Entrepreneur and disability advocate Charmeyne Te-Nana Williams
Entrepreneur and disability advocate Charmeyne employs over 200 people to support people with disabilities, like her husband, Peter who suffered a brain injury in a boxing match. Whatever It Takes is a fitting name for her business, and the way Charmeyne approaches life. She lives between Mt Maunganui and Auckland.
PHOTOS Garth Badger WORDS Jenny Rudd
At a recent event for our speaker series, This Is How I Did It, Charmeyne told us the incredible story of how her husband Peter Williams’ brain injury and resulting tetraplegia has shaped her life.
Charmeyne and Peter had baby twin girls, who'd just arrived home from a 5-month hospital stay after their premature birth. And four weeks earlier, the couple had buried their son who passed away after being born at 26 weeks. Charmeyne was at home with their daughters in Auckland, on maternity leave for a job she loved at New Zealand Trade and Enterprise in the Māori enterprise team. Peter was down in Timaru at a boxing match, on his path to his plan to qualify for the Olympics. He'd previously won the world title for waka ama (canoe racing) in Tahiti. He was strong, athletic, and world class at the disciplines he put his mind to. He called Charmeyne and announced "I won, so I'm now the New Zealand Super Heavyweight Champion. I just need to go and do a drug test, then I'll call you back."
But he didn't call back. One of his teammates did. Charmeyne said it wasn't what he said that was worrying, it was what he couldn't say. He could barely get the words out. Peter had suffered a traumatic brain injury which left him a tetraplegic.
Her story was so inspiring, we knew we couldn’t leave it in the room.
I remember the day Peter went down to Timaru like it was yesterday. It was labour weekend in 2002. That morning, we'd talked about what we had dreamt the night before. We often did that. He said "I dreamt that my spirit had left my body and it was flying across Samoa.”
After I'd spoken to Peter when he won, I remember being so excited. I thought he hadn't rung back because he was out celebrating. Then his teammate called me and said "You need to get down here." At that point I had no idea what that meant. I didn’t know what I was walking into.
I’ve been so lucky and blessed, because my family has been amazing. My sister was staying with us at the time and she looked after our babies. I jumped on a plane and went down to Timaru.
Since that day, my life has really been in stages. Stage one was going down to Timaru.
STAGE ONE
The Rude Awakening
Some of the questions that came to mind at this time were: What the hell is a traumatic brain injury? I had no idea. I had never worried about Peter because he was so strong.
What the hell is this health system? I had no idea what I was walking into. I went into the hospital, he was in ICU and I just didn’t know what to expect. We weren’t allowed to stay there, so that was really daunting for me.
If it wasn’t enough that we were trying to deal with what was going on with Peter, it was all over the news. My brother rang me up and said, “Have you seen the newspaper?” On a front page was an article that said Peter was actually a Black Power member and had sustained his brain injury through an initiation. So he’s trying to fight for his life and here’s this article on the front page. Where did that even come from?
I rang a friend of mine whose husband was an All Black who’d had some bad publicity, and he put me onto his lawyer who represented us for nothing. We went to court to get them to retract what they'd printed.
By this time, I had to send my girls off, at eight months old, to live with their grandparents in Wellington so that I could work out how to help Peter. Thank god for my whānau, because if it wasn’t for them, I’d never have been able to get through these early stages.
STAGE TWO
The BS
I thought the system would focus on what's best for Peter, me and our whānau. But it didn't feel like that at all. You'd think you’d go from stage to stage – from hospital, to rehab, to home but, actually, it's not that way. Every time I went to another stage of what I thought was our recovery, it was just the same shit on a different day. All I knew was that I loved this man and wanted to keep my family together – that was my priority.
It wasn't just the medical system either, it was our society. Arriving in Auckland, a friend asked me if I was going to stay with Peter as a partner. I was shocked. They asked if I really knew what I was getting myself in for.
