Kia ora tatou,
Hello to all of us,
Deafblind Association NZ’s tag line is Be Seen Be Heard Be Connected. It’s that last word that I have been thinking about during the week as I have noted the discussion unfolding on the Blind Discuss List, hosted by Blind Citizens NZ, around the feeling about people describing what they are wearing as part of their introduction in meetings. I have copied my response over so apologies to those of you who have seen this already. I think it sits within our deafblind culture, noting that many people on the other list made responses. Here, in part, is what I wrote.
Having lived with appalling body image until well after I lost my sight I think of positive visuals as putting positive feedback in my personal “bank”. Ergo I am moving out of the red and into the black in my account as I use people I trust as my mirror to give me honest feedback. I don’t want to know what everyone is wearing at every meeting however I do like to know what presenters are wearing because it helps me “focus” on them. It also reminds me that judgement is a natural part of human assessment. What do I see in the other person that I also like in me, or don’t like, as it may be. I’m surprised at how powerful this is because, after two months, I remember how some people described themselves at the Deafblind Association NZ Seminar:
- Hon Poto Williams, blouse with bright chrysanthemums all over it and pink fingernails
- Dion York, HQSC, bright red shirt
- John Mulka, black polo shirt, grey slacks, and black shoes
- Don McKenzie, cheese cutter hat.
My judgements then were feminine, bold, classy, and stylish confidence. Those are all the things I aspire to. I have never heard anyone in a meeting environment describe themselves as wearing a tatty shirt and jeans with holes in the knees from the garden and having a bad complexion.
In essence then it is not so much what people wear as a tool I use for relating to them. I look for the connection.
I’m also going to note here that Dion at another time wore a bright, flowered shirt and drew many positive comments. I like hearing what people wear because it also keeps me in 2023 as opposed to 1992 when I lost my sight. I like to keep connected to the world as it moves on. I’ll smile as I file this under Access to Information! 🙂
New Māori name for Health Quality & Safety Commission
From Dr Janice Wilson.
I am delighted to be sharing our new te reo Māori name, Te Tāhū Hauora, and updated logo with a new tohu (pattern) representing our role and responsibilities.
We have made this change to fit the current-day context of the reformed health system and align with other health organisations as they respond to changes in work focus and priorities.
Our new te reo name and tohu reflect how we see ourselves as an organisation, our commitment to being a Te Tiriti partnership organisation and the work we do in quality improvement and safety across the health sector. Our English name remains unchanged, but we will put the te reo name Te Tāhū Hauora first when describing ourselves from now on, which may take time to get used to.
The whakapapa of our new te reo name and tohu in the logo can be found at the following website link.
It is an honour for us to carry such a name and I’m delighted to see this work come to fruition. And, of course, it marks only the beginning of the next phase for this evolving organisation.
Unexpected information and connection: remarkable story of sight restoration that does not involve using drugs but brain stimulation
This has come to us from Elizabeth East, with her introduction.
Here is the story we shared this afternoon at the Kapiti ViP meeting, I am blind copying (excuse the pun) to as many people for whom I have an email address for whom it may be of interest to them personally or someone in their family or circle of close friends.
I just wish to remind you that in the 19 years that the Kapiti ViP group has been in existence, this is the first time that any research has restored someone’s sight. It is truly remarkable. The challenge is getting another research trial underway to particularly target the benefits of this therapy on patients with serious sight loss, is that there is no money in it for the drug companies as no drugs were used to effect the cure. It is the drug companies who are generally the biggest funders of medical research.
As Lynley said to me when I spoke to her last week, please feel free to share the information about the peer review of the technique with your eye professional next time you pay them a visit.
Article begins below.
Author Lynley Hood has had vision impairment for more than a decade. A study on back pain surprisingly restored her vision
The ‘miracle’ of the author who regained her sight (Stuff)
Dr Lynley Hood spent more than a decade almost blind.
But she can now see, following a “miraculous” recovery after she volunteered to take part in a study about back pain.
