Kramer Hoeflich: We see the person before the disability

Kramer Hoeflich, 25, was paralyzed after an accident in the Cook Islands, a few days after his 15th birthday. He shares his story to mark Disability Pride Week.

 

Before I had my accident, my daily routine back in the islands was go to school, go home, do housework, yard work, rugby training, league training — whatever season sport we were playing — work in the family business, the takeaway and supermarket. Sleep. Repeat.

This was the way we lived since I was a kid. When the cultural festivals came along, I’d perform and dance in them.

It was early 2007 and it’d been a hard couple of months — my best friend had passed in November, and we’d had another storm. January 2, a few days after my 15th birthday, and heavy winds had blown lots of trees over, so I’d been hanging fallen banana bunches back up on the trees and covering them with sacks so they could ripen.

Then my cousin and I headed to our favourite swimming spot: Black Rock. Us local kids had been jumping and bombing off it forever. I stood on top to do my first official jump, a type of bomb called the Gorilla.

You jump, do a flip backwards, and your neck hits the water first. The water splashes between your legs. I’d done it so many times before, but that day it went wrong.

I still don’t know if I smacked a rock or the sea floor, but it tore the skin off my head and I couldn’t move from that point on. I slowly floated up and my cousin was screaming and running towards me. Some locals and tourists came to help. They carried me to the road. My grandma had been way over at the other side of the village and, in the middle of it all, I remember seeing her there on the side of the road and thinking: Man. How did Grandma get here so quick? She must’ve been driving like Vin Diesel to get here.

I was in the hospital for weeks. They’d cleaned up the wounds around my head and they wanted to do surgery on me, but my family wanted the surgery to be done in a New Zealand hospital because the service is far better.

One day I woke up and couldn’t breathe. My whole body was shaking and spasms and no one knew what was happening. The next day my mum went to the doctors and said: You better send my boy to New Zealand for treatment. Or else.

That’s when they finally sent me to Auckland. When we got here they rushed me into ICU. That’s when we found out what had happened to me. I’d fractured and dislocated my neck and torn apart my nerve systems.

I was in hospital for the next three months. They operated, and then came the dreadful day. It was a nice sunny Auckland morning. The doctors walk in and, the way they tell you, it’s like you’re on a bad date. They build you up, then they dump you.

They told me the surgery went well. We were able to do this, we were able to do that but, unfortunately, we are the ones who have to tell you that you will never walk again. You will be paralysed for the rest of your life.

Everyone was in shock. My mum and grandma were crying, telling me that everything is all right, God has a plan and all that “life’s not over yet” kind of stuff. All I could do is lie there and cry.

So, from there I went to the spinal unit, the rehabilitation unit and back. I was paralysed from the neck down — I couldn’t move my arms or upper body. Every time they moved my arm, it was like a rusty old iron bar. I’d scream every time.

It was like learning everything I learned as a baby all over again. Brushing my own teeth, having a shower, dressing myself. Learning how to do the simplest tasks all over again. Because some muscles weren’t working I had to find different ways to do everything.

While I was in the spinal unit I realised what I wanted to be in life, what I wanted to do in life. Some people would have looked at me and thought: “Oh, well, life has ended for him.”

For me, it was the opposite. Life for me had just started. I decided I wanted to be a counsellor, a therapist who could help and listen to young people who’d gone through similar situations that I’d gone through.

I remember going to see counsellors at the spinal unit, and what pissed me off is I’d have to talk to counsellors who are able bodied, who say to me things like: “Kramer, I understand what you’re going through.”

And when you’re just a kid like me, you kind of listen to them and swear to yourself because: “No. You really don’t understand what I’m going through because you are going to get up and walk out of this room. I’m not going to do that.”

I knew that I wanted kids going through spinal units to have someone like them that they could talk to. Someone who actually understood what they were going through because they’d gone through it themselves.

Maybe that someone could be me one day. Well, this is what I started thinking about.

Our family regrouped here in New Zealand. My brother was already down in Christchurch with the army and he visited often. It was about six months later when the government told my grandma she had to go back to the islands. She was a permanent resident of the Cook Islands and had lived there for years but she was not a citizen. She was a Samoan citizen.

That was sad because we were so close, me and Grandma. She was like my mum. I called her Mum and I called my mum by her first name. In our village, I lived at Grandma’s house but would visit mum at her place on the other side of the village every day anyway. Island styles.

So Grandma went back to the islands. She was really depressed and missing us. So she fell ill and sadly ended up in hospital and passed away. That made things so much harder. My mum and everyone went back for her funeral, but I had to stay here. Four months later my grandpa, my grandma’s husband, he passed away. Yeah, 2008 was a really hard year.

So we sold our family businesses in the islands and we began our new life here in Mt Wellington. I would’ve loved to go back to the islands, but it’s not that suitable for people living with disabilities. I had to get used to life here. We’d been here for holidays but never to live. I’ve found it quite cold at times and I’ve lost my brown tan. I think that I’ve had to hold on to my Italian side to get used to the temperatures here.

