Love, loss & changing the law
Steve Braunias
Tim Fairhall is 16 years old in the summer of 1995 and at home on Auckland’s North Shore with his older brother Scott. Their mother, Joan, has asked Scott to look after him, and also to run an errand at the local shops. The two brothers leave the house on foot. It will only take five minutes.
They live in Mairangi Bay, that cheerful little seaside village with a Norfolk pine standing guard in a traffic island at the village shops. It’s a lovely day and the sky is as blue as the bay that combs the shore.
Scott and Tim make their way towards the pine tree but they don’t get very far before a woman walks up to Tim and says, “Hi, Tim! How are you?” She is really delighted to see him, actually kind of thrilled, and so is a man who walks up to Tim two minutes later and says, “Well, if it isn’t Tim! How’s it going?” It happens again two or three minutes later, and again, and again — maybe 15, 20 people mob Tim Fairhall, while Scott, who will later become a cognitive neuroscientist (his published works include Brain Regions That Represent Amodal Conceptual Knowledge) is left to stand to one side, and marvel at his younger brother.
The errand took 40 minutes.
HE HAS green eyes and a dazzling smile. I see Tim all the time — we both live in Te Atatu¯ — and have wanted to meet him for ages. His newfound fame as a kind of political activist who fought the law, and the law lost, finally allowed an opportunity.
He’s as popular in West Auckland as he was growing up on the Shore. He kind of stands out. I tried talking to him once, a few years ago on the 131 bus, but he got very shy, and muttered something about not talking to strangers; he got off at the next stop. The thought that I might have upset him made me feel like a low-down dog but when I told Tim this story, he was aghast, and threw his arms around me.
Well, that’s Tim. “He always wants to — he just wants to give, he just wants to make people happy,” said Thomas Herzog, Tim’s best friend. “I never met a person like Tim. He just has such a good heart. He wants to please everybody and he always puts himself last.”
They met when he was employed by the Kotuku Trust as Tim’s support worker. The trust provides independent housing in West Auckland for 58 people with special needs. He said, “Tim and I became close. He got really attached to me and was like a brother to me. He can make me laugh. He has a great sense of humour. He was the sweetest, most polite and friendly person I ever met.”
His English, spoken with a strong German accent, was very formal; it was as though his sole concern when he talked was to make simple and accurate statements. He said, “I understand the term Down syndrome but to me it doesn’t matter. Tim is a human being like everybody else. Only because there’s an extra chromosome it doesn’t mean he’s a different human being . . . He has given me much joy.”
He worked with Tim for nine years and left New Zealand to emigrate to Canada five years ago. “Tim didn’t want me to leave. It was a very tough situation for him. But he understood.” Tim visited him a few years ago, and presented Thomas with a greenstone to match his own, as a symbol of enduring friendship and love. “I am wearing it now. Always.”
I asked Tim about Thomas, and he said, “I miss him so much. He said goodbye to me and I was crying. He supports me in my life. I love the way he jokes with me. We have fun together. Thomas is special. He’s so special.” Tim talks a lot. The guy is a chatterbox, and speaks with actually a very similar kind of purpose as Thomas — he only ever said things that he meant sincerely. But this is to simplify Tim. I simplified him something wicked when I first met him; I saw Tim in the same preconceived and ill-formed way I saw all people with Down syndrome, as innocents without guile, without cunning, absent of whatever other games people play in their heads to get into the heads of others; really, I was seeing Down people as noble savages.
I put my worthless theory of Down syndrome people existing in a state of heterogeneous guilelessness to Scott Fairhall. He was very polite about it. He said, “Hmm.”
He thought for a second, and then he said, “Some of the bigger drama I ever experienced was when my mum was away, when I was probably in my early 20s and looking after my brother, and I would get calls from different Down kids who were having these incredible soap opera dramas with one another.
“At the same time they’re friendly and lovely people, they also have their dramas. They also play their games. They’re not without guile. They’re very cunning, social animals. I think Tim is less so than most. Tim was quite puritanical actually; I don’t know where he gets that from. But I remember some crazy stories. People trying to steal other people’s boyfriends and hopping in the shower with them and this kind of stuff like that. Very, very weird sorts of conversations to have when you’re 22 years old with a Downs kid.”
Still, it’s fair and not at all over the top to describe Tim as a beautiful soul. To spend time with him is to fall in love with him. No one is all heart; that rather cuts out a lot of other qualities, and Tim, for example, is very funny, a quick thinker, and quite charismatic. But it’s true that he has a habit of getting to the heart of things.
