Jordon Milroy: ‘Wow, I’m the lucky one’

Jordon Milroy was born in Sāmoa with cerebral palsy, and has had to learn to walk twice in his life. In this kōrero, the 35-year-old disability advocate talks to Dale about his life, and the work he’s done to raise disability awareness — including walking up the world’s tallest towers.  

 

Ngā mihi nui ki a koe, Jordon. Can you share your full name and your connections to Sāmoa?

Talofa lava. My name is Jordon Kirk Milroy. I come from the villages of Moto’otua and Lufilufi in Upolu, Sāmoa. I was born and raised there.

Tell us a little about your people.

I’m ‘afakasi. My mum, Raema Von Reiche, is German-Sāmoan, and my dad, Alan Milroy, is Kiwi-Lebanese, so I have a wide range of cultures to represent. I have a sister, Luana, and two older brothers, Christopher and Blake.

I spent the first 17 years of my life in Upolu, so I’m a proud Sāmoan. But I’m also a proud Lebanese, and that culture is important to me too.

You were very special in Sāmoa.

I wouldn’t say special. I’d say unique. As you can tell, I have a disability. I was born with cerebral palsy. I can walk, I can talk, but it’s a little bit different to everyone else. So my childhood was really colourful and unique, and the things that I faced made me who I am today.

So you went to school in Sāmoa?

When I was five years old, I was ready to go to the local school in Sāmoa, but they took one look at me and went: “Oh. We’re not ready for someone like that.”

My mum said: “What do you mean?”

“Like, okay, we’re not ready for someone with a severe disability. We’ll put him on the waiting list, but we don’t like your chances.”

I was on the waiting list for five years to get into mainstream school. In those five years, I did correspondence school from Wellington to Sāmoa. I was able to do the full curriculum, keeping up with my peers doing five subjects and showcasing that my disability affected my body, but not my brain.

After five years, we tried again to go to a local intermediate school, and they said: “Yes, we’ll take you. However, you’ll need to go into Year 6, not Year 7.” That’s because the Year 7 teacher put up barriers.

“That’s fine,” I said. “I just want to have an education.”

When I got to school, people realised: “Hey, he’s a normal pupil. He just needs some more time and someone to help him write his notes and his answers to the tests.” So I attended intermediate and secondary school in Sāmoa.

In year 11, I said to my parents: “I think I want to go to university to get a degree.”

They said: “Okay. What does that look like?”

I said: “I’ll need to leave the island and go and live in Auckland and finish high school there.” So I went to Mt Roskill Grammar for the last three years of my secondary education, and then I went to AUT for a communications degree and then a master’s degree in human rights. Now I have a master’s.

I take my hat off to you, Jordon, for accommodating many challenges that most of us aren’t confronted by, by having the steadfast attitude to get to where you want to be. How did the reo Hāmoa go? Did you grow up speaking Sāmoan?

Yes, I can speak Sāmoan, and I’m proud to be able to hold a conversation in Sāmoan. Every time I hear Sāmoan, my heart sings. It’s my passion for my culture.

I see you’ve had some success in the sporting arena. Where did your love of sports come from? What was your first recollection of getting involved in physical sports?

During my childhood, I had major surgery on my legs because of my cerebral palsy. In fact, my parents taught me how to walk twice in my lifetime.

Let’s talk about cerebral palsy for a moment. Cerebral palsy is brain damage in the part of the brain that controls the fine motor skills, such as walking and talking, and the hands. The doctor said to my parents, “You need to teach your child to do everything, such as picking up a spoon.”

Every day it was the same thing over and over, so my mum said to me: “Okay, for a couple of hours a day, you need to do physio.” That involved a lot of walking and swimming. It got me into the mindset of how to train, and the importance of being active every day.

My mum’s a sailing coach in Sāmoa, so I grew up around sailing. She taught me how to sail from a young age. After that, she made me a tricycle so I could learn to ride a bike. These were really important foundations for sports.

