Citation: Order of Australia

Jeff Heath, AM, was one of the most effective advocates for people with disabilities. He created Link Magazine to provide a long-term voice for people with disabilities. He was instrumental in forming community organisations, served on a number of boards and committees, was involved in the establishment of Disabled Persons International, was as a successful small businessman, a nationally recognised lobbyist, author and commentator on disability issues.

Childhood In 1962, when Jeff Heath was seven he was diagnosed with a Wilm’s tumour in his kidney. The kidney was removed but within months tumours developed in his legs, lungs and a 15cm tumour on his spine. He was hospitalised and not expected to live. He was treated with Cobalt radiation, the standard treatment at the time and survived but the tumour on his spine (T4/5) resulted in paralysis. Even though he was restricted to a wheelchair he didn’t let it get in his way. Jeff became a scout and in 1972 he was awarded the Queen Scout Award.

Sport & recreation He had a passion for sport and recreation for people with disabilities. In 1976 he represented Australia in archery at the Paralympic Games in Toronto, Canada. Jeff and his wife, Evonne went on to subsequent Games, covering them for Link magazine. In 1979 he completed an Associate Diploma (Recreation) at Salisbury CAE and went on to become Director at Maesbury Recreation Centre. There he developed leisure activities for the community and in particular programs for people with a disability.

In 1983 Jeff completed a Bachelor of Arts (Recreation) at the University of South Australia. From 1990 he was a board member at SPARC (Sport Arts & Recreation Council) and in 1999 became a national board member and media officer for Sailability.

Travel Jeff Heath was an avid traveller and travelled to nearly every part of the world. In the late 70’s, when people in a wheel chair rarely ventured far from home he hitchhiked around New Zealand, Westen Australia and Tasmania. He drove a motor home across the United States and featured in a TV documentary about his travels through Central America. He taught English in Japan and wrote a book on disability in the Pacific Islands.

Link Magazine In 1980 Jeff and his wife, Evonne began Link Magazine from their home, with the mission to “examine issues from a cross-disability perspective”. It has become Australia’s principal disability journal and a successful national magazine. Link has now gone online at www.linkonline.com.au. It was a labour of love for Jeff in which he was never afraid to raise difficult issues.

Employment During the 1980’s he worked as an equal opportunities officer for various SA government departments. From 1988 to 1993 he was Executive Director of the SA Branch of Disabled People’s International DPI(SA). He wrote reports and submissions on access, the criminal justice system, equipment, accommodation, employment, etc. He also drafted 3 state budget submissions on behalf of the broader disability sector. He ensured representation on more than 37 Boards and Committees and convened over 50 public meetings From 1994 on, until his untimely death he was Managing Editor of Link disability magazine and a Director of Ability Network Pty Ltd. He was a Convenor of ARLEX (Australia’s Rehabilitation Lifestyle and Equipment exhibitions), as well as a presenter and public speaker at various national and international conferences.

Australian Democrats He was an active member of the Australian Democrats. He was Chair person of the Boothby branch, a member of the State Council, the state promotions officer and editor of their journal. In November 2000, he was selected as the number two candidate on the Australian Democrat Senate ticket for the 2001 half-Senate elections. Unfortunately, the Democrats only won enough votes in the election for the number one candidate to win a seat.

Activist Jeff was a determined man and was relentless in his quest to have barriers, whether physical or philosophical torn down. An example is when he took on the Adelaide GPO to make it accessible for people in a wheelchair. It took 22 years and it wasn’t until he lodged a complaint in 1999, using the Disability Discrimination Act that he finally succeeded. Now it is easy, dignified and safe to enter the Adelaide GPO.

In 1981 Jeff discovered that the Hilton Hotel developers had been granted an exemption to the access regulations. He contacted Hilton Management who referred him to the owners. They referred him to the architects who referred him to the builders. Jeff was getting nowhere so he approached the local Builders Labourers Union who gave their support and imposed work bans on the Hilton site. As a result of the industrial action access at the Hilton was drastically improved for people with a disability. In 1981 Jeff was selected to lead Australia’s first disability rights march through Sydney.