The very first thing he said when I asked him about Thomas was, “I love Thomas.” I mentioned his brother Scott, and he said immediately, “I love Scott.” He misses both of them terribly — Scott works at the Centre for Mind/Brain Sciences at the University of Trento, in northern Italy — and in fact his desire to see them was behind his amazing mission to change the law.
Tim and his mother, Joan, appeared before a parliamentary select committee in 2018. They wanted the Government to allow anyone with a life-shortening condition to access their KiwiSaver funds before they turn 65. It was a hard-fought battle. Joan Fairhall waged it, driven by her belief that the law was an ass. The life expectancy for people with Down syndrome averages in the mid to late 50s. Tim works two days a week at Countdown in Te Atatu¯ and has salted away about $18,000 in KiwiSaver. It would go to waste under the KiwiSaver regulations that the money is tied up until the retirement age of 65.
The Government acted. In March, people with the four most common genetic life-shortening conditions — Down syndrome, cerebral palsy, Huntington’s disease and fetal alcohol spectrum disorder — were granted the right to automatically withdraw their KiwiSaver early.
It should be known as Tim’s Law. He said, “I wanted to do it because I wanted to change the law. People with Down won’t live much longer and are dying at 57 but the KiwiSaver wasn’t fair because I want to do something that I like, to see my family and friends. I want to do what I want to do.”
He wants to use his savings to travel to see Scott and Thomas — while he still can. Premature ageing is a characteristic of Down syndrome. Joan said, “He’s slowed down a little bit. Not quite so keen to be out there. If you say to him, ‘Do you want to go to the beach?’, he’ll say, ‘I suppose so,’ rather than ‘Ooh yeah!’ like he used to. He’s equivalent now I guess to someone in their 50s.”
I asked him how much longer he thought he could keep working at Countdown. He said, “I will retire when I’m 65. So around there.”
Joan said, “Well — it’s an unknown. You’ll probably know when it’s time to stop.”
I asked Tim how he was feeling these days. “I feel fantastic. Yeah,” he said, and there was no reason to doubt him.
TIM FAIRHALL is born on June 4, 1979 in Worcester as the third son of Sam and Joan, Kiwis who lived abroad, in England and later Dubai.
His condition is totally unexpected.
Asked in 2021 what she would have done if she’d had pre-natal screening that confirmed her son would be born with Down syndrome, Joan said, “We had a good family. My two sons were bright guys who were going to conquer the world, and if I realised we were going to have an intellectually disabled baby then I’d have been, ‘No. That’s just not practical.’ It would have got in the way. It would have been a difficult decision, but the sensible thing.
“Everything indicated it would not be a good thing. And thank God I didn’t, because we wouldn’t have had Tim, and Tim has expanded the lives of all of us and brought an awful lot of joy . . . I think most women will tell you one of the first things they’ll say when a baby is born is, ‘Is everything all right?’ They worry that not everything will be perfect. It took me a little while to realise that Tim is actually perfect.”
Whenever I see Tim at the Countdown supermarket in Te Atatu¯, he’s working like a demon. He does four-hour shifts, two days a week. He has strong shoulders — a former competitive swimmer, he won gold in the butterfly event at the 2007 Special Olympics in Shanghai — and is forever charging around the carpark with a long line of trolleys. “Yeah, that’s Tim,” said supermarket manager Zoe Williams. “Hard worker and selfaware.
“He’s always asking for feedback. I’ve had to tell him a couple of times to stop touching other people’s babies, that you have to ask permission. I remember he went up to a newborn and kissed the baby and the mother rung me up. But that’s just who Tim is. That’s his heart. That happened four years ago and it’s still with him. He’s almost obsessive when he does something wrong and will try to correct it.”
She talked about how he always says a few words at staff farewells
...the KiwiSaver wasn’t fair because I want to do something that I like, to see my family and friends. I want to do what I want to do.
Tim Fairhall
(“He’ll pinpoint something about that person that he loves.”) and is always there to listen (“He’s a strong empath. If you’ve got something going on, he wants to know all about it and will tell you 100 times how much he’s there for you.”).
He gives her loyalty cards from Fuze cafe across the road. He makes his way to and from work on the 131 bus; home is a brick bungalow in a cul-de-sac, administered by the Kotuku Trust. A support worker drops in during the late afternoon for a few hours, then leaves Tim and his two flatmates to it.
He likes to draw; he has a vast collection of adult colouring-in books, and stacks of fine-nibbed felts. He likes to watch films on DVD; his favourites include Harry Potter, High School Musical, and Grease. He’s a great fan of Shortland Street: “Always will be.”
