Musings of an Advocate…
My first contact with and knowledge of advocacy was over twenty years ago. I was a manager within learning disability services in Britain and remember thinking that it was a great idea. However I think I was also secretly glad that advocacy representations never came to my doorstep as I wasn’t quite sure if my rightsbased principles would stand up under scrutiny! After all, we managed an excellent service given the resources available, so what on earth could we do better? I continued to be supportive of advocacy, ensuring people got to go to advocacy meetings, but was allowed the luxury of being supportive in principle while not being challenged in practice. However, I had to come out of this comfort zone when it was announced that the educational facilities being afforded to people with a learning disability in the area were to be centralised and moved, thereby severely restricting access to these services for many of the people supported by our services. I took off my safe management hat and started attending meetings to lobby the education department, alongside Mary, whose voice I became. We were not alone.
Others who cared about those affected by the decision—parents, advocates, staff, in conjunction with many self advocates—came together and spoke with one voice against the decision and we were vindicated. The decision was overturned and the excellent classes resumed. It was my first personal experience of the power of advocacy. My next close encounter with advocacy came about in the mid-nineties when I became an advocate to someone with Aids. We were matched as advocacy partners because we were both Irish, possibly not the most scientific basic for such a decision! I first met M in a nursing home. He was 6 ½ stone and dying. He was very weak and needed someone to speak up for him, be his voice and fight his battles. He was addicted to alcohol, tobacco and drugs, but had no access to any of these substances due to the nursing home rules. He wanted to be able to enjoy these pleasures (or were they a curse?) in peace before he died. As an advocate I could not advocate for access to illegal substances, but I met with the management team to explain his circumstances and to seek a relaxation of the rules to accommodate his need for alcohol and tobacco- And he was accommodated. He didn’t die but lived to provide me, and many others, with ample advocacy challenges to represent on his behalf. He left the nursing home and got a home of his own, something that many thought would never be possible. But it was what he wanted, and I had a responsibility to represent his wishes, sometimes despite my own fears. Being his advocate was never easy and often challenged my own values and views.
He taught me that I had to leave aside my own principles and priorities and to be true to his. After all, it was his life, not mine. I had the privilege of being M’s advocate for the next two years, and his friend for a further year before his relatively short, but finally glorious, life came to an end. And so begun my long love affair with advocacy.
I have been involved in advocacy in Ireland for over six years and continue to be amazed by the impact advocacy has on people’s lives. Sometimes it is not the outcome, but the involvement in the advocacy process that makes the greatest difference to people’s lives. I have witnessed people growing in self confidence and self worth as they come to realise that what they want from life is theirs by right and not by privilege. Through involvement in advocacy groups, attendance at conferences and— that most important part of the advocacy jigsaw—access to independent advocacy, people’s expectations have grown. Those who have started on their advocacy journey will no longer just accept what is given, but will seek what is theirs by right, as equal citizens and valued human beings. However, for many people with a learning disability in Ireland that journey has yet to begin.
Many continue to be denied any meaningful access to advocacy—in particular independent advocacy. Many continue to live in large congregated settings away from ordinary community life. Many continue to have major life changing decisions made for and about them, with no involvement in those decisions. Many continue to live restricted and confined lives, with no hope for, or expectation of change. For these people, advocacy is a necessity, not an added option. Through advocacy, change will happen for individuals and those who support and care about them. The status quo will be challenged and the seeds of change will be sown. People who have been denied a voice will start to be heard and their hopes and dreams for their lives will start to be responded to.
Advocacy has power. It has the power to change people’s lives in little and big ways. To come back to my original question – ‘Why advocacy?’ This is why. Or perhaps the real question is –’Why not?’