Introduction by Susan Hughes of Disability Discrimination Commissioner, Alastair McEwin at the Launch of Dragon Claw’s innovative website held at NSW Parliament House on 21 March, 2017.
Special Guests Patron Dr. Mukesh Haikerwal OA, Dr. Rachel David CEO of the Australian Private Health Association and Australian Media Personality and Broadcaster Angela Catterns.
Good evening everyone,
Twelve years ago I was diagnosed with Rheumatoid Arthritis which was induced by workplace stress. I walked out of my doctor’s surgery terrified and confused. I did what most people would do and went home to Google the definition of RA but found very little help and support. I felt lonely and stressed. My pain continued to flare up for years, to the point where I was crawling along the floor waiting for two hip replacements. To add to that, Workers Comp insurance refused to accept liability for this workplace triggered disease. I was left without a career or income, carer and no community support. Thank God for my Rheumatologist and orthopaedic surgeon, biologic medication and the support of my family.
One thing that never occurred to me until I experienced RA was the general lack of awareness around invisible disabilities. For example the nasty looks from people when I needed to use public disability toilets. When I have to stand on Wynyard Station platform where there is only a couple of seats that are always taken, I’m left aching like hell and not feeling visibly disabled enough to ask seated passengers to stand up for me. I have had members of public yelling at me for using a disability car park, The most frustrating thing is when my family and friends say to me when I’m referring to my disease ‘but Susan you look so well and you do so much’. I know they mean well but I feel invalidated like I’m some kind of fake. Sometimes I think I should have a disability tattoo inked on my forehead just to make people aware of disabling auto immune diseases.
Then I met Michael Gill and Denis Tebbutt and here I am today, wonderfully supported by our Dragon Claw community with a chance to raise the Disability Discrimination agenda. Ironically several careers ago, I co-founded the Australian Network on Disability for employers to help other people, not me! I knew about Psychiatric and Intellectual Disabilities, but painful hidden diseases were not under my disability intolerance radar. Long live Dragon Claw – our exciting innovative initiative to bring sufferers of pain together in the one on-line community.
The solution? Each one of us hopefully today will leave here as ambassadors to help us spread the word that there needs to be more tolerance and understanding around individuals who suffer from pain associated with auto-immune diseases.
In Dragon Claw’s work with Alastair McEwin, Australia’s Disability Discrimination Commissioner, passionate conversations between him and ourselves have focused on how we can, together, build an inclusive national community in which people with invisible disabilities are respected everywhere every day. A large number of people have invisible disabilities and experience discrimination by others oblivious to our pain we are living with. Although Alastair was keen to be with us tonight, his schedule was already committed, so offered to address our gathering by video.