We deserve more than the bare minimum. Some of us don't even get that

Warning: Story discusses death and infanticide

Every now and then, a story hits the headlines that just feels too difficult to open, let alone read.

Over the last few weeks, many of us at The D*List couldn’t ignore Tūwharetoa’s story. He had cerebral palsy and died at only 19 months old. His cause of death was complications from starvation and dehydration.

Tūwharetoa’s death is not an isolated case when it comes to disabled people dying from avoidable deaths due to a lack of support from the systems we exist in.

In 2013, Nicholas Owen died at an Auckland residential care facility. His family believe his death was preventable.

In 2015, Bruce Rangitutia, who had cerebral palsy and an intellectual disability, died from starvation while under the care of his brother.

In 2018, an intellectually disabled man choked to death while staying at an IHC care home.

In all these cases, the person didn’t just die of natural causes. It was a lack of care and support for them and their whānau that led to their death.

The news coverage of Tūwharetoa’s death focused on what went wrong and the attempts from medical professionals to support him.

In the court’s agreed summary of facts, the medical care he was offered was extensive: feeding training sessions, homecare nurses, a dietician, a speech and language therapist, a neurodevelopmental therapist, and appointments to see the neurosurgical clinic, the neonatal clinic and an ophthalmologist.

But none of those medical interventions were supported by care and aroha for Tūwharetoa’s most critical support network – his whānau. It makes you wonder if disabled people and their whānau require more than just medical interventions to thrive.

It’s widely known that the health system is not fit for purpose for our most vulnerable communities, especially disabled, Māori and Pasifika communities. Research shows that Māori patients and whānau face many barriers to accessing healthcare, with a recent study stating: “For many Māori, the existing public health system is experienced as hostile and alienating. Whānau members provide support to mitigate this, but it comes as a cost to whānau.”

Poverty adds an additional strain when the system is not designed to meet your needs. Healthy food is not going to make it to the table in a cost of living crisis. And if you don’t have transport, how are you to get to medical appointments even if you want to?

While a long list of appointments in a court’s agreed summary of facts might indicate medical attention, how about disability confidence training throughout our systems to ensure care is delivered in a way that makes sense for us?

If every disabled person and their whānau had their hopes, dreams and aspirations listened to, cared for and followed through on, then these horrific news stories might never have been written.

None of us can control the circumstances we are born into, but if we invest in care and aroha – not just medical interventions – then all disabled people have a shot at a good life.

We should be sad. We should be angry. We should have rage. The health and welfare systems must do better at protecting disabled people, otherwise we will continue to die.