In fact, he once acted on the show, playing a character called Lance Matheson, and has also appeared on Hercules and Xena. Every now and then he pops up on The Project, warming up the audience at the end of the ad breaks. “You haven’t told Steve you want to be an actor,” Joan said to him. “He should know that about you.” He turned to me, and said, “Oh you do now.”
His brother Scott said from Italy, “I was thinking about our interview before you called and I thought you might ask me, ‘What were the challenges of growing up with Tim?’ And I had nothing, right. There were no difficulties. He was such a bubbly and happy kid. Like exceptionally so. He was loved by everyone. I never noticed — like there was no moment that I realised my brother was different. It never seemed unusual, never seemed strange. I just had this more happy than normal younger brother.”
“Exuberant,” said Stuart Spackman, general manager at Kotuku Trust, when I asked him for his first impression of Tim. The trust’s operations manager, Carissa Lee Pereira: “Eager to please.”
We met at the trust offices on Lincoln Rd. Spackman bought three enormous savoury muffins to eat while we discussed their celebrated client. They’ve known Tim since he moved out of home at 24 to live independently with the trust’s support. Essentially the trust’s role is to keep an eye on him, and that includes an annual baseline screening test for dementia.
Statistically, people with Down are at greater risk of early onset dementia. The trust has recently placed two men in their 40s into aged care; one was a good friend of Tim’s.
Pereira said, “We canvassed lots of rest homes in Auckland and I left most of them in tears, and needing a shower because of the stench of urine. They were pretty terrible and even the places we thought were okay said, ‘Oh we don’t know if we could have someone here with an intellectual disability.’”
Both men were eventually housed at Kumeu¯ Gardens.
One struggles to walk. “The other gentleman is really engaged and feeds the pigs, and thinks he’s a staff member there. He used to believe he was a travel agent.” Spackman laughed, and told the story of how that man secretly bought a plane ticket to Sydney, and slipped away from his support worker to catch a taxi to Auckland international airport: “He was off to see his uncle. He arrived there totally believing his uncle, who knew nothing about this, would pick him up. The authorities found him sitting in the arrivals lounge just waiting for his uncle. They put him on the next plane back.”
In any case, Tim showed no sign of dementia in his most recent test. His health is good. He works, he draws, he loves ten pin bowling; Tim, as ever, was able to give a neat summary of the way things are: “I lead quite a busy life,” he said. “My mum and dad love me.”
But very early into the interview he was in tears. Sometimes the grief is too much for him to bear.
TIM IS 33 years old in the winter of 2014 and his mother, Joan, is walking with him to their car parked outside a large white home in St Marys Bay overlooking the Waitemata¯ Harbour. She puts her arm around him. He looks up at her and says, “I’m losing her, aren’t I, Mum.”
Rebecca Everard was born on August 17, 1982, premature at 29 weeks. Her parents were Trish Everard and her husband, Barrie Everard, a well-known, white-haired bon vivant and movie entrepreneur who was appointed head of the New Zealand Film Commission.
Trish said, “It wasn’t until a couple of days after I gave birth, when my eldest daughter [Cara] came in to see Becky in the incubator, and I saw her at an angle and that’s when I saw the Down features. So that was a shock. It was a shock. But Barrie took me aside, and said, ‘Hold yourself together. Don’t show your emotions in front of Cara. She sees her as just a baby.’ So it really made me arrest my emotions. I had to clamp down my emotions. Barrie said, ‘She’s ours, and that’s it, and we’ll just deal with it.’
“And we did. And she was a pleasure. She was a great pleasure in our lives. She gave us so many laughs, she was such a cute little blond-haired kid, so outgoing — she used to walk up to people in restaurants and sit down with them if they had kids, and eat with them. She was so cute. Nothing to not love about her. I mean she was loveable.”
Tim and Rebecca met each other at swimming. They became good friends and fell in love. Trish said, “Tim cared a great deal about Rebecca. Tremendous amount about
Rebecca. He really loved her. He did. He was extremely fond of her. He was. She could do no wrong. They never argued. I never heard them argue once. I used to drive them back and forth from swimming, and one night it was pouring with rain, and Tim was sitting in the back, and telling his funny jokes and carry-on, and I was getting tense about driving and Becky turned around and said, ‘Tim. It’s dark, and raining, and Mum needs to concentrate. You need to stop now.’ That was the strongest thing I’d ever heard her say to him.”
Rebecca attended Auckland Girls’ Grammar in Year 13. She won gold and silver in swimming at the 2003 Special Olympics in Dublin. She worked three days a week as a resource assistant at Henderson Primary School. She lived independently through the Kotuku Trust.
Carissa Lee Pereira: “She was a socialite.”
Stuart Spackman: “She was delightful. Very bubbly.”
