Magnolia Speaks

Jay is still alive today. Alone in the house and crying. We are all trying to comfort them online. But alone.

Magnolia* is Jay’s overseas partner. They have gone through hell and back watching this from far away, working on documents to send to doctors about what has happened and what is needed, talking to the staff about how to manage the food and caring and what plurality means and reminding people about pronouns and trying to keep Jay safe.

Magnolia offered to write something we could share and yesterday their words were hopeful. Then last night we were forced to abandon Jay in their home once again and the bitterness and fear is horrible. Here’s what they want to share:

Magnolia Speaks: 15/4/2020

I’ve been writing it over and over again in my head, trying to find a way to tell you what this is like. Trying to find a way to say this is hell but those words are so overused I don’t think you’ll understand.

The last post I wrote was hopeful, but it’s hard right now to find the hope. I didn’t know what we had could unravel so quickly, but here we are. Once again I am watching, an ocean away, while my love is left alone, no help, pain mounting and sickness spiraling out of control. We all keep going onto the discord channel, family giving comfort, workers giving their free unpaid time to gently ask them, can you drink, did you take your meds, are you okay?

It’s a stupid question ‘are you okay?’ but we keep asking it. If okay means safe and stable, they’re not okay. But every time they answer there’s the one little glimmer of hope: not dead yet. Not dead yet. Still here. Still here.
“I’ll find a way to stay alive,” they promised us. I’ve watched them stay alive against all odds for a long time, and I believe in them more than I believe in most anyone. But they can’t go on forever with nothing. Even Jay acknowledges that.

Despite despair, despite the mounting challenges, Jay’s family is still here and we’re not going anywhere. This team is still here, and they’re all fighting for the same thing — to hear Jay’s voice and give them power in a world that wants to take everything from them. When hope is too weak to hold us up, we will move forward with the power of anger, the pure fire of our determination.

Please, if you’re reading this, please don’t give up. Keep fighting with us. Let’s make a fuss too big for the broken governmental systems to ignore, too big for the hospitals to wash away with a PR campaign, too loud to be drowned out by bureaucracy and polite dismissals.

Jay will keep fighting to stay alive,
and us?
We’re fighting to make something
worth staying alive for.

Magnolia
a digital artwork showing a white dog sleeping at the feet of a person in a wheelchair. The person is brightly rainbow coloured with punk mohawk hair and glasses. They are painting a landscape artwork on an easel.
Original artwork by Jay. Image description a digital artwork showing a white dog sleeping at the feet of a person in a wheelchair. The person is brightly rainbow coloured with punk mohawk hair and glasses. They are painting a landscape artwork on an easel.

How to Stand with Jay

If you’re still reading, this is the one they wrote yesterday, when we had a plan and things looked hopeful again. We ride the waves of hope and despair, nothing stays static for long for Jay.

Magnolia Speaks: 14/4/2020

This last week, almost every time I woke up it was to my phone ringing. Check your messages. Please come help. What do I do, I don’t know what to do, what do I do? I can’t take this any more.

I’m not a professional. I’m just a disabled parent scrabbling to prevent yet another bout of homelessness. I have no medical training or background in care giving. And yet, somehow, I am one of the precious pins that is holding the fragile structure of Jay’s survival together.

I’ve been watching the system fail Jay for a long time, cursing the ocean between us and all the people who couldn’t find an ounce of compassion. Someone so funny, so persistently kind and gentle and patient, someone full to the brim with passion and fascination and ideas, and these agencies look and see…nothing. They don’t care enough to try to understand.
But we’re changing that.

There are two parallel stories happening here, and it’s hard to tell them both at once. Because one of the stories — one that needs told not just for Jay’s sake, but for the sake of thousands of people like them who are being neglected and left for dead — is a bleak one. It’s the story of people who are discarded by society for their differences, whose value is ignored and denied. That story is a cry for help, a warning, and a call to action.

But the other story, the one that is in my heart right now, is a story of hope. I fell in love with Jay a long time ago, and now I am finally watching other people see what I see. Not Jay the crisis or Jay the case, Jay the person. Jay the artist, Jay the dog trainer, Jay the inventor and explorer, in curiosity and silliness and devotion. Jay who remembers a silly typo from three years ago, who rescues a starving little cat from under their porch, who gets a dream and digs in and fights the world until they get it.

This is why I’m honored to wake up at 3 am and struggle through ten channels of chat logs to try and avert a crisis. Why every time I get a call I thank the people who called me to come. Maybe I’m not the best person for this job, and I know this is an uphill fight, but Jay is worth every second. And maybe, between us, we can make an uncaring world sit up and pay attention.

We can help them see how lucky we are
to have someone like Jay in the world.

