People with intellectual disabilities and their parents owe gratitude to IHC which has just turned 70:
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. . .
Both our sons had brain disorders which left them with multiple disabilities.
Tom was only 20 weeks when he died. Dan survived five years without passing any developmental milestones.
Looking after him got harder as he grew physically without developing intellectually and IHC’s support was invaluable.
Just how good the organisation was, was summed up by the manager of the local branch when we were trying to work out what was best for Dan.
He said, “Let us know what you need and we’ll work out how to provide it.”
I served on the branch IHC committee for several years which increased my admiration for the work the organisation does in supporting and advocating for the intellectually disabled and its members.
They continue to face challenges, one of which has resulted in a mother taking the government to court to prove her disabled son isn’t her employer:
An independent disability advocate has filed papers asking the Employment Court to decide if people with intellectual disabilities have the mental capacity to be employers.
The government is promising to change this, but advocate Jane Carrigan doesn’t want to wait and is going to court. . .
In order to get funding, Ms Fleming has to be an employee of her disabled son, a relationship the Ministry of Health has already admitted is a mere fiction.
Independent disability advocate Jane Carrigan said for too long the ministers and their ministries have indulged in what she calls tricky and technical conduct, by creating sham employment relationships.
And in doing so, the ministers had removed themselves from their responsibilities under the New Zealand Public Health and Disability Act, she said.
“This allows the ministry to step back in the very cynical name of choice and control and say to people with disabilities – the majority of whom I might add have an intellectual disability – ‘well there you go, you’re the employer, you have the choice to employ who you want, the control to manage how your employment relationship works’.”
Ms Carrigan said that was ludicrous.
“The so-called employer is usually lying in bed with nappies on and has no capacity to manage the employment relationship intellectually. And even those people who are only physically disabled, many of them, because they are high/very high needs, will rely on a family member to do all the employment relationship stuff,” Ms Carrigan said.
Ms Carrigan said if there was an employment relationship it was between the carer and the Ministry of Health and she wanted the court to say so. . .
Thanks to those brave and stroppy parents who formed it, IHC’s advocacy has resulted in a lot of improvements to care and support for intellectually disabled people and their families in the last 70 years.
I am very grateful for the help it gave us and also aware of the help others still need and the battles still to fight.