Experience exchange: Our voice is being lost

Our voice is being lost: What people with lived experience are saying about equity & human rights responses to COVID-19

Experience Exchanges capture and share diverse stakeholder experiences to bear on Ontario’s mental health and addictions system. Evidence includes research, professional expertise, the lived experience of people and families, and cultural and traditional knowledge. In this Experience Exchange, we facilitated a discussion with a diverse panel of People with Lived Experience on their experiences with the COVID-19 pandemic. The information is a reflection of panel members’ views and opinions and is intended to help inform equitable, system-level pandemic response planning and service delivery. It does not necessarily reflect the opinions of the Centre for Addiction and Mental Health.

Read this Experience Exchange below or download the PDF.

What you need to know

What we did

One of PSSP’s roles is knowledge exchange, bringing together evidence from research, practice, personal lived experience and Indigenous cultural knowledge to inform system-level action in the mental health and addictions sector.

As part of this work, we regularly convene the Persons with Lived Experience and Family Advisory Panel to inform our provincial projects and internal initiatives. The panel currently has 13 active members from across the province representing diverse communities and perspectives. At the Panel’s request, we convened a virtual meeting to learn more about what people and their communities are experiencing during COVID- 19, with the intention of sharing this information back to system stakeholders.

The conversation was facilitated using the following guiding questions and conversation starters:

PSSP synthesized and summarized the information and recommendations from this dialogue, and Panel members reviewed the summary and recommendations for accuracy and additional considerations. The information that follows represents the opinions and experiences shared by Panel members during this consultation. It does not necessarily reflect the opinions of the Centre for Addiction and Mental Health. We recognize that this summary does not capture the extensive nuanced conversation that we had with panelists about equity and human rights issues druing COVID-19. It is meant to be a starting point, not an exhaustive account. Please refer the to resources shared at the end of this document for more information on concrete actions and advocacy by service-users, people with lived experience, family and community allies.

What we heard

Pre-existing inequities and human rights issues exacerbated by the pandemic

Prioritizing lived experience analysis and knowledge in planning

Types of support: environmental, economic, social, mental, physical, cultural

System navigation

Virtual care

Virtual and Telehealth care for mental health presents a number of challenges. Panelists shared the following observations:

Information sharing

Panel recommendations

Throughout the dialogue, panel members suggested that incremental change may not be enough to produce a truly equity-focused pandemic response system. They voiced the desire for justice-oriented system transformation and a new economic paradigm that fosters mutual aid, care, and community capital instead of solely prioritizing private profit.

“Right now capitalism is the priority: it is usually folks who are working class who are the ones risking their lives.”

Panelists also recommended a number of concrete steps for service providers and system-level stakeholders in the short term to understand how existing inequities are worsened by COVID-19 and current responses and to move towards reducing the disproportionate harm on people who are experiencing systemic inequity.

“Decisions were made by people in positions of power without consulting us. There were no considerations about whether these decisions were realistic for those of us who live in the real world.”

“This was a lost opportunity to work WITH us to design a response plan that can better meet the needs of everyone.”

“The intersection of disability identities and mental health and addition challenges are often overlooked in institutional settings, for example care facilities are not adequately accessible for people with physical and cognitive disabilities in addition to mental health issues.”

“We know that overdoses are up, but it is not included in the data.”

“We’ve been doing this work for decades, but our voices are being reduced to an anecdotal picture.”

What does an integrated approach to equity-focused research, decision making, and planning look like?

A reoccurring theme in this dialogue was that pandemic planning has been disconnected from people’s lived realities of inequities, without meaningful engagement of diverse populations at all levels. Embedding an anti-racism and decolonizing analysis into planning and research is essential.

“It’s one thing to be making these decisions in the neutrality and privilege of institutions and another to be in some of our neighbourhoods facing the reality that people are living with.”

The intersectionality of people with lived experience of mental health issues, addiction and disabilities needs to be central to equity research, analysis, and planning. Race-based data should be collected to address the disproportionate impact of COVID-19 on people from racialized communities, particularly Black and Indigenous people.

Real life narratives need to be incorporated to humanize the picture.

“Get out of silos: need to include Social Determinants of Health, Racism, Sexism, Ableism, Classism etc.”

“Show the inequities in a human way, bring the articulate picture to them – decision-makers, policy analysts.”

Further, people from racialized and other diverse communities need to be meaningful engaged in every step of pandemic processes to avoid perpetuating the status quo and harms.

Further considerations

During the review process of this Experience Exchange, several panelists highlighted the impact of Anti-Black and Anti-Indigenous racism on people with lived experience and families. Racism can lead to anxiety, depression, hypervigilance, chronic stress, chronic fatigue, internalized racism and symptoms similar to post traumatic stress disorder. This is called racial trauma.* Panelists highlighted the need to transform the justice and mental health systems to affirm the lives and futures of Black, Indigenous and People of Colour in our society. They recommended reallocating funds away from policing Black, Indigenous and People of Colour communities, removing police from wellness checks, and investing in economic and social supports, especially community-based mental health, addiction and disability services that are culturally relevant and affirming for people experiencing crisis.

Additional resources

The following resources may be useful for centering equity and human rights in pandemic planning and service delivery:


* We recognize that The Canadian Emergency Response Benefit (CERB) has now been replaced with the Canadian Recovery Benefit (CRB). At the time of our discussion, CERB was still in place.

**“Racial Trauma” is a term developed by Sheila Wise Rowe in her book Healing Racial Trauma.


  1. Alliance for Healthier Communities (2 April 2020). Statement from Black Health Leaders on COVID-19’s Impact on Black Communities in Ontario.
  2. Toronto Star (4 April 2020). Indigenous Communities, Systemic Racism, and COVID-19 (podcast).
  3. Human Rights Watch (16 March 2020). Protect Rights of People with Disabilities during COVID-19.
  4. Arch Disability Law Centre (16 June 2020). COVID-19 Related Updates and Resources.
  5. CBC Radio (2 April 2020). Voices from Inside: COVID-19 in Canada’s Prisons.
  6. European Monitoring Centre for Drugs and Drug Addiction (25 March 2020). COVID-19 and People who Use Drugs.
  7. Yao, H., Chen, J.-H., & Xu, Y.-F. (2020). Patients with mental health disorders in the COVID-19 epidemic. The Lancet 7(4). https://doi.org/10.1016/S2215-0366(20)30090-0
  8. Egale (6 April 2020). Impact of COVID-19: Canada’s LGBTQI2S Community in Focus.
  9. UNICEF Canada (17 April 2020). The Impact of COVID-19 on Children in Canada: Short-, Medium- and Long-Term Mitigation Strategies.
  10. Centre for Addiction and Mental Health (July 2020). Mental Health in Canada: COVID-19 and Beyond.

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