Deb Cole had been finalising a big assignment the night before this Zoom interview, for the Masters thesis she’s completing at Unitec. Her topic: the intergenerational impact of FASD on whānau Māori. She's tired but happy. “I was so glad to get that over with,” she says, with a wide-eyed grin. “I felt like I should have been going out partying or something, but I just went straight to bed!”
Deb (Ngāti Terarawa, Ngāti Hine, Ngāti Kahu, Te Rarawa, Ngai Takoto) has a funky, energetic vibe. She is 67 – a mother of five children, and kuia / grandmother to twenty mokopuna. Deb has been caring for four of those mokopuna since they arrived on her doorstep, neglected and malnourished, around 20 years ago. They were aged 8 months, two, four and six.
“When I look back on that time, it was just crazy,” Deb recalls. “I already had two extra whānau I’d taken in who were in bad situations, and when my son arrived with his four, it brought the total to 15 – it was total chaos!” She begins to say more but gets a little teary: “If I’d known then what I know now... it was just the worst possible scenario for kids with FASD.” But somehow they got through it – a tribute to the strength of this whānau.
Like many caregivers, the eventual diagnosis of FASD for two of Deb’s moko has substantially changed the course of her life. Since then she has become an advocate, an academic and a charismatic public speaker.
She has taken on an under-educated health system in court and won, fighting hard for the rights of whānau to be expert FASD advocates for their own tamariki. But her passion has cost her dearly: in the course of the struggle, Deb has lost both her marriage and her house.
“My beautiful mokopuna’s issues started to become apparent around the age of three. She was showing behavioural problems at kohanga; she was very food-fixated at home and would steal food and hide it. I would say, looking back, that she was already self-harming – she’d regularly scratch her own skin until it bled.
Aroha (not her real name) was assessed in the mental health system early on, but FASD was not mentioned. Deb (mother of five, remember) was recommended to do some parenting classes and given behavioural charts to fill in. Nothing worked and things spiralled until at 13, Aroha had been excluded from school and was running away from home.
“We called Oranga Tamariki – they said they couldn’t help unless there was a clear risk of rape, pregnancy or violent crime,” says Deb. “We called the police; they could only log her as missing. Youth Services needed a referral from OT. On it went, until at age 15, she did commit a violent crime – and then, man – everyone arrived!”
In a Youth Justice facility in Christchurch, Aroha’s barrister insisted the teenager be assessed for Fetal Alcohol Spectrum Disorder. It was the first time Deb had heard of it. That was when Deb met Dr Valerie McGinn, who was assigned the role of forensic psychiatrist and who confirmed a diagnosis of FASD for Aroha.
This began a process for the teenager which has been ongoing – but sporadic – within the mental health system.
“She’d be in a youth facility and things would be going well. She’d come out – and boom, just like that, all support would stop. It was like, 'she's cured!'” says Deb, with grim irony.
Soon an ethical challenge presented itself. Back when Aroha was an adolescent of 13, her cousins had brought her to Deb and insisted that she should get a contraceptive implant for Aroha – they’d learnt about them at school. It went against the grain for Deb but she knew that if Aroha was sexually active, she’d never remember to take the pill, and an unwanted pregnancy would be terrible in her situation. She agreed.
Fast forward to age 16, and Aroha was in the school nurse’s office complaining of possible side-effects of the implant. The nurse suggested that if Aroha changed her contraception it may be better so, the same day – without talking to Aroha’s whānau – she took the teenager to a local Family Planning Clinic for a consultation.
Despite Deb’s attempts to explain about Aroha’s FASD diagnosis and her increasingly desperate requests for more time to discuss options with her, the nurse at Family Planning insisted that she had assessed Aroha, found her capable and had decided to let her go ahead – and since she was 16, Aroha could legally do what she wanted. The nurse took the implant out, discussed some alternative contraception and showed them out.
They had messed with the wrong Nana. Deb took Family Planning to the Nursing Council who referred it Health & Disability Commissioner. After three years of hell, the HDC found in favour of Deb and Family Planning was given three months to rewrite their kaupapa around listening to whānau. Click here to read the full report from the HDC.
Aroha is now 21. “Despite everything that’s happened to her, she’s remained beautiful, gregarious and positive,” says Deb. “However, she’s been sectioned twice under the Mental Health Act. She’s been raped, abducted and beaten up, lived on the streets and had substance use issues. She seems to be able to compartmentalise events and stay happy, but I know it will impact her as she gets older.”