“I was reading in bed and my left eye went blurry. I put it down to tiredness, and put the light out,” she recalled of the moment she realised something was wrong.
The blurry patch was there the next morning, with specialists determining there had been some sort of haemorrhage after macular degeneration, a common eye disorder amongst people over 50, and glaucoma were ruled out. Over the coming weeks her right eye “would start to behave like an old television set”. “It had gone all staticky, and that was my supposed good eye,” said Hood, 79, of what unfolded in late 2009.
“I suddenly realised, ‘If my right eye goes like my left … what will I do, how will I cope? I’ve got to read all those books on my bedside table’. “My second thought was, ‘Can I even find the buttons on my phone to dial 111. This is it, I’m on the way out’.”
The award-winning Dunedin-based author, who wrote Minnie Dean: Her Life & Crimes, and City Possessed: The Christchurch Civic Crèche Case about the Peter Ellis case, was losing her sight.
“It was a mystery, and it continued to be mystery.” Hood recalled looking at Dunedin’s city lights from her home on the hill, and suddenly seeing them turn off and on, then change colour. But there were no reports of any incident in the media, it was just her eyes playing tricks on her. “It was most peculiar,” said Hood, who was later diagnosed with acute zonal occult outer retinopathy disorder, a rare condition.
She was no longer able to read books, and that curtailed the research needed for her writing career. “I couldn’t write any more books, because I had a reputation for meticulous research.” Instead, she devoted her time to advocating for visually impaired people, including making submissions and filing Official Information Act requests.
Another learning curve for Hood was learning to ask people for assistance. “It was a matter of saying to people, ‘I have terrible eyesight’.”
Earlier this year Hood volunteered for a University of Otago study into chronic back pain, which she had suffered since having an initially undiagnosed broken pelvis in late 2020. “I had the most horrendous pain, even turning over in bed was difficult.”
The research was “dead boring”, involving putting on a swimming cap with electrodes designed to stimulate the brain. “It never occurred to me that it would have any impact on my vision,” she said.
But the first time she noticed something had changed was after coming inside from gardening. Normally she would experience blackness for 10 minutes or more, and had taken to wearing sunglasses and a hat outside.
“I came inside, and could see perfectly well. I thought, ‘Something has happened’.”
Earlier this year she went for brunch with a friend, who asked how she could now read the menu. “I read it without thinking,” Hood said.
Up until then she was only able to read on her iPad if the font size was greatly increased. “My sight was improving, and now I needed to tell people, or otherwise they will think I’m a fraud for all these years.”
Her retinal specialist, Dr Harry Bradshaw, wrote in July: “I had the pleasure of catching up with Lynley, who may in fact be a miracle. With the variety of things wrong with her eyes I wasn’t really expecting her vision to ever get better, but somehow against all odds it has.
Hood said she too was surprised. She took no medication, no dietary supplements, no herbal remedies and “did not pray”.
“Throughout my entire 12 years of impaired vision I ate the same healthy, balanced diet I’d always eaten. To annoy the anti-vaxxers, I decided to attribute my recovery to the Covid vaccine.”
She recalled the brain stimulation she received for the lower back pain research.
But, interestingly, she was in the placebo group – which was given a “burst at the beginning and at the end”.
Researchers believed her improved sight was not caused by the current stimulating her brain, but her eyes. She has since found that brain stimulation for the likes of vision impairment is a growing area of research internationally.
Hood said regaining her sight, and the recent decision by the Supreme Court to quash the convictions against Peter Ellis meant she was now able to work on a follow-up to her book City Possessed.
An interesting research article on tinnitus
This snippet comes from Board Member Don McKenzie.
Wearable tinnitus device by neosensory reduces tinnitus severity (4.3% of all clicks.)
Neosensory, a technology company designing solutions for hearing impairments, has published new results in their recent scientific study of Duo, their therapeutic intervention for tinnitus (ringing in the ears). The group of participants who used Neosensory’s Duo solution daily for eight weeks reported clinically significant reduction in their tinnitus severity.