When I moved to Auckland, I really wanted to get into disability sports, so I tried my hand at wheelchair rugby, wheelchair basketball, disabled sailing. And then, because there weren’t a lot of choices for me to compete at a higher level, given my disability, I went on to climb towers.

I came up with the idea of climbing the Sky Tower, which has 1,029 steps. I climbed that when I was 21, and then I went on and did 10 more towers around the world, ending up in the Empire State Building, which was awesome.

After I’d climbed all these towers, my mum roped me back into sailing, so I went sailing in the world competitions for Sāmoa.

In recent years, I’ve been doing a lot of cycling. I was fortunate enough to go overseas for cycling. I’ve been to Belgium and Australia to cycle.

But I’ve come a complete circle, because I’ve just climbed the Sky Tower again to raise money for the Fire Brigade and leukaemia research. It’s such a good cause.

You’re amazing, mate! Where do you live at the moment?

I’m in Christchurch. I’m working at the University of Canterbury.

I’m intrigued by the human rights masters. Can you shed some light on why you wanted to pursue this line of study?

Well, that’s a really big conversation. From a basic point of view, people see the disability before they see the person. I wanted to attain knowledge of human rights and ask: How are my rights less than those of an able-bodied person?

So I went on the journey of studying for my master’s degree with a lens of disability because we, as a disability community, are fighting for the same causes. We’re fighting for equal rights, equal housing, the right to full employment. I wanted to look at how we’re fighting for human rights in the Pacific region.

In Sāmoa, they’re fighting for the same causes, but it’s 15 years behind. They’re still trying to get students like me into education. And there’s still a stigma around disability in Sāmoa among those who think that it’s a curse from God. I wanted to look at how we could develop a framework that would educate people in Aotearoa and also people in the Pacific region.

I find it really interesting that human rights and disability rights change depending on which government is in power at the time. As you may know, we’re fighting now to keep the funding available that we had under a left-wing government.

Join the club, mate! That’s all us Māori are doing as well, fighting for a fair slice of the pie. The model of care for people with disabilities in New Zealand differs from that in Sāmoa, and no doubt around the wider Pacific. Have you noticed any cultural Māori or Pasifika input into the strategies as a nation we’re using to address disability that may be different to other parts of the world?

Absolutely. We love to talanoa, where we come together as a group or as a society, where we all have a voice at the table. My experience is different from my brothers who have a visual impairment or hearing loss, but we can all come as a team and as a mana-enhancing group and say to the powers that be: “This is our voice. We’re united. Yes, we need different things, but we are all striving towards the same goal of equal rights in everything.”

That makes a hell of a lot of sense. I’m familiar with the funding cuts to the disability sector, not the intricacies of it, but certainly the governmental attitude of the day, Jordon, that’s affecting many very worthy kaupapa.

A lot of people think disability advocacy is about wheelchair ramps in buildings. Talk with us about other things that our disability sector needs, not from government, but from us as people, as community?

I’ll take you on a journey. When I moved from Auckland to Christchurch three years ago, I was able to obtain a full-time job at the university as a disability advisor. When students come to university and they have a physical disability or mental health condition, they book an appointment with me, and we talk about what accommodation they can get when they study.

Today, I have a caseload of 470 students. It’s almost doubled since I started three years ago. Ninety-five per cent of these students do not fit the norm of what a disability “should look like”.

When I started, I thought most people with a disability would look like me, or be using a wheelchair. But I can count on one hand the number of wheelchair users that I’ve seen in the last three years. The landscape of disability has changed from physical wheelchair users to people with ADHD, dyslexia, and mental health issues. And we have to accommodate that change and go: “Yes, welcome to our waka. Welcome to our fight. Let’s work together on this waka of change.”

It really opened my eyes as a disabled person, because, hey, my cerebral palsy may be severe, but some days I’m the lucky one. I come home to my wife and go: “Wow, I’m the lucky one.”

I’m pleased you’ve found love.

Oh, yeah, I found love. Not only that, we’ve got a one-year-old baby and another on the way.

That’s awesome. Staying with the disability kōrero, are you also working with people who weren’t born with a disability, but for some reason in life might have become disabled?

