The stories of violence and neglect suffered by disabled people in state care are hard to comprehend. But it’d be a mistake to presume they’re entirely consigned to the past, writes Robyn Hunt.

When Kimberley, the last of the large psychopedic institutions, closed in 2006, most people wouldn’t have noticed, but disabled people celebrated. That Levin establishment, and others, were places of cruelty and lifetime incarceration. They were largely unaccountable – out of sight, out of mind.

The recent Deaf, disability and mental health hearings of the Inquiry into Abuse in State and Faith-based Care have been covered in the media, and are available on the inquiry’s website. Those who appeared before the inquiry to relive their experiences described a terrible history. Their courage, dignity, humanity – despite the ways they were dehumanised – and their steadfast desire for change was impressive.

I listened to the hearings. Several people told me they couldn’t bear to listen, but I wanted to stand with those who bravely told of lives of abuse, neglect, violence, torture and deprivation of the worst kind. Some wept as they relived the pain of their treatment as small children taken from or given up by their families. I did too. I knew some of these stories, and I knew some of the people. If they could tell it, the least I could do was listen.

Change can’t be left to the inquiry alone. This is history that we as a nation have to confront, in the same way we confront our colonial history. The two are linked, though this shameful connection has been wilfully ignored.

Nor should we accept the ineffectual hand wringing when the occasional new story of familial or institutional abuse, or even deaths of disabled people, are revealed in the media then quickly forgotten. The abuse still happens where conditions occur to encourage it.

Understanding the historical and social forces involved is helpful. In colonial societies those who were unable to work physically hard – breaking in the land, building homes and establishing businesses – were not welcome. That exclusion continues in today’s immigration policy, where disabled people are considered a cost burden on society. Even being born here won’t protect disabled children of migrants from deportation.

Māori disability is not my story to tell. But Māori disabled people became subject to the same conditions as other disabled people over time, with the additional consequences of loss of culture, language and connection, a very particular and terrible kind of abuse. This too was described to the inquiry.

Deaf students were denied Sign Language, punished for its use, poorly educated and suffered abuse. Blind children were also sometimes treated badly.

Prejudice against disabled people is deep-seated in our dominant Christian cultural history. Disabled lives have been used as “teachable moments”, as the objects of charity with expectations of gratitude and obedience. Cures are always the ideal, even though impossible for many. High art and popular culture alike have used disability to signify “otherness”, weakness and evil. Some disabled people have been perceived to have special powers, others have been exploited in freak shows. In some cultures the occurrence of disability is still seen as divine punishment, and a source of familial shame. A friend with MS was told by a work colleague: “you must have done something bad to deserve this”.

New Zealand narrowly avoided the misguided eugenics laws of the early 20th century that claimed to perfect humanity through genetics and the “science” of inheritance. Nonetheless eugenics strongly influenced the views of those making and implementing policy affecting the lives of deprived and Deaf and disabled people here. Truby King, the founder of Plunket, was an eugenicist who promoted the model for the psychopedic hospitals.

In the ’40s, ’50s and ’60s mothers who gave birth to children who were deemed “intellectually handicapped” were told to “put them away”, forget about them and have another baby. Not all those children were intellectually disabled. Not all parents obeyed, but many did because parents in those days were more compliant with those who purported to know better.

That mindset, together with religious and cultural beliefs about disability, has never completely disappeared. Disabled people still recount being told by random strangers that “if I was like you, I wouldn’t want to live”. A Catholic parent once said their son was morally deficient because he was Deaf.

Those who were “put away” lived in institutions. Such places, even the smaller ones still around today, are closed communities. They develop their own cultures, and have very rigid power structures. Residents have less power than workers. In the past institutions were often staffed or managed by old-school ex-army people, or those who enjoyed the exercise of power over others. They were hierarchical, rule-bound, and the inmates had no choice about what happened to them, or everyday things such as the clothes they wore and didn’t own, or when they went to bed. They had few possessions and lived by strict timetables with little education, activity or stimulation. Non-compliance resulted in harsh punishment.

The philosophy behind the institutions was control and containment. Care was secondary.

Abuse and violence thrive in such settings. The mini-institutions of today still retain elements of these structures, especially if staff pay, conditions and training are poor, and costs are heavily constrained.

The philosophy behind the institutions was control and containment. Care was secondary. Even in some disability residential services today the service users are not the customer, the primary relationship is between the funder, the Ministry of Health, or now Whaikaha – the Ministry of Disabled People, and the organisation providing the services. There is still not enough accountability. Funding and risk avoidance are powerful drivers. Recently, after a death in a bath, IHC Services decided residents could no longer have baths. Easier to ban baths than to ensure proper supervision.

A new secure unit recently opened in Porirua risks repeating the failings of the past if nothing changes. If a person is treated with violence, and sees no alternative, they will respond with violence – it’s a very human response.

It doesn’t have to be this way. Learning-disabled people who are supported to make their own choices and decisions, and have equitable access to education and community, are able to participate in society. Enabling Good Lives (EGL) offers more individual choice and control so disabled people can live the lives they choose. The way everyone else responds makes a difference.

Those who need higher levels of support should still be able to express their preferences in everyday life, and have independent assistance to do so with dignity through supported decision-making.

While technology has greatly benefited many disabled people, for example enabling communication tools such as the synthetic voice people will have heard used by the late Stephen Hawking, there are still issues of quality and access.

Mental health services are inadequate and, as for any service, scrutiny is essential, especially where controversial treatments such as electro-convulsive therapy (ECT) are used. Those being treated need a voice, and they need people and organisations who can stand by them with proactive monitoring, representing their interests specifically, rather than those of “the system”.

Education for learning-disabled and Deaf, blind and other disabled people has progressed, but inequities still remain. Some, especially learning-disabled and neuro-diverse students, struggle with adequate support and access to schools and education. Deaf children need early access to Sign Language, and to Sign Language interpreters. NZ Sign Language has been an official language since 2006, but is still not universally available. For blind people, access to information in accessible formats is critical. Most are now educated in their local communities.

I support the protection of buildings with difficult histories, but they should be put in context with the personal stories of those who lived there, not re-purposed as places of “spooky” entertainment. Disappointingly the Porirua Hospital Museum and the published history of the institution lack patient voices or presence.

Wherever there are inequalities of power there is room for abuse. Lessons from the Abuse in State Care Inquiry should be heeded by the burgeoning eldercare industry. How we treat those most at risk in society marks our humanity. The Covid epidemic has shown how easily some groups are marginalised.

The government has announced it will apologise and create a new, independent redress system, and provide targeted support to survivors. But disabled people within the care system need change now. They need reinforced protection and monitoring of their rights, enabling them to live with dignity and respect, safe from abuse and exercising everyday choices.

The inquiry will release its report in June next year. Those who shared their searing experiences at great personal cost deserve redress. To help heal the wounds, we need to acknowledge the lives of the forgotten people buried in unmarked graves, and our dark disability history – and then address the current inequalities that are still encouraging abuse.