On December 7th, the Fall 2017 Jeanne Sauvé Forum Series on Social Connectedness and International Development concluded with its final event of the season: “Nothing About Us Without Us”: Accessibility as a Global Human Right.
The Sauvé Series, created by Professor Kim Samuel in collaboration with the Jeanne Sauvé Foundation, explores the root causes of social isolation, along with strategies for building social connectedness through international policy and program development. It began last fall with weekly discussions at the historic Jeanne Sauvé House in Montreal covering a variety of topics, from the UN Sustainable Development Goals to refugees and human rights. The Series is also closely linked with Professor Samuel’s fourth-year seminar course on social connectedness at McGill University, the first of its kind.
Professor Samuel opened the night with a sobering reflection on the importance of maintaining dignity for all regardless of perceived ability or disability. “We cannot abide a society that views with indifference the experience of people with disabilities,” she stated. She went on to describe the progress made by the disability community, most notably the adoption of the United Nations Convention on the Rights of Persons with Disabilities in 2006. Looking forward, she argued, “We must embrace actions and plans that will enable us to see the other so clearly and so deeply that after a while, we realize there is no ‘other’; the ‘other’ is only, ever, us.”
Stephanie Chipeur, a doctoral candidate at the McGill Law School, was the first to speak, offering the unique perspective of someone who has navigated McGill and Montreal as an able-bodied and disabled person (before and after a severe car accident). Stephanie presented a powerful selection of photos, illustrating the daily struggles she has faced, and continues to face, as a wheelchair-user in the city.
Noting that the subject of her doctoral thesis is building codes in Quebec, Stephanie explained, “The reason why buildings are inaccessible [in Montreal] is because there are loopholes and exceptions in the law that can pretty much exempt anyone.” She also commented on the added barriers to accessibility posed by the ever-present construction projects on the McGill campus. Her activism on this issue caught the attention of the CBC and other news outlets, which ultimately pushed the administration to lobby the city to make construction sites more accessible.
Next, Simone Cavanaugh, a recent graduate of McGill Law School and founder of the non-profit, Pivot International, spoke about her work advocating for Canadians with disabilities on the Prime Minister’s Youth Council. “Accessibility is not just about people with disability; it’s about making the space more inclusive for everyone,” she said. She also elaborated on her work with Pivot, which supports children with disabilities in several poor communities in Nicaragua by providing adaptive equipment and education around disability to combat stigma. She emphasized the importance of making development “inclusive,” asking the audience, “How do we address the immediate need for service provision, but also educate on human rights in the long term?”
Professor Michael Stein of the Harvard Law School Project on Disability then spoke passionately about his work on the ground with people with disabilities in developing countries. He spoke of the challenges of balancing respect for local cultures with the process of ensuring that people with disabilities are full participants in conversations around legislation on accessibility. “Is it about tolerating people with disabilities?” he asked, “or is it about re-thinking society and thinking about how everyone belongs and everyone adds value?”
Rounding out the panel, Professor Bill Alford, who works with Professor Stein on the Harvard Law School Project on Disability, called for the inclusion and full integration of people with intellectual disabilities as well as physical. “The quality of life for everyone will be better if we are more inclusive,” he stated. “Ideas about tolerance, pluralism and acceptance of differences will be greater,” he added, if we commit to the inclusion of people with disabilities from the beginning of life. Drawing on his work at Harvard, Professor Alford also spoke about the importance of blending academic knowledge and experience with the practical, and having each inform the other.
Eden Beschen, a McGill University graduate and 2017 Social Connectedness Fellow, began the discussion portion of the evening by reflecting on her work with the Jubilee Sailing Trust, a charity that organizes tall ship sailing adventures for people of all physical abilities. She described how even after doing a lot of research on the language around disability, she still has difficulty talking about it without offending someone or feeling uncomfortable.
Eden asked the panel whether the disability community would find it beneficial if a universal language around disability were developed. Professor Stein reflected how coming up with a universal definition of disability has been extremely difficult in practice, and it may be better to accept the diversity of understandings and definitions. Similarly, Stephanie said that it is okay not to have a universal definition, and that rather we should ask each individual how they would like to be identified. Echoing these responses, Professor Alford stated that it is fine to leave definitions a little rough because what we see as disability today might not be the same tomorrow or years down the road. And in response to Eden’s initial comments, Simone responded that it is okay to be uncomfortable because this is often a first step to acknowledging the situation.
An audience member, Catherine Blanchette, then offered her thoughts on accessibility in Montreal. After breaking both her ankles and having to use a wheelchair temporarily, she described facing a number of difficulties navigating Montreal, including finding accessible washrooms. “It’s not a question of design but of dignity,” she remarked. As a result, she started OnRoule.org, a mobile app about accessibility with the aim to reduce social isolation and connect people with one another in order to come up with inclusive solutions to accessibility issues.
Drawing from other comments and questions from the audience, Professor Samuel posed a final question to the panel: “How does policy meet research meet practice? How do we overcome silos?” Stephanie answered that she was excited “to be part of a time where people with disability are part of the research themselves and are the researchers. The more that we make these research spaces inclusive, the more we can change the results.” Similarly, Simone responded that we should hope to see more people with disabilities as decision makers, highlighting the theme of Nothing About Us Without Us. From an institutional perspective, Professor Stein noted that there is still a disproportionate allocation of resources from governments and NGOs towards disability-inclusive programs/policies and measurement; hence, we still have a long way to go. Professor Alford closed by saying that we need to break down silos within university research, and between researchers and people with disabilities. “At the end of the day, the voices of persons with disabilities and their families need to be heard.”
To re-live the Fall 2017 Sauvé Series, check out our YouTube Channel, and stay tuned for information about the Winter 2018 series in the weeks ahead!