Absolutely. I think those people endure a pain throughout life. It’s a real struggle. For me, I was born with cerebral palsy. I will never know what it’s like to run or to climb a tree. But to become disabled halfway through life is a massive challenge.

One of my favourite stories is that when I was sailing, I found a sailing coach in Auckland who is a wheelchair user. He came off a motorbike and broke his spine. He’s a really good sailor, and a really good sailing coach.

One day, we were both volunteers for the sailing races, and there were enough volunteers for the number of boats, so the organisers said: “Oi! You two! Hop in a boat with each other and sail the race.” He looked at me and was thinking: “Wow, I’ve never known someone with cerebral palsy.” And I look at him and go: “This guy can’t even walk.” But by the end of the day, we made such a good friendship because we were able to go: “Oh, how do you do that?”

It was about breaking down the barriers and realising we’re just two men sailing who happen have a disability.

What about the term “disability”? Our old people thought people who were different were chosen by God because they were special, and that some of them carried amazing traits. Have you ever had cause to think of it in that way?

I’ll take you back to when I was eight years old. I remember lying in bed in tears, saying to my mum: “Why did God make me different? Why am I disabled?” And she said: “God made you who you are to be able to teach people how to slow down and enjoy life’s journey.”

And for me, I’m proud to be called “disabled” because that’s who I am. Others don’t like that label. I remember my sister, when we were younger, calling me “crippled” or “handicapped.” Nowadays, you’d never say someone was a cripple or handicapped. Language changes over time.

Nowadays, some people say: “I have accessibility challenges.” That’s fine. It’s about respecting what they want to be called. At the end of the day, I’m a husband, I’m a father, I’m Sāmoan, I have a disability. It’s one of my feathers in my hat. It doesn’t define the whole of me.

People with challenges are sometimes thought of as taonga, because of the richness of what they can provide us with, but often we don’t realise that. It takes some maturity to understand that that’s what’s occurring. Is there a similar kōrero or kupu in reo Hāmoa, that illustrates that way of looking at people who are unique?

I’m sure there are, though I’m not up to date with the changes in the language. For me, it’s about shifting away from old stereotypes. In my Sāmoan community here, some people look at me and say: “Kalofae,” meaning “what a waste”. Or “maimau,” which is a word you would use if you leave something out on the table and it gets spoilt.

If I hear that in public, I turn to them and say: “Why? Why do you think my life is a waste? I’m living a full life.”

Living a good life, by the sounds of it. You’re an inspiration to us all. I always leave the end of these interviews to say: “What else do you do? How do you stay fresh and keep yourself strong?”

For me, it’s being a typical 35-year-old male who loves to have my lawns tidy and enjoys raising a daughter, and really connecting with my Sāmoan side and relearning my language. I don’t have a lot of free time, so it’s about enjoying the moment and enjoying the journey. I like to sit on the beach and watch the world go by.

Back in the day, you were working to raise funds for rugged wheelchairs for kids in Sāmoa who are confronted with challenges. Is that an ongoing thing? Could we give it a plug?

The fundraising is not ongoing, but I still have a network in Sāmoa, and I can point people in the right direction to find organisations that donate equipment in Sāmoa. This is important to me, because equipment is the first step towards independence. Donating a suitable wheelchair that can go off-road unlocks potential for younger people.

For me, looking at younger people with cerebral palsy in Sāmoa and the Pacific is like: “Oh, I’ve been on that journey, so how can I make it easier for you to follow my footsteps?”

The first thing is to get them the right equipment, give them the foundation of knowledge, and then send them off to conquer the world. If anyone is interested, just Google my name and I’ll be happy to point you in the right direction.*

It’s been a great pleasure meeting you, Jordon. Thank you for sharing some time with us — I’m a fan.

Ka pai, thank you so much. It’s been an honour to talk to you.

 

(This interview has been edited for length and clarity.)

*If you would like to donate money to help buy wheelchairs and other equipment for children and adults with disabilities in the Pacific, contact Altus Pacific Aid.

E-Tangata, 2025