Changing of the Guard

Introducing Independent Living Canada’s New National Director

Ten years ago, when I was diagnosed with systemic lupus erythematosus, a form of arthritis that can affect any system in the body, I thought my life as I knew it was over. Life did change—lupus affected my joints, skin, brain and eyes, and caused pain and fatigue to the point where I was obliged to stop working. But it has also opened many new doors.

At first overwhelmed by trying to cope with a chronic illness, I sought out help to come to terms with the emotional struggles I was facing. In doing so, I became involved with Arthritis West Island Self Help, a group located in the West Island of Montreal. I eventually became a board member focused on advocacy and disability issues. Of course, this interest stemmed from my own frustrations and those of others trying to navigate the bureaucracy of long-term disability benefits.

Advocacy work soon became my outlet. In 2005, I became a Steering Committee member (and later President) of the Canadian Arthritis Patient Alliance, a grassroots, non-profit arthritis advocacy group that deals with issues such as access to medications, research and public policy change. I also became involved with the Systemic Autoimmune Rheumatic Diseases (SARD) Research Alliance, the Canadian Arthritis Network and the Episodic Disabilities Network.

In 2009, I was invited to travel to Geneva, Switzerland, to take part in the World Health Assembly. This gave me an opportunity to exchange information with other groups around the world regarding best practices in policy and advocacy work.

My experience with advocacy organizations has been life changing and empowering. When you can find your voice, there is nothing more satisfying than making a difference in people’s lives. It is incredibly rewarding to be able to impact the quality of life of others in the community. It’s like coming out of the closet—there is a freedom from the prejudices or misconceptions people have about disabilities. I feel that I am now living my life in a meaningful way.

The door at Independent Living Canada has been the latest to open. My vision for the future of the organization is to build on the great work already begun by those who have come before me—Traci Walters, the outgoing National Director; the board; the dedicated staff and all the IL Canada Centres across the country.

I plan to use my experience (and the web of networks that I’ve developed over the years) to form strong partnerships and increase awareness of IL Canada. I hope to establish new programs and activities that will empower people with disabilities to find their voice and place in society. I would like IL Canada to become the organization that everyone turns to for expertise on cross-disability issues. We have the skills, experience and the resources to achieve this goal.

As I have personally discovered, while there is the illusion of inclusion in organizations and society, there are still many barriers for people with disabilities. Most of these obstacles are due to a lack of awareness and a failure to consult people with disabilities about their needs. Who could be a better expert on a disability than the person who lives with it every day?

I’m thrilled to be working for an organization that helps to empower people with disabilities. In fact, by choosing me, a person with a disability, to fill this position, the board has further demonstrated the IL Canada philosophy.

While I’ve only been acting as National Director for one short week, I’m learning new things every day and I’m amazed by all the wonderful things that are already being accomplished. Our board is in the process of developing a five-year strategic plan to grow the organization so that we can deliver much-needed educational and support resources to people in the community. We will continue to mentor, empower and generate expertise that will help all Canadians live independently.

The groundbreaking book by John Lord, Impact: Changing the Way We View Disability, which traces the roots of the IL Canada movement (and is a must-read for anyone who needs a trusted reference book on disability), arrived in our office just this morning. For me, it is a very auspicious sign of a wonderful, bright future at IL Canada.

IL Canada is a national non-profit association of Independent Living Centres run by and for people with disabilities who promote the Independent Living philosophy. For more information, visit www.ilcanada.ca or email info@ilc-vac.ca.