I'm Elly Desmarchelier. I'm a proud disabled woman and I am also a disability rights campaigner, and that means that I advocate on behalf of the one in five Australians who live with a disability.
I've lived mostly in the inner south of Brisbane, so yeah, proud Brisbane girl. My mum was a high school speech and drama teacher, but I remember very clearly I was about 10 years old when I got home one day and my mum sat me down and she said, 'I've had a long chat with your dad, and we've made a decision, but it'll mean a lot of sacrifices from everyone. I want to go back to university and become a lawyer.' And I said, 'mum, of course. Girls can do anything. Go ahead.'
I'm very different from my parents, but I think that decision by my mum is very in keeping with decisions I make, which is: hard things are hard.
The NDIS is a social and economic reform on the scale of Medicare. It has changed the Australian economy, and it has changed the lives of the 500,000 Australians with disability it supports in transformational ways. I was a national spokesperson for the Defend Our NDIS campaign. We had some really clear goals. We wanted to make sure the NDIS was on the election agenda, and we wanted to make sure that people with disability felt like they had an avenue to get involved in the election. One in five Australians have a disability, and yet were kind of ignored by the political parties as a serious voting demographic. I wanted us to be taken seriously.
There was a avalanche of stories of people's plans being cut and not small cuts. We're talking 50, 60, 70% of their funding cut. That means they're not able to go out into the community. They're not able to shower. They're not able to eat. Really basic things.
I was speaking to the campaign director and we were talking about how hard it is finding stories and if we're going to get any attention on this launch on budget day. And he was like, 'People are just too scared to come forward.' And I think it's the single most important and the most terrifying piece of activism I've ever done, which is I shared my own NDIS cut story. And I went, they did cut my plan. They only gave me six months of catheter bags for a 12 month plan and he went, 'Catheter bags? That's the story.'
I reached out to the project who I have worked with before, that story aired, and I had a response I had never received. It was overwhelming. And the next day, we launched the campaign outside Parliament House.
I was just about to meet with Anthony Albanese and Bill Shorten. I was told I had 10 minutes before they arrived, and I was being a bit cheeky with my support worker and spotted the Julia Gillard portrait. Mr. Albanese walked straight up to me and he said, 'I saw The Project. I'm so sorry for what happened to you. We're going to get the scheme back on track.
After that day at Parliament House, I woke up and there sat a 'Hello from Julia Gillard' email.
'Thank you for your very kind words. I wish you the best of health and every success in your advocacy work for and on behalf of every Australian relying on the NDIS for a better quality of life. You are an inspiration. Kind regards, Julia.'
Nick: Special, hey?
Elly Desmarchelier: Yeah.
Julia Gillard was the prime minister when the NDIS passed Parliament and became law. In that photo, she saw a young redhead woman who was feisty and determined and was there to protect something that she also felt very protective over. It makes me feel like I want to make her proud. People with disability for decades have been told they have absolutely no power. So why would they think they could change things? So as a disability rights campaigner, one of the main jobs I have is to remind people with disability that their voice, their vote, their campaign, their issues are just as important as those of people Without disability, I can't have them fighting the same battles that I'm fighting.
So those are the people that drive me, is the little Ellys that are there now and the next generation of little Ellys, and I just don't want them to have to go through the same experiences.
You've just got to make the path smoother for those coming behind you.