Throw the glitter in the air: The power and importance of disability advocacy

Graeme Innes is the former Disability Discrimination Commissioner at the Australian Human Rights Commission and is now Chair of the Attitude Foundation which works to change attitudes to people with disabilities. Graeme delivered the following Keynote Speech at the Strengthening Disability Advocacy Conference in Melbourne on 4 August 2014. In it he talks about the importance of value of advocacy at a time when the right and the capacity of individuals and organisations to advocate for themselves and others is being challenged by governments.

I acknowledge the traditional owners of the land on which we meet.

Thank you for the opportunity to speak with you this morning. As a worn-out old advocate, I wondered if you’d want me to come down here to speak when all discrimination against people with disabilities in Australia has been fixed. Oh, hasn’t anyone told you that? Isn’t that your experience? Well, I thought that’s why we didn’t need a full-time Disability Discrimination Commissioner any more, with lived experience of disability and who knows the disability sector. I thought that’s why we could take $1.6 million from the National Advocacy Program? I thought we all had jobs, and were off welfare, so the changes to the DSP were not a problem. At least, that’s what the Government and the Attorney-General told me! May be they got it wrong? Do you think so?

Well then, if that’s the case, I had better throw away the celebratory speech I had planned, and cancel the case of champagne I had ordered. However, if there’s still some discrimination around, if there is still a need for advocates, if we haven’t all got jobs and so don’t need the DSP, we’d better do something about it. We are advocates after all.

Ok, now that I’ve got my attempt at Monday morning wake up humour out of the way, I have to make a confession. The original plan for this part of the programme was to get someone who would start the conference off with a bang, inspire you all with his amazing story, and motivate you – both for the rest of the conference, but also in your work for some time to come. And I know who was on the original programme – and he would have definitely done that. But he couldn’t come, so you’ve got me instead. I’m just some ex-Commissioner who the committee found hanging around, and who is going to run a Q and A session this afternoon. And they asked me if I could fill up this hour. So I’ll do my best. But you’ll have to help me. You may have to answer some questions – and if you do you need to remember my one behavioural fault- well, the one I’m prepared to admit to. If you put up your hand to give me an answer, I’ll completely ignore you. So just break those old school rules, and call those answers out.

What gets you out of bed in the morning? For me it’s usually a bloody strong cup of coffee. And your coffee down here doesn’t stack up against the coffee we make in Sydney, so I’m in trouble from the start. And if that comment doesn’t upset you, let me tell you that I barrack for the West Coast Eagles. Right, I should have the whole audience off-side now.

But really, what does get you out of bed? If you were teenagers, it would be your mother. It’s probably basic bodily functions – bathroom, hunger, partner snores.

But let’s lift this to a slightly higher level. What motivates you to do what you do?

Conferences such as this, as well as being a great chance to learn – formally from presenters, informally from peers, (yes, I’ve read about the speed dating sessions), conferences like this are a great opportunity to consider that question. So I want to start your thinking this morning.

I want to talk today about what we do. In our role as advocates. And I want to remind you all that what you do matters- you become involved at a key time in people’s lives, and can have a great impact on the quality of those lives.

I’ve been asked to motivate you. A few months after one of the cruellest Federal budgets I have ever seen. Right! What I love about this conference committee is that they only set small challenges.

So I’m going to start with the words of a poet of our time – she sings them, but I won’t emulate that you’ll be pleased to hear.

“Have you ever fed a lover with just your hands

“Closed your eyes and trusted, just trusted

“Have you ever thrown a fist full of glitter in the air

“Have you ever looked fear in the face And said I just don’t care “Its only half past the point of no return

“The tip of the iceberg, The sun before the burn

“The thunder before the lightning, And the breath before the phrase “Have you ever felt this way…”

Does anyone recognise those words? Who sings them? Yes, Pink, in her Grammy-Award winning song, “Glitter in the Air”. I heard her sing them beautifully in one of her Sydney concerts some years ago, and I was entranced. I listen to them regularly on my iPod.

Many people think they only apply to opportunities for love, but I think they beautifully capture a broader message for life – to throw glitter in the air; to take the opportunities life presents; and to live life to the full. I’m very much in favour of the view that if you’re not living on the edge, you’re taking up too much room.

But living life to the full should not only be an opportunity for four-fifths of the population. It should also be an opportunity for Australians with disabilities. And, despite what the Attorney tells us, discrimination still exists, and we can’t live life to the full. That’s why we need advocacy.

Let me move from one iconic American woman of today, to another iconic American woman of the 1960s – yes, back in that period of history known as the last century. I’m talking about Rosa Parks.

Who was Rosa Parks? Perhaps your recollection will improve if I tell you she refused to sit at the back of the bus. In the 1960s in the US, millions of dollars were spent on providing public transport systems, but in many places, if you were black, you could only ride at the back. Rosa’s action in refusing to do this was one of the sparks for the civil rights movement.

But that was way back then, you might say, it wouldn’t happen in Australia today. wouldn’t it? For many people with disability, sitting at the back of the bus still isn’t possible – we can’t even get on the bus. And that’s just one of many examples where opportunities are not equal in the world in which we all work and live.

Let me tell you a story, because it underlines the importance of the work which we all do, and the amazing assumptions that are often made about people with disability.

I had completed a meeting with some senior bank officials in Brisbane. Walking with my guide dog, I got into the elevator on the 30th floor of their building, at the same time as another person. The lift buttons were not marked with raised letters or braille, so I didn’t know which one to press. Turning to the other man in the lift I said- “Could you press the button for ground please?” I got no response.

