As a woman living with disability, I have realised that change for all can be achieved by using our perspectives informed from experiences, as powerful. The personal is political.
I am a community builder, a change-agent, driven to be a reasoned voice to advocate for change to benefit communities towards healthier, happier and more inclusive societies.
Growing up on the east of coast of Tasmania in the 1970s on a rural property in a loving family environment my parents were resilient, hardworking and most passionate about ensuring their daughters were well equipped to lead lives which made us happy.
My parents were extraordinary role models and always provided me with a safe haven of love, support and encouragement. My two sisters and I were diagnosed with a muscle wasting condition when I was about 11 years of age. At the time, little was known about Limb Girdle Muscular Dystrophy.
In those days, ‘disability’ was either hidden or resulted in institutionalisation such as Willow Court (a notorious institution in Tasmania’s south closed in 2001) as the only support option.
The vernacular regarding disability was deeply embedded in an ideology of ‘tragedy’, ‘medicalised (fault of the individual), ‘charitable’, ‘inherently negative’ and something to be ‘pitied’. I didn't want to be one of ‘those’ people (stigma).
I celebrate my life as one full of experiences filled with determination to reach my desired goals. Perhaps I am too, trying to live a ‘normal’ life against time – who knew what would happen living with muscular dystrophy in the future?
My goals/dreams included the desire to work on remote rural cattle stations in Far North Queensland (I spent three years working for various remote station managers as governess teaching children via school of the air).
Losing independence is frightening and confronting. It's like aging rapidly and you have no or little control of the outcome.
In 2000 whilst situated in the remote town of Mullewa, inland from Geraldton, Western Australia, I succumbed to the need for a powered wheelchair. Despite my previous stubbornness to not be a wheelchair user, I was encouraged to view things from a much more creative perspective. For example, my mother (and significant role model) suggested I view a powered wheelchair as my ‘professional tool’ to enable me to achieve my goals of working with remote rural communities.
The powered wheelchair opened up a world of freedom in the shape of independent mobility, being safe (falling over and breaking bones became less) and enabled me to work with the very communities I loved in outback WA. The transition to being a wheelchair user was quite easy! It opened up more possibilities for me.
Becoming dependent on others to assist me with personal care needs and everyday living feels undignified and requires high level skills in effective communication and negotiation. Because of the dedication and care from support workers, by default, they have also become agents of change in my life, playing a critical part in assisting me to be the best I can be. Without the support, I wouldn't be able to function.
When I returned to Tasmania to live back home in 2006, it became apparent that all I had learnt in my regional development career was relevant and could be applied to the disability community.
My lightbulb moment occurred during an intimate breakfast in a small trendy café in Launceston’s Inveresk precinct in 2007. A first-time federal parliamentary secretary for Disability Services, Bill Shorten MP, was guest speaker addressing attendees about ‘people with a disability’. In frustration to the narrative, I noisily placed my fork down on the table I sat at and calmly explained to the room, that ideally, ‘people living with disability want to be more self-determining and responsible for their own futures’ arguing that we don't want others to take charge of our lives. It was in this moment I realised the powerful voice of the lived experience of disability. Our perspectives matter. Disability lives matter.
I realised that the personal social injustice experienced was in itself, disabling. Something had to change to benefit not only myself, but others living with disability, their families and significant others.
In response to the poor policy and legislation by state government to disability, I concentrated my energy to research and educate myself about disability theoretical frameworks. This resulted in a UTAS primary health research fellowship and later a postgraduate degree in disability studies. This education allowed me to establish the Tasmania Disability Lobby, a social media campaign advocating for major social reform such as the NDIS.
Advocating for the NDIS led me to working for the Agency responsible for implementing the Scheme and after 12 months, I then Co-Founded and became Director of Wardlaw & Brown Consulting – an independent business providing case management services for NDIS participants entering the scheme.
The NDIS has changed the power relationships between service providers, individuals living with disability and the funders, in such a positive way.
People living with disability and their families have so much more say about the support they require and finally, they have choices and control over those services.
Recently, I stepped down as Director of Wardlaw & Brown Consulting. I have a newfound desire and goal to re-enter formal research to continue informing the political landscape.
It's vital disability politics continues to improve, be better funded and meet the needs of people living with disability and I am passionate about helping to make changes for the better.
Through my research, education and strong advocacy, my main hope is to leave a lasting legacy to benefit all of us that live with disability in our community.
I'm passionate, I'm not afraid to use my voice and I'm absolutely determined to speak up for those who don't get heard.
Photography by Lara van Raay and Rebecca Thomson.