Koha Kai

15/09/2025

I always feel incredibly proud when one of our Rangatahi breaks through the goals they set for themselves. Whether it be Luca, one of our early achievers, taking the stage at Te Matatini last year, and following that up (before and after) with performing as one of the Rangatahi Hosts at Polyfest, or Cairo - another of our Rangatahi who has set himself the goal of building a career in Basketball. In both cases they know that only the very best of the best can turn those aspirations into reality, and I have nothing but admiration for their commitment and focus to achieve their dreams. In July of this year, Cairo and two others from School travelled to California where they participated in a three day long basketball camp after which Cairo was named in the top 13 defensive players from what was an international cohort of Under 18 players. A wonderful experience that he says helped him immensely to hone his skills.
So last year Cairo worked with and played on our Takatimu Rangers Basketball Team. Sadly this year we won't be able to run a basketball team due to funding. Instead, this year Cairo is training Under 14 Boys Teams, and over the weekend his team travelled to Otepoti, Dunedin to compete in a regional tournament.
What a fabulous outcome - couldn't be more proud.

13/09/2025

The Congoliese Whānau are not alone in their challenges when coming to Invercargill. This is something we saw early on - in our case with the International Students as well as Colombians and essentially any of those whānau who left everything that was familiar to them. It was helpful to support them to not only begin to recognize the seasonal food which is available here, and teach them to grow food - both communally and in their own homes (sometimes in buckets or raised garden beds made from old pellets), but also to show them how to cook seasonal veges available locally. Its an ongoing and necessary kaupapa that these guys are doing, and as part of the MKC Whānau, we are really happy to support them however we can.

On a back section off Tay Street, a patch of grass has been transformed into something pretty special.

13/09/2025

Where I was heading to the revelation of understanding that we should never make assumptions about people. When as medical or professional people – be that teachers, doctors, shop assistants, whoever – when we are working with people with very high needs, please don’t assume they can’t hear you just fine, or that they can’t understand what you’re talking about.
I’ve had so many parents or carers/support workers say to me things like – “He’ll never remember your name – because he just isn’t capable.”
To which I respond “Well if he can’t remember my name – he’ll never get me to answer him, so best he learn it.” – and he did.
“He can’t understand what you’re saying, he has the mind of a three year old.”
“A three year old what? Perhaps if we treat him like the adult he is, he might just start behaving like one”. Followed by “Oh, by the way, if he’s coming to Koha Kai, he will need to wear this uniform – perhaps its time to retire the Thomas the Tank Engine Teeshirt”.
Another beauty was when I was warned, “I wouldn’t sit too close to him, because he likes dangly earrings and he’s very likely to pull yours.”
What???? To him directly “Please don’t be tempted to pull my earrings, because if you do, it will hurt me and I will not like it.”
He never did – of course. What those caring little hints do, especially when shared with a stranger right in front of the person is set the scene and the expectations both for the listener, and for the person. Whatever you expect is exactly what you will get. I do get frustrated.
These examples are actual things that happened – things that were said to me, at our initial interviews, in front of the people themselves – and it happens all the time.
“Oh, he can’t do or say ….(whatever it is) – because he’s handicapped.”
What sort of language is that? But I can say nothing, because if I respond the way I want to, I will never see them again.
Wow, I’m really venting today – but its just not fair – and the unfairness that drives me.

12/09/2025

Bradley decided it was in everyone’s best interest if he was no longer a burden to his family, but he had no capacity to get a weapon to injure himself or even to access his own medication to ease the passage. So he decided his best option was to wait till they were going to the shop, and typically he would be sitting on his grandmother’s knee in the front seat. He decided that if he timed it just right – as they left the shops and turned right to go home, that he could give an almighty shove and throw himself out the window of the moving car, and that should do the job. The window was always open, because this is Central Queensland – average temperature 30degC and their car didn’t have aircon, back in the day. So the window was always open.
He was probably quite upset as you could imagine and he was trying to arrange himself to get the best leverage – which his grandmother saw as him squirming. Came the moment, and Bradley gave himself a huge shove, and his grandmother hung onto him and then smacked his bum for his efforts.
“Stop that – you could have hurt yourself.”
He never had another chance to try again. Those were just two of the stories from his book that stayed with me, and I’m pleased to be able to use them on here.
Bradley never made it to 20 years of age, passing away due to complications whilst still a teenager. But with the royalties from the book, his family purchased a small block of land just out of Agnes and turned it into a special retreat in his honour to give support to other disabled children and their families and let them have the chance to have a holiday.
Bradley Wolf’s BraeveHeart Retreat is still operational now as far as I know, and I’m just so grateful for the insights he has given us that have educated me to think differently about all disabilities, but especially for those like him who cannot communicate and whose conditions render them very high needs.