We left Timaru after a month and moved into ICU in Auckland for a month, then Peter moved to a rehab facility in West Auckland just before Christmas 2002. I thought that was going to be awesome, but it was really bad. The staff weren’t used to family members sticking around, but I was there every day. I became known as ‘the bitch’ – true story. In my mind I couldn’t understand why, because I was just trying to figure out how I could make sure that Peter was well looked after. What I started to realise was that everyone was doing what they thought was best, as opposed to what was best for me and my family.
Trying to find financial support to keep my family going was really difficult. When my maternity leave was over and I had to go back to work, I thought I’d go to Work & Income to get help with child support but was told I wasn't eligible because I was earning too much. I’m on $50k and I’ve got an adult who has a serious disability and two children. How is that a high income?
Then I was offered redundancy, which I took, because it meant I could go on benefit. I fought with my pride. I had never been on a benefit. But I knew that if I didn't, it was really going to affect my family's well being and my ability to care for them. I was exhausted and I needed to, so I did. And rather than pay me the extra $100 a week on top of my wages I could have been earning, they paid me about $70,000 a year to be on benefit and to support my kids. That seemed dumb!
You expect and trust that the experts are giving you the right advice, but I learned that that’s not the case. I found out some time later that Peter had been eligible for child support the whole time. We had to go to court to recoup it. What a waste of time and money for everyone involved.
STAGE THREE
Kete of knowledge
Finally, the penny dropped. When you’re in a rehab facility, you have a multidisciplinary team. You go to these whānau meetings and sometimes you might be the only member of the whānau with 12 clinicians around the table, who are all telling you what you should do. I was in one of these meetings and everyone was talking about how aggressive I was. I could feel myself shrinking into a corner in the chair, just fading away. My cousin was sitting next to me and she said, “You know, what some people would describe as aggressive, others would describe as proactive”. That was a turning point for me. I thought, that's right. I’m being proactive. I’m not being aggressive, I’m just fighting for what I know is right.
From then on, I started to listen, observe and figure out the things that Peter would respond well to in terms of his rehab. I thought about how I could take all these little bits of advice and information and fill up my kete of knowledge to move forward for Peter.
As well as learning from the model he was under, I looked around the world for different care models that fit what I believed he needed.
My aunty, who’s Māori and a social worker, said, “Have a look at this and tell me what you think.” It was a Māori model of care called Te Aho Takitoru which had been developed by her team as a social work kaupapa. What really jumped out to me was that the mana of the person being cared for was at the core. Reading it solidified in my mind what I have been trying to do since Peter's accident - I was fighting for the mana of this man. I just wanted him to be recognised as the man of the family, as a dad and as a partner. That’s all I was asking – nothing more and nothing less.
STAGE FOUR
Home is where the heart is
I thought going home was going to be easy – but it wasn’t. Having been in hospital and rehab for nearly three years, we’d applied to ACC to fund the modifications we needed for Peter to live at home. It was just before Christmas and I got a reply from ACC saying they’d declined our application. The application had taken forever, and they'd said no. I felt it was because they were solely looking at the injury and how to manage that injury. It was being done adequately, they felt, in the rehab centre. I could see though that there was so much more to the picture surrounding Peter's injury. What about his well-being, his wairua (spirit) and the mental health of my family as a result of the care decisions?
When ACC turned down our application, I thought if I don’t do something now, my family is just not going to survive this.
My brother-in-law worked for 60 Minutes and asked if they could do a story on us. I had turned down offers like this in the past, but I was desperate. So I said ok on the condition that Peter's integrity was maintained, and that the focus should be on getting Peter home.
At one stage during the research, I could see there was some focus on the fictitious Black Power connection. So I went marching up to the Black Power pad in Mt Wellington, knocked on the door and asked their leader to speak on 60 Minutes and set the record straight that Peter was not connected to them.
In the end, the show only talked about ACC for about a minute and how our application had been declined. It took three years for them to decline it, and honestly about two days to approve it.
Finally, we were going home. I got so excited. But we then headed into a new world. The world of agencies. In 18 months, we had around a hundred people come through my house. My girls were verbally abused, and Peter was physically and sexually abused. We went through another grueling court process to bring the sexual abuser to justice, but she got off on a technicality. That whole process was so traumatising for me. It was like I was the criminal. This woman wasn’t held accountable in any way, shape or form, and neither was the agency. That was it. No more. I had to take all my learnings and bring them together to provide a new model.