The paper has just been published in the International Tinnitus Journal. A link to the article “Bimodal stimulation for the reduction of tinnitus using vibration on the skin” follows.
Wearable tinnitus device by Neosensory reduces tinnitus (The Hearing Review)
Ministry of Social Development (MSD) Newsletter March 2023
Kotahitanga March 2023 (Mailchimp)
2023 Round Table Conference – Registrations are open
Less than 6 short weeks until the 2023 Round Table Annual Conference.
Register for the Round table on information access for people with print disabilities Inc conference (conference website)
#roundtable2023. Please spread the word.
Around the conference theme “Universal Information Access: Pathways to an Equitable Future”, presenters will focus on the themes of advocacy, innovation and practice and provide opportunities for people with print disabilities, accessible format producers, libraries, publishers, education institutions, government bodies, technology developers and other key stakeholders to come together to collaborate, share knowledge and learn together.
The extensive high quality conference program includes renowned presenters from the United Kingdom, USA, Denmark, New Zealand and all corners of Australia. The conference will provide you with updates on accessible and inclusive practices and projects, braille education, innovative audio and artificial intelligence applications, and much much more.
The full program is available on our website by following this link.
Round table on information access for people with print disabilities Inc conference (conference website)
ABA General Meeting – Saturday 6 May 2023.
Conference Proper – Sunday 7 May to Tuesday 9 May 2023.
Round Table AGM – Sunday, 7 May 2024 at 4:45pm AEST.
Special thanks and acknowledgement to our 2023 Platinum Conference Sponsors: Blind Low Vision NZ, Christian Services for the Blind and Vision Impaired; EverAbility Group; NextSense and Vision Australia.
And our Silver Sponsor: OZeWAI Ltd.
Conference Accommodation Rates
A gentle reminder that bookings must be made direct with the hotel prior to Wednesday, 5 April 2023 in order to access the special accommodation rate. Accommodation may be available after this date however is subject to availability.
Available 9am-5pm Monday-Friday.
Rydges Sydney Central Reservations Team.
Phone: (02) 9289 0000 or from overseas +61 2 9289 0000.
If booking via email or phone please quote code “Round Table” or ID “248534” and mention that you are part of the Round Table on Information Access group to secure the special conference accommodation rates.
Please notify the staff at the hotel of any special requirements at the time of booking.
Round Table Administration Officer
Round Table Conference Planner
Round Table on Information Access for People with Print Disabilities Inc.
Phone: (03) 9010 6251 (for overseas calls: +61 3 9010 6251)
Web address: www.printdisability.org
From Blind Sport New Zealand: Wellington fifa unity pitch – Wellington
Wellington! There is an exciting opportunity that we have been working on alongside the FIFA Womens World Cup 2023 – Austrailia & New Zealand.
More information about the FIFA Womens World Cup (Facebook)
The unity pitch is being moved around all the host cities in both NZ and Australia and is a great opportunity to try Blind and Partially Sighted Football in New Zealand alongside the tournament.
Below is a picture of what the pitch looks like.
When: Tuesday 11th April..
Where: Wellington Harbourside, next to TSB arena under the sails – 21 Cable Street, Te Aro, Wellington 6011.
What: Opportunity to play and try blind and partially sighted football. Learn basic skills, and have a go at fun casual games. Walking football and ambulant football will also be there, with our friends from Capital Football, Halberg and dsport, and is going to be a fantastically fun session.
Cost: There is no cost for this event.
Clothing: On the day, make sure to wear something you are comfortable in. Trainers or shoes you can kick a football with (sandals and jandals might make kicking difficult).
Come join the FIFA festival atmosphere alongside other activations happening all day. Hope to see you there!
Shifting the Power Coalition (StPC) Regional Hub job advertisements
The Shifting the Power Coalition (StPC) is a Pacific Island feminist coalition working across 7 Pacific Island Forum countries with 12 women-led organisations and the Pacific Disability Forum. Its aim is to advance diverse Pacific women’s leadership on climate change and humanitarian action.
