With Samantha Connor, Kelly Cox, Jax Jacki Brown, and Shakira Hussein in Melbourne for an MP briefing about the upcoming assisted suicide bill (which as it is written currently is incredibly vague, unsafe, & deeply dangerous to disabled people, especially those of us with degenerative or “life limiting” conditions – although we are consistently being left out of the conversation). I don’t know if they listened or seriously considered our words but I hope with all my congenitally deformed heart that they did. I am scared, for myself and for my crip family.
I am terminally ill. If I am unlucky I die tomorrow. If I am lucky, with support and treatment, I might have a few years left in me. But I have been rejected from the disability support pension five times in three years, including an appeal to the administrative appeals tribunal. They concluded that I am certainly severely disabled and dying, but not severely disabled and dying enough for Centrelink standards. Centrelink requires multiple specialist reports with very specific wording. They don’t accept GP reports except as secondary supportive documents. My specialist appointments are as much as $560 for 45 minutes, and the wait time can be as long as a year. Many of their offices are inaccessible. Many are far away. There are very few drs familiar with EDS in Australia.
My joints dislocate every day. When I sleep. When I turn my head to the side. When I raise my arms above my head. Parts of my spine, my wrists, my fingers, my shoulders, my ribs, one of my collarbones, my knees, and my subtalar ankle joints are dislocated as I write this. I am not currently prescribed any pain medication. I have my neurosurgeon’s blessing for medical marijuana, which is federally legal but not yet being legally dispensed in NSW.
I am suicidal. I struggle with suicidal ideation every day. When I get off this tram I will catch the replacement bus and wheel back to my friend’s place. I will not wheel into the road or into the path of the next tram. But it will be hard. It’s always hard.
It would take me two GP appointments and ten days to access assisted suicide.
We need assisted living first.