Selwyn College was a good place for me. I made a few friends there. But something was missing. Ever since my accident, I’d been so quiet. I’d shut myself out and away from people.

That changed one day. I’d been at the school gym and the taxi van driver coming to pick me up arrived and, when I got in, there were these other kids in the van. The driver says: “Oh, I have to take these kids somewhere, so just hop in, I’ll give you a free ride home.” So I thought: “Oh, well. Sweet as.”

The kids in the van were from Phab Pasifika, a mixed group of young Pasifika people who were both able bodied and with disabilities. They seemed cool and were telling me to go and check it out and so I did.

And something switched inside of me. And, when I went there, all of a sudden I started getting my life back on track again.

At the same time, I was still at college and like a lot of kids, I was always trying to get out of doing stuff like homework. I had a way with words that was probably more bluffing and making up stuff than anything else.

The school kept asking me why I wasn’t doing my homework and so I said: “Oh. I didn’t tell you guys that when I smacked my head it means I have short-term memory loss. I forget to tell people that sometimes.”

And the teachers were: “Ohhh! We understand. That’s okay. No worries Kramer.” So I got away with this for a whole year, but at the final parent teacher interviews they told my mum: “Your son is doing very well in school despite his amnesia condition.”

And my mum said: “Excuse me? What amnesia condition?” Then she turns around to look at me and gives me the salu look. (The salu is a Samoan broom, and the salu look is what Samoan mums give to Samoan kids who’ve been misbehaving.) And she turned to the teachers and I said: ”Oh, well. Happy Late April Fools Day guys.”

In spite of my “short-term memory loss”, I managed to pass NCEA in Year 13. My homeroom teacher used to tell me I’d make a good lawyer or politician. So who knows? Maybe I’ll try that one day. While I have graduated from uni with a degree in community skills, I’ve continued to further my study in tertiary qualifications and right now I’m working on finishing my degree in counselling.

A lot of kids who live with disabilities don’t want to be chucked into a room with only disabled people. We want to go out and get to know all kinds of other kids — able bodied and disabled. We see the person before the disability.

So Phab members come from high schools all over our community — De La Salle, Papatoetoe High, McCauley, Otahuhu. They just come and hang out with everyone else, regardless of disability or ability. These kids just came, and pretty soon became our good friends who helped us to get out there on our own, to do things with our friends.

For Pasifika families, it’s not always easy. I often head out to schools and engage with young people in special education units, kids that were like me back in the day. Hang out with them, talk with them, and work with their family so they can trust and not be scared or too stressed.

I knew that they were like my family, really quite scared to let me go out and do things without them. But, more and more, I kept going, and it wasn’t just another youth group. You gain a second family.

We celebrate everyone’s culture — we’ve got Kiwi who are Pālagi, Asian, Samoan, Māori. So it’s quite mixed and multicultural and I love that about it. I was still at college when Phab offered me part-time paid employment, and they encouraged me to get out and about. I loved it.

Sometimes it’s about working with our own communities as well. We wanted our kids to perform at Polyfest but the groups are quite competitive and said no straight away, so we sat down and thought: Our Phab members are our bosses. Our kids want to take part in Polyfest, so how can we make that happen.

So instead of trying to get our kids into other groups, we created our own dance group and they performed at Polyfest more than once, as well as Pasifika. We found a way to help make what they wanted become a reality. Instead of telling them what they wanted.

While working with PHAB Pasifika, I also work with the YES Disability Resource Centre where I am the chairperson for the Youth Engagement Group (YEG).

The YEG can be really fun — like breaking the world record for the longest line of people in a wheelchair moving in a consistent line. The Americans used to hold that record before we beat them. One year we came up with an idea to put on an art show where we re-enact famous iconic album covers.

The theme for Youth Week that year was rock stars and we wanted to showcase disability youth participation in Youth Week — the Rolling Stones, Lorde, Madonna. I got the Rolling Stones, Tattoo You cover. I wanted to incorporate New Zealand into it. Māori, Pasifika, Youth, LGBT and all that. So that was the message behind my one.

As well as the YEG, we’ve now started up an EAB (executive advisory board). This enables us to target policy change that our kids need. Advocating for our young people is part of my life, so I’m on the Faiva Ora National Leadership Group as well as the Auckland youth advisory panel.

Life’s always busy now. I’ve started to train in archery again and hope to make the Paralympics sometime. But I know that advocating for other young people like me is where my passion lies and what I’m meant to do.

What does Disability Pride mean for me? It means people in our families and communities supporting us and vice versa. It means having opportunities. It means all of us being able to live with mana every day, not just one week of the year.

 

This piece was first published here, as part of a series in which New Zealanders living with disability are sharing their stories with the Human Rights Commission.