As many NZ babies do, I developed eczema and asthma. My mother took me to various clinicians. I have vague impressions of kindly doctors with strange accents. In retrospect they were probably part of the Jewish diaspora - educated at the best medical schools of Austria and Germany before ending up as refugees at the other end of the world.
Childhood memories are of dietary restrictions, of being smeared with evil-smelling black coal tar ointment and swathed in damp bandages, of evening spoonsful of syrupy Phenergan from a flagon kept in the kitchen cupboard, and having my hands tied in cotton gloves so I couldn’t attack the eternal burning itch. My mother often sat with me during the night while I struggled to breathe. The in breath was the hardest.
It must have been tough for my mother providing my 24 hour care plus attending to my three older siblings. My father was particularly busy with his small publishing business and the lobby group for young businessmen known as the Jaycees. His membership of that organisation led to his inclusion as the ‘youth’ member (at 39) of the Mazengarb Inquiry into juvenile delinquency which met for several months of intense deliberation, without pay, and eventually produced a widely distributed report.
Two official inquiries in the 1950s sought to contain the ‘defective’, the ‘deficient’, the ‘deviant’ and the ‘delinquent’ - the interchangeable fears of conformist New Zealand. The Mazengarb Report was one and the other was known as the Aitken Report after its chair. In 1953 this so called ‘consultative committee’ urged the Government against both World Health Organisation best practice and the hopes of many parents of disabled children for better community support.
Instead, it recommended expanding the existing network of institutions into large ‘mental deficiency colonies’ to which parents could send their disabled children and forget about them. And so it happened. Although many family members grew up not knowing about their institutionalised sibling, I bet the mothers never forgot.
By the early 1970s up to 2% of the population was locked up in the network of psychopaedic and psychiatric hospitals, residential schools and children’s homes throughout the country. The profession of psychopaedic nurse (specialists in nursing intellectually disabled children) was developed in 1960s New Zealand. The deinstitutionalisation movement took off in the 1970s but it took until 2006 for the last big institution, Kimberley, to close.
But I was lucky. No one suggested to my mother that the strain of coping with my condition would be alleviated by sending me to an institution. My impairment was considered unfortunate but did not make me ‘defective’.
Others were not so lucky. The State was anything but benign for the young Robert Martin. He was also a 1950s baby boomer. His was a difficult birth and he was soon deemed ‘retarded’. When he was 18 months old the authorities suggested he be placed in the expanding Kimberley Hospital and Training Centre near Levin.
During his childhood he was often shifted and he also experienced Campbell Park residential school in North Otago, foster care, and the notorious Lake Alice Hospital in rural Rangitikei. There were occasional good and kind staff but the institutional life was harsh and frequently abusive. But, as he says, at least he could walk, talk and fight back, unlike some of the other inmates.
When Robert reached 15, the State tossed the angry teenager out of care. The anger was not surprising as he had been denied not only human rights, but culture and identity. He relates that he had not experienced 60s music nor heard about the Vietnam War, but most affronting was that he didn’t know about the All Blacks. So while I was playing Beatles records, marching against the war, and protesting against racist rugby tours, institutionalisation had denied him this basic knowledge of the world.
Fortunately, Robert was resilient and his leadership potential was noticed and nurtured. He became active in sport, married, and became a self-advocate locally and internationally. He spoke at the United Nations during the drafting of the United Nations Convention on the Rights of Persons with Disabilities as head of the NGO, Inclusion International. He was made a Member of the New Zealand Order of Merit and became the first inductee into the Attitude Hall of Fame. He recently featured in his second Attitude documentary, and a biography is in production.
His story is just one of many. The State was also punitive to many of my female age peers. A 2009 60 Minutes documentary, Shock Treatment, told the sad story of a group of unlucky girls placed in residential State care who were suddenly all diagnosed with epilepsy and put on an experimental cocktail of strong drugs, with ECT as punishment. Of course, without their consent or even knowledge. Eventually the management changed and the treatment ceased, but the long term effects remain severe for many of them.
Meanwhile truant or misbehaving children (mostly boys and often Māori) as young as seven and many having what we would now recognise as learning disabilities or ADHD could be picked up by the authorities and deposited in one of many children’s homes. One was Epuni Boys’ Home in Lower Hutt as experienced by David Cohen and described in his 2011 book Little Criminals. For some it was the first step of life long incarceration.
How could the State be so benign to me and so punitive to my peers? We are not so obsessed with the defective, deficient, deviant and delinquent these days. But being disabled, poor or brown are still major risk factors for exposure to State maleficence. What needs to happen so that the State protects instead of punishing its most vulnerable citizens? Meanwhile my eczema is reasserting itself. As a child of the Mazengarb Inquiry, I also itch for justice for the State’s victims who were not lucky like me.