We weren't the only family going through this either. I knew there were others looking for the same as us, so I put together a business proposal to set up a programme bringing together everything I learnt from Te Aho Takitoru, my research and experience in hospital, at the rehab facility, and the agencies.
Ten years after Peter's accident, I set up What Ever It Takes, a home-based rehabilitation service.
STAGE FIVE
Doing Whatever It Takes
Our vision for our company was to set the standard internationally for how we care for families, regardless of their situation.
The biggest difference between a mainstream clinical approach and the Māori model we use, is we take into consideration all aspects of what’s going on in the whānau’s lives. A mainstream model looks at what's best for that injury in isolation. But that’s not reality for our families. We don't focus just on physical things like the brain or the spine. This person lives at home with a whole family, so we consider that whole picture. What help do they need to access their entitlements? What is the best wrap-around care that this particular family needs? How does the family operate? What are their dynamics? What are their values? What do they need to support them to live how they want to live?
We work mainly with Māori and Pacific Island whānau. They’re already compromised and they’re further compromised with this disability. I’m a supporter of whānau looking after whānau. I think if you want your whānau member to look after you, then let them look after you. There have been lots of debates about whether whānau members take advantage of the situation, but that’s really not my experience.
Our business model has allowed us to really flourish through the lockdown periods. We’re essential services, but we have a single team for each whānau we look after, so during lockdown we went right back to our aspirational goals and how we were going to do that within the confines of our four walls.
Each time my company gets audited, we receive continuous improvement on continuous improvement. That’s not just great, that’s exceptional in our sector. My goal is to create pathways for the future. I want us to be able to really pave the way for other organisations to come in and support families.
STAGE SIX
A deep breath
When my girls were at intermediate school, I realised that I had become so absorbed with what was going on for Peter that I was being counterproductive. That's when I started to think about my happiness. All they’d known their whole life was this environment of conflict where I'd been fighting for Peter. It was incredibly hard, but I moved out. It was the right thing for Peter to be able to work with his team from then on, and for our girls, and me.
My journey continues. It's been 18 years and time moves on. My father and my grandmother have passed away. My twins are leaving school.
I never thought that I’d meet somebody or fall in love, but I have. I’ve had feelings of guilt, but Peter and I were only young when this happened; he was 27. I’ve always committed to being married to Peter. But I got to a point where I thought, I don’t want to die wondering if there could have been more.
When we first met, Rob said to me, “I need to tell you something, I’m having a baby,” and I went, “Oh well, I’m married. I’ll have your baby if you have my husband.” And he goes, “Sweet.” So that’s been the basis of our family. We have five kids now with our big, beautiful, blended whānau. We have all this extended whānau on Rob’s side, and we have Peter and our extended whānau on my side, including Peter’s two sons Puna ma Faleasi and Siagogo.
It's unconventional, but it works because we make it work. I feel that’s probably my biggest learning: you just have to make things work.
No reira ngā mihi nui, ki a koutou. Mo te whakarongo mai ki ahau. Thank you for listening to me. Go home and tell the people that you love how much you love them. I’ve learnt how to care for my family and it's the pathway that I intend to to follow forever more.
What Ever It Takes
There's such determination in the name of Charmeyne Te Nana-Williams's business. And love, when you consider who the beneficiaries are of this determination. What Ever It Takes employs over 200 people across the North Island to deliver a programme of home-based care for people with severe and complex disabilities. What makes it different is the whanāu-centred approach. The family is involved in all aspects of the care, because Whatever It Takes looks at the needs of the whole family, rather than keeping the spotlight on just the injury.
This programme has been developed by Charmeyne and her team to give control, mana and quality of life to those suffering from and affected by major brain traumas and other life-changing disabilities. Their struggle to be allowed to take Peter home to care for him showed Charmeyne that there was a need for a different model of care.