"How to be an Effective Advocate for a Disabled Patient: #Disabled patients are rightfully terrified of being hospitalized. We are stripped of our agency & control in a hospital environment. Having an effective advocate can vastly improve the experience"
“When you are hospitalized - you give up your agency. You are put in the control of doctors & nurses who may have limited understanding of your condition. What & when you eat, when you take your medications (and what medications you’re given)…it’s all out of your control”
“Have a detailed care plan & advanced directive they can follow which CLEARLY states your wishes should you be incapacitated or unconscious & unable to make decisions for yourself. Make sure your advocate keeps copies of these documents in a safe place & brings them to the hospital”
"After writing a bestselling mystery novel, Kate Weinberg found herself in a plotless place with no neat, obvious ending: suffering the torturous, confusing ordeal of long Covid. Now she’s turned the experience into a funny, philosophical novel…"
“Students with mobility impairments or executive functioning issues find not having to navigate campus helpful, because they can save their energy for studying, not logistics.”
"Gordon Waddell, back pain, the subversion of the biopsychosocial model, and the UK government's development of a victim-blaming approach to disability" by Katie Johnstone (ME/CFS advocate)
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“According to the authors, most people who are disabled can return to work, & if a person fails to return to work it is, essentially, their own fault. This victim-blaming mentality continues to underpin UK government policy towards disabled people”
Book Challenge: 20 books that have had an impact on who you are. One book a day for 20 days. No explanations, no reviews, just book covers. Don't forget the alt text:)
Looking to support a fellow Autist whilst navigating your own ASD journey?
I invite you to follow my Autistic Diaries Blog!
I share insight on my own personal experiences as a Chronically ill Autistic person. My life, my diagnosis, and some information about Autism and my chronic illnesses (Coeliac and Graves', as well as POTS, and other conditions)
I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an #advocate? I need help.
If you are able and would like help me escape abuse and pay for all the necessary services, I have a crowdfund at: https://www.buymeacoffee.com/ halcionandon
People with Australian bank accounts can use https://www.beem.com.au and pay to @halcionandon. It is fee free and anonymous both ends (so Visa, Mastercard and the platform charge no fees for me unlike Buy Me a Coffee)
I’m also registered at https://www.Prezzee.com.au for e-gift cards which help keep govt out of my finances. Any digital gift card for use in Australia is very appreciated. There’s plenty out there if Prezzee is not your thing. Universal or Amazon cards are best.
People help is also more than welcome - I need a place to stay, an advocate, social worker etc too. There are barely any resources allocated to my catchment area so I’m pretty much on my own. Have been trying almost 2 years to get an advocate!
Albanese’s Escaping Violence package shows no signs of including the #disabled and people with #ChronicIllness so we’re still on our own. Yes the government forgot to ‘forgot’ to include us. Current DV and family violence services won’t help us. I’ve tried them all.
Ask questions if you’re interested or need clarification. I’ve posted a lot too.
Can people PLEASE help me contact #churches/ #priests/places of worship/ community groups & ask if they can help me find somewhere to live? If one can’t then they are affiliated with others that might and can ask people in their congregation. Put a plea on their message board irl or Facebook/ whatever online presence they have.
I am living with abuse /neglect and can’t do this anymore.