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Lunchtime Webinar 2 with ANZTSR 

As part of the Strengthening Australian Civil Society initiative, the Sydney Policy Lab has joined forces with Australian and New Zealand Third Sector Research Inc (ANZTSR) to host an exciting series of lunchtime webinars on advocacy in 2021. The seminars are recentered around the interim findings from the Strengthening Australian Civil Society research, inviting leading scholars and activists from various sectors to reflect on what it takes to advocate for change and providing opportunity for members of the public to engage in the debate.  

After the success of our first seminar, we followed up with a  robust discussion on the success of the NDIS campaign and the need to continue the fight today. The panel was made up of an amazing group of speakers including: 

  • Kirsten Deane, the General Manager of the Melbourne Disability Institute and experienced campaigner, strategist and policy advocate instrumental to the campaign for Every Australian Counts, the grassroots campaign that fought successfully for the introduction of the NDIS. 
  • Damien Griffis, a proud descendant of the Worimi people and CEO of the First Peoples Disability Network and leading advocate for the human rights of Aboriginal and Torres Strait Islander people with disability 
  • Samantha Connor, President of People with Disability Australia and long-term disability and human rights activist who was instrumental in fighting for the rights of her community during the campaign for the NDIS.   

Margaret Spencer, lecturer in the School of Education and Social Work at the University of Sydney and member of the ANZTSR Executive Committee opened the event and Mark Riboldi, Collaborative Research and Policy Manager at the Sydney Policy Lab, chair of the event. Mark explained some of the work we have been doing at the Policy Lab and introduced the formidable speakers for the day. The themes explored covered how to create an Overton window when the 


1.Creating the Overton window 

The National Disability Insurance Scheme (NDIS) was not initially part of the public policy discourse, and thus the inception of it came about from a strong campaign that understood the core challenges. Kirsten explored the initial obstacles:  

  • Firstly, the campaign needed to challenge public assumptions about what it means to be disabled in Australia by illuminating the lack of supports available and the difficulties faced by people with disability in everyday life.  
  •  Secondly, the campaign faced a political arena where there was very limited understandings of issues facing people with disability and very little political will to do something about them. 
  •  Finally, the campaign had very slender funding and a small campaigns team 

Despite the challenging environment, Kirsten emphasised that at the core of the Every Australian Counts (EAC) campaign was an understanding that immense trust and valuing campaigners’ inputs is essential to effective advocacy work. This allowed for them to build strong working relationships, an effective coalition and push the Overton window, to make the NDIS a reality. The importance of trust and deep relationships and involving those with lived experience to shape campaign goals, strategies and tactics, is consistent with the Strengthening Australian Civil Society initiative’s interim findings.  


2.“Nothing About Us Without Us” 

All the panellists emphasised the core tenet of disability rights “Nothing about us without us”, emphasising that people with disability are centred in all aspects of decision making, from creation to execution of disability policies.  

Damien argued that policy lacks legitimacy when it is not built by and with the people it is about; “you can’t build anything if the people who it has been built for or about are not in the room”. Samantha grounded her activism in her experience of disability, explaining that her autism is one of the reasons why she has such a strong sense of social justice as it allows her to see patterns and “understand both where people are going with things, and how things sit together in the big picture as well as the micro detail”. Kirsten explained that senior levels of the NDIA are extremely removed from the grassroots origins of the EAC campaign, so much so that “what they proposed was fundamentally the exact opposite to what we fought for”.  All panellists implored advocates to make sure that they listening to and elevating the voices of those they are advocating with to ensure the legitimacy of their campaigns.  

Damien explored the importance of advocates centring First Nations voices at the heart of their disability campaigns. He pointed out that the rate of disability in First Nations communities is twice that of the rest of the Australian population, yet First Nations people with disabilities regularly are omitted in campaigns around disability.  For the First Peoples Disability Network (FPDN), it was essential that the campaign for the NDIS addressed the specific needs of First Nations people with disability. First Nations languages do not have a word for ‘disability’, rather they discuss disability in an “impairment-based way”, that does not exclude people from the broader society, yet acknowledges their individual needs.  

