Photo: 123RF
Julie Woods has navigated the world without sight since 1997 - but it is New Zealand's healthcare system that has most often left her in the dark.
"For so long now, we've been getting our appointment letters in print, which - as a blind person - just seems so ridiculous," she said.
"I received a letter from ACC in print and when I called them to say, 'This is not my preferred format - could you please email it to me?', they said, 'No, we can't do that'."
Woods said there seemed to be a lack of awareness from healthcare workers, when it came to dealing with people who were blind - such as when an ophthalmologist handed her printed pre-operative instructions before cataract surgery, or when she was asked to fill out a printed meal form at the hospital, only for the catering team to later place the meal in front of her without saying a word.
"It's the importance of saying who you are when you come into the room, [and] saying that you're leaving the room and when you come back," she said.
"There are so many people that come into that hospital setting who, all of a sudden, start touching you or talking to you. You don't know who they are and you don't know whether they're talking to you."
Julie Woods. Photo: julie woods
Woods also called for medication to be labelled in braille.
"When I go to the pharmacy and pick up my medication, it comes in a big bag," she said. "The way I can identify my medication is by the shape of the box or the size of the tube, or the feel of the tablet.
"I can't tell what they're for. I just recognise them by the shape - and that's not ideal.
"I had two tubes of ointment - one was for my vagina and one was for my face, and I couldn't tell which was which."
A wider problem within New Zealand's healthcare system
At Access Matters Aotearoa's webinar on Wednesday - part of their Kōrero for Change series - Donald Beasley Institute junior research fellow Umi Asaka said experiences like Woods' were part of a wider problem within New Zealand's healthcare system.
While Health Minister Simeon Brown announced that Cabinet had approved a suite of amendments to the Pae Ora (Healthy Futures) Act 2022 on Saturday, none of those were for people with disabilities.
The medical model of disability was rooted in disablism and ableism, Asaka said.
"It says that disabled people should have medical intervention to change our body and mind to become as close to non-disabled people's body and mind.
"There are lots of different treatments within healthcare system that are - of course - needed, but there are also other treatments that are about making our bodies and mind fit into this ableist society."
New Zealand's health system is even worse for Māori, who - at the end of May - had told the Waitangi Tribunal that the health system was failing them.
Dr Huhana Hickey, a claimant in the Waitangi Tribunal's inquiry into the disestablishment of Te Aka Whai Ora - the Māori Health Authority - had been working with Te Aka Whai Ora to ensure there was a voice for Māori with disabilities, before it was disestablished.
"Disabled people aren't faring well - but the most deprived demographic - and the last time Ministry of Health did this was in 2001, so it shows you they didn't want to show it again - was Māori disabled.
"Then halfway down on that graph, it was Māori non-disabled, second most deprived.
Dr Huhana Hickey. Photo: RNZ / Alexander Robertson
Health New Zealand disability strategy head Rachel Noble said New Zealand's health system was "ableist by nature".
"The individuals who work within Health New Zealand are, on the whole, very willing to create inclusive and accessible health services, but they're not sure how and there are many systems within the system that need to be addressed."
Noble said Health New Zealand needed to "change the narrative".
"That means reframing the way we think about disability in health to become inclusive and accessible for disabled people - to be responsive and relevant."
She said Health New Zealand had committed to promoting the disability model of care, developing a tool that would allow people with disabilities to communicate their accessibility needs for healthcare appointments, and engaging with the community to inform service improvements.
Noble added that there were also resources that Health New Zealand already had in place, which she had personally used, such as the "I am deaf" card.
"I showed it to the receptionist, and straight away her body language changed, and she adapted how she communicated with me. She also took that card and passed it on to the next person, who passed it on to the next person," she said.
"By the time I left that appointment, I didn't have the stress of having to justify or explain myself. I didn't have to teach people on the way.
"They were all really able to accommodate me, which meant I left feeling like a human being - and I think that's the feeling that we want to create for everyone."
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