Jacob's extraordinary 'ability'
By Chris Rodley
Every morning, Jacob Baldwin would arrive on campus and begin his day with the same ritual. At the bottom of the stairs that led to his classroom, he would call out for four volunteers who were willing to carry him, plus another team of volunteers willing to lift his heavy motorised wheelchair. Slowly and carefully, they would bring him and his chair up the narrow staircase and position him for his first lecture.
Getting to class was not the only hurdle Jacob faced while studying at the Cumberland College of Health Sciences in 1976, before the advent of disability discrimination laws and assistive technologies. With movement in only two of his fingers, he could not hold a pen and had to record each lecture onto a cassette tape, to be transcribed later by his stepfather. And at the end of the day, he had to find a taxi willing to take him home – many would drive off at the sight of his wheelchair – as well as someone to lift him into and out of the back seat.
Yet in spite of the obstacles, or perhaps because of them, Jacob thrived during his studies and made an indelible impression on his peers and teachers. More than 30 years on, many still recall him clearly, describing a forceful advocate for the rights of people with disabilities, especially access to buildings. “He demanded to be noticed and listened to,” says Dr Rod Rothwell, a senior lecturer in rehabilitation counselling who taught Jacob in the late 1970s. “His philosophy was: ‘I’m going to say what you need to do and if you need to carry me up the stairs then that’s too bad, build something that gets me up instead’.”
Jacob graduated in 1979 and became the first disabled student to be awarded a diploma in the field of rehabilitation counselling. He would go on to dedicate his life to raising awareness of the needs of people with disabilities, becoming one of the nation’s most prominent disability activists before his death in 2010 at the age of 59.
Now, he is set to be remembered in a new scholarship at the University of Sydney, which amalgamated with the Cumberland College of Health Sciences in 1990 and has since become a leader in disability policy research. His parents, who are funding the scholarship, hope that it will inspire future students at the University to follow in his footsteps.
Jacob’s struggle against the odds began even before he was born. In 1951, his mother, Veronica, fell pregnant while she was living in the Chinese city of Tianjin; her parents were White Russians who had fled to China during the 1917 revolution. The pregnancy ran into complications, but with China now in the midst of its own revolution, Veronica found herself turned away from the city’s hospitals which were filled with Mao’s Red Army soldiers. Finally, a local clinic took her in and she endured an agonising labour lasting five days.
Baby Jacob was born three months premature – “he was as small as a beer bottle,” his mother recalls – and was too young to breastfeed. With no breast pump available, the doctor fetched one of his Alsatian dog’s newborn puppies and gave it to Veronica to suckle so that she maintained her milk supply. Defying expectations, Jacob survived. It soon became apparent that he had cerebral palsy, likely as a result of the forceps used during his traumatic delivery. Not long after, Jacob’s parents emigrated to Australia where their marriage quickly broke down. His mother was faced with the monumental task of raising her disabled son alone at a time when there was little support for parents of children with disabilities.
With no real estate agent willing to lease a flat to them because of Jacob’s condition, she and her son were forced to make a public plea for assistance in the pages of the Sydney Morning Herald. Their situation improved as Veronica found work in a department store and Jacob’s doting grandparents, Baba and Deuda, moved out from China to help raise him. Meanwhile, Jacob began his education at the Spastic Centre, now the Cerebral Palsy Alliance.
As he grew up, Jacob became increasingly frustrated with the limited paths available to him as a young person with a disability. Kevin Baldwin, who married Jacob’s mother and adopted him in 1968, recalls his distress at being given repetitive manual tasks to occupy his time at the Spastic Centre. “At one stage he was drilling holes into metal plates,” he says. “It was extremely frustrating.”
With the centre’s support, Jacob moved out of the workshop and into an office environment where he flourished and was encouraged to pursue higher education. He applied to study at the University of New South Wales, only to be told that it could not accommodate someone with his needs. Jacob then approached Cumberland, and although its campus was also inaccessible to wheelchairs, his application was accepted. “That was like bricks being pulled out of a wall and the light shining in, and he never looked back,” says Kevin.
Jacob's Ability Trek
According to his parents, Jacob’s education was a major turning point in his life, giving him the skills and self-confidence he needed to realise his potential. After graduating, he became a foundation board member of the Disability Council of NSW and a policy consultant on disability. He also established an information centre on disability, and worked as an educator and motivational speaker.
His most ambitious undertaking came in 1992 when he set off to ride around Australia in his electric wheelchair, an adventure he called his ‘Ability Trek’ in line with his view that he was empowered by ability rather than limited by disability. Each day saw him travel an average of 80 kilometres, steering his chair down the highway with just two fingers of his left hand.
Along the way, he faced setbacks ranging from a ban on fundraising to a crash into a roadside ditch; he was once flagged down on the Nullarbor Plain by a horrified truck driver who offered him $100 to turn around and go back. Undeterred, he returned home four years later to a hero’s welcome at Sydney Town Hall, having spread his message of empowerment in dozens of local communities.
Following his Ability Trek, which earned him an Australian Achievers Award in 2000, Jacob renewed his focus on improving practical assistance for people with disabilities. Janelle Saffin, the Federal Member for Page, was a supporter of his efforts to lobby for greater accessibility and especially his dream of a unified disability support scheme.
“For a long time, Jacob had advocated that people with disabilities needed individualised service tailored to their specific needs in order to live relatively independently,” Saffin explains. His other consistent demand was for a nationally coordinated scheme rather than a patchwork of local services around the country. “And after pushing on that for a long time, he finally cut through," she says.
His ideas fed directly into the federal government’s National Disability Insurance Scheme (NDIS), which recently passed into law and will be trialled in five locations across Australia from July.
Jacob died from bowel cancer in 2010, before the NDIS was officially launched. However, Janelle Saffin was able to reassure him privately that the scheme had won the support of senior ministers and was on the path to becoming government policy: “It hadn’t been announced but I knew where it was going and he did too,” she says.
In 1992 Jacob rode around Australia in his electric wheelchair, an adventure he called his ‘Ability Trek’. He saw himself empowered by ability rather than limited by disability.
Last year, Veronica and Kevin Baldwin began the poignant task of sorting through Jacob’s papers, from memoirs and poetry to a book he wrote explaining disability to primary school students. They are now set to find a new home at the National Museum of Australia in Canberra, which has taken a keen interest in Jacob’s story. In October the museum will be displaying an exhibit on his life in its Eternity gallery, which profiles 50 remarkable Australians.
The couple has also been making plans for what they will do with their estate now that their son is no longer with them. “Everything was renovated for him,” says Kevin Baldwin, gesturing to his home on the NSW Central Coast, just north of Sydney. “All this was going to be left for Jacob.” Instead, they are planning to leave a major bequest to the University. The money will be used to create a scholarship which will help more students with a disability pursue higher education. “What better way could we donate than to help other person like Jacob,” says Veronica.
To be known as the Jacob Francis Baldwin Scholarship, the grant will be funded in perpetuity so their son’s contributions are remembered into the future. “I always say that the reason the horse Phar Lap was so good was that his heart was twice the size of a normal horse’s heart,” says Kevin. “Phar Lap was out of the ordinary and so was Jacob. He was an inspiration to the world.”