The Regional Hub are currently recruiting for the following two positions, with links to the job information.
- Regional Representative/Manager: https://actionaid.org.au/jobs/regional-representative.
- Finance and Logistics Officer: https://actionaid.org.au/jobs/finance-officer.
Applications for these positions close Tuesday 11 April.
Media release March 30: Te Kāhui Tika Tangata Human Rights Commission
Human rights fundamental in disaster response
Read press release “Human rights fundamental in disaster response” below, or by clicking on this link
A critical checklist to ensure human rights are prioritised during relief and recovery efforts has been released today by Te Kāhui Tika Tangata Human Rights Commission.
It follows the devastation of Cyclone Gabrielle and the January floods in Auckland, and builds on the Commission’s previous work in crisis situations.
“We know from experience, including from the Canterbury earthquakes, that ensuring a human rights-based approach to disaster-response and emergencies is critical to protecting the most vulnerable in our communities,” says Te Amokapua Chief Commissioner Paul Hunt. The checklist aims to help busy local and national officials, and others, apply human rights and te Tiriti o Waitangi in their vital relief and recovery efforts.
The Commission’s Rongomau Taketake, Claire Charters, says the checklist also builds on the swift and effective response of iwi, hapū, marae and Māori organisations in numerous emergency situations, including the Canterbury earthquakes, Covid-19 response and Cyclone Gabrielle.
“Their responses have been a powerful expression of tino rangatiratanga, self-determination and manaakitanga. The Government has te Tiriti o Waitangi responsibilities to back that up by ensuring Tangata Whenua participation in decision-making and equitable resourcing for Māori communities. These are outlined in the checklist.”
Disaster response efforts must be guided by the principles of non-discrimination, participation and inclusion, accountability and transparency, respect for dignity and privacy, protection of vulnerable groups, and access to justice.
“Human rights and te Tiriti can help all of us support and deliver for everyone affected by a disaster,” says Charters.
Te Kāhui Tika Tangata Human Rights Commission has an accountability function in relation to the government’s human rights record, which includes responses to disasters.
The human rights checklist is available as a 9 page word document and as a 12 page pdf at the following links.
- Making human rights real in a disaster (DOCX 404 KB)
- Making human rights real in a disaster (PDF 2.4 MB)
As usual, event reminders and TellMe phone numbers follow.
Ngā mihi mahana,
Amanda and Sarah
Auckland , 25 April Audio description of the ANZAC Dawn Service for blind, Deafblind and low vision attendees.
Booking is essential, by 4pm on Monday 17 April 2023. Details provided in 17 March update.
Other audio described events in Auckland
Also listed in the 17 March update – Auckland Art Gallery Exhibition Light from Tate: 1700s to Now 1 April; The Lighthouse Keeper’s Lunch by Ronda and David Armitage, various dates and the Musical “Hamilton” 10 June.
Accessible exhibition – Who can think, what can think
This Auckland Arts Festival Event runs from 18 February to 7 May at TeTuhi, 13 Reeves Road, Pakuranga, Auckland. Details were provided in 10 March update.
More information about “Who can think, what can think” exhibition (Auckland Arts Festival)
Active until April 14, Royal Dutch Visio online survey for young people (aged 18 to 30) with visual impairments (blind and low vision) to determine their wishes and concerns related to the future. Details provided in 17 March update.
Round table on information access for people with print disabilities in person conference
Sydney, Sunday, 7 May – Tuesday, 9 May 2023.
Ongoing – Entertainment with Able
Able is a not-for-profit organisation working towards a more inclusive Aotearoa, believing everyone should be able to access news, entertainment and culture. Funded by NZ On Air, they’re Aotearoa’s leading provider of media access services, including captioning services, subtitling and audio description.
Listings to 8 April are available at the following browser links.
A link to Able website to subscribe to the weekly newsletter with listings and picks of the week follows.
Deafblind Association New Zealand access to TellMe
See TellMe numbers for your area
End of report and this week’s update.
Taringa Turi Kāpō Rōpū
Deafblind Association New Zealand