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Elly Desmarchelier Will Fight For Every ‘Little Elly’ Living With Disability

“The people with disability who will come after me are the fuel to my fire."
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It was the most important meeting of my life. I’d just helped launch a national campaign, Defend Our NDIS, outside Parliament House in Canberra on Budget Day, 2022.

We had scored a meeting with two of the people we most needed to support the campaign: opposition leader Anthony Albanese and shadow NDIS minister Bill Shorten. They helpfully invited the entire parliamentary press pack as well. No pressure.

As I sat in a basement waiting to go through security, without realising I said out loud, “I’m so nervous, I feel sick.” My support worker, knowing me far too well, leaned over and whispered in my ear, “Think of how proud little Elly would be right now.

In that moment, when the pressure was sky high and it was time to deliver, what grounded me was remembering why I do this work. Little Elly is a phrase I use to describe my younger self, but it’s also the phrase I use to encompass the next generation of people with disability who will come after me. They’re the fuel to my fire, the reason I fight to make the world a more inclusive, accessible and equal place to live.

When I think of me as little Elly, she is a very smart, chatty girl with cerebral palsy who at 10 years old is already obsessed with watching the news and “doesn’t like that prime minister with the bushy eyebrows”.

She’s brilliant but she’s also desperately trying to hide those traits because they make her feel different from the other kids at school and all she wants in the world is to have friends.

I now campaign for more funding for mental-health services, so that all the little Ellys can get their ADHD and autism diagnoses while they’re kids and not in their late twenties, like I was. That means little Ellys everywhere will understand their brains better, knowing they’re wired a bit differently but nothing about them is broken.

Elly Desmarchelier
Elly Desmarchelier at marie claire’s Women of the Year Awards 2022. (Credit: Getty.)

I fight for a better NDIS so little Ellys never have to watch their parents take out a loan to buy them the scooter they need to get around school. And I won’t stop fighting until there is not a single kid with disability in Australia who has to see their mum struggle to decide between paying the electricity bill or taking her daughter to physio.

I campaign for more inclusive education because I want all little Ellys who dream of being the next Ruth Bader Ginsburg to finish their law degree, not drop out two years in because universities refuse to follow the reasonable accommodations disabled students are entitled to. I will never stop talking about how we need to make communities more accessible until little Ellys never have to ring a restaurant or bar to check there are no stairs or if the lift is working.

You’ll keep hearing me challenge outdated stereotypes until the thing little Ellys are most nervous about before going on a first date is what they’ll wear, not if their date will bail once they realise they’re disabled.

I will not be silent about the unemployment rate for people with disability remaining unchanged for 30 years, nor will I be silent until little Ellys don’t have to hire lawyers twice before the age of 30 because their workplaces discriminate against them.

My job as a disability rights campaigner has nothing to do with improving my own life. It’s about making the path I travelled smoother, safer and more equal for those who travel it after me.

Sadly, that path is still dangerously uneven, with constant barriers stacked against people with disability, particularly women. That’s why this IWD I’m reaching out to all women to ask you to lend a hand and smooth the path with me, so we can help all little Ellys on their journeys to be whoever they dream of.

This story originally appeared in the march issue of Marie Claire Australia.

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