Achievements Jeff was active in the establishment of the following: Link Magazine (1980) Radio for the Print Handicapped (1980) the South Australian branch of Disabled Persons International (1981) Disability Information and Resource Centre (1983) – an information and resource centre for people with a disability. Jeff was also an inaugural board member (1982-85) Sir Charles Bright Post Secondary Educational Scholarship (1986). Jeff was also a Trustee (1987-89) Hosting professional and social tours for nearly 200 Japanese, German and North American tourists over 10 years, including the 1992 national speaking tour of Judy Heumann, the Assistant Director of the US Department of Education’s Division of Rehabilitation Hosting of a residential leadership training course for 17 young people with various disabilities

Jeff won numerous awards during his lifetime including: · Queen’s Scout (1972) · Rotary Youth Leadership Award (1979) · Inaugural winner of the Queen’s Jubilee Award for Young Australians (1979) · Churchill Fellowship Award (1996) · Order of Australia (2003)

Health problems In 1999 Jeff had a heart attack and later in the year he was diagnosed with breast cancer. He had surgery, chemotherapy and radiation treatment. However, he did not let this get him down. He recovered and his health improved and he continued his work in the disability field. In 2003 he was diagnosed with mesothelioma, a malignant tumour on the lining of the chest cavity. His oncologist gave him two years to live. In a public statement Jeff stated: “I’ve always lived my life to the fullest. I can’t see how I could have done more over the last 40 years, so why would I feel cheated? I have a loving family. I’ve achieved things that most people would have considered impossible, and I still have at least 12 months to achieve some more goals.”

Jeff worked until the day before his death, establishing a website for people with disabilities.

Jeff Heath died on Sunday 7th March 2004. He was 49. Jeff Heath was a role model to all who knew him.

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”.

All his life, Richard was a patriot for this State. His parents, Morrie and Gwen, had moved to a farm at Finniss, near Strathalbyn after they married in 1928. Morrie had been a banker and survivor of three years on WWI French battlefields, including the 3rd Battle of Ypres, as a dispatch runner. Gwen Dutton came from a family of brewers and grew up on a station in the south-east. Richard’s older brother, Jim was born in 1930 and still owns a property at Finniss.

Farm life was not for young Richard. He preferred to hide away by himself, playing with pet rabbits and dissecting mice and snakes. At age 9, the local paper reported his discovery that ticks lived under the scale of snakes.

From a very early age, he dreamed of going to sea like his great-grandfather Captain Jamieson. For him, the rural landscape was too isolating, the discipline of the dairy farm too harsh, the lack of other children to play with too lonely. Happy times included taking the horse and cart to their one-teacher, one-room Finniss Primary School, riding with Jim on sledges pulled by horses, hunting rabbits, exploring the creek and gazing out to sea from the rocks of Granite Island.

Richard’s most memorable childhood event was being buzzed by the famous G for George Lancaster bomber, now in the Canberra Australian War Memorial. The airplane named George was doing a victory tour of Australia in 1945 to mark the end of the European war when the pilots spotted him driving the horse and cart with a load of kids and thought it would be fun to strafe them. As his horse bolted, Richard’s lifelong esteem for the power of the services was born.

Richard was always grateful for the lessons of his early childhood from the end of the Depression and WWII when everything was scarce and rationed. His grey school trousers were hand-me-downs from his uncle, then his brother. Water shortages demanded very frugal use. With petrol rationed, a trip to Adelaide was a rare once-a-year luxury. Butter, sugar, meat, paper and books were great luxuries. His brother Jim would find Richard missing from the farm worksite, burrowed in a shed corner reading books or old English comics. He soon devoured the entire contents of the Finniss School library and anxiously awaited the monthly trip to a family friend’s to pick up the next edition of Arthur Mee’s Encyclopaedia.

