative impact on individuals living with a brain condition.

Through this project, we also prioritize giving a voice to underrepresented communities and fostering representation. Brain disorders and their associated stigma affect individuals from diverse backgrounds and at different stages, which highlights the need for inclusivity and representation in addressing these barriers.

Although progress has been made, stigma still poses a significant barrier to care for many people and can lead to a lower quality of life and significant adverse health outcomes. Stigma is a cross-cutting issue and needs to be addressed on multiple levels (individual, social and institutional) as well as taking into consideration the unique and distinctive experiences of different groups and communities. Structural inequities and negative societal norms further contribute to sources of adversity and limit access to support and services.

By addressing stigma, we can contribute to creating an inclusive and equitable society as well as creating spaces where individuals can share their experiences and feel empowered.

Through our conversations with our patient and community advisory committee members and our blog writers from the brain health community, OBI is putting forward recommendations that people can integrate into their life to continue to break down the barriers of stigma.

Our seven top takeaways are:

• Think about the words you are using and avoid stigmatizing language. Try to use person-centered language, which is centered around putting people first. It emphasizes the person rather than the condition.
• Educate yourself about negative stereotypes and misinformation.
• Openly involve yourself and show support for others along their journey.
• Be patient with yourself. Understand that you are trying your best.
• People with lived experience have so much to share and should be given a voice. Position them as co-creators and include them from the beginning in research, advocacy, and education initiatives.
• Diversity and inclusion are fundamental. We need to have honest portrayals and show all facets of lived experiences.
• Organizations should be able to provide accommodation to individuals with lived experience. This includes supporting people in navigating through the accommodation process, whether it be at school or work.

We recognize the strengths and resilience of our blog writers who have experienced stigma and celebrate the ways in which they have overcome these hurdles.

We would also like to thank both our PCAC Committee and blog writers, who supported us on this project through numerous consultations and conversations. Our PCAC Committee includes individuals living with brain conditions, caregivers, community organizations and representatives, research and support staff from each of our IDPs. Lastly, OBI recognizes the profound role of our members, and we are actively integrating their perspectives and all sides of lived experience in order to advance brain health.