Provide and require disability training for all health providers
Require all those responsible for providing health services to have a basic knowledge of disabilities, accessibility, and disability rights, the Deaf community, and d/Deaf rights. And a knowledge of how to interact with and provide care that meets the basic requirements of disabled people and d/Deaf people.
Why the contribution is important
d/Deaf and Disabled people have a right to healthcare. We are aproximately a quater of the population. Yet publicly funded, publicly provided healthcare has an appalling lack of knowledge of how to even interact with us, let alone treat us. And publicly accredited, privately funded healthcare has the same problems.
Heaps of organisations and workplaces have to have someone trained in first aid. Yet a hospital ward can have no one trained in how to guide a blind person, or explain a procedure to someone with an intelectual disability, or check the contact details of a Deaf person's next of kin.
Some of my experiences as a functionally blind, multiply disabled, mentally ill, neurodivergent person:
A doctor in the emergency department nearly refusing to give me crutches because he couldn't figure out how I could use them. He certainly coudn't train me how to use them, I had to figure it out for myself, knowing that if I didn't figure it out instantly and look good doing it, he would send me home literally unable to walk. How can I have healthcare, when I am having to educate them about how blind people get around, and advocate for my right to care.
If for some reason I hadn't been able to use crutches (and it was a nightmare honestly), then I should never have been sent home unable to walk. Other options should have been explored, including a wheelchair, community assistance, etc etc etc.
Multiple occassions of public system mental health appointments and assessments starting with inappropriate questions and requests relating to my disabilities. "How does that white stick work, can I try it.", "Can you take those [protective and essential] dark goggles off so we can see your eyes and feel connected to you", "I only have printouts of this therapy workbook, so I can't provide you with therapy".
"No, we have no interaction with Blind Low Vision NZ, and no experience working with blind people, despite the fact they are literally one floor below us in this building".
Being left for hours in the waiting room of A and E with no way to get assistance to get to the toilet or find a staff member, because I had been placed in a manual hospital wheelchair, and couldn't use my white cane to get around. I had to explain my situation, and the fact I needed to pee, to one of my fellow patients, and get them to help me to get assistance. It could all have been solved by moving me close to the reception desk, and telling me which direction to call out in, or even just explaining the room layout to me, so I wouldn't literally roll into so many of my fellow patients. To be clear, this predicament happened multiple times as I was waiting many hours. I wasn't really feeling up to the critical thinking required to educate the changing shifts of staff as to how to provide basic assistance.
I have had multiple assumptions about how I live my life, and what aspects of my care are important to me, made by many proffessionals.
I have had my reproductive care minimised and ignored, because healthcare proffessionals cannot imagine a disabled person wanting being a parent as an option.
I been denied care because proffessionals assume that care is available from an NGO disability service, which it absolutely isn't.
I have been snapped at and jeered at by a flabotomist for jumping when she stuck me with a needle with no warning, because she clearly forgot I couldn't see what she was doing
I have been talked to like I was a child so many times I have lost count.
None of my disability support workers have any clue how to interact with a blind person. Many cannot understand why they can't just move stuff around without telling me. I have been told, by my disability support workers that pills are poison, that if they were in my possition they wouldn't be able to keep living, that it's just my attitude and I'm not trying, that maybe I should try yoga, etc etc etc etc.
I have never found a braille sign on the outside of the building of any health provider ever. Most don't even have it on their toilets. Almost one at reception or elsewhere knows to introduce themselves and say who they are, because I can't see they are wearing a uniform and name tag.
I have been walked into more doctor's office chairs, by someone trying to guide me to one, than I can count.
I am one disabled person. I have heard so many horror stories from so many of my fellow disabled people.
From people discharging themselves because they were left with no way to get around or call assistance in the hospital.
To having to call healthline, terrified, because the instructions they were given were not written down, and they have memory problems. Only to discover they were doing something easily preventable that they were told once not to, but forgot, that could have caused serious, dangerous harm.
To having to hide their neurodivergence or mental health condition from their GP, because they have had so many experiences of being denied care when they have disclosed it before.
Health providers have no clue how to interact with disabled people, and it shows. There should be a training requirement to ensure that those responsible for our care have at least a basic understanding of our rights as humans, and how to interact with us, and provide basic assistance.
by AceTimelord on March 11, 2023 at 05:49AM
Posted by HungryKiwi March 12, 2023 at 08:33
I have multiple chronic illnesses and was recently discharged from hospital and the treatment I got was appalling, so much so that I have sent a complaint.
I am a type one diabetic and was refused insulin but given sugar, no one understood why I was mad, I ended up in DKA because of negligence.
My fibromyalgia causes major brain fog and nurses got frustrated when I couldn’t remember things, despite currently dying of preventable DKA and explaining I remember about 30% of what happens.
I’m so sorry you had terrible experiences, it’s incredibly dehumanising when providers can’t/won’t give us proper care just because we are disabled.
I will continue to speak up about things like this, in the hopes that, for both our sakes it will only improve from here!
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Posted by marlowmews March 12, 2023 at 11:38
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Posted by AceTimelord March 18, 2023 at 08:20
I agree, continual advocacy is essential, and its all we can do, just keep on fighting and fighting, often, as you say, when feeling absolutely awful.
The level of knowledge both of us encounter is really quite terrifying. This isn't complicated stuff, I understand that not everyone in health care will have heard of my incredibly rare condition, although, as having a rare condition is actually super common, they should be better equipped to deal with encountering a rare condition where the patient is often the expert in their own needs and condition, because we have to be.
But this kind of thing should be the ABC's of healthcare: Wash your hands, completely blind people can't see what you are doing, type1 diabetics need insulin.
Honestly, half this stuff shouldn't have to be in medical school, it should be universal knowledge by the end of primary school. But the reality is of course that it is not.
@MarlowMews Yes, this. Exactly like that, perfectly summarised exactly what is needed.
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