It's Pay Day! The ABC's new column where we ask Australians the money questions we don't like to talk about. We aim to demystify personal finance and normalise conversations about what we earn and how we save it — or spend it.

Elly Desmarchelier is a disability rights advocate, writer and public speaker who through her advocacy is determined to create positive change for the 1 in 5 Australians with a disability.

For Pay Day, Elly shares her salary sacrifice regrets, a Mad Men-inspired furniture investment she stands by, and sheds light on the financial impact of living with a disability. 

How would you describe your financial situation right now?

I am extremely fortunate that I make enough money to live very comfortably while also being able to work for myself.

Of course when you make your money off project work or speaking engagements like I do, there's always the risk people will just stop hiring you, so there's a constant balance between building a strong, sustainable business while also doing day-to-day work.

How was money spoken about in your house growing up?

When I was very young we didn't have much money, so it was always a topic that caused stress and anxiety in our house. Were we going to pay the rent or the electricity bill? Often we couldn't make both work. But even with very little, my brother and I never missed out on the important things we wanted — playing basketball, swimming lessons and school excursions. My parents somehow prioritised these things above all else.

When I was in my teens, my mum went back to university, studied law and then got a well-paying and stable job in the public service. This completely changed the way our family felt about money. What I learnt from this class transition — going from poor to upper-middle class — was that money comes and goes.

What did you spend your first pay cheque on?

I can't remember my first pay cheque, but I clearly remember when I lost my first election as a staffer I received a payout because I lost my job on the spot. I was 18 years old and moving out of home, so I needed so many practical things like a couch and a fridge — but no, I bought the most beautiful 1960s mid-century Danish sideboard because I had an autistic obsession with Danish design (thanks Mad Men!), so it had to be mine.

It's designed to be a bar, but in a very ironic disabled person move it's now my medicine cabinet! The most fabulous medicine cabinet you'll ever see.

About how much of your income goes towards your rent or mortgage each week?

I live in supported disability accommodation that I access under the National Disability Insurance Scheme (NDIS).

What this means is that I live in a unit that has special modifications that make it accessible for me to live in.

For example: I can use my wheelchair and get through wider doors, benches are at the right height and my front door is automated. The rent I pay is around 25 per cent of my income. This has been a game changer for me — to access my house and particularly my bathroom independently. For years I lived in inaccessible housing that was unsafe, expensive and isolated me from the rest of the community.

But let's remember that as of 2022, around 10 per cent of people with disability have access to the NDIS, and most still have to compete in the rental market and find an accessible house — it's almost an impossible mission.

What has been your biggest financial disaster?

I salary sacrificed a car through my work. In a series of unfortunate events, I became extremely unwell, so had to leave my job. As per the salary sacrifice contract (that I clearly didn't read in full) it became a personal loan with a bank I would never choose.