What Do You Do? Hope in Disability Policy Advocacy

As we approach the end of 2024, it seems an appropriate time to reflect on both the progress that has been made in disability equality, but also the things that we all do to protect ourselves and sustain our collective and individual advocacy efforts. In the Spring 2024 Edition of the Canberra Disability Review , Editor Rob Donnelly invited readers to do this, by responding to the question: What do you do that helps you to keep going, and maintain some measure of hope, when progress towards a fairer and more inclusive Australia is under heavy fire?  

Advocacy for Inclusion’s Head of Policy, Craig Wallace, and the Disability Leadership Institute’s CEO and Founder, Christina Ryan, shared their perspectives. To see the original articles, visit the Canberra Disability Review.

Christina Ryan, CEO & Founder, Disability Leadership Institute 

We’ve had several years of major processes and reforms, including the Royal Commission, the NDIS review, the registered provider inquiry, more reviews of the advocacy sector, and most recently the NDIS legislation process. This has all been happening alongside our usual work of implementing the CRPD, engaging with the United Nations, and keeping in touch with our international colleagues about latest developments. A lot has been going on.  

Many of us felt deflated with the government’s underwhelming response to the Royal Commission. We waited a long time for the government to work out how it would respond, and ultimately, they couldn’t even accept the recommendation that disabled people should be consulted. It has left a lot of people asking where to from here? It has been very difficult to see if we are achieving any real change with these processes. It is always hard to see change when we are working flat out at the coalface every day. At times like this I pull back and look at the bigger picture; our disability rights movement is about equality and how we are getting equal.  

When I look back over the last decade one big change becomes obvious: disabled people are now expected to be in the room. A decade ago, we were knocking politely and asking that disabled people be part of the conversation, that we be a part of discussions about how our lives looked and how much we controlled them. Disabled people now have power that we have never had before. We have gone from asking to be in the room, to expecting to be in the room. No process about disability is considered legitimate today unless disabled people are there. Our voices are stronger than ever. We have developed our own power. Its time for us to use it!  

Craig Wallace, Head of Policy, Advocacy for Inclusion 

The road to progressive reform is never a straight one – there are always unexpected turns and reversals.   

However, the disability community in 2024 is very different to where it was in the mid-nineties when I was working in the Commonwealth Office of Disability.  Back then disability was an issue stuck in the political parking lot attracting second rate politicians and low-level media coverage. I used to look at the state of things with great disappointment and wonder if the wheel would ever turn.  

Well it did and we’re simply not going back to those times even if the Govt wants us to – the levels of political attention and investment are very much amplified in the 2010’s and 2020’s and that’s here to stay for a while.  So, there is cause for optimism about better days.  

But we do need to be honest and take stock.  We spent over a decade fighting for a vast costly Royal Commission which the Government has largely ignored and an insurance scheme which has now been partly wound back by the party that introduced it.  The case for desegregation in housing, employment and education hasn’t stuck nor are we really getting anywhere on the big structural impediments to freedom and security – access, housing, incomes and poverty.  This comes on top of the way people with disabilities have been treated in COVID.  COVID was a stress test for all the rhetoric about disability rights, equality and inclusion and the value of disabled lives which we’ve reached for since the 1970’s. It’s a huge reality check to see how quickly support for all of that evaporated across the world. Community support for disabled people exists but it is fickle and fragile, and some things are going backwards.   

Going forward there are lessons to be learned about how the movement is organised and brings home the outcomes.  For instance, activists and advocates like me are very good at making noise and catalysing change but not so adept at sealing the deal, shaping the outcome and constructing the world we want.   We need to find some ways to keep some ‘spoons’ left over after we get to the finish line.  We need to stay on track for the boring bits.   

It’s a solace working for a State/Territory DPO where we occasionally see outcomes all the way to implementation.  Here in the ACT, we’re actually having a pretty good 2024.  The ACT Government has committed to funding for the ACT Disability Health Strategy and the ACT Disability Strategy.  We’ve got a real strong body of work on disability justice which owes much to people like Christina Ryan.  We’ve had considerable pick up of our asks with the Independents and the ACT Greens in areas like planning and advocacy funding.  We have sound relationships and access to Ministers and the Opposition frontbench and the Assembly’s committee system. 

Some of this is because we live in a progressive jurisdiction but it’s also because of the way activists and advocates collaborate here.  We have a united front across a set of great DPO and DRO organisations including WWDACT, ACT DSAID and MHCC so we can work lots of spaces at once.  We also have a pretty high functioning Disability Reference Group with a fantastic chair in Renee Heaton.  We mostly manage to avoid the infighting and lateral violence which sadly seems to sap a lot of time and energy elsewhere.  AFI has a great staff team who are motivated and have good values.  

It’s important to value the assets we have but we can’t be complacent here either. The ACT has real problems and real suffering, especially for people who are getting older and needing health care as well as in inclusive education.   We have a lot more to do. 

 Moderator: Molly Saunders (@mollyess22)