Awhina Hollis-English and her children. Photo / Supplied
Awhina Hollis-English and her children. Photo / Supplied
Kaupapa Māori social work expert and lived experience advocate Awhina Hollis-English says Māori living with rare disorders face inequity upon inequity in the health system.
Awhina’s second child Ramari was born with multiple medical complications after contracting cytomegalovirus (CMV) while Awhina was pregnant.
Awhina (Ngāti Porou, Kahungunu ki Wairoa, Te-Whānau-ā-Apanui, Whakatōhea) has a background as a Massey University lecturer in social work, with a focus on kaupapa Māori. When her daughter was born, Awhina said she had to put her theory into practice.
“My whole personal career has been around Māori social work and Māori wellbeing. I used to teach a lot about it, and then when I had my daughter, suddenly I was on the other side of receiving services and trying to access what we needed,” Awhina said.
“That’s given me this view of social services in a completely different way, and particularly [how those services support] Māori whānau.”
Awhina Hollis-English and her children - including daughter Rāmiri, who lives with a rare disorder.
As a result of colonisation and negative experiences with institutions and health systems, Awhina said that accessing services is hard enough for whānau Māori, let alone with the added complications of a rare disorder.
“Quite often, whānau with a rare disorder will be misdiagnosed or misunderstood for a long time. Sometimes alongside that, there’s also layers of mistrust and cultural misunderstandings that can really put you on the back foot.”
Unlike most OECD countries, New Zealand doesn’t have a national strategy for rare disorders. Rare Disorders New Zealand CEO Michelle Arrowsmith said in a statement that for policymakers, Rare Disorders Month is about doing right by Rare and following through on a commitment to create constitutional change by developing a rare disorders strategy.
Awhina feels strongly that a kaupapa Māori approach would be beneficial to this strategy.
“Often for Māori, for many families, the rare disorder is in the whole whānau. It’s a whakapapa thing. So if we don’t acknowledge whakapapa, there will be lots of people in the whānau who are misdiagnosed or overlooked.
“There’s also a real shortage of Māori healthcare workers, like Māori paediatricians. It really makes a difference to people’s lives when there’s someone they can relate to and see themselves in [who] can understand their cultural needs.”
Awhina’s daughter Ramari was diagnosed with CMV when Awhina was 20 weeks pregnant. CMV can cause a wide range of health outcomes, and there’s no way of knowing until birth how the child will be affected.
“Cerebral palsy is what my daughter has, and epilepsy. We are lucky she survived the birth. She has quadriplegia and is in a wheelchair, and all four limbs are affected by cerebral palsy and she’s non-verbal,” Awhina said.
“Ramari is funny, cheeky, and heaps of fun. She’s lovely.”
Rare Disorders Month is an advocacy and support period for the more than 300,000 New Zealanders like Ramari who live with one of 6,000-plus rare disorders.
More information and comprehensive guides detailing how to #GlowUpShowUp for Rare Disorders Month are available for schools, support groups, workplaces, individuals, and community groups at raredisorders.org.nz.
