Launch of the “What Does Chris Want” project

*Check against delivery*

I would like to acknowledge the Nolan family, Mary Nolan of course and all of your assembled friends and of course Chris himself.

I think it’s important to do that because the book that is being launched is about the importance of family and friend in the treatment of people like Chris who have an acquired brain injury.

If it is ever appropriate to use words like good fortune in relation to what has happened to people like Chris, it is in the fact that so many strong friends emerge.

It should be all of you giving the speech, not me.

You have no idea how pleasing it is to see you all here.

There are many people like Chris who do not have the same network of support, and this turnout it is a testament to the strength of Chris’s friends and family.

There are so many people in the community that do not have the network that Chris has.

You should all, well I won’t say you should be proud, but it is a very lovely thing that you are all here tonight.

This group, “What Does Chris Want,” was founded in 2004 and consists of 18 people.

You are truly the guardian of Chris’s hopes and dreams for the future.

Anyone who has to deal with the medical system and the community in regard to establishing the rights of a person with a disability, regardless of what they think about politics, becomes part of a political process.

And what you do for Chris, even if you don’t see it as such, you also do on behalf of all of the hundreds of thousands of people in Australia with severe disability.

I had some good words to say about the book, but Rosalie did it better, so I’ll move on.

I’d like to go back to something that has already been briefly touched upon by Richard, how fate brings people in and out of each others lives.

When I got the portfolio one of my staff had been a journalist, and had worked at one time alongside Mary and Chris and I said “Chris Nolan, I knew a Chris Nolan.”

He was at Monash, he was at Mannix, he was a really good footballer – a very good lawyer. Chris was one of those people who when they stand up, everyone else in the room asks “where are we going?”

I knew that he was doing the festival, getting that going, and that was great because he’s a natural organiser, but we fell out of touch as people do, and nearly two decades later we’re back in touch again.

I remember Chris then and I also see him now and one of the common themes is that he has this capacity for friendship, and obviously as you meet the Nolan family, you realise that they all, especially his mother, have a capacity to get things going and to get things happening.

And that is really what this is about.

When you think about disability, and I am a politician for better or worse and I see things politically, when you talk about socio-medical treatment it just means you have to look at people as individuals, you can’t just put them into silos of care.

What I see when I am in this room, with this gathering, is that there are so many people with disability who are simply invisible.

It is a disgrace in this nation that people with disability by-and-large are treated, despite the best efforts of their friends and family, as second-class Australians.

We Australians are not malicious people, but when we set our minds not to know about something we can really be ignorant. And disability is invisible.

That is why I am delighted to be at this gathering launching this book, because the people who are here are saying that disability doesn’t have to be invisible.

What you, and Mary and Rosemary understand is that impairment is a fact of life: you can be born with it, you can acquire it in the blink of an eye or you can get it as part of growing older. Impairment happens.

What disables people is not their impairment but society’s attitudes towards it. What disables Chris is not his impairment but a community which cannot cope with that impairment and treats him as invisible.

I was talking to some of the other mums here today and that conversation reminded me of this next thought.

It is not that Mary Nolan is a saint, sorry Mary, it is not that any of you are saints or that Chris is a saint.

The reasons that any of you do what you do, you don’t do it for the medal, you don’t do it for the pat on the back, you don’t think that what you are doing is particularly special, you do it because you love the person.

And that’s what people mean when they say “I don’t know how Mary does it.”

I know she has remarkable reserves of courage and tenacity, as Chris does himself.

The issue with disability is not saying “oh how do those special people do it” – that’s not a good enough statement to deal with Acquired Brain Injury or any other form of impairment.

People do things because that’s what they’re DNA hard-wired to do. But it is not enough that the community to rely on the charity of some people, it is not enough that we have to rely on private fund-raising efforts.

What about the remarkable Chris Nolan’s whose families don’t speak English, what do you do about the Chris Nolan’s who come from families that aren’t as strong?

What do you do about the Chris Nolan’s who don’t have the same personal resources or the personalities which inspire others?

It is not enough in Australia in 2008 just to have the $20 information kits, although they are great.

There’s plenty of individual money and generosity and plenty of individual power behind Chris but what he lacks and what people with disability lack generally is that nobody goes to elections voting on disability.

When you talk about disability the most common response is “I don’t know how they do it” followed by “there’s never enough money for disability,” as if they’re some undefinable group of charity cases.

This nation is rich enough to provide long-term care and support for people with impairment so they can enjoy an equal life.

We are not too poor, not withstanding the Global Financial Crisis.

The issue is not that the nation is too poor to look after people with disability, but that you need to demand of all political parties. “What is your policy on disability?”

At any time we can find out the policies on tax cuts, the environment or industrial relations, but what about disability?

The media has a role to play here as well, the media by and large ignores disability.

The reasons you are here is that you know Chris, or you know his family or you heard the story and you were inspired by it…but unless you are personally affected by someone with a disability people, don’t pay enough attention.

So, Chris Nolan’s case is not too hard, charity is not a sufficient prescription. The idea that the medical system should treat families not as a nuisance but as an asset is the way to go.

Even down to the very basics, and I’ll conclude on this. Why do we have houses and shops, which won’t allow people to enter? Why do we have high unemployment rates for people with disability? Why do we have a high rate of people with disability in public housing? Why do we make it harder for people with disability to get a tertiary degree? Why can’t we fully fund integration of mainstream schools? Why is there insufficient early intervention? Why are so many parent carers of adults with disability suffering anxiety that they will predecease their adult child?

These are all legitimate questions, but the only way it changes is through political action by you.

We are doing a lot in the Rudd Government to work for people with disabilities but a lot of it is up to you, not to me.

That’s why I am here launching this book, and what Chris and others like him requires in the future is that we should all be demanding his rights to equality when Chris can’t articulate those right himself.

A classic example, and I’ll finish on this is: if the bus won’t stop to pick up the person in the chair, or with a disability or with a mental illness, then that is not going to change unless the people on the bus demand that the driver makes the changes that recognises the capacities and rights of people regardless of their impairment.

That is, I think why you are here today, not because you’re necessarily making a political gesture but because you think that Chris Nolan is important, that the Nolan family is important and because you think that Acquired Brain Injury is important.

The book is fantastic but I think there is so much more to be done. I’m an optimistic person and I think the fact that we are all here, celebrating Chris, celebrating his family’s support and pushing the idea that the system should be more joined up than it is a great thing.

But what I’m asking that as well as being here to launch this book is that next time you write a letter to the paper, why don’t you write it on behalf of people with disability, next time you see a person crowded shopping aisle and a person in a chair who can’t move, why not ask the manager what they’re going to do about it.

Next time you see an issue on the TV why don’t you join your voice to say this isn’t good enough.

Next council, state or federal election, why don’t you demand the disability policies of all the players, and demand that they do more for people with disability than they are currently doing.

There’s no doubt we’re doing good things in government but I look at the power of the people in this room and I believe you have the capacity and the goodwill to unlock the barriers that Chris and Mary and the rest of the Nolan family have had to overcome.

So it is a pleasure to be here with you tonight and thank you.