His childhood solitude of time and space shifted dramatically in 1947 when he was sent to Scotch College as a boarder for Grade Six. This pleasure island of companions, lack of parental supervision, stimulation and activities was a heady brew. He joined the Scouts, football teams, cricket teams, and occasionally tennis teams. He loved gymnastics and acted in a number of school plays. Most boys hated the enforced Army cadet training but Richard loved it and won the silver sabre for the having the best platoon. The only drawback seemed the mandatory attendance at chapel and church.

Polio was rife during these times and many of Richard’s schoolmates disappeared for long bouts of hospitalisation. He didn’t get polio then but his health was marred by recurrent tonsillitis, finally having his tonsils removed in the first week of high school. When he finally returned from a long convalescence, he found that algebra, French and Latin were all Greek to him. He never really caught up with academics and without parents there to support his study habits, he began to concentrate on fun and worry about the rest later.

On the tram to the Wayville Showgrounds for an economics exam, he discovered that his economics textbook had all its pages uncut beyond page five. Miraculously he passed. The value of Scotch for Richard was less in educational content and more in his many friendships, sense of community and values of service to others. So with adventure in his heart, 16 year old Richard left Scotch in 1953.

He joined the Adelaide Steamship Company as an apprentice deck officer. Richard worked on the coal-burning steamships of its large fleet of cargo and passenger vessels. During his time at sea, the conservative-leaning Scotch boy was taken in hand by hard-bitten maritime unionists. They gave him a political education, pushing him to listen, argue and defend his view. As he grew to identify with the struggles of working people, he asked people to call him Dick and tried to roughen up his Adelaide accent. Apprentices at that time were paid a small salary of 12 pounds a month, supposedly in return for training to become a ship’s master. He received little training but the company certainly exploited his labour. Old logbooks showed he rarely worked under 70 or 80 hours a week.

In 1955, Richard was seconded to Flinders Naval College in Victoria for training as a Midshipman RANR(s). This sea-going reserve was a coveted special category for merchant mariners. He enjoyed his time in the Navy and took on the specialties of navigation and demolition. After Richard volunteered for this, to his horror, he found out that he had joined a mine defusing team. He came to enjoy blowing up railway lines but even more, learning to dive. He trained in Port Lincoln’s beautiful Boston Harbour, then full of corals and teeming with fish, lobster and scallops. His diving team had no trouble feeding the entire crew of the aircraft carrier HMAS Sydney. He was saddened to learn that the Harbour has now become a comparative underwater desert.

On his return to merchant ships, he was posted to the TSMV Manunda, a passenger ship that plied the waters between Melbourne and Cairns every month. Graeme Stevenson was his fellow cadet during that time and has stayed a lifelong friend. It is apparent that this handsome young man in uniform did not lack for female companionship, moving from port to port. On one adventure in Rockhampton, he won the title of the Rock and Roll Champion of Northern Queensland. The fact that he packed so much of life into his teenage years was the main reason he found it easier to accept limitations later.

When polio struck, Richard was more likely to have said, ‘Why not me?’ rather than ‘Why me?’ During 1956, the Adelaide Steamship Company and other shipping lines began selling their fleets. When his beloved Manunda was sold to Japan for scrap, Richard decided to make a future in the Navy. He left the Adelaide Steamship Company and was awaiting his Naval commission papers, when he suddenly became very ill. At the time, he was staying with his Aunt Mollie, an ex-hospital matron. After three days of high fever, he awoke, tried to pick up a glass of water and couldn’t move his arm. Aged 20, he was diagnosed with poliomyelitis and taken to the Hampstead Centre, at Northfield, then Adelaide’s infectious disease hospital. As he lay completely paralysed in an iron lung, his father opened a letter from the Navy saying Richard was in A-1 condition and should report for duty! Because he then didn’t report for duty, he was ineligible for any Navy benefits or rehabilitation. He also learned about the limits of private hospital insurance that he had paid regularly since he was 16. After the third month, he was declared ‘chronic’ and all benefits ceased.

