On 25 October 1949, 22 parents met in Wellington. A notice had been placed in the Evening Post the previous day calling for ‘parents and guardians of backward children in the Wellington district… to attend a meeting … to consider the formation of a parents’ association’.
The meeting elected Hal Anyon as interim president and his wife Margaret Anyon as secretary/treasurer, plus two committee members. At the following meeting, on 23 November, 50 people formed the Intellectually Handicapped Children’s Parents’ Association. Within three years there were a thousand members in several branches around New Zealand. In 1994, following several name changes, the large nationwide organisation became the IHC.
Those founding parents were brave and stroppy. They had to be. In 1949 there was widespread discrimination against people with what was then called intellectual or mental handicap. This situation was a legacy of decades of eugenic assumptions in which disabled people, particularly those with intellectual or learning disability, were considered defective and likely also deviant. Widespread assumptions of ‘tainted heredity’ and shame meant parents were strongly advised to hide their disabled children away from families and communities in institutions and forget about them. Many mothers were powerless to fight the removal of their child in the face of state authorities.
But by 1949 many parents of children with intellectual disability had had enough of hiding their sometimes-adult children away. Margaret and Harold Anyon wanted more for their teenage son Keith who had Down Syndrome. Wellington parents, including the Anyons, lobbied for a school. The local MP, Peter Fraser, helped them find a site in Oriental Bay. But in November 1949 there was a general election and the first National Government was voted in with a new Minister of Education. Meanwhile some of the residents of Oriental Parade had started a petition against the school. The new Minister of Education refused permission for the school and the parents had to start again.
Eventually, with Peter Fraser’s help, they found temporary accommodation under the stand at the Basin Reserve, and eventually found a site at Coromandel Street in Newtown, where they built a school, an occupation centre and later a sheltered workshop. But nothing happened without considerable lobbying and hard work, mainly by the families of these disabled children. They wanted education for their children, some good respite facilities, occupations and residential care for adults.
They were also astute lobbyists. The new National Party Minister of Women and Children in 1950, Hilda Ross, was also the only woman Cabinet minister. The IHC women invited her on a tour around Wellington and they visited about 20 mothers and children at home to see what the reality of life with their disabled children was like without government or community support. She became a strong ally although, unfortunately, largely ineffective when it mattered in the male-dominated political world.
The IHC parents petitioned the government for an inquiry into the lack of support for their children. They expected the findings would be in favour of schools and small community homes which was then international best practice from the World Health Organisation. The government appointed a Consultative Committee under the chair of the Vice Chancellor of Otago University and former head of the Medical School, Dr Robert Aitken.
Unfortunately, the 1953 report of the committee, which became known as the Aitken report, recommended that the current institutions be expanded so that disabled and mentally ill people (including children from five years old) would be housed in large ‘mental deficiency colonies’ containing several hundred people. The committee not only rejected parental requests for community support but also reinforced the use of words and concepts such as ‘idiots’ ‘imbeciles’ and ‘feeble-minded’ that the parents had objected to.
A few years later in 1958 under a different government, another committee under another doctor, Sir Charles Burns, criticised the Aitken report’s enthusiasm for large custodial institutions, recommending smaller residences and even family care. But it took many years for the momentum to slow and these ideas to be implemented. The last psychopaedic institution, the Kimberley Centre, south of Levin, only closed in 2006. At its height in the early 1970s it held about 800 residents.
The work of those involved with voluntary organisations such as those in the disability sector can be time consuming and intense. The records of those early days of the IHC are now part of a large collection of IHC records in the Alexander Turnbull Library. The papers of are full of passion, argument and advocacy; how best to get education, employment and community support for their children and others like them. IHC members fell out with each other, and there were battles between those wanting the organisation to remain parent-led and those wanting to let the clinicians and professionals in. But their work didn’t stop.
Those of us who no longer have institutionalisation recommended for our disabled children owe those earlier parents great thanks. Happy 70th birthday, IHC.