Making Access and Inclusion Happen in Challenging Contexts, by Deborah Stienstra

This is the text of a presentation at a Canadian Institute for Health Research (CIHR) Café Scientifique which was held on Thursday, March 20, 2014 at the Bloomfield Centre in Halifax, Nova Scotia.

Many years ago, I met Michael Charlie, an Indigenous boy with complex needs. He had muscular dystrophy and used a wheelchair to get around the Glenrose Rehabilitation Hospital in Edmonton. He was moved to the hospital in Edmonton from his home northern Alberta, to live and get education in that institutional setting, away from his family, culture and community. We played wheelchair basketball together and did his homework.  I counted him as my friend.  When I moved on, I made him a promise that he would not be forgotten. I have tried to fulfill that promise in my research in the years since.

For me, asking the question “What does it take to make inclusion and access happen in challenging contexts?” makes me wonder what would it have taken to include Michael Charlie in his own community? What does it take to include disabled boys and girls, young women and men in all of our communities? How do we address the everyday challenging contexts of living with disabilities in a world created for and by people without disabilities?

Michael Charlie and other children with disabilities face many barriers. Sometimes the barriers are physical:

• no ramps or accessible classroom

• no way to be on play structures

• no computers configured for their needs

• insufficient supports in classrooms

• necessary supports that exist in one part of their life (school, for example) but not in the other parts (potentially their homes).

Sometimes the barriers are attitudes – resistance from some who may not believe kids with disabilities can or should be on playgrounds, in schools, or a visible part of communities, and, equally or more damaging, an attitude of pity for ‘tragedy’ of living with a life that is perceived as ‘less than normal’. Often those barriers lead children and youth with disabilities to hear the underlying unspoken message – it is better to be dead than to live with disabilities.

Barriers also exist for their families – those who bear many of the costs and responsibilities for negotiating the barriers girls and boys with disabilities face – and may be in the form of stress and burnout, inadequate or non-existent respite services, and extensive disability-related costs combined with reduced incomes to do the required ‘volunteer’ caring work required for their families. For some, the only solution to these barriers appears to be putting their children in a more institutionalized setting and creating a lifelong rupture in their families. In some communities, the choice to move children away from their families is made for them – by a lack of supports and education available within their own communities. This is case for many children with disabilities who live in northern, remote and rural communities.

The communities in which children and young people with disabilities live also face barriers. These communities may live with the legacies of inaccessible places and spaces, they may be strapped for resources, have priorities which benefit only certain parts of the community or are historically disadvantaged as a result of governmental agreements or systemic racism. They may have leaders who are unable or unwilling to imagine diverse bodies as part of the community.  Their communities may be challenged by crises resulting from decades of neglect or from outside forces like resource development or changes to industry. As I have been working with women in northern communities through the Feminist Northern Network (FemNorthNet), I have learned about the unique challenges of including women and girls with disabilities in our work ­­– of sign language interpreters not being available in communities and having to travel eight hours to interpret for a meeting; of no sidewalks or ramps in public spaces so that folks who use wheelchairs could visit within the community; of an invisibility of people with disabilities as a result of a lack of community-based supports and services.

As FemNorthNet has worked with Indigenous women leaders in northern communities, we hear of a tension between traditional Indigenous world views – which have no language for ‘disability’ and practice inclusion and value all children and members of the community – and the constraints of limited resources (especially in many First Nations communities), medicalized approaches to disability (which move those who get labels out of the community to receive services), and historical inequalities in service delivery in northern communities. These constraints create and support the invisibility of disabled children, youth and adults.

Given the many barriers faced, what does it take to make inclusion and access happen in challenging contexts? I have four suggestions for ways to start.

Be there. The disability community has long argued ‘nothing about us without us.’  To make inclusion and access happen requires the full participation of girls and boys, women and men with disabilities. This requires a shift or transformation in how we think about disability. It is not about them (people with disabilities) – it is about us (all of us). We are all affected by disability. The barriers that prevent people with disabilities from participating mean that we all live without their experiences to shape how we understand what human experience is and how diverse it is. Thus we all need to work to address and remove the barriers. And we need to listen carefully to the first-hand accounts of how those barriers affect people’s lives.

Plan for inclusion. Inclusion means not having to go through the back door while everyone else takes the front door. When we plan for inclusion, we use tools like universal or inclusive design to build our buildings and we use visitable design to make old homes hospitable to all. We use inclusive design in teaching. We make our websites accessible to all, not just those who use sight or can read fluently. We provide multiple ways into information and services – ways that reflect our diversity. And of course, we budget for it. FemNorthNet will be publishing a new Inclusive Practices Toolkit in April that gives guidelines about how to plan for inclusion. You can find it on our website after the launch.

Be flexible. Inclusion and access take creativity, ingenuity and flexibility. People with disabilities pioneer new ways of doing things just because they have to.  Inclusive child care happens because children with disabilities may play and interact in different ways than children without disabilities. In New Brunswick, we can see the adoption of a policy on inclusive public education because children with disabilities were not able to be part of common learning environments with the necessary supports.

Be willing to learn.  Humility is as important as is listening to those with first hand experience. That is how change happens, when we value the stories of those who face barriers. It takes real courage to share your story. That can only happen when we create supportive and respectful spaces to listen and share those stories.

 

Deborah Stienstra is Professor in Disability Studies at the University of Manitoba.  In 2012 , she published About Canada: Disability Rights (Fernwood Publishing).  Her recent SSHRC funded research includes examining inclusion and exclusion of diverse women's experiences in economic developments in Canada's North, and a pilot study on developing community vitality indicators in Labrador. In 2013 - 2014 she will lead a project to bring Nova Scotia and Labrador women together to share their knowledge about Muskrat Falls and the Maritime Link. She is the 2013-15 Nancy's Chair at Mount St Vincent University in Halifax.