Magnolia

Jay’s Own Words

It was going well. Then it went downhill. Then it all caught on fire again. I’m so tired and heartbroken. They are at huge risk again. I am at huge risk. My team is at huge risk. The NDIS changed the plan again and now we are not getting paid for our time from this point. They’ve expressly forbidden my team from returning to the house because Jay may have COVID, which means my team are not covered by any kind of insurance if they disobey. They have been forced to stand down. We tried to get Jay into hospital before the last worker finished the last shift, but the ambulance was full of latex and Jay started reacting. It’s just so impossible to keep things on track.

I’ve showered. My mouth has stopped swelling – that’s rather nice – turns out it was an allergic reaction after all. I’m kind of numb, which is think is good at the moment. Safer for me. Apparently I’m being accused of kidnapping Jay. And of endangering their life by trying to get them into hospital. And of endangering their life by trying to get them out of hospital. And of endangering their life by trying to support them at home. And we asked for COVID testing we were told we were stupid. And now we’re told we’re wrong for not taking them to hospital to get it. It’s day 9 post exposure and their only symptom of possible COVID is a sore throat. The blood in their catheter scares me a whole lot more. I have to sleep, I just have to. I have to sleep and hope.

I’m tired of talking for Jay. They are eloquent and amazing. They don’t need me to talk for them, they need the communication device that’s going to take a month to get here, and for people to start treating them with respect.

They wrote a blog post about this situation on their blog and I have permission to share it. Go and see their own words.

Different not less by Jay

How to Stand with Jay

Jay’s Breaking News!

We have 2 new people on board to help with my workload and both are on the ground in NSW and experienced with complex disabilities!

The changes to Jay’s NDIS plan that locked me and my staff out of being able to access it have not only been fixed, they’ve been made retroactive. That means the $10,000 or so I was going to owe in wages this weekend I can now invoice to the NDIS plan to cover. WHOOOOO

We have finally got high level medical support for Jay. Today we were called because they and one of the staff were exposed to a confirmed case of COVID-19 while in the local public hospital ED fighting hopelessly for help. That doctor tried to arrange for Jay to visit the same hospital for testing, given some of their symptoms could be COVID-19. When we explained the ambulances we’ve called refused to take them given they may have a neck or back fracture, they tried to get someone into the house. We all found it impossible to arrange for a swab to be done in the home because currently I’m more like to be able to arrange for a helicopter than I am for masks, gowns, and latex free gloves.

So he went off to speak to someone higher up and between them they saw what so many this past few weeks have failed to see: the bigger picture. COVID-19 is scary and potentially lethal for Jay and yet at present it is not even the most urgent medical need. We need proper holistic medical assessment, diagnosis, and treatment, and it’s not possible to get the tests we need such as scans done under sedation, in a home environment. Nor it is okay to focus on COVID-19 while they are at risk of death or paralysis if there’s a neck fracture, or death by drowning due to feeding in a prone position with a known severe swallowing issue.

Bizarrely enough, the COVID-19 exposure is the best thing that’s happened for Jay’s access to care. What the hell is wrong with our system that this is the case!?

We have a plan of attack, which we will swing into action tomorrow. For now, I’m going back to tackle all the admin that will make paying staff possible, and dealing with the remaining cash flow crisis – I owe thousands in wages. Tomorrow will be admission to hospital and me chasing up every loan option I have available.

We still need donations towards all the incidentals not covered by NDIS, but far less urgently than before. Mostly what I need right now is low or interest free loans so that I can resource staff to pay critical costs in their own lives while we are waiting on money to come in from the NDIS.

Gawds it’s SO GOOD to have a good update to pass on!

How to Stand with Jay

Brains Trust – give me some referrals

It’s been brought to my attention that I am flailing about online in a pretty distressed and intense matter and generally freaking out a lot of folks. I’m going to totally own this one! I’m in an unprecedented (for me, I suspect it actually happens pretty often) mess, and I hadn’t got around to mentioning it yet but surprise! I’m autistic. So I’m currently freaking out most of the non autistic people and most of the autistic folks around me are getting it. I can’t do all this shit and keep all these people going and try to keep you, the general public, feeling calm and soothed and comforted and safe too. I kinda need to, because half of New South Wales currently thinks I’m having the most public psychosis ever lol (funny that when I do have actual psychoses, I am public about them!), all the bastards who are blocking what Jay needs are flinging some mud, and I’m generally careening around doing my best to juggle 1,400 things while on fire. So my capacity to hide that I’m on fire is a bit shall we say, reduced.

Sorry about that – deal with it.

Feedback about how to handle this more effectively welcomed. 🙂 Feedback that amounts to “have you tried being less autistic?” not so much.

Moving on!