12/09/2025

I made a mistake calling Bradley’s book Braveheart. It was actually called “Trapped in Silence” – I’ve been home now for 20+ years details may be clouded. Clouded by the fact that he willed the profits from his book (through his Grandmother) to the establishment of the Braeveheart Retreat. A special place just out of Agnes Water/1770 in Central Queensland. It was set up specifically to provide a place for people with disabilities to go to have a holiday.
I understand it took Bradley two or three years to write his book, a slow and difficult process given his restrictions.
Some of the key takeaways I had from the book were:
Bradley had no idea he was disabled, until his little brother Danny began walking at about 15 months old. He said that like the rest of the family, he was excited as Danny became increasingly confident, and he was encouraging him to take his first steps. It was only after that he realised that although he was Danny’s older brother – he couldn’t walk. So after that there was an awakening for him both of his disability and of what those restrictions meant to him in real life.
At the age of about 7, Bradley became so disheartened that he decided to commit su***de. But always aware of his physical limitations, he knew it was going to be hard. Where we lived in semi-rural Queensland, things like seatbelts and carseats could be optional, and it was quite normal practice for him to be sitting on someone’s knee in the front seat of the car when they were running into the supermarket.
Bradley felt that he was too much of a burden – financially and practically. He could also hear the conversations that went on around him – about his health, about the challenges his family faced specifically connected to him and to his disabilities, and so he decided to take action and do something about it.
I’ll tell you about his grand plan in the next post.

11/09/2025

Coming back to Bradley Wolf’s story. Bradley was a severely disabled young man. Diagnosed with Cerebral Palsy at birth, his family knew he would never walk and it was unlikely he would ever talk. He was perhaps one of the most severe cases, and my understanding was that he had numerous other issues commonly associated with high needs challenges like his.
He never walked. He never talked, and because of his high level of needs the family needed to work together to provide for his needs. I never met him, so I don’t know his precise challenges, but when he was aged about 12, there was this new opportunity that came about. With the introduction of technology came the use of computers, and for high needs people came the early tablets, which I can’t remember if it required a puff of air, or if it could work by the direction of the eyes. Doesn’t matter. His family were given the opportunity of putting Bradley into this programme and on his very first try – his first words were “I love you Dad”.
His family had never known that Bradley had any cognitive ability. They had always sought to treat him as an ordinary kid, but they had no idea that his brain was functioning in an otherwise helpless body. Turns out he taught himself to read by watching Play School, Sesame Street, and just by watching TV which he spent an awful lot of time doing.
He went on to write his book, and I’ll tell you a bit more about that in my next post, but what that taught me was – we should never make assumptions about someone who is high needs disabled. We literally have no idea what is going on in their brains, and so I believe we should always treat them as though they are fully cognisant, as though every word that passes our lips is understood, and wherever possible give them choices about their lives and how they are lived. Just because they may not have control over the way their body and their brain functions does not make them less. Please remember that.

11/09/2025

Anne’s story went from being ordinary, to being isolating and traumatic. The financial challenges needed to travel to England for the transplant. The many times she almost died before the operation. The steadfast love and support of her family as they wrapped around and protected her, to finally the transplant, at the cost of another’s life. She spoke of the sacrifice of the family who wanted their loved one’s life to give meaning and hope to another person and family. All were honoured, and eventually Anne returned home. For three years she lived the life she always wished for. She experienced social inclusion, went to the movies, had coffee with friends. She studied, wrote her book and was no longer invisible. She made her own decisions and she experienced love. But the operation was still experimental, and from memory she had just three years or so, till she passed away from organ failure.
So her story, although I didn’t know it at the time, came back to visit me over and over when I began working in the disability sector. The contrasts between seeing the world and the people in it from the perspective of a wheelchair user, when shops, churches, schools, transport – all are made for non-disabled. Moreso then than now for sure, but I am part of the Disabled United Network. A group who gives voice to the disabled community and advocate to make our community more accessible to people with disabilities, and challenges remain.
When I am talking to trainee doctors and nurses, to anyone in the primary healthcare system or to any professional who interacts with people from the disability and aged care sector. For goodness sake think about who you are addressing and speak to the person, not to their support person. Speak to them. In hospitality, look at the person for whom the order is being taken, and address them directly, even if the order comes from the person with them. If there is one thing I learned from Anne’s book, it is to ensure that everybody is valid.

10/09/2025

Earlier I spoke about CBT’s being a learning tool which though outdated in its presentation did offer sound information about how the brain works, processes information and guides behaviours for people living with disabilities.
We are all the sum of our learning, our experiences of the environment we live in, and of the genetics which contribute to our makeup. So its interesting when we consider how health events can force a new trajectory in a person’s life.
When talking about Anne Crawford, a young girl raised on a small farm at Myross Bush, with nothing to differentiate her from every other child, until a health event, not unlike Covid-19 struck her down and changed the trajectory of her life.
A bout of flu impacted her lungs and took her from being a joyful, hearty, playful, cheeky child to being a frail wheelchair bound invalid requiring oxygen. She went from being unnoticed in that she was like every other child, to being and invalid invalid. Isn’t it amazing what the English language can do to a person. Invalid as a noun describes disability. That same word as an adjective invalidates a person’s Wairua and introduces the concept of being no longer recognized.
Anne’s book talks about how she felt, but it also described a persons transformation from engaged, active…..dare I say ‘normal’ to a person who was only partially visible. Many of the discussions and decisions happened around her. She was very positive about it – she wanted to live. But she was unable to be an active contributor to her own life. The decisions that affected her were increasingly made by others She faded as a person as the story became more about how her challenges, her disabilities affected and impacted those around her.
Sadly, this is how it is for so many within the disability sector. Her life was contrasted between the before and the after with her disability. For many I work with – they have only ever known the after, and it is this inequity that I feel compelled to address.

