An existence denied
The family of a man living with fetal alcohol spectrum disorder wants New Zealand to face the music and give him the help – and lifestyle – he needs. Matthew Rosenberg reports.
Tamaki’s fingers glide over the keys of the piano, filling a once silent room with melodies never heard before. His painted nails dance up and down as he closes his eyes and enters another world. Swaying gently back and forth, he plays by instinct with no sheet music and no knowledge of what a chord is. He’s never had a lesson in his life.
The music he creates sounds like something out of a concert hall, made all the more eloquent by the fact it’s all made up on the spot. But, it’s a mask. The man lost in the beauty he’s creating has lived a painful and difficult life.
Tamaki has fetal alcohol spectrum disorder (FASD) an incurable syndrome transmitted during pregnancy when alcohol from the mother’s bloodstream reaches the developing fetus. Behind Tamaki’s flawless notes is someone with the mental capacity of a 10-year-old, someone with a sadness in his eyes. Perhaps that’s why he closes them when he plays.
He’s part of a toxic legacy of young people in New Zealand slipping through the cracks of both the health and justice system. A legacy that is hard to calculate because of a lack of data about just how many people live with the condition. Tamaki’s foster dad says he’s an inconvenient truth, ignored by government. Tamaki’s foster mum says he’s never received the support he should have. Both agree it’s time to face the music.
‘‘Inequality, that’s what’s been given to the likes of Tamaki,’’ foster dad Peter Wilcox says. The Whangarei-based fish farmer doesn’t mince his words. He and wife Rita know Tamaki better than most, having been a big part of his life ever since the 24-year-old arrived at their home on his first birthday.
Both Peter and his wife Rita prefer not to talk about the circumstances that led to Tamaki entering the foster care system, but say his biological parents had their fair share of difficulties.
‘‘The system would like to deny that people with FASD exist because they’re seen as a huge cost burden,’’ Peter says. ‘‘What we’re not taking into account is the cost on society.’’
People with the disorder are often typified by a low birth weight, distinctive facial features, including a thin upper lip and upturned nose, and heart defects.
But over time, other issues come to the fore such as an increased risk of child abuse, poor education outcomes, developing mental health issues, substance abuse, and benefit dependency. Contact with the justice system is also common as they get older. Dr Valerie McGinn is a paediatric neuropsychologist who has spent the past 10 years researching the disorder and she believes thousands of people are being let down through lack of support. Just how many, it’s hard to know, because the Ministry of Health can only estimate around 46,000 people live with the condition and puts the cost to government at a ‘‘very conservative’’ figure of at least $450 million a year.
McGinn says Canada is the world leader in treatment and has been making strides in recent
years to better understand the condition and manage it appropriately. If a recent Canadian study is anything to go by, there’s a good chance four per cent of New Zealand’s population could be living with the condition – or 190,000 people.
Before government nails down the numbers, McGinn says there’s something more pressing to be done – change the disability criteria so people with FASD, like any other disability, qualify for disability services.
If you’re diagnosed with similar conditions like autism or Down syndrome you have access to those services, but people with FASD are excluded, she says. ‘‘It’s inhumane, it’s uncivilised, and it doesn’t make sense.’’
Under the current funding system, sufferers qualify for disability services only if they have a co-occurring disability which is eligible. If their IQ is under a certain level, that can be another way in but McGinn says only about 20 per cent of the FASD population qualify.
The rest are left to fend for themselves, as the Wilcox family can attest.
If Tamaki’s IQ was less than 70, he would qualify for funding, but he’s had two tests and both returned results that were just a few points over.
As a result, 24 years of unpaid support has been required for a young man who, through no fault of his own, struggles to do things like have breakfast or shower.
That inability to implement routine and foresee consequences is intrinsically linked to the disorder. In the best case scenario, it might mean Tamaki forgets to brush his teeth for a few days. But in the worst, it could land him on the wrong side of the law, as it did in 2012.
As Tamaki stood in the carpark of the mental health unit where he was staying, handcuffed and surrounded by police officers, he wondered what he’d done wrong.
Just minutes earlier, he’d walked outside with cigarettes in hand, ready to light up. An idea had popped into his head: why not light a small fire in the metal container next to him?
Tamaki was nearing the end of his stay, so figured this would allow him to say goodbye to his friend who’d been moved to a high-risk ward. In his mind, the plan would go something like this: create enough smoke to trigger a fire alarm so everyone in the hospital would be forced to meet in the car park. The plan went like clockwork, as did the law’s response. Sirens. Charges. Prison.
Looking back, Tamaki understands that lighting a fire wasn’t the best way to go about seeing his friend. But in the moment, he struggled to foresee the consequences of his actions. In 2012 he pleaded guilty to one charge of arson endangering life, and one charge of wilful damage. He was sentenced to six months jail.
