Deaf and disabled leaders recognised in Royal Honours 👑
Plus: Lusi Faiva's theatrical masterpiece, crip perspectives on Counting Ourselves
Tēnā koutou e kare mā!
In this week’s delicious edition:
Deaf and disabled legends who were recognised in the King’s Birthday Honours 🙌
The origin story of disabled dance group, Nesian, who opens the Pacific Dance Festival tomorrow 🎉
Reflections from the authors of To Be Ourselves, a report on the experiences of trans and non-binary disabled people 🏳️⚧️
On Monday’s public holiday, a long list of community leaders were recognised in the King’s Birthday Honours, including folks and allies of the disabled community. Here are some of the Deaf and disabled leaders we spotted amongst the official list.
Allyson Hamblett, was awarded the KSM for services to disabled and trans folks. Allyson is an artist and advocate who has been involved with CCS Disability Action for more than 20 years. She established a transgender support group that ran for 10 years through the Auckland Pride Centre, and now, she’s a disability advisor at Māpura Studios.
Dr David McKee was cited as a Companion of the New Zealand Order of Merit for services to NZSL and the Deaf community. He’s a recognised expert in the language and a key figure in establishing NZSL programmes, including New Zealand’s first full time sign language interpreter training course.
Allison Franklin was cited as a Member of the New Zealand Order of Merit for services to disabled people. As a long-term advocate, she’s regularly spoken to schools and community groups and as a representative of the Cerebral Palsy Society.
Catriona Williams is now a Dame for services to spinal cord injury research and equestrian sport. She’s the founder and driving force behind the CatWalk Spinal Cord Injury Trust which strives towards groundbreaking research and raising awareness for spinal cord injuries.
We know that many disabled people across the motu also serve outside of disability kaupapa and there are non-disabled people who have dedicated their lives towards it.
Is there someone in your community that you want to see recognised with a shiny medal? You could nominate someone for the next investiture. It all contributes to the visibility of our people, culture and contributions! ⭐️
➕ The DSS Taskforce will be extended for a year until 30 June 2026, announced minister Louise Upston this morning. The Taskforce was established to lead the implementation of the recommendations from the 2024 Independent Review to manage increasing cost pressures faced by the DSS.
🦺 Earlier this week, the Government announced that WorkSafe would shift its priorities from enforcement to advice. RNZ reports advocates are concerned that this changed would lead to more harm to people living in residential facilities after four IHC residents choked to death while in care last year.
When you've got six deaths that occur, four of which occurred in a year, all due to negligence regarding vulnerable people, we need enforcement not advice.
🌄 Bailey Unahi tells the Otago Daily Times Queenstown Lakes District Council and Lake Wānaka Tourism is prioritising active travel and cars instead of consulting disabled people in their development plan for the lakefront. She says that disability groups in Wānaka had approached the community board for safer crossings but was disappointed that Bike Wānaka was given a priority.
We want to experience our backyard, but we are not really considered and it is isolating. Even accessing the lake is a common frustration for all of us. So you just don’t go… Consultation with people that have had these lived experiences isn’t happening. The big barrier for us is information.
🌺 Naomi Vailima tells The Post (paywalled) how Nesian, the dance group opening for the Pacific Dance Festival tomorrow, came to fruition.
My friend, Niah started Nesian. We were part of an all-abilities group called Fusion 2.0 from 2012-2016. We performed in churches and community events. That itself was advocacy in the form of arts, as we were changing our image in front of our Pacific community.
Nesian came about when Niah and I used our performance experiences to teach the younger ones to develop the same level of confidence. The name itself comes from our Pacific Islands, being divided into three, which is Melanesian, Micronesian, and of course Polynesian. We wanted a name that reminded us that no matter which pathway we go through, we're never alone, despite our capabilities.
What keeps me going is the stories that we tell. It's the journey of each individual that I work with alongside, that makes it worth it. It's not often you see a wheelchair user who happens to be brown, on stage and dancing their culture. It's seeing the excitement of my team and being able to help them explore their cultural identity more than their disabled identity.
🩺 Louise Thornley writes on The Spinoff that political action is needed for investing in those with ME/CFS. While the number of ME/CFS patients living in Aotearoa may have doubled in recent years, New Zealand’s public health system has no dedicated services and no specialist doctors for these patients.
…the group’s estimate has risen from roughly 25,000 to 65,000. If this estimate is correct, that would be more than the number of New Zealanders with rheumatoid arthritis, lupus and multiple sclerosis combined. Compared to most chronic illnesses, there’s only patchy medical and public awareness, little tailored health care, and very little research investment.
⚽️ The Wellington Phoenix has partnered with Blind Low Vision NZ and Lower Hutt AFC to run monthly football sessions for members of the blind and low vision community in the Hutt Valley and wider Wellington region.
❤️🔥 Becki Moss interviewed theatre artist, Lusi Faiva, who premiered her show AIGA last night in Te Whanganui-a-Tara as part of Kia Mau Festival. It’s still showing tonight and tomorrow night if you’d like to see it.
For Faiva, staying grounded is an essential part of her personal journey of success and the accomplishment of sharing her story with audiences. “My story is so strong and intense that it intrigues many people. I have to keep it real and honest about what I share. I'm a sensitive, disabled artist. I have to keep telling myself not to cry. I know it'd make my face look worse and awkward. But I know it's a good feeling to interact with the audience.”
⚧️ Have you seen the new (and beautifully illustrated ) To Be Ourselves report on trans and non-binary disabled people in Aotearoa? Julia de Bres and ia Morrison-Young write about the the heaviness and joy of producing the report which takes in the responses of disabled people on the second report of the Counting Ourselves research.
We wanted to write our report in a way that foregrounded the power of our communities’ voices, so we chose to present their words in the form of data poems combining the exact words of several participants to express a common theme. One of these data poems is the source of the report’s title, To Be Ourselves. It ends:
My existence itself is a form of activism
And I feel a lot of responsibility
For being all of who I am
This gives me meaning in life
And the strength to keep going
It’s magical
I feel honoured to be this way
And I feel the future needs us
To be ourselves
🎭 Got an idea for a play? The Magnificent Weirdos (Sameena Zehra & Helen Vivienne Fletcher) is looking for eight short plays up to 20 minutes long from the d/Deaf, disabled and neurodiverse communities, or from those who have lived experience of mental distress.
As part of the First Draft initiative, your draft may be selected to be workshopped with professional actors and dramaturgs over a two-week period and presented as a staged reading in August. Submit your draft by the end of this Sunday 8 June to magnificentweirdos@gmail.com
Kia ora 🌿
Eda
Reading that the DSS taskforce will continue is a kick in the guts because once again others who don't have lived experience of disability decide what DSS looks like yes we will be consulted but we will not be at the decision- making table.