University of Ottawa political science professor Michael Orsini, BA 91, MA 96, examines how activists interact with and affect health policies.
Michael Orsini, pictured at Concordia’s Bishop Court. Orsini arrived at the University of Ottawa’s School of Political Studies in 2003. His current research includes examining American and Canadian citizen activism in autism, multiple chemical sensitivity and asthma. “So far, autism has kind of taken over,” Orsini quips.
What do autism, asthma, multiple chemical sensitivity and Canada’s tainted-blood scandal have in common? For one, all have led to powerful, consumer-advocate movements. And they have also caught the attention of Michael Orsini, BA (journ. & poli. sci.) 91, MA (PP&PA) 96, associate professor at the University of Ottawa’s School of Political Studies. Orsini, an expert in health activism, is intrigued by how social movements shape health policies.
Take, for example, the competing views in the autism debate, which are focal points of Orsini’s current research. When the son of American model and actress Jenny McCarthy was diagnosed with autism in 2005, she attributed it to his measles-mumps-rubella vaccination.
Since then, McCarthy has argued that a regime of therapy and diet has helped her son in his recovery (noting, as she does, that a recovery is not a cure). Today, the former poster girl is the United States’ most prominent champion for parents of children with autism and a tireless campaigner against vaccines. She has an ally in the glossy United Kingdom-based magazine Autism File , which condemns funds directed to genetic research and aggressively opposes scientists and physicians who scoff at claims of a link between vaccines and autism.
In Canada, parents have launched court challenges against provincial governments to acquire funding for costly Applied Behaviour Analysis (ABA) therapy, which supporters insists is the most effective—indeed, the only—way of treating autism in young children.
At the same time, many autistic adults promote so-called autism pride because they value their “neuro-diversity” in the “neuro-typical” mainstream. They bristle at talk of a cure and are wary of therapies, including ABA, that could suppress their identity. From their perspective, autism is simply another way of experiencing the world and, while it has to be understood and accommodated, it should not be pathologized.
This is the entry point for Orsini. “As a political scientist, I am interested in how these groups have an impact on policy, as well as on how we understand autism. But there are serious divisions and the rhetoric on all sides is very confrontational,” Orsini points out. Working in such a highly politicized field has consequences for the researcher, too. “You realize that whatever you say or write takes on a real immediacy. People are watching, reading and ready to respond,” he notes.
Orsini’s interest in healthcare activism has deep roots. His 1995 Concordia master’s thesis investigated identity politics and AIDS activism while his doctoral research, completed in 2002 at Carleton University in Ottawa, focused on the Canadian tainted-blood scandal, one of Canada’s worst public health crises. The scandal erupted in the 1990s after it was discovered that at least 2,000 recipients of blood and blood products contracted HIV between 1980 and 1985 and another 30,000 transfusion recipients were infected with Hepatitis C between 1980 and 1990. “I was intrigued by how a group of people with nothing in common but this infection acquired through blood transfusion could become a collective of political actors,” Orsini recalls. He criss-crossed the country for his doctoral research and interviewed activists in an effort to understand what factors helped or hindered the movement’s success. “These people were becoming adept at interpreting scientific and medical knowledge and the federal inquiry into the crisis became a contest between their perspective and that of the government and healthcare professionals,” he says. “The tainted-blood scandal movement really blazed a trail for some of today’s activism.”
Charting a new path for public policy
Public policies are formed when a government or healthcare body takes actions or makes decisions about public issues that typically include regulations, laws and funding priorities. For a government to develop a public policy, as Orsini tells his students, it must take three crucial steps: define a problem, identify the goal and devise strategies to achieve that goal. How it defines the problem will determine the approaches it adopts to defining it. But with autism, for instance, researchers, parents and self-advocates have distinct and often conflicting definitions. “The challenge is in understanding how these perspectives fit together, which isn’t easy,” he says.
Exploring the various—and often incompatible—social movements associated with autism forms one aspect of Orsini’s current research. He is leading a project, funded by the Social Sciences and Humanities Research Council (SSHRC), entitled “Health Policy from Below: Social Movements and Contested Illness in Canada and the U.S.” The project examines American and Canadian citizen activism in autism, multiple chemical sensitivity and asthma, and how these movements develop, why they succeed or fail and what differences exist between the two countries.
Orsini’s cross-cultural research activities were boosted when he was named a Fulbright Visiting Research Chair at the University of Washington in Seattle, where he worked from January through June 2009. “In my time there, I was struck by the staggering level of fear of vaccines as a cause of autism. There are some anti-vaccination folks in Canada but it is not on the agenda in the same way,” he says. “This issue is especially interesting because it expresses a deep anxiety over scientific and medical progress, which can lead to public cynicism about these enterprises.” The American concern with vaccines may be influenced by the fact that the United States—unlike Canada—has vaccine courts for people who seek compensation because they claim they’ve been harmed by vaccines. The high profile of American anti-vaccine activists like McCarthy may also be a factor.
