#care dynamics

cant transfer yourself to wheelchair? now u have to schedule carers every time u might want to move from chair to bed or toilet, have to staff these shifts, sacrifice your alone time/comfort/independence, teach them how to safely transfer u, remind them every time, purchase and maintain expensive equipment etc.

can't pee or poo in the typical way? have to do lots of steps for catheter use or bowel program or ostomy care. have to take special meds. have to travel with medical equipment, wipes, etc in all your bags now. have to buy and store it all too. have to deal with all the ableism from people about this too

there's a huuuge gap where i live for queer-safe workers, the vast majority of whom do care work casually and don't provide personal care.

my care agency is a big queer org, involved in lots of different things, and my care coordinator and i have been trying to hire people to support me with personal care tasks for the better part of two years.

there just. isn't anyone around who can be counted on to be safe around trans bodies and willing to perform more intensive care work

apparently my case got elevated all the way up to the ceo, and my care coordinator was explaining to him how we'd contacted every other queer care org in the city and been denied due to a lack of workers with appropriate skills like a dozen times. and the same in reverse for mainstream orgs, skilled workers but dangerous lack of queer awareness.

- bins stay overflowing

- sink stays full of dirty dishes

- no shower

- no prepared meals

- waterbottle not cleaned

- no groceries & no meal preparation

- no laundry

- house stays dirty + worsening my allergies

- cats dont get fresh litter

- bedsheets dont get changed

- i dont get help with transfers, which means im mainly confined to bed the whole day, having to limit the amount need the bathroom and any other activities that are done outside bed

When I dont have care, these and many more basic tasks just don't get done. My quality of life gets worse, and my ability to cope is greatly lessened.

It is not my carers fault she is sick, and I am very glad she has cancelled, as I am very vulnerable to illnesses.

However, like many disabled people, my care roster is drastically understaffed. Currently I have care 3 times a week, for a total of 10 hours.

I am meant to have 30+ hours, and to have carers here twice a day minimum.

The care agency cancelling her shift, without providing a backup worker, or even asking if I need a backup worker (some people don't!) is wrong.

I need my care workers for basic survival tasks such as making sure I'm fed, clean, able to move around my house. The agency knows this, and yet they never put two and two together that a carer being sick or unavailable is a risk to my health and wellbeing.

most egregious example was an ex-carer who texted the morning after he got back from his trip to bali. pretty clear he was hungover and trying to get me to cancel (i pay for shifts if i cancel, if they cancel they dont get paid)

like its not just about taking me out into community, its like. keeping my house clean and hygienic, and making sure i have food to eat.

if the adhd worker forgets half their tasks, i could be stuck without food or clean clothes or with a house full of trash. if the worker with a back injury cant lift more than a kg or two, they can't carry my folding wheelchair into the car, or help lift me out if bed, or bring in the groceries even, without risking injury that threatens their own ability to work.