“One’s dignity may be assaulted, vandalized, and cruelly mocked, but cannot be taken away unless it is surrendered.” – Michael J. Fox, Actor from Burnaby, British Columbia who has Parkinson’s disease.
It was not that long ago when people labeled with a developmental disability had to surrender their rights and have all decisions made for them. They were completely segregated and faced life-long isolation from their friends, families, and from society. They were forgotten and their voice went unheard. They were discriminated against in every aspect of their lives and had no choice in how to live their lives. Today, those same people are surrendering nothing, and are re-shaping society to make sure people who live with a developmental disability have the same rights and opportunities as everyone else. Self-advocates have been responsible for closing institutions, changing stereotypes of disability, getting rid of the “R” word, creating legislation to prevent abuse in group homes, demanding fair wages and real jobs, creating inclusiveness in public schools and universities, and increasing involvement in civic groups and community organizations. Self-advocacy is a rights movement led by people who have been labeled as having a developmental disability. It is about the right to speak up and make life decisions without undue influence or control by others and about having a voice regardless of one’s label or perceived level of ability. Their dignity is intact and they are a force to be reckoned with. It all started in 1960:
- The self-advocacy movement began in Sweden during the late 1960’s. The idea was to provide persons with developmental disabilities “normal” experiences in the university community. Club members without disabilities, who were college students, were expected to allow club members with disabilities to make their own decisions, even if mistakes were made.
- This program shocked many people at a time when persons with developmental disabilities were thought incapable of making their own decisions. It was quickly discovered that people with developmental disabilities could make decisions, they knew what was best for themselves, what they were capable of, what their talents were, what they wanted in life.
- People with intellectual disabilities were supported to form and lead their own leisure clubs.
- National conferences for the members of these clubs were held in 1968 and 1970, and the participants developed policies about how they wanted to be treated.
- In 1972, the idea spread to Great Britain, Canada and the United States. In reaction to the control by professionals in the field of community living, individuals with intellectual disabilities formed self-advocacy groups. In Oregon, they formed a group called “People First” because they felt that their disabilities were secondary to their being a person first and foremost. From there, the idea of self-advocacy spread across North America.
- In 1974 ”People First” group. The first one in Canada started in British Columbia. For thousands of people who had been neglected, abused, incarcerated and misunderstood for most of history, self-advocacy became the way they took power and control to make their own decisions. They were recognized as valuable citizens, students, employees, and friends. It was up to them to ask for help, and to take risks, and to learn from their mistakes, just like everybody else.
- Self-advocacy ensured they stood up for their rights, to attend public school, to grow up with other children, to share the joys and disappointments in everyday living. Most importantly, they were NOT their labels. And their dreams mattered far more than their disabilities.
- By 1991 in the U.S., the efforts of self advocates led to the national organization called Self Advocates Being Empowered (S.A.B.E.) which is a National Coalition of State and local self advocacy organizations governed by a Steering Committee made up of 16 self advocate representatives from all over the country.
- By 1976 in Canada, the first self-advocates were being elected to their local Associations for Community Living to give them a voice on how services need to be delivered in a respectful way that also meets their needs. The International Year of the Disabled proclaimed by the United Nations in 1981 gave a boost to the self-advocacy movement across the country. The provincial association then known as the BC Association for the Mentally Retarded (BCAMR) supported the self advocates by providing them with a platform to speak up in a strong united voice on important issues that included dealing with government.
- During the 1980’s in British Columbia, there was a large community coalition of self-advocates, family members and service providers who wanted to close the institutions for people with intellectual disabilities. The goal was to have all the individuals who had been segregated for many years released so they could live in the community with the required supports to give them a dignified life.
- In 1984, the large institution called Tranquille was closed. Self-advocates from the institutions told the media and the public their personal stories of abuse that occurred in the institution.
- After the closure of Tranquille, the provincial government committed itself to joining the community coalition to close all the large institutions that kept people with intellectual disabilities away from the community.
- By October 1996, the institutions called Glendale and Woodlands were both finally closed. Self-advocates who left the institutions were now speaking up for themselves and joining self-advocacy groups in their communities for support. Many self-advocates are now asked by government to participate on committees that set policy regarding their lives.
- In May 2000, with pressure from self-advocates, the provincial government commissioned a review of Woodlands and the report, ‘The Need to Know’, confirmed that abuse did occur and that the problem of abuse at the institution was systemic. The report recommended a full investigation of abuse at BC institutions as well as an apology, compensation and other actions.
- The BC Self Advocacy Foundation asked for a plain language version of the ‘The Need to Know’ Report and the BC government started a process to inform former residents about the report and ask them to respond. Four information sessions were set up around the province, and something unprecedented happened. Former residents were asked to respond to the report’s recommendations and to say what they think should happen next. The recommendations included that the BC government promise that institutions for people with developmental disabilities will never be opened again.
- In July 2000, the society called H.O.M.E.S. (Healthy Opportunities for Meaningful Experiences Society) sponsored the first Retreat at Edenvale for self-advocate leaders in the Fraser Valley (Abbotsford, Mission and Chilliwack, BC) that lead to the creation of the Fraser Valley Self Advocacy Network.
- In November 2000, H.O.M.E.S. sponsored the second Edenvale Retreat for self-advocates that led to the creation of this Website called www.SelfAdvocateNet.com. Self advocates now have their own Website thanks to the sponsorship of The HOME Society, CareNetBC, WestPro NGO and Cam Dore for co-coordinating the website.
- On March 11, 2010 the Canadian government ratified the UN Convention on the Rights of Persons with Disabilities.
- In 2010, the Self-Advocates Seeding Innovation (SASI), coordinated by the BC Association for Community Living and Sponsored by the CLBC Innovations Committee, brought 25 new projects to life. These 25 projects brought people together and inspired change through art, theatre, press, media, social media, story telling, conferences, workshops, and self-advocate recruitment events.
- In May 2014, BC People First held the We are Stronger Standing Together Conference.
The powerful lessons learned from the self-advocacy movement go beyond the world of disabilities. The concepts of plain language, inclusion, and community living are all borne out of the self-advocacy movement. The path to achieve those goals can teach all of us about learning to slow down in this fast-paced world and make sure that everyone is included along the way and treated with respect. The self-advocacy movement is still growing and is committed to closing all segregated environments so that everyone is included in their community. Today in BC, there are over 35 self-advocacy groups around the province making BC the leader of the self-advocacy movement in Canada. The momentum continues today to work towards raising awareness and promoting equality for all.