Organisations for people with disabilities have been typically organised and controlled by non-disabled people, although many now have disabled people in leadership and governance roles.
All in the name
Under the Royal New Zealand Foundation of the Blind Act 2002, full members (who had to be blind or vision-impaired) would elect eight out of the 11 board directors. It also changed the organisations name from ‘for the Blind’ to ‘of the Blind’ which for many ‘symbolise[d] a move from paternalism to self-governance in the blind world.’1
Royal New Zealand Foundation of the Blind (RNZFB)
Beginning as the Jubilee Institute for the Blind in Auckland in 1890, the RNZFB provided services to blind, blind and deaf, and vision-impaired people. Its Parnell home provided sheltered workshops where blind people were employed and housed. The late-20th-century fashion for deinstutionalisation led to the home’s closure. In 2002 new legislation made the organisation more accountable to its nearly 12,000 members.
National Foundation for the Deaf (NFD)
Formed in 1978, the NFD is an umbrella organisation for groups representing the interests of nearly half a million deaf and hearing-impaired people. It tries to break down barriers faced by people with hearing loss.
CCS Disability Action
Until the discovery of a vaccine for poliomyelitis (polio) in 1952, periodic polio epidemics left thousands of children with paralysed or weakened limbs. Frustrated by the lack of support services, orthopaedic surgeon Alexander Gillies founded the Crippled Children Society in 1935. Branches provided home support, vocational training and financial help. After polio was eradicated from New Zealand, the Society cared for and supported people with cerebral palsy. It was privately funded from an annual appeal, which used images of waif-like crippled children. Other funding came from lottery grants, membership subscriptions and legacies.
In the 1970s the society was criticised for its medicalised and paternalistic approach to disability. This changed in the 1980s when people with disability were elected to governance boards. In 1989 the CCS officially recognised the Treaty of Waitangi, entered into a partnership with Māori, and changed its name to New Zealand CCS. In the 21st century disabled people were more influential in the organisation and there was an increased focus on advocacy. This was reflected in its new name – CCS Disability Action.
IHC New Zealand
The Intellectually Handicapped Children’s Parents Association (IHCPA) was founded in 1949 by Harold and Margaret Anyon. Their son Keith had Down syndrome, but they had refused to institutionalise him. The barriers to his education in mainstream schooling led to children’s rights being a central concern of IHCPA.
The IHCPA was against institutionalisation, promoting short-term residential care instead. But the government was reluctant to support community-based care, and the number of places in institutions for intellectually disabled people increased from 550 to over 2,000 between 1952 and 1969. IHC continued to push for community-based services and in 1989 it helped to win the right for all children to be locally schooled.
In 1994 the organisation became IHC New Zealand and an advocacy advisory committee was established in 2000 to coordinate its advocacy functions. IHC was restructured in 2005 into IDEA Services (needs assessment, residential and respite care) and Timata Hou (crisis respite services as well as living and work support).
Autism New Zealand
Autism New Zealand was started in 1969 as a support group for parents of children with autism. It was originally part of IHC but became an independent society in 1995. Autism was considered a rare condition in the 1960s, affecting about 1 in 10,000 children. By the 21st century autism was associated with a wide spectrum of psychological conditions affecting about 1 in 100 people. Autism New Zealand runs social-skills and music-therapy workshops, and has a network of regional branches.