She and Tim loved to sit and write stories together, long adventures in exercise books. Tim solemnly asked Barrie for his daughter’s hand.
They were married on November 17, 2012 at a lavish ceremony held at the Kumeu¯ Valley Estate.
Paul Smit, Rebecca’s godfather, acted as MC. We met at the restaurant he owns, Swashbucklers at Westhaven marina, where he fed five tame stingray off the wharf with buckets of fish.
He said, “It was probably the best wedding I’ve ever been to. Sir Bob Harvey was there, Sir Rob Fenwick, all sorts of bloody people, and the vibe was so good. Becky and Tim were absolutely in love. If ever there was a love story, it was those two. The way the two of them looked at each other — they were absolutely head over heels in love with each other.”
They moved into an apartment in Te Atatu¯ as man and wife.
“If you were ever lucky enough to be invited to Tim and Rebecca’s for dinner,” said Carissa Lee Pereira, “you always left feeling really jolly good about yourself. The evening would be filled with wonderful compliments. They were both like that. So happy and giving.”
Trish Everard said, “And then about four months after the wedding it all fell apart.”
They were together for 19 months. Becky was diagnosed with cancer and taken home. Paul Smit described how her bedroom had been designed to look like a hospital set from Shortland Street.
Pereira: “It was heartbreaking for Tim. And it was even harder in the sense she spent a lot of that hospice care-style at home with her family. And so suddenly Rebecca wasn’t there with him. She was alive but she was very ill and I think he found that quite — he wasn’t shut out, but there was less direct contact.”
Spackman: “He was stoic that she was going to get better. He was a bit disconnected to the reality of her illness.”
She died on June 4, 2014. Tim was widowed on his 39th birthday. He spoke at the funeral, and thanked everybody for what they had done for his wife.
His brother Scott Fairhall said, “When you think about his life, right, he’s had an incredibly full life. Like fuller than my life in many ways. Becky was a wonderful lady. She was just delightful.
“Losing her to cancer was a hell of an experience for Tim. I couldn’t imagine dealing with that while being Down. I know Tim very well but I don’t know how that must have been for him.
“He was lost, right. No one knows how to act in that situation and he was very much the same. He had forewarning. But it was hard. It would have been incredibly challenging. It took him years to move on from that. Given the slightest moment of thought, or quiet time, he would — Tim was a mess. It was very much on his mind every day for at least two years. It lasted for years afterwards, probably still today, but I think he hides it.”
Trish Everard hasn’t kept in touch with the Fairhalls. (“Jane was fantastic to Rebecca. Jane? . . . Right. Joan.”) Life and death were too much: her husband, Barrie, was diagnosed with progressive supranuclear palsy while Becky was sick. Like his daughter, he died at home, in their big white house in St Marys Bay. Trish’s habit was to repeat things when she spoke; it made them sound doubly true. She said, “Tim is a cool guy. A very cool guy. He’s a good kid. I wonder if there’s something empty in his life with Becky gone. It’s sad. It’s sad.”
Zoe Williams, at Countdown, met Tim after Becky had died. She said, “It was one of the very first conversations we had. He told me he was married and lost his wife. But he talks about her a lot less nowadays, which is good. It’s healing. He still has days like their anniversary where he gets upset. But he gets on with it.”
Clarissa Lee Pereira, from the Kotuku Trust: “For a while after her death Tim would introduce himself to strangers and say, ‘Hello I’m Tim and my wife died.’ He very much had an identity as a married person and then he had an identity as a widower. But he’s shifted on from that and is now Tim, working man, champion for KiwiSaver.”
Tim, as ever, provided a neat summary of events. Minutes after we met, he said, “I got married. I was very happy. I had a wife who loved me. Then something bad happened, and she died of cancer. And I know I suffered a lot. But I got help from my mum and dad, and people from the trust. ” He looked over at Joan. “Thank you, Mum,” he said.
If ever there was a love story, it was those two . . . they were absolutely head over heels in love with each other.
Paul Smit, Rebecca’s godfather
TIM FAIRHALL is 42 years old in the winter of 2021 and on Tuesday morning this week he walked around the corner from his house to One Sip Coffee.
He ordered a flat white. We talked about grief but we also talked about fish, and games, and drawing, and the stories he used to write with his wife. He was in good spirits, made jokes, chatted, listened closely, and sometimes he wept.
I said about loss, “What can you do?” He spread his hands to indicate the two of us sitting in the cafe, and said, “This.”
We hugged goodbye. He needed to keep his weekly appointment with music therapy. He walked down the street, a small, brave figure in a powder-blue hoodie, making his own way in the world.