The culture of hospitals in the 1950s was anything but customer friendly. Richard had to be tough-minded to survive the matron’s intimidation and domination and her war on germs. He pitted his wits against her lack of humanity for patients and the hierarchical medical rounds where no one ever talked to him, but over and about him. After six months isolation in the iron lung, Richard was eventually moved to a geriatric ward with 30 old men, where radios were forbidden and TV not yet broadcast in Australia. Somehow he created stimulation for his active mind beyond memorising the cracks on the ceiling.

During the period of strengthening his breathing without the iron lung, a young nurse caught his attention. He noted that she was not bullied by the usual hospital indoctrination. One day she presented Richard with a bunch of roses on her return from lunch. Soon after, the matron arrived demanding to know who had stolen her roses. Jill Brinkworth, now known as Kate, confessed and immediately defused the matron’s annoyance by saying, ‘And don’t they look lovely?’ Their romance bloomed and after he left the hospital, Richard and Kate were married.

But how to make a living with a body 98% paralysed? He must have looked something like concentration camp survivor, weighing 50 kilos and sitting in a manual wheelchair with legs out in plasters. Richard was ferried by a Commonwealth Car to a rehabilitation assessment after his discharge from Northfield in 1959. The waiting specialist wheeled him in front of a manual typewriter and asked him to type. He replied that he couldn’t even hold his hands up to type and anyway, he didn’t want to be a typist! ‘WELL,’ said the shocked doctor, ‘then we can’t rehabilitate you!’ He argued he should be given the 500 pounds cost of rehab so he could start his own business, but that was too radical. That day he realised he would have to make his own way in the world.

Richard and Kate rented a shop, library and attached dwelling on King William Rd, Goodwood. Private libraries were common in pre-TV Adelaide and Richard owned the Swan Library. Because he couldn’t move, he developed one of the early self-serve businesses. He loved this period of his life, with friends, customers, books to read and most importantly, the arrival of his first children Hugh in 1962 and Caro in 1965. It was daring to be a dad in a wheelchair and Richard gives huge credit to Kate for being a pioneer in this challenge. At King William Road, he introduced a simple but ingenious concept for letting flats, leading to the formation of Llewellyn Letting Service. This proved a very successful business and flourished there, and then at their new home in Swift Avenue, Dulwich. His competitors, annoyed by his success, lobbied for new certification rules for letting agents, which included a mandatory course delivered . . .on the second floor of a building. Richard became disqualified and burned his books rather than sell them on. Two weeks later, he and Kate had their new business — selling paintings in their home setting at an affordable price. Richard was featured in the local paper, telling of his new venture.

The response from artists was overwhelming. On the first day, five house-loads of paintings were sold and once again, Richard began a successful business. The Llewellyn’s house and lifestyle began to revolve around art. As he achieved financial stability, Richard designed and built an exhibition gallery at the side of their house. Over the period from 1968 to 1973, Llewellyn Galleries at Dulwich had 83 professional exhibits, a new show every three weeks to plan, set up, publicise, sell, distribute and account for. He ran several high profile Adelaide Festival shows. It was the heyday of dinner parties and many Adelaide artists and art lovers enjoyed the generous hospitality and entertaining of Kate and Richard. Hugh and Caro grew up in the heady mix of art, ideas, creativity and business. In 1969, Richard invited a group of Adelaide actors to use the gallery for Carpet Theatre, where patrons sat on the floor to enjoy plays. These actors became the core of the new State Theatre Company. The same year, he gave Adelaide its first exhibition of aboriginal art, showing 120 paintings from John Morley’s Western Teacher’s College classes, opened by the State Minister for Aboriginal Affairs, Robin Millhouse. $700 was raised by the show, half of it going to set up an Aboriginal Art Co-operative. Richard was also active as a State Committee member of Community Aid Abroad.

Family and friends loved their picnics in the park, but the gallery was the mainstream of their life. This ambience and Richard’s flair and outrageous ideas for free publicity helped the gallery thrive. It wasn’t always easy, with Richard still in a manual wheelchair and no way to hang his own shows. He became a master at getting his parents, artists and friends to work to his orders! 1972 was a year of huge change. With the help his school friend who had made a fortune from Poseidon shares, Kenneth Stirling, he bought Kym Bonython’s North Adelaide gallery and the house next to it.