For McGinn, locking up people with the disorder will never be a solution. In 2015 she was instrumental in clearing Teina Pora’s name when she diagnosed him with FASD. Pora spent 21 years in prison for the 1992 murder of Susan Burdett after he implicated himself by giving false information to police. Later, it was revealed he had nothing to do with her death and had given false evidence in a misguided attempt to claim a $50,000 reward.
Burdett’s rapist, and accused killer, Malcolm Rewa, is on trial for the third time for her murder.
Jonathan Krebs was Pora’s lead counsel at the 2015 Privy Council hearing that led to his release and says people living with FASD are ‘‘compromised everywhere they go’’ within the justice system.
‘‘They make decisions which are ill-advised in day-to-day life simply because of the brain-based disability they have and sometimes those bad decisions result in them committing offences.
‘‘The conditioning brought them into the criminal justice system. Once they’re in there, the manner in which they handle or conduct themselves is also compromised.’’
Krebs believes there needs to be greater awareness amongst police to look out for people with neurological disorders.
Although conditions like FASD aren’t always apparent, clues can appear when people give irrational answers, and it was a detail they should be aware of.
When McGinn diagnosed Pora, it was a major win for those fighting on his behalf for justice. But it also begged the question, how many other people with the same condition have ended up behind bars because of their inability to foresee consequence? In prison, Tamaki likely joined a long list of people with FASD who have ended up on the wrong side of the law. A 2013-2016 Canadian study found at least 25 per cent of their prison population have FASD, but figures for New Zealand – as with those for the general population – remain elusive.
For McGinn, a safety net at the top of the cliff is the only way forward. ‘‘Everyone who’s diagnosed with FASD has severe problems but there’s a lot they can do if well-supported,’’ she says.
‘‘You need to put things in place so that they can do better. There’s no point punishing someone for their disability.’’
Fast forward six years from 2012 and Tamaki has been passed between mental health hospitals, care homes and rehab centres. None have suited his needs, Peter Willcox says, because what he requires is full time supported living.
‘‘You need to put things in place so that they can do better. There’s no point punishing someone for their disability.’’ – Dr Valerie McGinn
On a Thursday afternoon in November last year, Peter and Rita picked up Tamaki from the mental health ward he was staying at in Auckland to ‘‘satisfy one of his addictions’’; McDonald’s.
Tamaki was quiet, more preoccupied with putting away two Big Mac combos than making conversation. After a while, he began to open up, and talked openly about his life. ‘‘I’ve been selfharming since I was a little kid.’’ At the table next
to him, groups of children laughed and talked loudly over after-school treats.
Almost drowning out the softly spoken 24-yearold, they represent something he never felt part of. ‘‘It doesn’t matter where I am, it doesn’t feel like I belong in a group.’’
Leaning over, Rita gave him a gentle rub on the back. ‘‘You’ll get there again, you’ll feel like you’ll belong again.’’
It’s difficult for both Peter and Rita to see Tamaki struggling, not just because it’s hard for him, but because they understand his potential better than most. In his formative years, he had a difficult time at school because of bullying and the pressure of teacher and academic expectations. But in the holidays he’d come alive, joking around and being a ‘‘normal’’ kid.
Then as a teenager, he tapped into his incredible gift for playing the piano. On this particular day, Tamaki had some good news to go with his fries; funding has come through from the Ministry of Health for him to stay in a 24-hour supported living environment on Auckland’s North Shore for six months.
He said then, that it was the only place he felt like he belonged.
Both parents say it’s exactly what he needs and hope it can set a precedent for the type of support people with the same disorder can get in New Zealand. For those skeptical about the cost, Peter points out they’re already racking up big bills on the justice system and mental health sector.
What’s more, he believes society has a responsibility to support people with FASD.
‘‘They don’t ask to be born with the disability and the mothers, either out of ignorance or selfmedication to cope with life, cause the problem. It is a societal problem and therefore society should pitch in to help, not reject, revictimise or ignore them.’’
But two weeks ago, that hope was suddenly dashed for Peter and Rita. Tamaki had moved into the support house, but made an attempt at his own life. He’s now back in hospital, and neither parent hold out much hope he’ll be allowed back to where he was staying.
‘‘It might just be that he’s really given up,’’ an emotional Rita says.
‘‘He’s had years of being institutionalised with no job, no prospects, no progress in life.’’
She’s angry the little support he has received has been so hard to get, and doesn’t know where to turn next for the young man.
‘‘Everything that’s been tried hasn’t worked. Help has come too late.’’
Deep down, Rita believes there are more songs in her son yet.
She just hopes the help can arrive before his final note rings out.