More than four million Australians have a disability. That’s 1 in 5 people. But Australians with disability are some of the most discriminated against people in the country. Of the complaints received by the Human Rights Commission, disability discrimination tops the list. Self-advocacy is a way in which people with disabilities can have their voices heard and their needs and wants met.
What is self-advocacy?
There are two forms of self-advocacy. There’s the kind of self-advocacy that sees individual people speaking up for themselves. And then there are self-advocacy groups. For example, self-advocacy groups for people with acquired brain injuries or for Deaf people who advocate for the specific challenges faced by those people.
A collective voice or an individual one, self-advocacy is a way that people with disabilities can have their voices heard on the issues that matter to them.
Sue Smith, who works for the Self-Advocacy Resource Unit has been involved in self-advocacy for nearly forty years.
“Self-advocacy is many different things. But the main thing about it, is it’s a movement. It’s considered to be a civil rights movement, particularly for people with intellectual disabilities,” Sue said.
Self-advocacy in many ways is a course of pride for those involved, Sue explains.
“Being a self-advocate, but particularly part of a group, people call themselves self-advocates. And it’s this sense of identity and a sense of strength. That I’m a self-advocate.”
Standing up for yourself
For Colin Hiscoe, the President of Reinforce, self-advocacy is about making sure that disabled people have the same human rights as the rest of the community.
“For me it means being able to stand up and to do things for myself and to be able to get or to try to get what it is that I’m wanting,” Colin told Inform.
Colin’s involvement with self-advocacy began by chance when he attended a conference in the early 1980s. But self-advocacy has changed his life.
“I didn’t know where to go and I didn’t know what to do. I didn’t know how to get support from people. And I knew nothing about speaking up and self-advocacy.
“And when I got to this conference. Wow! It just absolutely blew me away. It was almost, it was almost like this dirty big 10 tonne brick or whatever it was that was on my shoulders had been lifted off.
“The reason I’m saying that is that their stories were similar to mine. So, their stories were my story and my story was their story. We were almost saying the same thing, but maybe in different words but meaning exactly the same thing. And I just wanted to be involved with this really fantastic group.
“And so, I asked around, how do I do it? Oh, you just become a member and then we take it to the committee and then we vote and find out if anybody knows why you shouldn’t become a member or anything like that. And then I got a letter saying that I’m a member. And then, that was in April, and then in May, I was just about working every day of the week, as many as I could. Trying to fight for the same basic human rights as anyone.”
The history of self-advocacy
The self-advocacy movement can be traced to Sweden where in the late 1960s, people with intellectual disabilities were supported to create and lead their own leisure clubs. By the early 1970s, the idea had spread to the UK, Canada and the United States.
In 1980, Reinforce became the first self-advocacy group in Australia. Run by and for people with intellectual disabilities, Reinforce was involved in a series of direct action protests throughout the 1980s and they still exist, and self-advocate today.
Throughout the 1980s in Australia, self-advocacy groups flourished. Together, people with disability had a strong voice. And they used that voice to speak out about institutions, rights in sheltered workshops, changing community attitudes and their right to equality.
In the 1990s, funding cuts forced many self-advocacy groups to close their doors. But in 2008 the Victorian Government funded the Self Advocacy Resource Unit or SARU. Support provided by SARU has seen the number of self-advocacy groups in Victoria grow.
When might you need to be your own advocate?
Self-advocacy is about the rights of people with disabilities to have their voices heard, listened to and respected. And Colin says that there are many reasons why someone may need to self-advocate
“I think when they’re not getting what they’re wanting and nobody’s listening, and no one’s taking any notice of them.”
Some of those many reasons why you might need or want to self-advocate may include when you want to make some changes, for example changing a service provider. Or perhaps when you’re looking for work or in the workplace. Maybe you’d like to have more control over your finances or where you live. You might like to have your voice heard during appointments with your doctor or allied health professional or even at home with family and friends.
Self-advocacy provides a way for people with disabilities to communicate their needs and wants. But it’s also a way for disabled people to have broader conversations with the community and government about those needs and wants and advocate for change.
Sue says she has long been in awe of what self-advocates and self-advocacy groups can achieve.
“The power of people joining together to have a voice, I have seen for many people be life changing and provide so many opportunities.
“But the power of the groups to make change… being part of the sort of self-advocacy movement and being part of a group also links you to who can actually do something about what you’re speaking up about. Whereas a lot of times, I would say, my experiences over the years, that without that around you, the people around you supporting it, sometimes it can be hard to be heard.”
How can you learn more about self-advocacy?
There are lots of resources available for learning about self-advocacy. As Colin explains, the most important thing to remember is despite the challenges, it’s always worth having your voice heard.
“My tips for advocating for yourself, if you’re not sure how to do it, or you don’t know how to do it or you just new at trying to do this maybe ring us at Reinforce, ring the SARU, ring any other advocacy group that might be around in your area, that are closer to you.
“But one tip I would like to give, and it’s a bit of a plea. And that is to please don’t give in. It’s going to be hard. And you’re gonna have knockbacks and you’re gonna feel ‘Oh, crikey, this isn’t gonna work. I’m not getting anywhere. What am I gonna do?’ Please don’t give in. Please make that phone call. Get help and support from somebody.”