Disability communities include a diverse range of people and includes whānau, friends, and supporters. In Aotearoa New Zealand the preferred term is disabled people. Māori use a variety of terms including tāngata whaikaha, tāngata whaiora, kapo, turi, whānau hauā and hunga hauā. We respect the rights of survivors to define how they identify themselves, including the wishes of some to not be labelled as disabled because of stigma or other reasons.
The United Nations Convention on the Rights of Persons with Disabilities describes who disabled people are and the rights they have to be free from abuse. Disabled people with rights under the Convention include people with actual or perceived mental illness, people with learning disability, people who are blind, Deaf or have physical impairments, and neuro-diverse people with conditions such as attention deficit disorder or autism. The Deaf community see themselves as a linguistic minority, with a distinct culture.
A 2001 study by the Ministry of Health reported that approximately one in five adults, and one in 10 children living in households were Deaf or disabled, equating to more than 700,000 people. By 2013, the number of people in New Zealand identified as disabled had increased to 1.1 million people. This includes a significant number of Māori and Pacific people. A disability survey carried out by Statistics New Zealand in 2013 found that both Māori and Pacific people had higher-than-average disability rates. A disproportionate number of Māori have been in disability and psychiatric care, and Māori have higher proportions of disability compared to non-Māori across all age groups. Māori have also been consistently overrepresented in psychiatric care.
Throughout most of the twentieth century, disabled people, and those considered to have a mental illness, were routinely removed from society and placed in large State-run institutions. Some faith-based and private organisations provided care for disabled people, and in some cases non-governmental organisations provided care on behalf of the State. However, the institutional care of the disabled in this period remained mostly the domain of the State.
Parents of disabled children often faced considerable pressure from governments to place their children in State institutions around the age of five, on the grounds it was better for them and their family.
This policy was founded on ableist assumptions. A United Nations Special Rapporteur has described ableism as “a value system that considers certain typical characteristics of body and mind as essential for living a life of value ... ableist ways of thinking consider the disability experience as a misfortune that leads to suffering and disadvantage and invariably devalues human life.” These views have coloured many aspects of care of Deaf and disabled people in New Zealand throughout our history.
In some cases, infants went into care that lasted for decades. Some disabled people never left care once they entered it, remaining in an institution for the rest of their lives. Some who died in care were buried in unmarked graves, prompting some in the community to describe disability care as “from cradle to unmarked grave”. Others left the institutions and went straight into other full-time care settings, where many remain today.
The goals of institutional care for disabled people ranged from treatment, work training, and rehabilitation through to punishment and containment from society. Advocates of eugenics (a pseudo-science aimed at improving the “race” through selective breeding) believed that disabled people should be separated from society to prevent the breeding of a “subnormal” race.
In the 1950s and 1960s, New Zealand had a number of public psychiatric and “psychopaedic” hospitals – institutions primarily for people with learning disability. Residents of these institutions included adults and children, and some institutions included babies.
Large residential facilities included facilities in Avondale (known as Auckland, and later Oakley and Carrington); Papakura (Kingseat and later also Ravensthorpe); Māngere; Waikato (Tokanui); Marton (Lake Alice); Levin (later Kimberley); Porirua; Nelson (Ngāwhatu and Braemar); Hokitika (Seaview); Christchurch (Sunnyside and Templeton); and Otago (Seacliff, Cherry Farm).
The Levin and Templeton facilities specialised in care of people with learning disability, while the others focused on psychiatric services or a mix of the two. Together, these facilities housed more than 10,000 people. In addition, hundreds of children attended State special schools (for children with learning disability), schools for the blind, and residential Deaf schools. Children and adults with physical impairments were also sometimes taken away from their families, including, for example, to rehabilitation facilities for children with polio.
By the 1970s, following many years of advocacy from the disability community, government’s official policy on institutionalisation began to shift. The Government banned the opening of new psychiatric and psychopaedic institutions in 1974, but the change from large institutions to community-based care happened slowly.
In 1986, the Department of Health published a ‘Review of psychiatric hospitals and hospitals for the intellectually handicapped’. It raised concerns over the ‘low stimulus therapy’ being used in these hospitals, which often referred to what “can only be a euphemism to describe barren walls and door, a mattress on the floor of a cell and loss of control of such amenities as light, heat and ventilation”.
The provision of care was, overall, inadequate and led to a lack of dignity. The report found:
“The picture of under-stimulated, under-occupied, under-noticed patients standing or sitting aimlessly in stark, crowded, smoke-filled day rooms has not been totally eliminated.”
The report also noted that “at one psychopaedic hospital at times patients may have no underwear for several days”. It was common for toilets and bathrooms to have no doors or cubicles, either through lack of maintenance or to allow a small number of staff to supervise a large number of people. In some wards for residents with learning disability, toilets were “of a bench type in open corridors”, even in recently upgraded facilities.
During the 1990s, the large psychiatric and psychopaedic hospitals closed their doors, and more than 10,000 people were transferred out of these institutions, most of them into community-based care. With these closures, survivor groups and their supporters increasingly called for the Government to acknowledge the abuse and neglect that many former residents had experienced. More and more survivors came forward to talk about their experiences, and some survivors took their cases to the courts.
