This is my response to a forum on Facebook about self-advocacy…

Self advocacy – where to start? I guess I find it had to separate from activism, because every act of self-advocacy is an act of activism, as it paves the way to systemic change – hopefully.

Perhaps it’s because I live in a country of only 4.5 million (New Zealand) and I’ve had a high profile as an entertainer, but these days I expect to be treated with equality and respect – and mostly I do. Rules, policies and laws are arbitrary – they are true only in as much as we hold them to be so.

I’ve led a few changes in service provision (particularly home support and individualised/direct funding/payments) to people who experience disability over the last 20 years by challenging bureaucracies and providers to prove me wrong. Usually they can’t and, when they admit that they can’t be right anymore, that’s when change happens.

These days, I get a pretty good deal because I’m known to strongly defend my position. I encourage others to do the same and, in cases of young people, I use my influence to advocate on their behalf when I can.

I’ve sometimes felt bad for “getting my way” because it seems bureaucrats just get rid of the squeaky wheel and it doesn’t change anything in the short term, except for me. But if every person who experiences disability insisted on getting just their way, things would change so much more quickly.

Of course there are some that can’t, but equally there are more that could, contribute to social change through a determined act of self-advocacy intended as a conscious statement of activism.

Or something like that…