After 11 years of caring for Richard, Kate needed to pursue other avenues of her still young and active life. Shortly after, Becky Roberts walked into his life — long hair, miniskirt and tall black boots — a Flinders University drama student who was willing to work as his housekeeper while Kate was away. They fell deeply in love. Richard and Becky moved into the North Adelaide house and Richard opened the North Adelaide Llewellyn Galleries with the help of Becky and his dear friend, Margaret McGregor. Kate, with Lyn Collin’s mother Joyce, ran the Duiwich Gallery for another year. As the ‘It’s Time’ 1972 election came along, Richard agreed to be the candidate for the Federal seat of Boothby. He stood for the Australia Party — a single-issue party started by Gordon Barton to get the Australian troops withdrawn from the Vietnam War. Even though he discovered that his ‘campaign manager’ had been an opposition plant who dumped all his promotional material in Brownhill Creek, he managed to get 4% of the vote.

The North Adelaide and Duiwich galleries flourished and provided launching pads for many well-known South Australians. Richard and friends collaborated in starting the Experimental Art Foundation in Adelaide. He also made a documentary film exploring ‘chance’. It was runner up in the 1974 AFI documentary awards and has toured widely in India! Other adventures included inviting Margaret Whitlam to open a show with new Australian flag designs and a trail-blazing aboriginal art show from several central desert communities. But the inflation of the early 70s was making business difficult, the art Richard enjoyed was becoming less saleable and it was time for a change. He shut the business early in 1974 and began a degree in Fine Art at Flinders University and Professor Donald Brook. He held weekly vigils outside the architect’s office to protest about the poor access there at the time. No toilet at all and he had to be driven onto the plaza in the V Dub, lifted out and back in to get up to the next level lecture room.

At the end of that year, Richard made the first of several trips to the US, staying with Becky’s family in Tucson, Arizona and San Francisco. To travel, he invented a folding lifting machine made from lightweight aluminium. On this first overseas trip, Richard was totally blasted away by America, not the least, by its attitude to people with disabilities. Americans didn’t expect people to stay on pensions at home. They expected people to work and get educations, so made access to higher education easy. He received a Certificate in Gerontology from the University of Arizona for study done during that trip. On returning, and bursting with ideas for change, Richard was told he couldn’t continue at Flinders because, yet again, all the second year courses were upstairs. With his new training, he volunteered to work for Dr Michael Burr at the newly formed Eastern Domiciliary Care Service at Northfield and cunningly devised an administration system that wouldn’t work without him. After two months, he was appointed to the Public Service as the Administrator of that service. In an overtly discriminatory decision by the Hospitals Department, he was disqualified from joining the State Government Superannuation scheme on the grounds of his disability. This drove Richard to double his efforts to provide for his own future and keep himself from his darkest fear, ending up in the “Home for Incurables.” Richard and colleagues created the groundwork of in-home support strategies at this time and he helped develop a Day Hospital in the same ward where he lay 20 years earlier. This was an expansive very happy period in his life, happy in work, happy in love and beginning to be in touch with disability colleagues. Becky drove him to work in her VW on the way to her teaching job and used Richard’s new invention of a rooftop lifting hoist that slid him into his electric wheelchair housed at work. For everything else, walking to movies at Walkerville, into town, Becky pushed the manual chair. There were no Access Cabs then. Even in town, there was only one accessible toilet — in the State Library. And people thought he really liked reading!

After experiencing the attitude towards and of people with disabilities in America, he realised how much change was needed here and began to come out as a person with a disability. He started the Club of Physically Handicapped in Adelaide, the first self- help political group in Australia. The Club began to lobby for and educate each other to advocate and input for change. In May 1977, he married Becky in the parklands near their North Adelaide home and in November of that year, they moved into their current home in Henley Beach. Morgan was born in 1979 and within months, he was catapulted into his father’s travelling career. Aged 7 months, Morgan went to his first meeting in Canberra of the National Advisory Council on Handicapped.