The Government responded by setting up the Confidential Forum for Former In-Patients of Psychiatric Hospitals, a panel of people appointed by the Government to listen to the experiences of patients, their families and staff members. It ran from 2004 to 2007, and heard from more than 500 people. Later, the Government established the Confidential Listening and Assistance Service to serve a similar function for survivors of abuse in all State settings. This service, however, only had limited engagement with people with learning disability, and “only scratched the surface of the issues” faced by this community.
Survivors were admitted or committed to psychiatric hospitals for many reasons, not all to do with mental illness as we now understand it. Other contributing factors may have included racism, ableism, experiences of violence and abuse in the home, behavioural issues, and gender identity and sexual orientation that did not conform to social norms at the time of admission. Some were admitted or committed following misdiagnoses; for example, Deaf survivor James Packer, who has Asperger’s syndrome, described his admission to psychiatric care after he was misdiagnosed as having schizophrenia.
Reports from the confidential listening services, and evidence to this inquiry, showed widespread accounts of abuse and neglect within psychiatric hospitals.
Survivors who were in psychiatric and psychopaedic institutions have reported routine physical violence and sexual abuse at the hands of staff and other residents; being subjected to invasive treatments such as ECT and deep sleep therapy without consent or as punishment; being force-fed medication and then abused while unconscious; being subjected to inappropriate procedures including vaginal examinations; being threatened with a lobotomy, and being subjected to solitary confinement and isolation. We are also aware of reports of disabled women and girls being sterilised without consent, and being injected with the contraceptive Depo Provera, both as a contraceptive and to prevent menstruation. Research conducted after the closure of one psychopaedic institution found that there had been little development of life skills for the children in care, and that some disabled people entered the institution able to speak but were unable to by the time they left.
Large institutions are now closed, and care for mental illness and for disabled people has largely shifted into psychiatric units within general hospitals, non-government residential facilities, and community-based residences. Deaf and disabled children attend specialist schools or specialist units in mainstream schools. However, abuse and neglect of Deaf and disabled people did not stop with the closure of these large institutions. We have heard that disabled people have suffered abuse in community-based facilities including kaupapa Māori facilities, and other settings such as police custody, and transition between settings. Recent reports have also pointed out concerning practices in disability care even today. For example, independent reviews of health and disability facilities in 2017 and 2020 found that seclusion was used “too often, for too long, and not always with clear justification”. A 2018 government inquiry into mental health noted that seclusion, restraint and compulsory treatment were overused within our mental health system, especially for Māori and Pacific peoples, and that the use of compulsory orders sometimes resulted in trauma and harm.
Across the settings, disabled people and advocates have told us that they regularly experienced medical, physical, emotional, cultural, spiritual and educational neglect while in care. Examples of educational neglect include being segregated from their non-disabled peers, only attending school for half the day, or not learning to read. Many disabled people also experienced significant separation from their families, whānau and communities from a young age. We have heard that disabled people also experienced financial and property abuse, exploitation, silencing and restraint as well as “narrative abuse” where words and phrases are used to undermine mana and esteem.
Deaf survivors have also told us of educational, cultural and linguistic neglect. Some have said they felt the Government did not care about Deaf culture or Deaf language. Most teachers in Deaf schools were hearing and would punish students for using sign language, forcing Deaf students to lip read and communicate orally. We have heard that even when the ban on sign language was removed, the quality of education was low and did not provide for Deaf culture or Deaf language.
International research suggests that disabled children and adults are at greater risk of abuse than people who are not disabled. For example, the risk of child sexual abuse has been estimated as three times higher for disabled children, and disabled people are also more likely to experience abuse over prolonged periods. Caroline Arrell, who works with people with intellectual disabilities, explained:
“Because people with intellectual disabilities rely on others for communication and support, they have less power in relation to the staff that support them. This power imbalance is known to increase the opportunities for abuse, neglect, lack of personal informed decision making etc to occur. This power imbalance is also prevalent in how they are able to report and contribute to the process of describing their lived experiences in State-based care.”
Children in social welfare care or youth justice were often found to have neurodiverse conditions such as dyslexia, that are not recognised early enough to provide adequate support. Disabled children could go into social welfare care without the same protections as non-disabled survivors.
Disabled people can face significant barriers to disclosing abuse, or even recognising their experiences as abusive. Survivors have described barriers including communication barriers; a lack of education about sexuality, consent, or what constitutes abuse; and fear of punishment or retribution.
Survivors have also spoken about trying to complain but being disbelieved, or having their experiences covered up. Further, the fact that a survivor may currently reside in a residential care setting or receive disability support services is a significant barrier to disclosure, particularly if their abuser continues to work in the sector or to provide services to the survivor.
Survivor Walton Ngatai-Mathieson told us he was raped in an institution aged 12, but that he did not realise until he was an adult that what he experienced was sexual abuse: “I did not know anything about sex. I did not know what was happening”.
Research about abuse in psychopaedic institutions has found that some disabled people did not recognise their experience as abuse because they had lived in environments where abuse and neglect were normalised.
If abuse goes unreported, it cannot be redressed. Many of the disabled survivors who have met with the Commission told us they have not sought redress. Survivors with learning disability struggle to navigate any of the current avenues to redress, and many disabled survivors simply do not understand what redress is.
The recent introduction of more rights-based models of care, such as supported living, individualised packages of care, and inclusive education have reduced the risk of abuse and neglect of Deaf and disabled people.
Next: The journey for people in faith-based care