Kiringaua Cassidy does not want to do any more interviews like this one. But he is unlikely to get his wish.
The young man sits in his sports wheelchair, a compact contraption that is all angled wheels and pivot points, designed for manoeuvrability and speed. Paralysed legs, the result of spina bifida, a structural birth defect, rest on the chair’s footplates.
Muscular arms adeptly twirl a taiaha, a wooden Maori fighting staff, which spins from side to side in front of broad shoulders and an ever-smiling face framed by dark brown hair tied tight in a topknot.
Kiri (12) is a member of He Waka Kotuia, a kapa haka group based at Queen’s and King’s High Schools, in South Dunedin.
The 40-strong Maori culture group is run by his parents, Komene Cassidy and Paulette Tamati-Elliffe, and includes his brothers Tumai (14) and Te Atarau (9).
It is a life Kiri was born into and that continues to occupy a central place in his world; an interwoven blend of family, friendship, cultural identity, physical training and creative outlet.
"It’s basically my life. I love doing it," Kiri says.
Combined practices are held twice a week, a total of seven hours. Individual practice is expected too.
In the lead-up to competitions, weekend-long marae live-ins are also held. The hard work pays off.
At the national secondary school kapa haka championship in Napier in July, the audience went wild as the young Dunedin men and women performed a spirited haka, Kiri centre-stage, flourishing a bone mere and bouncing his wheelchair off the ground in time to the powerful chant.
He loves performing. But the attention his disability brings is not something Kiri seeks.
"I think I get too much attention being in a wheelchair doing this," he says. "I want others to just normalise me as an ordinary person doing kapa haka."
Is that even possible? Could a time come when we see Kiri more clearly than we see his wheelchair?
It is the explicit aim of the draft New Zealand Disability Strategy, for which a final round of public consultation closed this week.
But it will come to nothing without further significant shifts in public attitude, those living with disability say.
The Disability Strategy is the most significant such New Zealand initiative since the first strategy was produced in 2001.
Society, technology and research have all moved during the past 15 years.
The Government needs a plan that reflects those changes and also takes account of the United Nations Convention on the Rights of Persons with Disabilities, which it signed up to in 2007.
The strategy’s vision is enormous. Written in the first person, it seeks to speak for the aspirations of the one in four New Zealanders who identify as having a disability, be that a physical, sensory, learning or mental health impairment.
And it seeks to define 10-year goals across education, employment, health and wellbeing, justice, accessibility, attitudes, choice, control and leadership.
It has been described as a new vision for New Zealand, as a country where disabled people have the same opportunities to achieve their aspirations as everyone else.
Overseen by the Office for Disability Issues and with monthly input from a 14-person expert reference group made up of people from throughout the disability community, the draft strategy has gone through two rounds of nationwide public consultation.
That second round closed just this week.
Alongside the strategy, due to be finalised by Christmas, will be a reworked Disability Action Plan and an Outcomes Framework, which together will define what success looks like and map out the "how to".
"Yes, it is a big deal," Robbie Francis says.
"And I think it needs to be. Because we still haven’t got it all right."
Miss Francis is a member of the expert reference group and a PhD student at the University of Otago.
Born with a congenital condition that meant she learned to walk using a prosthetic leg, she says she has had plenty of opportunities in her life, as well as barriers.
"But there are still New Zealanders who are segregated, isolated, who, in their words, are living the life of a second-class citizen. Who feel unsafe in their own communities, who cannot be part of the community because of the barriers.
"Until these things are acknowledged and addressed we can’t give up this fight. So, yes, it is important ... When the Government makes any decisions that affect people with disabilities, this is the document they should be referring to."
• The strategy requires more than just government buy-in.
All New Zealanders have a role to play, she says.
"There are laws to protect us. There is the convention that New Zealand has signed up to. But on the ground, underneath it all, is where we need to be looking. Are these things being implemented on the ground? That’s the big question.
"In my opinion, attitude underpins it all. It is a huge one. This is why the whole strategy is written the way it is; because it is speaking straight to the attitudes of society.
"When attitudes shift, it is only natural that the practical implications will change. And we have seen that; we have seen changes. But we are not there yet. We do not yet have an equal place with people without disabilities. Maybe in law, but in attitudes, no."
Disability rights have trailed along behind other rights movements.
Throughout last century, indigenous, women’s, sexual and gender rights were fought for globally.