Help me with:

I need a GP or physician with experience with complex disability and spasticity. Anywhere in Australia. Frankly I’ll take anywhere in the world. We need specialist competent guidance please and we can link you in with tech. If Jay doesn’t qualify for telehealth with you, we will cover the cost through business/donations. Please get in touch with me asap with your qualifications and availability.

I need someone who can edit my youtube channel, I am using videos to communicate with my team and having trouble loading longer ones. The obvious option is to stop waffling so much but that’s never been my strong suite. Paid, obviously.

I need the NDIS medical clearance for accessing a hospital guidelines. What exactly do my staff need to do to be cleared?

I need a way to get Jay tested for Covid without moving them from their bed. Thoughts?

I have stressed, vulnerable people in shutdown because people keep phoning them. Can someone help me arrange new phones and sim cards with new numbers so they can turn the old ones to silent and address calls as they can. They can’t do this now because this family is trying to stay connected to each other. We need to split up the lines of personal safe communication from the lines of more public and stressful communication. I really like amaysim – can they help? They are both used to iphones. Will pay, obviously, from donations!

I need advocates. Autism, disability, mental health, queer, whatever. Throw them at me. I can’t do this alone, but we can do this together.

Get in touch with me.

How to Stand with Jay

Jay is trapped in bed

We need urgent help

Image courtesy of Image by Николай Егошин from Pixabay
Image description: large house fiercely on fire in the night, guttered with the windows burned through

Context:

Updated list:

More details:

In Home Safety Issues:

  1. Raised by RN
  2. Raised by Support Worker
  3. Raised by Jay
  4. Verified by Occupational Therapist – pending

Current Status:

I need 2 staff 24/7 with Jay and there is nowhere in the present home for them to sleep, and no separate spaces for them to have downtime. Due to severe sensory issues they also need to be able eat away from Jay, as most food smells are highly distressing and many cause meltdown/shutdowns.

An occupational therapist visited yesterday morning for staff training with safe use of hoist. Could not proceed,  Jay was in too much pain and then went into meltdown due to overwhelm. OT has shut down use of hoist, shower chair, and commode because of the severe pain Jay is experiencing. Given we don’t know the cause of the pain, we are risking potential severe injury to them if we mobilize them with the hoist.

Jay spent the weekend in the local public hospital ED. We called an ambulance for them when their pain escalated into crisis with symptoms mimicing a heart attack. Jay has no ambulance cover – we have promised we will cover it with our donations fund. (THANKYOU ALL!) Edit – wow it turns out NSW has different rules around ambulances to SA and there will be no cost. Awesome! We really need to do something about that here where I live.

Jay was unable to get proper care or assessment in the ED despite everything their entire tried over the whole stay. And I mean EVERYTHING we tried – but that’s a story for another time.

His GP was booked for an urgent telehealth appt over 2 weeks ago but has never called. This is the GP who has not followed up on a highly vulnerable trans client who’s hormone shot is over a month overdue. Apparently this is pretty common for them – can’t even blame COVID19.

Trapped in bed

Trapped in bed at present without capacity to get into their wheelchair. Jay now needs 2 staff available 24/7 to enact pressure sore protocols (need to roll them every 4 hours and apply cream to skin) – we think – we can’t yet get anyone into the house to tell us! Jay’s skin has already thinned badly due to a long time trapped in bed while abandoned in their home – also a story for another time, but I can tell you it’s been a really bad year for Jay.

We urgently need a GP for a wide range of assessments and referrals related to chronic and severe neglect.

We also have immediate medical questions we are not qualified to answer and we need a GP or someone trained to guide us!

We need from a GP: Immediate:

  • We need covid tests for Jay and all staff. The ED Jay spent the weekend in was a hotspot for covid but refused to refer or administer tests or medically assess the support workers. This means we can’t take them into places where high risk residents are in lockdown. We need clearance to open housing options or to know housing options closed because we are now infected and risk killing the rest of the residents. 
  • We need medical assessment and advice of the risks of using the hoist to mobilize into the chair, vs feeding someone with severe dysphagia while lying down in bed. 
  • We need to assess, diagnose and treat the pain crisis or provide referrals to those who can.

We have managed to arrange:

  • 9 April disability specific physiotherapist for telehealth assessment.
  • 14th April we have booked trans friendly GP: should be able to provide script for hormone, we can then hire a nurse to administer. 

Jay reports a bad sore throat today and has been feeling constantly very hot then very cold for the last two days despite no fever on the thermometer. This lack of temperature regulation is very concerning given other health conditions. Jay reports severe neck and back pain, radiating down both arms, which is especially concerning because Jay is usually unable to feel pain even if it’s a really bad injury. We are all afraid something very bad is happening medically. We desperately need a disability GP with experience in spasticity – we are making calls and waiting to hear back. If you know anyone – please get in touch with us urgently, my phone is on 24/7.

How to Stand with Jay

Help me save Jay

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

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!