This contrasts with colonial understandings of disability that views people with disability as a heterogenous group separate from the non-disabled population. By pushing for the distinct needs of First Nations people with disability, the FPDN sought to ensure it was understood that “First Nations people with disability are integral to the success of the scheme”. And that where “there is a new system being created, there is a group of us in the system that need our own structure”. 

Kirsten expressed her frustration with analysis of the NDIS campaign that often tries to attribute some sort of “secret sauce” within the campaigns team, rather than understanding that the campaign for the NDIS was won because of the hard work of the people with disability and their families. 

 3. Organising 101 – building leaders

The EAC campaign understood the ability of people with disability to advocate for their own needs when they were provided with the right tools. Kirsten described how the campaign for the NDIS was inherently inclusive in its approach, ensuring that there were many ways for people to get involved. Many of the supporters of the campaign were had never done this type of campaigning, activism or advocacy before. By creating multiple entry points to the campaign, EAC was able to take people on a political journey, building their skills in a way that enabled new organisers to emerge. As Kirsten acknowledged, the wide range of entry points and investment in the political journeys of the people involved in the campaign meant that people became “willing to take further and further steps to be more involved” and has ensured long-term activism around the NDIS. 

Samantha similarly pointed out the power of accessible campaigning. By making sure you can “engage with people in a way that they understand and do not necessarily feel threatened and targeted by” you allow space for new organisers to emerge. She argued that people with disability are well primed for the sort of creative activism that was required for the EAC campaign as “because we are a creative people.” The campaign for the NDIS saw them create a nude calendar, put campaign tee-shirts on statues around the city in the dead of night and use technology in innovate and accessible ways that engaged people with disability in the campaign. She explained how they utilised the power and skills that they had so that the campaign appeared larger than it was.  

By genuinely appreciating, utilising, and developing the skillsets of the people with disability campaigning, the EAC campaign was able to organise a formidable force of people that could not be ignored. 

4. Where to From Here? 

The panel highlighted the need for NDIS advocates to address systemic inequalities as they look to building a more inclusive NDIS.  

Samantha explained that the NDIS “started out with amazing foundations and an amazing premise that it would give all disabled people in Australia the opportunity to have the same life chances as other people”. As the scheme progressed “extreme power differentials” have meant that some people are prioritised within the NDIS and other people are “left behind”. Changes like independent assessments, the payment scheme and the cashless debit welfare card have meant that the NDIS no longer supports those who need it the most and people with disability have lost “power and control over their own lives”.  

Samantha explained how privatisation and poor public policy choices have slowly eroded the core ideas of the NDIS and that now advocates are campaigning for many of the same rights that they campaigned for originally. By not addressing the needs of those most marginalised people with disability, like those living in poverty or First Nations people, the NDIS has failed to meet its original goals and Samantha urged the audience that it was now time to “reclaim the power”. 

Damien explained that the FPDN’s hyper-vigilance to the normalised exclusion of First Nations people has meant that they are able to “keep eyes wide open” to recognising when a campaign or policy does not represent First Nations peoples’ interests. The co-opting of language like codesign, has seen the watering down of disability rights terminology until it no longer serves its original purpose. Damien explained how this language is “used back at us” to reduce the power that these terms hold. After creation of the NDIS, Damien noted that the NDIS had strayed so far from its original purpose that the fight for NDIS must continue today.  

The panel pushed us to understand the importance of listening to, learning from, and elevating the voices of people with disability. It demonstrated the power of activating communities that are often overlooked and the need to remain vigilant to ensure that people with lived experience remain at the heart of shaping, developing and leading advocacy around the issues they face.   



Our team will continue to host exciting and interactive events like this over the coming months, so make sure you have signed up to receive updates when we release them.

At its heart, Strengthening Australian Civil Society is an ongoing conversation, a meeting place for people and organisations to share ideas, find common purpose and generate new relationships for change.

If reading this short piece has provoked thoughts and ideas on campaigning or another aspect of civil society, please get in touch and share where you’re at.

Mark Riboldi

Mark Riboldi

Mark is a researcher at the Sydney Policy Lab, with a focus on collaborative policy development and the intersections between communities, governments and civil society.