Elena Down, who died suddenly while flying to a workshop in Geneva on March 18, will be long remembered as a tireless and passionate advocate for the disabled in many countries. The widespread distress at the time was poignantly expressed by a friend who said: "At the news of Elena's passing, the sound of hearts breaking around the world was deafening."
Born on June 4, 1972 in Melbourne, Elena was the first child of John and Heather (nee Manning) and the long-awaited first grandchild on both sides of the family. The name Elena means "bright light" and her grandfather called her his little ray of sunshine – and so she remained for her 44 years, spreading light and hope for the disabled in dark places.
At the age of six she was diagnosed with sensorineural deafness, which progressively deteriorated. By her late teens she was classified as profoundly hearing-impaired. People were often slow to identify her deafness because of her excellent lip-reading skills.
Elena began learning ballet at the age of four. She continued with classical, jazz and folk ballet up to Year 12, gaining A+. At 13 she amazed all when she performed a jazz ballet solo at the Palais without missing a beat, explaining nonchalantly: "I can feel the beat through the vibrations in my feet."
Elena attended Greythorn Primary then later Presbyterian Ladies College, where she was encouraged greatly both by her teachers and the Visiting Service for the Deaf. She excelled at creative writing, art/pottery, gymnastics and athletics. She elected to undertake an exchange year in the US late in her secondary education, during which she took a keen interest in her host family's hearing-impaired son.
Despite her love of creative subjects, Elena chose to study arts/law at the University of Melbourne, where she won a scholarship to St Hilda's College. She thrived at university where she represented her college in athletics, was elected to the SRC and won the final-year research prize in intellectual property law. She graduated BA LLB (Hons) in 1997.
In 1996, while completing her law degree, Elena worked unpaid at St Jude's Anglican Church providing pastoral support to students in the residential colleges, mentoring, leadership training and hospitality to overseas students. Her strong Christian faith underpinned all her activities at university and subsequently in the workforce.
In the three months between graduating and starting articles, she worked as a volunteer at the Nambikkai Project for the Deaf in rural India. Her tasks included office management, teaching English and vocational training of deaf women. She learned the local sign language and taught the young women to swim (in their saris!).
She wrote: "I learned a lot in India – about myself, my values and God's values. I could see that my deafness was something that could open doors to enable other people to know God."
Returning to Australia, Elena worked as a lawyer with the Australian Government Solicitor in Melbourne then in Canberra. She spent eight years at the Attorney General's Department, working in copyright and international law and human rights policy and disability discrimination.
A career highlight at that time was playing a key role as principal legal officer in processes around Australia's negotiations on – and subsequent signature of – the UN Conventions on the Rights of Persons with Disabilities.
Elena was chosen as a torch-bearer in the Sydney Olympics torch relay, carrying it for two legs in Canberra.
Her strong Christian faith underpinned all her activities at university and subsequently in the workforce.
In 2003 she took two years' leave without pay to work with the deaf in China. During this time she mastered both written and spoken Mandarin – "an impossibility for the deaf" – and acquired several different Chinese sign languages. She established a support program for parents of deaf children and mentored deaf university students. She recruited a group of deaf adults to tutor parents of deaf children in sign language and she catalysed the formation of a church for the deaf.
After a brief time at the Australian Human Rights Commission, Elena moved to AusAid, where she assisted in the development of Australia's first Disability Inclusive Development Policy. She owned two mottos: "'No decisions about us, without us" and "Sometimes you have to walk the road to earn the right to speak".
This work included AusAid's first funding agreement to the Pacific Disability Forum and liaison with CBM Australia on leadership and communications strategy. Elena also worked hard to embed disability issues into aid programs; examples include the UN partnership agreements Water, Sanitation and Hygiene (WASH) and the Law and Justice program in Indonesia. She briefed Australian diplomatic missions overseas for Australian interventions in UN development forums on disability inclusiveness. She completed a Masters degree in International and Community Development with Deakin University while working full-time.
Elena joined CBM Australia in 2012 and there began the happiest five years of her working life. She brought her skills to a range of research, capacity development and technical advisories for DFAT, the Burnet Institute, World Vision, WHO, World Federation for the Deaf and numerous disabled people's organisations in the Pacific and Asia. Most particularly she designed the disability strategy for the whole Australian Aid program in Timor Leste.
Elena was involved in establishing a national disability inclusion development program in Samoa, in applied research for WHO on assistive devices, in supporting the Pacific Disability Forum, in capacity development in WASH in Sri Lanka and education of Indonesian and Pacific judiciary on disability rights.
She felt relationships were important to good outcomes and this was central to her work. A friend said: "She was a person who made you feel loved, special and included. She had the happy knack of making you feel like you were the only person in the room". Another said: "Elena extended to those around her the courtesy of assuming they were as smart, as deep and as interested as she was, bringing out the best in everyone".
Elena was seconded part-time as Human Rights Officer for the World Federation of the Deaf (WFD) through 2016 when she presented her research to a UN Committee in Geneva; this was launched in September 2016 as the WFD Position Paper on the Language Rights of Deaf Children.
Colin Allen, WFD president and chair of the International Disability Alliance (IDA) said at her memorial service that because of her wealth of experience, she had been selected to train others in the field of human rights for persons with disabilities. She was en route to this workshop when she passed away.
Despite her work and travels, Elena remained very close to her family. She was a devoted granddaughter and a loving, thoughtful daughter. Her relationship with her younger brother Stuart was precious to them both. He also has nerve deafness and was encouraged and inspired by Elena to overcome that hurdle to qualify in medicine and as a sports physician.
Elena loved children and was an adoring aunt to her niece and nephew. She was a superb cook and delighted in providing fine food and wine for family and friends. She was admired for her elegant dress sense, but was equally comfortable horse-riding in jeans.
Tributes have flowed in from around the world, Samoan friends calling her "an ambassador for the disabled, displaying peace, harmony and grace". Colleagues in Timor Leste said of her: "A hero for many people with disabilities – we have lost our motivator and the best mentor in the world."
Donations in her memory made to CBM Australia will be used to establish a scholarship fund to support disabled youth in Elena's past projects around the Indo-Pacific regions.
Elena is survived by her parents, John and Heather, her brother Stuart, his wife Sarah and their children Catherine and Joshua, for both of whom she was godmother.
* Thanks to CBM Australia staff and Elena's friends who helped in the compilation of this obituary.