Growing up in the 80's with a disability was no mean feat.
We had to deal with inadequate resources and an expectation that we should be grateful for what we received.
For me, it was my prosthetic leg, bog-standard and basic.
For Kurt Fearnley, it was his wheelchair and an occupational therapist who told the former sportsman he should be thankful for what he got.
"You are the burden, but we will give you [a wheelchair] and you will be happy," Mr Fearnley told me this week, as we reminisced about the era before the National Disability Insurance Scheme (NDIS).
We also had no disabled role models in leadership positions.
Growing up, I believed I could only be a disabled athlete or live on disability benefits — I felt I had no other options.
On Monday Mr Fearnley made history when the Minister for the NDIS Bill Shorten announced him as the first person with lived experience of disability to be the chair of the National Disability Insurance Agency (NDIA), which runs the NDIS.
Mr Shorten said Mr Fearnley's contributions to sport, the disability sector, and his advocacy for people with disability made him exceptionally qualified for the role.
For 18 years Mr Fearnley represented Australia, winning three Paralympic Gold medals and competing in more than 40 world marathons.
He also further proved his athletic mettle by completing the Kokoda Track in 2009 and sailing in the 2012 Sydney to Hobart Yacht Race with the winning crew.
No stranger to fighting for the rights of people with disability, in 2009 Mr Fearnley blasted Jetstar over their wheelchair policy; he crawled his way through Brisbane Airport to make his point.
For all his past work, this week Mr Fearnley began his biggest advocacy role to date.
A breakdown in trust
The aim of the NDIS is to provide funding and support to enable people with disability to gain greater independence in life.
There are over 530,000 participants on the scheme.
The program has helped many people with disability move beyond the bog-standard provision of inadequate resources.
But that's not to say the NDIS is perfect.
Mr Fearnley joins the NDIA after a difficult couple of months.
Earlier this year chief executive Martin Hoffman and chair of the board Denis Napthine both stepped down within weeks of each other, leaving the agency leaderless until now.
Mr Hoffman came under criticism as head of the agency during the coalition government's attempt to roll out its hugely contentious independent assessment reforms a few years ago.
The reforms were almost unanimously opposed by the disability community and left many with a distrust of the NDIA.
Broader, more systemic issues have also been exposed in recent times, including funding cuts to people's packages and the increase of participants taking the NDIA to the Administrative Appeals Tribunal.
A seat at the table
With Mr Fearnley's new position as chair, the disability community is optimistic they finally have a seat at the table.
Jean Cotchin, a campaign manager at Every Australian Counts, the grassroots campaign that fought for the introduction of the NDIS, said this was a huge step in the right direction for the scheme and disability community.
While trust between the community and the scheme has been lost over the years, Ms Cotchin has faith, with Mr Fearnley as chair, it can be rebuilt.
"The whole system has done so much damage and caused so much grief and distrust," she said.
"It's going to take a lot of time and a continuous effort to really start repairing that trust."
Catherine McAlpine, the chief executive of Inclusion Australia, the national peak body for intellectual disability, said she was delighted about Mr Fearnley's appointment.
"He has a long history of challenging mainstream perceptions of disability and speaking up for people with a disability and families," she said.
Ms McAlpine said there were too few people with disabilities in positions of leadership.
"This is especially true for people with an intellectual disability, who are too often framed as a burden, not contributors," she said.
Inclusion Australia's hope is that Mr Fearnley's appointment will lead to more opportunities for people with disability, including those with intellectual disability, to have key roles and properly paid jobs within the NDIA.
Mr Shorten also announced on Monday the appointment of new board members — former disability discrimination commissioner Graeme Innes and long-time advocate Maryanne Diamond — who are both blind.
These appointments are record-breaking.
"We now have five of the directors and chair who are people with disability, which is the highest number that the scheme has ever had," Mr Shorten said.
With new leadership coming into the scheme, the minister said he was confident the NDIS will return to its original objectives of giving people with disability more choice and control over their lives.
"Mr Fearnley is a trusted disability advocate and I rely on his knowledge and experience like the sector does."
'Nothing about us, without us'
Mr Fearnley told me this week that since the announcement he's felt both intimidated and excited by the amount of "amazing goodwill" shown towards him.
"The community really wanted to see themselves in this scheme. They really wanted to see disability in key positions," he said.
There's a saying in the disability community: "Nothing about us without us."
And until now, with so few people with lived experience of disability at the top of the NDIS, it could be argued many things up until this point have not been in line with that ethos.
Mr Fearnley said reaching out to disability organisations had been his first priority this week.
"This isn't a role that you can barricade yourself into," he said.
The NDIS is about human rights, Mr Fearnley said, and as a community we are worth the cost and the effort.
"If we have a healthy NDIS that is giving choice and control to people with disabilities lives, that is giving fair and reasonable adjustments to live a good life, I believe that if we nail that then we're living up to the principles that I believe Australia is."
Source: ABC