Meanwhile, Richard was becoming more radical and strident to create change in legislative and governmental circles. He became active in the Australian Council for Rehabilitation of the Disabled, mentored by Dr Donald Simpson, and became their State Chairperson, serving on the national committee. He wrote to Attorney General Peter Duncan to urge him to promote the idea of the United Nations International Year of Disabled Persons (IYDP) for 1981. Richard became SA’s representative at the first planning meeting in Canberra and was outraged to find 25 doctors and charity bosses at the table. He appealed to Senator Margaret Guilfoyle, Minister for Social Security, to reconstitute a committee of people with disabilities, saying that if it were a committee for a UN Women’s Year, they wouldn’t accept all men running it. To her credit, she listened and appointed the first-ever national committee of people with all types of disabilities. This IYDP Non-Government Organisations Committee went on to shape progress in Australia in 1981, still considered an outstanding UN Year in terms of community change and an explosion of interest, innovations and initiatives.

Richard played a key role on this and many other national committees which meant travelling interstate almost every three weeks for the Llewellyn family. At age 2, Morgan’s 200,000 miles earned him a huge collection of Golden Books and TAA pilot’s badges! The young family visited every capital in Australia and helped develop networks of people with disabilities in each place. It was a time of huge progress and consciousness raising. Richard helped to open up consultations that began to discover major directions people wanted. It was the first time people across disabilities met each other, heard each other’s stories and began to mobilise for common objectives. The committee’s travelling had huge impacts on accommodation, taxi services, airline practices and city streetscapes. The year culminated with 40 Australians travelling to Singapore for the inaugural conference of Disabled Persons International.

After 1981, Richard continued in government work, moving to the Royal Adelaide Hospital, where he created the first non-smoking campaign in a hospital, coining the name Butt Out. Anna was born in June of that year, completing his family. Richard continued with national committee work, a pilot study for Attendant Care, national committees for access and appointed to DACA, the new national policy setting body. But travelling with a three-year old boy, a baby and husband in a manual wheelchair was finally too much for Becky and Richard agreed to concentrate his work in and for South Australia. He continued to give countless speeches and write articles, changing the nature of the debate and even the language around disability.

In 1984, Richard, working with Jeff Heath, Becky and others in Adelaide’s DPI, helped host an innovative disability conference for more than 200 delegates from Africa, the Middle East, South and North-East Asia. People arrived with no wheelchairs, on tyre stumps with no money. The organisational problems were immense but his Asia-Pacific congress sowed many seeds of goodwill and motivation for the disability movement internationally. Richard became a delegate to the Keating and Hawke Tax Summit but kept falling asleep in Parliament House. He’s not the first or the last! When later he fell asleep driving along a path and woke up in the middle of a rose bed, he was diagnosed with sleep apnea as a result of polio. Just as his wheelchairs improved with each model he bought, so did the respirators which over the past twenty years helped him breathe at night.

Richard was appointed to the unique SA post of Disability Adviser to the Premier, John Bannon from 1984-1991. In this ambassadorial and leadership role, he was able to integrate his thinking, will power and action to build government structures committed to equity and inclusion. His interest in making Adelaide an accessible city continued with initiatives in kerb ramp design, the beginning of Access Cabs, designs for train access, integrated education progress. It was a fully engaging and absorbing task and Richard spoke highly of how John Bannon trusted his advice and gave him the freedom to act on it. As well as full-time work here, Richard chaired a national committee for Standards Australia and later contributed to a national committee on accessible transport.

A highlight of this time was the birth of Caro’s son, Jack, his first grandchild in 1989. Earlier attempts at getting a university education had stalled due to poor access. He had wanted to pursue law but Adelaide Uni did not have the facilities. Flinders Medical Centre however did have access and gave him permission to start a Masters Degree in Primary Health Care under Professor Fran Baum. This course marked a change in Richard’s thinking, as he became more able to see shades of grey. He graduated from Flinders Uni with his Masters in 1994, the same year he was awarded an AM for his contribution to service for people with disabilities. Richard enjoyed a year as Executive Director of the Paraplegic and Quadriplegic Association, then he and Becky joined consultants, Social Options Australia. Their favourite job was in Mackay, Queensland, travelling there many times to help the local council set up a Disability Action Plan.