Orsini admits an academic career unravelling the complexities of healthcare advocacy was not always in the cards. “Journalism was my first love,” he reveals. “I worked at The Link , Concordia’s student newspaper, and spent many sleepless nights in the Hall Building getting it out.” After completing his undergraduate degree in journalism and political science, Orsini joined the Montreal newspaper The Gazette , first as an intern and later as a full-time reporter. “I covered everything. If you did a good job talking to the victims of some horrific murder, they sent you out again,” he recalls. Eventually, though, he grew disillusioned. “I loved journalism’s immediacy but it wasn’t responding to my interests and I never had enough time to devote to a story,” Orsini says. A chance meeting with one of his former political science professors, Reeta Tremblay, prompted Orsini’s return to academia. Still, he says his background in journalism proved complementary. “Writing my doctorate felt a bit like journalism. After all, things were changing very quickly during the tainted-blood inquiry as the breadth of the scandal was unfolding,” he relates.
Few people are more familiar with Orsini’s oeuvres than Miriam Smith, professor in the Law and Society program at York University. Smith is part of the SSHRC project led by Orsini and the two have co-edited Critical Policy Studies , a collection of essays. She also sat on his doctoral dissertation committee at Carleton. “Michael’s work is original. He is bringing new approaches from disparate fields, from social movement theory to political science, to understand how clients of the healthcare system mobilize,” Smith says. “These are people we have not traditionally thought of as political actors.” But she adds that through Orsini’s analyses, scholars are starting to get a sense of how these grassroots activists can affect government health policy.
From academy to real world
Not surprisingly, this research has some practical applications, as Smith points out. “Michael’s work has a lot to say about how healthcare consumers can be engaged in shaping health practice and treatment,” she says. For the last few years, Orsini collaborated with the Ontario HIV Treatment Network (OHTN) to develop Universities Without Walls, a project that brings community leaders together with an interdisciplinary mix of young academic researchers—graduate and post-doctoral students—from across the country to help groom the next generation of HIV researchers. Orsini’s participation stems from his commitment to sharing the fruits of research results with the world beyond academia. “I had prepared a community report following my research on Hepatitis C because I realized, after interviewing lots of people, that they were not interested in academic articles,” he says.
The report, titled “From Silence to Voice: A Qualitative Glimpse into the Lives of People with Hepatitis C,” presented his research findings in lay terms. Orsini sent the report to everyone who was interviewed for the project. He also shared it with groups that include the Canadian AIDS Treatment Information Exchange, which posted it online. “The community report was a necessary part of knowledge transfer, disseminating information beyond the traditional academic milieu,” Orsini says. “As academics, we don’t pay enough attention to reporting our findings back to people.”
This July, Orsini did just that. He chaired the OHTN’s weeklong Universities Without Walls Summer Learning Institute in Toronto, which united academic and community leaders to discuss interdisciplinary HIV research, from public policy to epidemiology. Sean Rourke, the scientific and executive director of the OHTN and an associate professor of Psychiatry at the University of Toronto, worked closely with Orsini on the summer institute and several research projects. “Michael is doing exciting work and has brought tremendous leadership to our Universities Without Walls training initiative,” he says. “As well, I’ve been struck by how he works toward influencing change for better public policies and programs. We need more people like Michael to bridge the gap between academic knowledge and policy.”
Orsini says he is working toward raising awareness about public policy toward autism and HIV/AIDs. “With autism, I want to promote a perspective that will incorporate the voices of people on the spectrum, as well as parents of children with autism. We have to understand how they are all connected,” he says. “Bringing the full range of lived experience to policy development should be fundamental.” As for HIV/AIDS, this has meant finding ways of bringing healthcare consumers and community leaders into contact with researchers and policy makers to develop a comprehensive and inclusive approach to addressing the relevant issues.
Orsini’s dedication to his research and advocacy of an inclusive public policy have led many people to ask him whether one of his own family members is HIV positive or whether one of his own children is autistic. The answer in both cases, is no. “People want a rationale of some sort but often, research is curiosity driven. I see phenomena like the autism movement as a prism enabling us to explore how citizens and healthcare consumers become activists and to learn about how their interactions with government and professional communities can change the way a society understands and addresses healthcare issues,” he explains. “That, for me, is the real connection.”
—Patrick McDonagh, PhD 98, is a Montreal-based writer
