Disability is about Us. You, and Me.
Hello there, I so appreciate you stopping by my little corner of the internet. Here I share my ordinary, extraordinary life, the first 40 years of which as a woman with no physical limitations and the last 17 as a woman with an increasingly severe physical disability.
Disability is about all of us. I am one of 17.7% of Australians that have a disability and Gary (my guy) is one of the 10.7% unpaid informal carers. Naturally, at least another 40% of Australians will have interactions with someone with a disability. And the remaining one-third have some knowledge of or experience with a disabled person.
I am also in a unique category of only 150,000 Australians with a severe disability and only an estimated 500,000 affected by LGMD worldwide. Yet discrimination and ignorance persist, taking away individual equity, rights, and self-esteem and robbing society of unique contributions and valuable interactions.
We are all on an ability spectrum and most of us aren’t celebrities or Paralympians. I’m an everyday daughter, wife, friend, mother and recent grandmother who is living the second more challenging stage of a charmed life. I want to share my story to help everybody understand what living with a disability is like on an everyday basis to help educate, advocate, to create a more equitable life for the individual and a more accepting, inclusive society.
I'm glad you're with me on this journey towards equity and inclusion.
Sharing my full life with a changed acceptance and perspective thanks to adult-onset Limb Girdle Muscular Dystrophy.
I acknowledge Traditional Owners of Country, including Elders past and present throughout this unceded Australian land. I recognise, respect and commit to learning from the culture and continued connection of the Kulin Nations’ Wadawurrung people to the land, waters, spirit and communities of the Bellarine Peninsula on which I work and live. I share my stories in recognition of the vast Aboriginal legacy of storytelling.
Recently on the blog
Blog posts and accessibility reviews.
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.
In some way’s it's never been easier to have a disability than in 2023. In most ways of course, there is never a good time to have a disability, but when technology and equipment are made available for the use of people with disability, we have equitable choices to help us live life the way we want.
We can sleep on beds that make sure we are refreshed as much as possible for the day ahead, and we can comfortably socialise and enjoy …
The principles of an inter-abled friendship are similar to any great friendship, they can take a bit more work depending on your disability journey. Yet there can be differences, subtle and more obvious. Brought on by cultural ableist attitudes and general ignorance of what disability means - especially as there are so many disabilities.
Before I was diagnosed with a progressive neuromuscular disease my homes had never been inclusively designed. I never gave access a second thought., until I received occupational therapist (OT) advice not long after my diagnosis of Limb Girdle Muscular Dystrophy.
I've learnt that comfortable and beautiful accessible design in a home is just as important to me and many other disabled people as it is to you.
Good, honest friendship should never involve a power imbalance, where one side isn’t feeling joy from the relationship. This might happen in a relationship in which each experiences life quite differently, such as through the lens of disability.
In both pre and post-disability days, I have been surrounded by many wonderful people. The following five tips for being a stellar friend to your disabled someone come from my reflections on all these relationships.
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.