Neville Kennedy was born in 1947 at Dublin, South Australia.
When quite young, he began to display the symptoms of what would be diagnosed as Muscular Dystrophy. At that time this meant that much formal education was out of reach, but nothing would stop Neville from being curious and a learner all his life.
He had an inventor’s mind, analysing problems as they arose then finding his own unique, but always workable, solutions.
There is little information about Neville’s early days, but he did tell a story about being carried to primary school in a sidecar basket attached to his older brother’s bicycle.
In the days before computers and mobile phones, Neville found that ham radio was a great means of contacting other people, and maintaining those relationships. His call-sign was VK5QY.
The Regency Park Centre for Crippled Children was built in the 1970s and Neville was there as a young man teaching ham radio to the young people he met there. He was aware that many of the young men he met there were likely to be at home and unemployed once their schooling was finished, and he also knew ham radio would give them a way to maintain contact with the rest of the world.
At about this time, in the mid-seventies, Neville acquired his first electric wheelchair, and he was thrilled with the new-found mobility gained courtesy of his Everest and Jennings belt-driven, acid-battery type machine which tended to leave drips everywhere. At that time, it was just as well he had the strength and agility to repair his own machine.
The wheelchair gave him the independence to determinedly live alone in a small cottage in Wright Street in Adelaide CBD, and get around the city under his own steam. In 1977 nobody was considering in-home support. The available lifestyle choices for people with severe disabilities were Regency Park for the younger ones or the Home for Incurables (later the Julia Farr Centre) for others. Neville, with typical pugnacity, said “no” to that: “I’ll live on my own”. At that time he had considerable strength in his arms and hands, and was able to live independently in his house with a series of pulleys and hoists which enabled him to sit up from bed, lift himself along through the bedroom door, hanging on a hoist, puling himself through the lounge and kitchen, and finally into a shower chair in the bathroom. The kitchen table was always loaded with the ingredients for his daily crock-pot meal, and he had special reaching inventions to allow him to get whatever he needed. No need to bother with cupboards.
Neville loved going to the Central Market and was well-known to many of the stall-holders. Navigation was sometimes tricky, as Adelaide’s old pram ramps were very steep, and he was tipped out of his chair on more than one occasion.
In the late 1970s Neville met Jeff Heath and Richard Llewellyn. All three had shared the experience of discrimination and alienation in a society that took no account of the needs or rights of people with disabilities. Together with Trevor Harrison they formed the Club of People with Physical Disabilities. This was the first South Australian self-help disability group. They began to reach out to other people with disabilities to learn how to advocate and lobby on their own behalf rather than being dependent on the opinions of professionals.
In due course Neville had district nurses come in and help with getting up and dressed. They were available only from 9am-5pm Monday to Friday, so Nev had to be ready to go to bed by 5pm. On a weekend, because he was unable to manage dressing himself, he lived in a blanket. The blanket did not stop him from doing what he wanted to do, including going wrapped in it to meetings of the Disability Club, held at that time in Morphett Street, not far from his house.
Neville used his developing advocacy skills to lobby the City Council for better footpaths and kerb ramps. He worked with engineer John Bailes on the scientific basis of design for new kerb ramps, and other access requirements. He fought two election campaigns for the Western Ward of Adelaide City Council but was unsuccessful. This, however, did not deter him from lobbying the City Council on numerous access issues.
In 1990, the Disability Adviser’s Office, under Professor Ian Cox and with assistance from Councillor Rosemary Boucaut, worked with the Council to form an Access Advisory Committee, of which Neville was a knowledgeable and enthusiastic member. This was only one of his commitments, including HACC, and the Inaugural Disability Services Advisory Council (DSAC), established in 1989. Neville was later invited to join a National Committee which met in Canberra. Travel to, and accommodation in, Canberra was a challenge for him but he met it head-on with success. He would have left his committee hosts in no doubt about his requirements. Canberra bureaucrats would have found Neville’s approach somewhat intimidating. They were unaccustomed to being confronted by someone whose whole life added a depth of meaning and practicality to what he was saying. Here was someone who knew what he was talking about! Neville’s advocacy brought a new focus to disability issues and a more realistic approach to service provision for people with physical disabilities.
Neville taught himself MS-DOS, the early computer system which most people never came even close to understanding. He was unhappy when it was phased out and he had to change to Windows. As his physical condition advanced he began to lose hand skills, and independent living was becoming more difficult. He could, however, manage his mobile phone to call for help when necessary.
As a member of the DSAC he would sometimes go to lunch with the Executive Officer who remembers several occasions when she needed to butter his bread and cut up his meal, but when it came to the after-lunch chocolate, Neville already had it unwrapped and in his mouth,
In the early 1990s he moved house. He was very proud of his new home in Salisbury. It was purpose-built and accessible and made available through a housing co-op. Neville was happy, but many other people were sad to see him move out of the city and missed immediate contact with him. Neville, however could travel by train, and continued to visit the city.
He met his future wife Lanie through correspondence. In due course the couple had a daughter, Sophie, and Neville had his own loving family. This seemed like a long-desired impossible wish come true for him and he was immensely proud of his family.
In 2004 Neville became ill with pneumonia, but continued to go to meetings and represent people with disabilities even when he was unwell. Neville died later that same year. His funeral service was crowded with his many friends and acquaintances, several of whom paid loving tributes to Neville and his contribution to the furthering the disability cause in South Australia.
Amongst other things he had taught people with disabilities never to settle for second-best, to go for what they wanted, speak up and never let anyone pull the wool over their eyes. He was a great example and had a pervading influence in disability issues.
He was a great advocate of “Nothing about us without us”, and would want others following him to make sure they keep holding the line to “keep the bastards honest”.