Thinking that he may have a hearing impairment, I looked directly at him so he could read my lips, and said a little more clearly “Could you press ground please?” Still no response.

Puzzled, I reached over and tapped him on the shoulder, and repeated my request.

“Oh,” he said, “Are you talking to me? I thought you were asking the guide dog.”

My guide dog’s good, but she hasn’t learned to read lift buttons yet!

I’m sure you could tell me many similar stories about assumptions made about people with disabilities. In my experience, most of those assumptions are negative, and most of them are wrong. But they still keep being made. So people with disabilities keep having to deal with the soft bigotry of low expectations.

Now as well as swimming against the tide of negative attitudes, people with disabilities are disadvantaged – in relative terms – in today’s society. Let’s look at three measures of that disadvantage.

Firstly, there is a high correlation between people with disabilities and poverty. 45 % of people with disabilities live in or near poverty. This is due to low incomes, fewer employment opportunities, and additional costs due to our disability. I don’t need to bore you with all the statistics- you’ve heard them before.

Secondly, whilst Australia experiences relatively low unemployment, this is not the case for people with disabilities. We are employed at a rate 30 % lower than the general population. And when we are employed, we are usually under-employed. And we are often just employed in one position, and forgotten about.

The third indicator of disadvantage is the level of people with disabilities in, or who have been in, the criminal justice system.

There are high rates of people with psycho-social and intellectual disability in prisons across Australia. In fact, prison is a significant accommodation option for people with disabilities. How shameful is that!

90% of women with intellectual disability have been sexually assaulted at some time during their lives. What a shocking statistic!

There are high rates of violence towards people with disabilities, particularly in institutional settings. And when we report it, the justice system doesn’t cater for our particular needs, so it often goes unpunished. You know the statistics better than I do.

So those – and many others I haven’t talked about, but which you understand intimately – are the challenges or barriers facing people with disabilities.

And we as advocates have the task of supporting people with disabilities through or around those barriers – that’s what we’re all about. We have the challenge of assisting people, often with fewer life skills, to make decisions which will profoundly affect their quality of life for the future. So what gets you out of bed is working with some of the most disadvantaged and disempowered people in Australia. So, no pressure, OK! That is a seriously awesome challenge.

Now some of you here might say, at this point in my presentation, that I’m not doing what the conference committee told me to. I was asked to motivate you, and all I’ve done for the last ten or so minutes is tell you funny stories, and demonstrate how hard our job is, and what a huge challenge we have. After hearing all of this, you might just go back to that bed, and curl up in the foetal position.

But I haven’t told you anything that you don’t already know – and yet you’re all here, not in that bed back at home. And why is that? Because we’re in this job – and many of us have been in it for many years – because we – perhaps against the odds – are determined to support people with disabilities to successfully overcome those barriers- and to live life without them. We believe that – just like every other Australian – people with disabilities have a right to take a risk, and to own their own destiny. We know that when we come into contact with people with disabilities, they will be making critical decisions – what you wear, what you do, where you live, where you work – sometimes for the first time. And we believe that it is both their right, and critically important, that they can make those decisions, and not just be presented with limited options. Even though – in some cases – they may make the wrong decisions, we believe they should have a broader choice. Taking that choice away is denying people with disabilities our rights. We are in the forefront of creating opportunities for people with disabilities – and we know that if we don’t facilitate those broad options, the chance to take those risks, and the right to fail, it’s less likely that anyone else will do so.

We know that if people don’t succeed, our job is to figuratively pick them up, brush them off, and support them to try again. We know that if we don’t see potential, and encourage it, and advocate for it, then there is little hope of changing other people’s attitudes. So we find out how to draw out that potential, what skills we need to draw it out, and how to maximise that chance of success. that’s what advocacy is all about- having a can-do approach, and finding a way to remove those barriers.

So you don’t need me to motivate you. You would have to be some of the most motivated people I know to continue with these challenges.

There are many different ways and forms of advocacy. You know more about them than I do. But let’s look at a story from the Twenty Years, Twenty Stories series, made while I was still at the Australian Human Rights Commission, which illustrates two contrasting advocacy styles.

Video: Room For Change

[youtube https://www.youtube.com/watch?v=D3ErxMvdDPo]

So, let’s go back to being some of the most motivated people I know. But, rather than allow us to rest on our laurels, as the committed change-agent that I am, I want us to continue to find those barriers, and to work with people with disabilities to overcome them.

When I was young, many people told me I couldn’t be a lawyer, and many others wouldn’t give me a legal job. But I, and people like you who advocated for me all those years ago, knew that I could. I can’t imagine my life without the chance to take the risks I took to get where I am today. I can’t imagine a society diminished because it lacked the contribution that Australians with disabilities can make, in all areas of life. And I’m profoundly saddened by the knowledge that many people with disabilities were never encouraged to take those risks, and grab those chances. So, thanks for the work you do to give others the chances, and the encouragement, I was given all those years ago.

You should use this conference to hone your skills, and replenish your energy. Advocacy and barrier removal needs all of the skills and energy we can muster.

And continue to work hard to provide those opportunities for the people for whom we advocate. Don’t be stopped by thinking that you – one individual – can’t make a difference. Because the reality is that it’s only individuals who ever do make a difference.

Encourage and work with clients to remove those barriers, grasp opportunities, live on the edge, and throw that glitter in the air.