10/09/2025

Over the years, I have often been asked if I could put my thoughts into a book. I would love to but I am my greatest critic when it comes to writing. I am very grateful for the engagement people have with what I write on here, but I have that constant insecurity in my head that negates my words. I don’t feel worthy. So it is easier for me to write in tiny little bite sized segments.
When I was living in Australia, as the interweb became a thing, I began to give voice to my thoughts via that medium, and it continues today. Back in the beginning it was how I saw the moments that influenced my life. I constantly found life to be as funny as hell, and it still is. But back then it was more about how I saw the people who crossed my path, with focus on self-deprecation, and also zoning in on the challenges I saw in others that I found immensely amusing – usually family members. Who knows, some day I may share some of them on here. The main thing is to record those moments so they aren’t lost to you, and you can revisit them at will.
There are a couple of books that come to mind right now about disability, by people who lived with it. One is called “Pumps and Bellows” by Anne Crawford. Anne was an Invercargill girl, and an early recipient of a Heart/Lung transplant back in the 70’s. It was a really long traumatic process for her, involving immense challenges, and horrendous costs. I think the book was about telling her story yes, but also it was about creating a legacy. It was a book that did really well in Aotearoa, but I’m not sure how much wider it was distributed. It was impactful for me as I was dating her brother at the time she was going through that process.
The other is called “Brave Heart” – by Bradley Woolf. Bradley lived with Cerebral Palsy and came from Boyne Island in Queensland where I lived. His brother Danny was at school with my nieces, and in both cases, perhaps knowing their families has made their stories so much more impactful for me now.

09/09/2025

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09/09/2025

Good quality, contemporary learning around how to work with people who are on the spectrum is key to creating the social equity we are seeking for vulnerable people.
Sadly the need for quality learning does not seem to be a huge priority, or those who are guiding the learning are more lineal in their approach. Like school, talking, writing and theory (boards and books) seem to take priority over a more pragmatic, practical approach. In my opinion it is a missed opportunity.
For the past...many years, I have been invited to speak to students at SIT who are studying Social Services. If I were to look into my crystal ball I would suggest the courses currently on offer will eventually become the starting point in regulating the sector. The regulation is long overdue, but it actually needs to start higher up the pecking order - and I'm working on the framework of what that could/should look like.
For the past three years, I've also engaged with Otago University and Te Whatu Ora, and I've been invited several times to contribute to the Social Sector portion of learning for third year trainee Doctors, second year nurses and assessment Boards whose job it has been to review certain courses. I've seen it as a great opportunity to heighten awareness of what it feels like to be a person with a disability engaging in the Primary Healthcare Sector. That has included, on occasion, to including some of the people I work with in that korero. Who better to tell their story than them?
I was just wondering if there would be any interest if I were to offer some workshops for people to learn more about neuro diversity and living with disability in the wider community? Let me know either by PM or by leaving a comment if anyone might be interested in something like that

08/09/2025

The work I do in the Disability Sector has behind it some good learning. Back when I was a support worker, part of our work included the study of Cognitive Behaviour Therapy (CBT), and I got as far as Level Three. But I struggled for two reasons.
1 – Like so many others, I’m neuro Diverse, and mainstream linear learning is not for me – never has been. I failed academically, like so many others of my ilk.
2 – Seriously -the videos and programme that we were learning was based out of the seventies. The men had sideburns and droopy moustaches, and everybody wore bell bottoms and ties. The furniture was – well if you want to know what it looked like – take a gander in the side rooms at The Grille (Transport Museum Café).
All the actors in the scenarios were support workers I’m guessing and they all took turns at staging various scenes for us to learn from.
If you know anything about neuro diversity, you will know that once something gets into a neuro-diverse mind – everything else turns to custard. I spent more time saying (in my mind) – “Hang on a second – wasn’t that guy the one who was elevating in the last scenario? How can he have any credibility as a support person in this scene?”
So it was a struggle, but I managed to get through Level 3, and I didn’t begin each answer to every situation with “Well he/she lost credibility by playing a different role…..” though I very much wanted to.
But once I got over myself, it did give me some good pointers to recognize where challenges can occur, and to be honest, I do have a natural affinity for people, and you’ve probably picked that up already. The rest, and the most valuable part of my learning has come from actually working with people, and from observing the way they process life. Doing it respectfully and with gratitude for the opportunities they have shared with me.
So I feel some responsibility to impart that knowledge, to make things easier – in theory. Hence the stories I share on here.