Thursday, September 21, 2023

Professor Trudo Lemmens

Faculty of Law Professor Trudo Lemmens, Scholl Chair in Health Law and Policy (photo & story by Nina Haikara)

Disability rights, disability justice and disability advocacy have been an increasing focus of Trudo Lemmens’ research in recent years.

The University of Toronto Faculty of Law professor holds the Scholl Chair in Health Law and Policy with cross-appointments to U of T’s Temerty Faculty of Medicine, Dalla Lana School of Public Health and Joint Centre for Bioethics.

“The recent COVID-19 pandemic revealed again how various measures and policies often uniquely impact on persons with disabilities,” says Lemmens. “The voices of disabled persons were largely ignored, and the disability community was not meaningfully involved in the decision-making process.”

Lemmens, including co-principal investigator, Alison Thompson, an associate professor and a bioethicist at U of T’s Leslie Dan Faculty of Pharmacy, and former members of the COVID-19 Science Advisory Table, are leading a global interdisciplinary study on “Rebuilding public trust after COVID-19: Examining public health measures and their impacts on disadvantaged communities.”

Their research, supported by the Social Sciences and Humanities Research Council’s (SSHRC) New Frontiers in Research Fund for post-pandemic recovery, aims to shed light on the challenges faced by disadvantaged communities during the pandemic and provide insights to rebuild public trust and address health disparities.

“Viruses don’t discriminate, societies do,” says Thompson, who has worked on ethics and policymaking issues both nationally and internationally and was a member of the Ontario COVID-19 Bioethics Advisory Table.

“We need to listen to persons living with disabilities, for example, about how their concerns can be better addressed, and how policy processes can be made more inclusive and responsive to the needs of people who are disproportionately harmed because of pre-existing, unjust social conditions.”

Their post-pandemic recovery research is born in part out of earlier work by the project's team members, including Deborah Stienstra, Jarislowsky Chair in Social Work and director of the Life Work Well Research Centre at the University of Guelph; Kevin Bardosh, an applied medical anthropologist at the University of Washington; and policy discussions on clinical triage policies with Ontario’s Human Rights Commission, ARCH Disability Rights Centre, and the AODA Alliance (Accessibility for Ontarians with Disability Alliance).

Stienstra’s report, “Consistently excluded: A disability inclusion analysis of Canada’s COVID-19 policies,” was featured during the Faculty of Law’s Health Law, Policy & Ethics Seminar Series, organized by Lemmens. The seminar included guest commentary from disability justice advocates, Sarah Jama, co-founder of the Disability Justice Network of Ontario and current Member of Provincial Parliament for Hamilton Centre, and Gabrielle Peters, co-founder of the Disability Filibuster

Another seminar featured the collaborative research paper — “The Unintended Consequences of COVID-19 Vaccine Policy: Why Mandates, Passports, and Segregated Lockdowns May Cause more Harm than Good” — written by Bardosh, Lemmens, and others involved in the new project. A recording of the discussion for "Unintended Consequences" has since received more than 77,000 YouTube views.

“Experts have been recommending development of pandemic policies for a long time — since SARS-CoV [severe acute respiratory syndrome] in Ontario — and still it appears we were unprepared and failed to have equitable policies in place,” says Lemmens.

He adds that other countries introduced different measures and policies during COVID-19 that we can learn from various approaches. Fernando Aith, a professor of health law at University of São Paulo, is part of their research team that will be exploring Brazil’s approaches, to compare the two countries with universal public health care systems.

“Brazil had one of the highest COVID-19 fatality rates in the world. Denialism, mistaken political and administrative decisions, lack of coordination between the different Brazilian federative entities, stand out among the problems faced throughout the pandemic, which killed more than 700 thousand people in the country,” says Aith.

“A comparative study between Brazil-Canada will allow us to understand the similarities and differences of these countries in confronting the pandemic, and thus consolidate strategic knowledge to prevent future public health emergencies."

Lemmens says public health policy has traditionally emphasized the importance of building, strengthening, and maintaining public trust. The researchers will explore how the implementation or absence of different measures, such as testing strategies, vaccine and mask mandates, clinical triage policies, and public health communication, have influenced trust levels between the public, particularly within already disadvantages communities, health authorities and other institutions, such as universities.

“Our research is built on this premise that trust is key to promote public health in the long-term, and to ensure compliance with public health measures. But during the pandemic, measures and policies — often of a rights-restrictive nature — were implemented or withdrawn without discussion with those particularly affected.”

He concurs it can be argued that the seriousness and urgency of the public health threat may have hindered elaborate consultation, but he says that the need for inclusion in decision-making is a must.

“In our research, we want to explore what the impact is on how governments, healthcare institutions, and universities acted during the pandemic, and whether things could have been done differently, particularly from a disability justice perspective. We want to come up with more inclusive public health governance approaches,” he says. 

“Could we design an advisory committee structure that involves more stakeholders from the disability community, racialized minorities, Indigenous Peoples and those living in poverty? How would such a different governance structure function during a pandemic?”

By examining the intersection of public health policies and societal factors, the project can help inform future policymaking and public health interventions. Mitigating health inequities and rebuilding public trust, is of great importance going forward, says Lemmens.

“We shouldn’t too quickly turn the page and move on as if everything went well. We need to learn from our experiences.”