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​People First of Canada: Advocacy Driving Change in the Community

- by Maia Idzikowski

People First is a national resource centre for self-advocates. It’s the country’s go-to place for anyone with questions or issues regarding advocacy. People First is unique because its board consists of people labelled with intellectual disabilities, showcasing that people are capable beyond society’s expectations.

I recently had the opportunity to interview Shelley Fletcher, the Executive Director of the organization, who shared some of her experiences and insight.

Shelley is passionate about her work with People First. She is determined to resolve many of the issues that self-advocates face. However, she did not always know that working with individuals with disabilities would be the best career path for her. Shelley started volunteering with Special Olympics when she was 18 years old. A few years later, after receiving a college diploma in Business Administration, she started working for Investors Group. In fact, she was more excited about going to volunteering than going to work. Thus, Shelley decided to begin working with people with intellectual disabilities, and everything fell into place.

A typical day in Shelley’s work life consists of “no less than 100 emails a day”, and involvement in numerous committees and public speaking events. Shelley currently sits on a committee with Elections Canada, whose work focusses on making voting more accessible for individuals with disabilities. Shelley is also authoring a presentation for the upcoming Canadian Centre on Disability Studies conference. Part of Shelley’s job is to organize the logistics and writing of presentations and speeches, and then work with the members of People First and prepare them to deliver and facilitate these presentations and speeches.

Shelley works closely with politicians both provincially and federally. One MP whom she works with even took forward and passed a Private Member’s Bill on employment and disability. Shelley also facilitated the volunteer placement of a self-advocate in the office of this MP, which led to employment at the House of Commons. Working closely with People First, this self-advocate was able to have a direct impact on the hiring criteria at the House, and obtained the position despite not speaking French.

When asked about her experiences working with individuals with intellectual disabilities, Shelley had numerous stories to share. Twenty-five years ago, Shelley began working with one gentleman named Chris. For the first five years, Shelley worked with Chris at a day program, and then for five more when Shelley became employed at the agency that supported him residentially. During her maternity leave, Shelley resigned from that specific job and went on to another place of employment. When she went to find Chris and see how he was doing, information was hard to come by due to privacy and confidentiality laws. Twelve years later, Shelley discovered that Chris had become ill and was living in a nursing home. Twelve years later, upon visiting him at the nursing home, the first thing Chris said to her was “Shelley Dawn Fletcher, where have you been?” Since then, Shelley visits Chris weekly at the nursing home, and recently she has become Chris’ co-substitute decision maker and he is no longer under the order of the Public Trustee.

Over the past 30 years or so, Canada has seen drastic changes to the rights of people with intellectual disabilities. I asked Shelley what she thinks still needs to be done to ensure that self-advocates have equal rights. In her opinion, the largest challenge facing self-advocates at this time is the ongoing battle of having the basic right to choose where they want to live and with whom. There is legislation in place establishing this Right, however it is not yet widely enforced. People First, consequently, is challenging governments with the question ‘Why not?’. Why is this legislation not enforced? Why are the rights of these individuals not upheld?

People First of Canada is part of a National Task Force along with their colleagues from the Canadian Association for Community Living (CACL) which focuses on the right to live in the community. Together, they are spearheading a research project aiming to understand why individuals with really great needs are granted the opportunity to live in the community, while others do not get the chance.

Following this thought, I inquired about the ultimate goal in regards to inclusion. The bottom line is that when individuals can live on their own and have full control of their lives, we will be heading in the right direction of an inclusive society. Ultimately, the goal is that advocacy organizations will not have a need to exist. The non-profit organization LIFE, which has a program called In the Company of Friends, is an excellent example of how people should be living. It is a person-centred model where the person receiving services and supports is truly in total control of their lives.

I asked Shelley, furthermore, about the types of situations that require individuals with intellectual disabilities to advocate for themselves. People First of Canada focusses on the ‘bigger picture’ in Canada. An example of this would be legal cases that are of national scope. People First of Canada worked on the ‘Eve’ case 27 years ago and due to their contribution to that case, people with intellectual disabilities are no longer allowed to be sterilized in Canada. Another example of this is the Tracy Latimer case. People First intervened at the Supreme Court level and advocated to remind society (and the court) that Tracy was the victim in this case, not her father. (Whom was found guilty of murdering his daughter.)

The true experts on intellectual disabilities, without a doubt, are the people who live with the label. People First of Canada is piloting a five-year national education project targeted to students in Grades 7 and 8 across Canada. The Language Project is delivered by members of People First, and teaches youth about the negative connotations associated with the “R” Word. In this manner, young people across Canada will learn about stigma and societal misunderstandings from the individuals affected by these issues.

Shelley, additionally, revealed some of the challenges that arise out of her professional work. Achieving inclusiveness has been a slow process with gradual progress being made. A lack of political will to spearhead change, as well as societal thinking and stereotypes hold back individuals with disabilities. With the upcoming election, moreover, the current challenge is to engage the candidates into stimulating discussion over disability issues.

On a final note, I asked Shelley if there is anything she thinks everyone should know. It really comes down to the fact that everyone has the right to live in the community, and this right is not being met and fulfilled. In some provinces, there are zoning laws stating that people with disabilities cannot live within 200 meters of each other if they are receiving services. Residential licensing laws are prohibiting self-advocates from owning a key to their own group homes. In another case, a provincial government asked a London Professor to move to their province to teach, but sent the family back when they had a baby with Down Syndrome. A ‘burden on our medical system’ is what they were told. This is simply outrageous!

What this boils down to is our laws and legislation. The UN Convention on the Rights of Persons with Disabilities states that every individual has the right to inclusive employment (Article 27) and education (Article 24), along with the right to live in the community (Article 19), the right to legal capacity (Article 12), and the right to raise awareness and advocate for oneself (Article 8). Working with members, People First of Canada is twofold: it teaches its members about these rights (and the responsibilities that come with them) and how to gain access to inclusion within society. It also works with communities across the country teaching them about people’s rights. Advocacy is a powerful tool that drives change. Without it, rights would not be obtained and secured, and the most vulnerable in our society would be overlooked.