Researchers create a global disability rights monitoring network

If you pass a law to prevent discrimination against persons with disabilities, how do you know whether it’s being enforced, let alone making a difference?

Marcia Rioux (left), director of the York Institute for Health Research (YIHR) and professor in the School of Health Policy & Management in the Faculty of Health, is working internationally, particularly with countries with limited resources, to develop a unique and innovative solution for the reporting requirements set out in the United Nations’ Convention on the Rights of Persons with Disabilities.

The United Nations requires all governments that have ratified its Convention on the Rights of Persons with Disabilities, as Canada did on March 11, 2010, to provide information on the measures they have taken to integrate persons with disabilities into their societies. But this reporting is often limited to cataloguing laws, policies and programs that may have little impact on the day-to-day lives of the people they’re intended to help.

Disability Rights Promotion International (DRPI), a multi-year international collaborative project, is establishing a global monitoring system to address disability discrimination. The research project, based in YIHR, is led by Rioux and Bengt Lindqvist, a former cabinet minister in Sweden, former UN special rapporteur on disability and longtime activist of disability rights. The team includes a group of York University researchers and international colleagues who are creating a road map that will allow countries to evaluate their laws, policies and programs to comply with the United Nations’ standards.

“Collecting and reporting on evidence-based data forces governments to acknowledge that the challenges people with disabilities face are not just anecdotal,” says Rioux. “Our project allows evaluation to happen within the context of the experiences of people with disabilities to objectively measure where discrimination is now while developing and tracking solid trend data to determine if and how things are getting better.”

In September, the Africa Regional Monitoring Centre opened its doors in Kigali, Rwanda, and will act as a focal point for disability monitoring and reporting in the region. Agreements with centres in Asia Pacific, Eastern Europe and Latin America are expected in the near future. The Swedish International Development Cooperation Agency awarded the research team over $2 million in 2009 to open the four regional centres.

Each centre will act as a focal point for monitoring disability rights in that region, and will play a key role in empowering local people with disabilities to lead disability rights monitoring projects. “Regional monitoring is most sustainable when local people are involved since it puts long-term roots into the community,” says Rioux. “The vast majority of disabled people around the world face endemic poverty – many don’t have jobs or go to school or have basic literacy skills. Engaging people with disabilities to lead this process is a more holistic approach to addressing the challenges they face, both as individuals and a collective.”

When all four centres are operational, Rioux anticipates that hundreds of people with disabilities will be engaged in disability rights monitoring activities. The centres will host training on what disability means as a human right, how to collect data and conduct evidence-based research, and how to write and file human rights reports. Groundwork is also being laid to connect monitors with disabilities to other local rights-seeking groups, such as religious-based, race-based and gender-based groups, to get them coordinating their efforts together instead of separately.

“The Faculty of Health’s worldwide research aims to help people live healthier lives while co-creating rejuvenated health systems,” says Harvey Skinner, dean of York’s Faculty of Health. “Professor Rioux’s research is an excellent example of how York University is on the front line of our increasingly complex, simultaneously global and local world.”

Previous phases of this project focused on developing and piloting tools and methods to monitor disability rights. In 2006, the Social Sciences & Humanities Research Council of Canada‘s Community-University Research Alliances program provided Rioux and her team with just under $1 million to fund “Monitoring the Human Rights of People with Disabilities in Canada”, which is currently in its last of five years.

In 2008, Rioux also received a two-year $40,000 grant from Heritage Canada to research disability and social, economic and cultural rights. She has also received funding from the Australian Research Council and been invited to consult with governments and disabled persons associations around the globe to discuss disability rights. Recently, she and her team wrote the chapter on disability rights monitoring for the United Nations’ manual on monitoring human rights.

“Professor Rioux’s disability rights research reflects both the value York places on social justice and her expertise in leading large-scale collaborative research projects of international significance,” says Stan Shapson, vice-president research & innovation. “This type of knowledge mobilization is a crucial step in making governments more accountable for the social policies they set, and reflects the social input that’s possible when expertise is globally shared.”

By Elizabeth Monier-Williams, research communications officer