Australia is utterly failing the care of people with disabilities in the face of COVID-19. I have been working around the clock this last two weeks to try and save someone’s life. Right now we are a small team of family and support workers and we are all exhausted.
Who is Jay?
‘Jay’, the person who is likely to die within the next couple of weeks unless we can turn things around radically, is a fabulous, trans non-binary, autistic, non verbal wheelchair user with two wonderful partners who are also in severe crisis – one bedbound in an interstate hospital due to severe injuries that occurred while trying to help Jay mobilise without support, the other overseas and suffering chronic pain and crisis. Both are Jay’s supplementary decision makers and both have limited capacity to fulfill that key role without our support.
Catastrophic System Failure
If you know anything about being trans you know what kind of medical care Jay has been getting. If you know anything about being a wheelchair user you know what kind of access to services has been going on – they can’t even access most of their own home. If you know anything about severe allergies you know how easy we’re finding it to feed them and keep them clean and safe. If you know anything about severe mental illness related to trauma, you know just how this hell is impacting them. If you know anything about being non verbal you know just how well most people are understanding Jay’s needs, capacities, and limitations, and the absolute torture it is to be constantly so unheard, overruled, ignored, and humiliated.
Being part of this families life for a mere 2 weeks has been the biggest wake up call for me about the state of disability rights in Australia. We are FAILING, we are being FAILED.
What are we doing?
We are trying to keep Jay alive in impossible circumstances. The little team we have is full of the most incredible people I have ever had the privilege to spend time with, and we are all keeping each other going with so much passion and integrity it frankly makes me cry with relief.
But the problems are too big,
too entrenched, too systemic, and we are too few.
We need a bigger team backing us up.
I know we’re in all crisis with the damn virus. I know everyone is struggling in some way. But many hands make light work. If all you can do is share this post or send some love, I can’t tell you how much difference that will make. We can’t be alone in this anymore, please.
If I can’t save Jay’s life, I am damn well making sure they don’t die alone. They are clean, safe, cared for with respect, have access to their family, and can rest in the certain knowledge that I will be helping their partners pursue every single person and system who has so catastrophically failed them through every legal channel open to them.
It’s not just Jay at risk
Do you know how many disabled people are going to die because of COVID-19? How many are already being refused medical care on the basis they are too complex, too unlikely to recover, and that their lives are not worth living anyway? Did you hear about the Spanish residential home in that was discovered by the army with all the residents dead, abandoned by the staff? It’s started here in Australia. People with disabilities are being abandoned. I don’t know if we can save them all. I don’t even know if we can save Jay. But I can tell you now, those Spanish residents likely died alone in the kind of terror, agony, and despair that is unimaginable to the rest of us. If Jay dies they will not go that way. They will die loved. They will die clean. They will die with their beautiful assistance dog cuddled next to them. With a tender hand whenever it is needed. With a voice in their ear telling them we are here. We are watching. We see you. We bear witness. You will be remembered, always. Join me.
How to Stand with Jay
- Boost our signal! Share this post. Tell someone about Jay. Use the hashtag #standwithjay If you are media, contact me for more details of the story, or watch this space.
- Help resource us: we need help to do and get these things and people!
- Donate to us: all funds will go to Jay and the team, not me
- Join us: bring love, help, make suggestions, take on tasks and all your cat pictures please!
Being different in this world can be such a source of strength and sorrow. There’s probably never been a harder time for most of us than right now. Who do you know with a disability or diversity? Reach out. Check in. Even if we can’t save them all we can tally the dead. No one dies alone.
Never the Spanish Residential Home again.
Not here. Never again.
Help me make this happen!