Remembering Libby

Activist, Social Worker and Cancer Patient Advocate

Elizabeth Mary “Libby” Tonkin

June 28, 1962 – February 16, 2009

By Eric K. Williams

Melbourne, Australia — Elizabeth Mary ‘Libby Tonkin,’ a South Australian woman who was not known to most of her countrymen and, who led a mostly lonely battle to bring the ravages of Inflammatory Breast Cancer to greater public awareness, died of complications from the disease in Brazil. She was 46.

The self described “Country Girl” was anything but backward or misinformed. She grew up on a South Australian family owned farm in Port Rickaby, on the Yorke Peninsula, located between the towns of Minlaton and Maitland. An avid reader, Tonkin was interested in the world about her that included taking an active role in raising her voice for social justice, the anti-war and, anti-nuclear movements, the environment and, combating racism.

This writer first met Tonkin in Copenhagen, Denmark in the summer of 1984. At that time she was taking part in an exchange program to study Danish farming practices and, had split her time between Arhus, on Denmark’s peninsula and, the Danish capital. While in Copenhagen, Tonkin spent much of her time at the home of Jacob Holdt, a celebrated and controversial Danish photographer. It was there, at the Holdt residence, where we became fast friends.

Holdt, known for his controversial and, some would say, shocking book of photographs called AMERICAN PICTURES, ran his large apartment as an unofficial community and, media centre, on Kobmagergade, in the centre of the city. It was a place where dozens in the creative and activist community from across Europe and, around the world, would congregate and, where Tonkin and many others would conduct some of the most spirited political discussions in Denmark. It was also a place where Tonkin was drawn to, shared her Australian experiences and, where many life-long friendships were established.

Like many Australian nationals, Tonkin spent more than three years travelling abroad. In between there were anti-war protests, rallies and social causes she embraced. Her travels brought her to France, The Netherlands, Germany and, to England, where she spent two years living in London’s Tooting District. In late 1987, Tonkin returned to her native Australia and, the Yorke Peninsula. She began work with a youth community centre in the town of Salisbury, near Adelaide.  Not satisfied with the limits of working on the bottom rung of the local community centre, Tonkin then studied Social Work at the UNIVERSITY OF SOUTH AUSTRALIA, MAGILL CAMPUS, where she graduated in 1991 with a degree in Liberal Studies. She was a woman who wanted to make a real difference in the lives of Australians, especially in the lives of young people.

That desire to make a difference later took her to other youth and, community centres in New South Wales. First, it was a short stint to a youth centre in Wentworthville, in Western Sydney and, later, to the Auburn Community Development Network, where she made a big impact.  From 1998 to 2002, Tonkin made a difference by the implementation of innovative programs for youth and young people.  The Auburn Network, perhaps the most racially and ethnically diverse youth centre in New South Wales, was a “hard grind and, very difficult,” according to her long time partner, Julien Lowe.  The mix of Pacific Islanders, Arabic, Pakistani and Indian immigrants at the centre, made the job especially tough for an independent, high spirited and determined woman. But, after some time, according to the remaining staff members, Tonkin gained the trust of her charges.  Her biggest challenge was yet to come.

In late 2002, Tonkin discovered an unusual formation on one of her breast and, it was at first misdiagnosed by doctors in New South Wales. She was told that she had Mastitis, an illness doctors associate with pregnancy and breast feeding. The only problem was that Tonkin was neither pregnant or breast feeding.  With painstaking research of numerous Australian health web sites, Tonkin was at first frustrated and, stymied by the paucity of available information. She later discovered that she had symptoms associated with Inflammatory Breast Cancer through one web-based group called I-B-C Research, a U.S. advocacy group in Washington State.  She took her findings back to her doctors at Prince of Wales Hospital and, was informed with the sobering news that she had only three to six months to live. Tonkin also discovered that she was one of six Australian women afflicted with the illness that doctors knew little about. She was determined to beat the odds.

Tonkin did beat the odds and, for the next six years led a lonely battle to get the word out about this largely unknown and deadly disease. Her goal was to create linkages between Australian and American women, including leading scientists in both countries, to better inform the public about the illness most cancer experts know little to nothing about.  In many ways I-B-C does not fit the traditional profile of and assumptions about breast cancer. Not only are most of the commonly known symptoms of breast cancer absent, but IBC tends to affect women at a younger age than other breast cancers and according to scientists in the U.S., is more frequent among African American women. Most disturbingly, the incidence rate for inflammatory breast cancer, Tonkin found out, is on the rise. The reason for this increase is unknown and some experts, however, believe that environmental causes may be a factor.

From 2002 up to the time of her death, Tonkin made hundreds of connections with cancer activists around the globe, with special emphasis on I-B-C awareness. Determined not to die alone in a hospital, Tonkin travelled to Brazil in February, where she had made prior visits seeking alternative healing. On this, her last journey, she brought along her long time companion, Julian  Lowe. She died in Brazilia where her ashes were brought back to Australia by Lowe. Her ashes were spread at Port Rickaby on the Yorke Peninsula at a ceremony celebrating her life with family and close friends at the Koolywurtie Church on the 18th of April.

Eric K. Williams is a Producer and Reporter for Pacifica Radio’s EVENING NEWS program at WBAI-FM in New York City and, a contributor to PAL TALK News and The Progressive magazine. He is currently based in Melbourne.

Segment One of the Award Winning radio news series, ‘INFLAMMATORY BREAST CANCER / I-B-C: The Unknown Killer’ can be heard in the media library on this web site.