The stories of abuse and neglect suffered by people with disabilities in state care are difficult to understand. But it would be a mistake to assume they are entirely a thing of the past, writes Robyn Hunt.

OWhen Kimberley, the last of the great psychopedic institutions, closed in 2006, most people wouldn’t have noticed, but people with disabilities celebrated. This Levin facility, and others, were places of cruelty and life imprisonment. They were largely irresponsible – out of sight, out of mind.

Recent hearings on the Deaf, Persons with Disabilities and Mental Health of the Abuse in State and Faith-Based Care Inquiry received media coverage and are available on the Inquiry’s website. Those who appeared before the inquest to relive their experiences told a terrible story. Their courage, their dignity, their humanity – despite how dehumanized they were – and their unwavering desire for change were 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 species. Some cried as they relived the pain of their treatment as small children abducted or abandoned by their families. I did too. I knew some of those stories and I knew some people. If they could tell, the least I could do was listen.

Change cannot be left to investigation alone. This is the history we have to face as a nation, the same way we face our colonial history. The two are linked, although this shameful connection has been deliberately ignored.

Nor should we accept the ineffectiveness of wringing our hands when occasional new stories of family or institutional violence, or even deaths of people with disabilities, are revealed in the media and then quickly forgotten. Abuse always occurs where the conditions are right to encourage it.

YouUnderstanding the historical and social forces involved is helpful. In colonial societies, those unable to do hard physical work – digging up land, building houses and setting up businesses – were not welcome. This exclusion continues in today’s immigration policy, where people with disabilities are viewed as a financial burden on society. Even being born here will not protect disabled migrant children from deportation.

Maori disability is not my story to tell. But Maori people with disabilities have over time become subject to the same conditions as other people with disabilities, with the added consequences of loss of culture, language and connection, a very particular and terrible type of abuse. This too was described at the inquest.

Deaf students were denied sign language, punished for using it, poorly educated and abused. Blind children were also sometimes abused.

Bias against people with disabilities is deeply rooted in our mainstream Christian cultural history. Disabled lives were used as “teachable moments”, as objects of charity with expectations of gratitude and obedience. Cures are always the ideal, even if impossible for many. Both high art and popular culture have used disability to signify “otherness”, weakness and evil. Some people with disabilities have been perceived as having special powers, others have been exploited in freak shows. In some cultures, the onset of a disability is still considered a divine punishment and a source of family shame. A friend with MS was told by a co-worker, “You must have done something wrong 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. Nevertheless, eugenics has strongly influenced the opinions of those who make and implement policies affecting the lives of the poor, deaf and disabled here. Truby King, the founder of Plunket, was a eugenicist who promoted the psychopedic hospital model.

In the 1940s, 1950s, and 1960s, mothers who gave birth to children considered “mentally handicapped” were told to “put them away,” forget about them, and have another baby. Not all of these children were mentally handicapped. Not all parents obeyed, but many did because parents back then were more compliant with those who claimed to know more.

This mindset, as well as religious and cultural beliefs about disability, never completely disappeared. Disabled people still tell of being told by random strangers that “if I were like you, I wouldn’t want to live”. A Catholic parent once said that their son was morally deficient because he was deaf.

Those who were “outsiders” lived in institutions. Such places, even the smallest ones that still exist today, are gated 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 run by former military men of the old school, or by those who enjoyed exercising power over others. They were hierarchical, subject to rules, and inmates had no choice about what happened to them, or everyday things like what clothes they wore and didn’t own, or when they went go to bed. They had few possessions and lived to strict schedules with little education, activity or stimulation. Failure to comply resulted in severe penalties.

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

Abuse and violence thrive in such contexts. Today’s mini-institutions still retain elements of these structures, especially if pay, conditions, and staff training are poor and costs are tightly constrained.

The philosophy behind the institutions was control and containment. Care was secondary. Today, even in some residential services for people with disabilities, the users of the services are not the clients, the main relationship is between the funder, the Ministry of Health, or now Whaikaha – the Ministry of People with Disabilities, and the organization 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 that residents could no longer take baths. Easier to prohibit baths than to ensure adequate supervision.

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

It doesn’t have to be that way. People with learning disabilities who are supported to make their own choices and decisions, and who have equitable access to education and community, are able to participate in society. Enabling Good Lives (EGL) provides more individual choice and control so people with disabilities can live the life they choose. How everyone 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 help to do so with dignity through supported decision-making.

Although technology has greatly benefited many people with disabilities, for example by enabling communication tools such as the synthetic voice that people will have heard the late Stephen Hawking use, there remain issues of quality and access.

Mental health services are inadequate and, as with any service, careful consideration is essential, particularly when controversial treatments such as electroconvulsive therapy (ECT) are used. Treated people need a voice, and they need people and organizations who can stand by them with proactive oversight, representing their interests specifically, rather than those of the ‘system’.

The education of people with learning disabilities and people who are deaf, blind and other disabled has progressed, but inequalities remain. Some, especially learning-disabled and neurodiverse students, struggle to get adequate support and access to schools and education. Deaf children need early access to sign language and sign language interpreters. New Zealand Sign Language has been an official language since 2006, but is still not universally available. For people who are blind, access to information in accessible formats is essential. Most are now educated in their local communities.

I support the protection of buildings with difficult histories, but they should be put into context with the personal stories of those who have lived there, and not repurposed as “scary” places of entertainment. Unfortunately, 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 learned from the investigation into abuses in state care should be taken into account by the burgeoning elderly care industry. How we treat those most at risk in society marks our humanity. The Covid epidemic has shown how easily certain groups are marginalized.

The government announced it would apologize and create a new independent redress system and provide targeted support to survivors. But people with disabilities in the care system need to change now. They need stronger protection and monitoring of their rights, allowing them to live in dignity and respect, free from abuse and to exercise their daily choices.

The inquiry will publish its report in June next year. Those who shared their burning experiences at great expense deserve reparation. To help heal the wounds, we must acknowledge the lives of forgotten people buried in unmarked graves and our dark history of disability – then address the current inequalities that continue to encourage abuse.