The Llewellyn family continued to grow with the arrival of Hugh and Cathy’s daughters, Sophia in 1995 and Claudia in 1999. From that start, Richard’s philosophy was to open up access to opportunities, so people could make free choices. The notable presence of people with disabilities across Adelaide is a testament to that vision’s power. He and Becky went on to form Disability Consultancy Services Pty Ltd, specialising in disability access advice to architects on public buildings, streetscapes, to local councils and large organisations. In contrast to most people’s careers, Richard’s access work began at the national level, then moved to State and in its final phase, he felt the greatest progress could be made by getting details right at the local level. He was particularly proud to have been involved in creating improved facilities and services at the Adelaide Festival Centre.

Richard loved travel, the arts, family holidays and new stimulation. His heart lay in his family life, the sharing and wonder of being a father with four wonderful children. He treasured each of them so, which included his joy in giving them all advice. His 32-year marriage to Becky was extremely important. Theirs was a relationship of continuous conversation. He taught her to be tougher, to be more confident in herself. She in turn softened his edges and made him laugh. Richard’s kindness and generosity have extended to many. He felt incredibly blessed to be part of the extended family of Manh Phung, originally a boat-person from Vietnam. Manh lived with them and helped the family when Anna was a baby. Richard watched the rest of this family arrive over the years, grow, learn and achieve — people who are exemplary Australians and dear to his heart.

The year 1999 was difficult for Richard and Becky, who broke her shoulder at the Ice Arena. This put an immediate end to 27 years of being Richard’s sole carer. They began to use care services, something that Richard felt uncomfortable with. He so valued his privacy and found it difficult to be cared for by other people. Three weeks later he was hospitalised and found to have bowel cancer. He survived an emergency operation and later a treatment of chemotherapy, but was very weak throughout that year. Gradually he came to terms with the new care arrangements. He and Becky were assisted greatly by a core group of three wonderful women: Marlene Timms, Bev Jennings and Sally Howse.

From his earliest years, Richard had a passion for fairness and an ability to fight for what he considered to be right. In 2003 he began writing to and visiting detainees in the Baxter Detention Centre. He loved Australia and believed that these prolonged detentions shamed us all. He was rewarded with friendships and prayers from Afghani and Iranian friends in detention. Richard never believed he would get to the stage where he would contemplate retirement, regarding all his life past age 20 as a bonus! Good health care, good food from his beloved Torrens Island market, good air from the beach, cappuccinos at Joes’s, shared laughter and love from so many of you have seen this resilient man live much longer than anyone ever expected. He spent 47 years in a wheelchair, certainly a pioneer in endurance if nothing else. His lifetime spans incredible changes in the technology and services available to people with disabilities in the community.

Richard Llewellyn was a pioneering advocate in arguing for and creating much of that change. His life stands as a model to encourage people to make use of what you have and to use the fact that we live in a democracy to fight for what you believe is right. Richard used the darkness of the experience of disability and discrimination to fuel his drive to make things better for himself and for others. His passion for speaking the truth coupled with his need for belonging drove him to achieve, and in that process he in turn inspired so many people.

Richard was told he had three-six months to live in August 2003. In this final chapter of his life, he displayed characteristic hallmarks of courage, humour, positivity and openness. Facing death he spent his time with his dear family and friends. He let go of drive, enjoying each day, sensing when to fight and when to surrender. In dying, he shone brightly like the beautiful sunsets that he watched most nights from his sunroom, finding a new balance and peace. On Monday, May 24th 2004 as dawn was breaking, Richard, holding his daughter Anna’s hand, turned to Becky and said, “You and I have a great family.” He closed his eyes and passed away.

Written by Becky Llewellyn