In New Zealand, disability rights did not come to the fore until the late 1990s.
The catchcry "nothing about us, without us" signalled a sea change.
It usurped the traditional disability-disease model, instead making disabled people the "experts" of their own journey.
In this world-view, people have impairment but the disability rests with society.
"Disability relates to the barriers that society creates," Miss Francis explains.
"There’s what I need in order to engage in society. But there’s also what society needs to be doing to accommodate diverse abilities."
It is a clever mind-switch, but one that is yet to filter down to all corners of the population.
It has already produced positive change, but there is still a long way to go, Chris Ford, who is kaituitui (community development worker) for the Disabled Persons Assembly Dunedin, says.
"Attitudes have changed during the past 20 to 30 years but ... there is still a fair amount of discrimination in society. And it largely takes place due to negative attitudes," Mr Ford says.
People with disabilities are stared at; they face discrimination trying to get work; and people with psychosocial disability (the new name for mental illness) have to deal with a barrage of negative attitudes, to name just a few examples, Mr Ford says.
"I’ve heard of people who’ve been denied access to bars because there was the perception that they needed support people to always be with them. I’ve also heard of sports clubs that allegedly objected to people participating in sports on the basis that they had a disability. Those were recent occurrences, locally. They come down to attitude."
Asked about his disability, Mr Ford says he gets tired of explaining it to people.
"Just say, mobility impairment," he replies.
"I want to live in a world where no longer am I defined by what my impairment is, but by how I can contribute as a citizen. And that’s what this Disability Strategy is all about. It’s a vehicle to achieve that."
• Dan Buckingham sees that day approaching, but admits it is on the basis of the momentum already generated rather than because the destination is within reach.
Mr Buckingham is general manager of Auckland-based Attitude Group, which produces disability-focused television programmes.
In 1999, he broke his neck playing rugby in Dunedin.
He is a member of the Wheel Blacks, New Zealand’s national wheelchair rugby team.
The team did not qualify for next month’s Rio Paralympics but Mr Buckingham will be there anyway as one of the presenters of the extensive television coverage of the Games.
"I live a very privileged life in terms of living with a disability, because I am included and there is an expectation that I work and have a relationship and drive myself to work and all that sort of stuff," he says.
"It’s really important to acknowledge that that is due to a lot of hard work by people who have gone before ... They had to be so militant to make change.
"And then there’s the next phase, which includes [Kiri]. That’s part of the brilliant next step that we want, the fully inclusive society. ‘‘I think it is on the way, but social change takes time. It’s about chipping away on so many fronts."
When Kiri was 8 years old, he was asked what one thing about his life he would want to change.
His mother expected him to say he would want able-bodied legs.
"But he didn’t," Ms Tamati-Elliffe recalls.
"He said, ‘If I could change one thing, it would be people’s attitude’."
Kiri still feels that way.
On the one hand, "I don’t allow other people’s thoughts and attitudes about me to get in the way of what I want to do".
But, with wisdom beyond his years, he also recognises others’ attitudes can exert a subtle power, warping how one lives one’s life.
"I think people with special needs try to focus on fitting in, rather than people accepting them as they are," he says.
So, he still wants to be seen as simply "an ordinary person doing kapa haka".
But that might not be possible, Ms Tamati-Elliffe says.
"I know you are saying you don’t want to have a profile," she tells her son.
"But I think, by creating a profile you are helping other kids with disabilities see that they could be part of things as well."
His might have to be the dream he helps realise for the next generation.
The numbers
Disability in New Zealand: Statistics and Inequities
• More than one million New Zealanders identify as being disabled, almost a quarter of New Zealand’s population. Disability includes physical, sensory, learning and mental impairment.
• Just over half of all disabled people have more than one type of impairment.
• Almost 60% of people over the age of 65 identify as disabled.
• Maori are over-represented, with 26% being identified as disabled. When adjusted for age, the Maori disability rate is 32%.
• For children, learning difficulty is the most common impairment type.
• 45% of disabled adults are employed, compared with 72% of non-disabled adults.
• 34% of disabled women have no educational qualification, compared with 15% of non-disabled women.
• Disabled people are more likely to have lower incomes than non-disabled people.
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Comments
We are not disabled, it is society that disables us. We are ordinary people wanting the same things as any other person. I have been blind for seven years, I get sick of people treating me different - I only lost my eyesight, not my brain.