Many of you know that one of the things that I am hired to do is to work with self advocates in the development of a 'Bill of Rights' which outlines their expectations of their service providers. I've been doing this for a very long time. The first one that I did was prompted by a call from Wendy Hollo who was then the Executive Director of an organisation called "Skills" in Edmonton. Wendy wanted to have a "Bill of Rights" written by the people she served to guide the service she gave. It was a radical concept at the time, and in some places, still is. I remember facilitating that first group of self advocates and remember thinking about how powerful the experience was for me, for the self advocates who attended and, ultimately, for Skills.
Since then I've facilitated similar sessions all over North America and the United Kingdom. From a large front room in New York City, to a church hall in London, England, to a lounge in a curling rink in rural Ontario, I've met with group after group of self advocates. Every single time that I work with a group something new emerges. In Essex the group came up with 'The Right To The Extra Five Minutes I need to Think.' I was bowled over. What a brilliant idea. Here at home in Vita, 'The Right To Learn About my Rights and the Opportunity to Practise Them Every Day.' Another brilliant idea. At a group yesterday they wanted to incorporate statements of responsibility INTO their Bill of Rights ... awesome.
Joe and I were talking, spurred on from a question we were asked at a Bill of Rights session we facilitated yesterday, about the changes we've notice over time. The level of sophistication of self advocates in regards to their rights and, more properly stated, their right to have rights, now is much different than it was twenty years ago. The kinds of discussions and the language with which people have to talk about their rights and the kinds of discrimination they face in society has grown astoundingly.
Joe remembered, as we talked, about some of the early group and how their requests were so basic, profound, but basic:
The right to answer my own phone.
The right to open my own mail.
The right to close my bedroom door.
The right to choose what I watch on television.
I think it was these kinds statements that began to really change me and change how I saw the service system and those of us who worked in it. What kind of control did we have, what kind of repression do people experience that their view of 'rights' were to experience even the tiniest bit of autonomy and dignity. Moreover, it change how I saw agencies who had the courage to have an 'outsider' come in to meet with, without the presence of staff or management, the people they served. I now see that change happens when it is 'willed to happen' ... the will is the way. And that therefore people provide the service that they 'will.' Things don't happen by accident, they happen by design.
And that design can be changed.
Over the last year or two the kinds of things that people with disabilities talk about in these session have matured and the complexity of the Bills of Rights have changed, here are some themes that now arise more and more often:
The right to safety within the service system and within society at large.
The right to be seen as an individual.
The right to voice and choice.
The right to live as an adult.
These themes seem to be independent on the size of the agency, urban or rural, nationality or gender mix. There also seems to be more and more of a desire to write a Bill of Rights that goes beyond agency walls and into the community. The experience of community living, though wonderful in many ways, brings bullying and teasing and discrimination. This topic comes through loudly and clearly and people want to know that the agency that they serve is confronting those issues AND that they are assisted to learn how to confront it themselves.
From those first groups to the groups over the last couple of years there has been a change happening in the self advocate movement.
A welcome change.
For the most part, not always but nearly, these Bills of Rights that have been facilitated have changed the organisations that have had the courage to have them written and then, even more courageously, have them used.
The next step, and it's never been done before ... is to have a self advocate group design a Bill of Expectations for Community Change which would become a blueprint for how an organisation and their self advocates could work together to make inclusion a little more welcoming.