In 2022, Aroha was in a mental health unit for 69 days. She had detoxed, was in a good place, and thinking of her future. “They were keeping Aroha in there while they were trying to find a transitional facility for her – but there was nothing out there except a drug and alcohol unit for mothers and daughters. We pleaded for them not to put her in there, but they did and she plummeted again. However, we’ve finally found a place for her in West Auckland,” says Deb. “She’s stable, but bored out of her mind. We need Navigators to sort out some creative mental health programmes for these rangatahi.”
There are so many ‘if’s.
If FASD was something everyone was aware of. If it was routinely screened for and picked up in early childhood so that crucial early intervention was able to be put in place to mitigate adverse outcomes in adolescent and teenage years. If our system wasn't geared to the ambulance at the bottom of the cliff. If schools and medical professionals would listen to the real experts about their tamariki – their whānau. If Youth Justice facilities and transitional housing were given higher priority, more funding and better mental health options.
As Deb says: “It can cost from $3K-$7K for an FASD diagnosis – but up to $200K annually to keep a young person in a YJ facility. Every study shows that outcomes are so much better if tamariki with FASD are diagnosed as early as six years old, and can stay at a non-violent home long-term – we just need the awareness, screening, early interventions and ongoing support to make that happen.”
Thanks to her lived experience, ongoing education and determined advocacy for her mokopuna, Deb is now consulted on FASD at a national level. Although, she says laughing, “I quite often feel like I’m in over my head – so I do a lot of listening!”
Deb is a member of two groups, both of which have a strong kaupapa Māori angle, but have different purposes. The first is Te Kahui Taurikura which was launched in June at a hui in Parliament hosted by Associate Minister of Health Willow-Jean Prime. This rōpū is the outcome of a claim brought under the Waitangi tribunal by Raawiri (David) Ratū to address the failure of the Crown to protect Māori communities from the harmful effects of alcohol (click here for more info on this claim).
The second is the Māori FASD Coalition (alongside FASD-CAN Board members Huriana McRoberts, Diana Kanawa and Gilbert Taurua plus Tania Henderson, Dr Andre McLachlan, and Dr Cherryl Smith) which is all about whānau, lived caregiver experience and working with FASD using te ao Māori mātauranga, including Te Whare o Oro approach (read more about this in these webinar notes from Dr Andre McLachlan).
Deb’s role in each of these groups can inform the other – the coalition’s lived experience is enormously helpful within the rōpū and the Māori coalition can stay informed of policy and strategies which are beginning to emerge out of high-level hui. There are other recent signs of positive movement towards FASD-informed collaborations too, including a recent $1.4M funding injection targeted to FASD support for whānau from Te Aka Whai Ora, the Māori Health Authority.
For Deb, responding to FASD from te ao Māori perspective is about enabling whānau and community to wrap around the tamariki or rangatahi – it's all about inclusion.
“I’ve researched stories of how disability generally was handled in pre-European times and have been unable to find any,” says Deb. “Kaumātua kuia who I talk with say that if there are no stories it’s because disability was not an aspect of a person that set them apart nor gave excuse for exclusion – rather disability must have simply been part of the community – not seen as ‘other’.”
“I read a wonderful piece of research recently – it was part of the Banksia Hill Detention Centre Project [the first study in Australia to assess and diagnose young people in a youth custodial facility in Western Australia for FASD]. There were interviews with parents and caregivers of the young people in the study and looked at how people hear diagnosis when it’s communicated to them – from an Aboriginal and non-Aboriginal perspective. Post-diagnosis, the indigenous participants were immediately focused on ‘how are we going to make this fit within and support our community’ and the others wanted to know what the professionals were going to do about it – how they would fix it.”
“About 90% of grandparents raising grandchildren are women, so a large part of my thesis is about kuia, grandmothers, who are raising, or have raised mokopuna who live with FASD. There is a paucity of indigenous-led and indigenous-informed research in the FASD space. For me, the voice of our kuia is silent. I want to hear from our kuia about what they understand as health. We need to ask those living in communities what they see as the need, not tell them what we think is the need. It’s not a new idea but from my point of view we really need to be supporting communities in this work.”
“I am drawn to the conclusion that kuia are left to deal with the outcome of one of colonisation’s most devastating tools, alcohol. In terms of leadership and healing, it seems as if kuia are taking on the very hardest of roles, caring for those who are possibly the most damaged by intergenerational trauma in an environment of government-perpetuated ignorance that leaves kuia and whānau without resources or support.”
We will keep in touch with Deb regarding the outcome of her work and keep you posted!
Our friends at Grandparents Raising Grandchildren (GRG) have lots of information and help available including types of financial support you may be eligible for, and grandparent carer support groups all over the country.
