I was surprised recently to learn that If you have a disability and use a wheelchair or similar mobility device and use a modified vehicle you may be eligible for a 100% discount on your annual vehicle registration fee. This is my latest bureaucratic Journey.

I recently watched a fabulous documentary called Crip Camp. It provided compelling insight into the American civil rights movement as it relates to people with disabilities. The show was powerful, humbling and inspiring, and got me thinking about not only the work that has been done but how we can all play a role in achieving universal equity.

Crip Camp is set in the heady era, beginning in the 1960s, of rebellion. Dylan’s times a’changing, Woodstock, Black Panthers and eye-crossingly tight jeans, the time was a bubbling hot pot of radical societal transformations. And it was the time for Judith Huemann, a documentary subject, to pick up the momentum of the disability civil rights movement that she had been enacting on a personal level from a very young age.

For some time, I’ve wanted to write about my experience as a participant of our National Disability Insurance Scheme (NDIS), a scheme established under the management of the National Disability Agency (NDIA). If I had shared my views in 2019, twelve months after I started on the scheme, I would've been full of praise. The NDIS has liberated my life, and that of my informal (unpaid) carer-husband Gary. We have regained to a large extent, the choices of earning, studying, travelling, and pursuing hobbies. I am immensely grateful that I live in this privileged country in which equity (as it relates to many people with disabilities) has been made a high priority.

But I am now acutely aware of how much the original vision and purpose of the NDIS has deteriorated.

Pre-election, Australian Prime Minister, Scott Morrison made his now infamous and controversial ‘blessed to have non-disabled children’ statement.

I’m a disabled woman. But I get it.

I might have said something similar 30 years ago as an able-bodied new mother of three neuro and physically normative children. I was ignorant and unaware of the attitudinal, structural and systemic barriers faced by disabled people and their carers in every facet of their lives.

Whether you are in retail or hospitality finance or construction, there are many compelling reasons why you should be actively hiring people with disability. And in these pandemic times, with unavailable Visa workers, this is more pertinent than ever. Anecdotally, many employers avoid what they see as a complicated employment scenario – they unreasonably foresee high costs, unreliability and integration difficulties. But with only 53% of our 4.6 million people with a disability in meaningful employment compared to 84% of non-disabled Australians, we have a significant problem to overcome.

Eventually, I realised that I wasn’t sharing everyday experiences in the same way as I used to with my friends and family. Hobbies and interests such as photography, gardening, baking and sewing became less autonomous and spontaneous and more reliant on assistance from others. Conversations regarding new methods in cooking became increasingly irrelevant. Despite equipment adaptations including a lighter camera, photography and all its artistic embodiments was not available without significant compromise, including having another person programming the settings and shooting. Sewing and quilting have followed a very similar path for me. Socialising involves considerations regarding toileting, resting beforehand, ensuring accessibility and not feeling self-conscious having your food cut up for you - and significantly adapted ( let’s say improved) dance moves.

Enjoying an outing today are we? This was a question I was asked when at my local garden centre recently. One small comment but one huge indictment on society’s perceptions of disability. The guy seemed nice enough, displaying well-maintained teeth in his wide, jovial smile, just another customer like me. Unlike me, he wasn’t in a wheelchair, and neither was my companion, who didn’t get asked if she was enjoying a nice day out.

On a ranking of awful things to say to someone this barely makes a mark in the thoughtful-to-heinous greetings scale but two things bothered me about this question: