Kath Mazzella is a gynaecological cancer survivor who turned her experience of illness and recovery into a platform from which to promote better awareness in the community about gynaecological health. Unhappy with the treatment she received during the course of her own diagnosis and recovery, she was determined to ensure that other women would not experience the same sense of isolation and disempowerment. At the core of her health advocacy lies her concern that people still get squeamish about talking about gynaecological issues and women's genitals, allowing ignorance to flourish so that many women don't recognise when potentially dangerous changes are happening to their own bodies or, if they do, don't talk about them. To encourage more community awareness and open discussions Mazzella established the not-for-profit Gynaecological Awareness Information Network (GAIN Inc.) as a way of linking fellow sufferers and survivors. A small local initiative which began in 2000 developed into International Gynae Day, held annually on September 10. For her leadership in health advocacy, Kath has been awarded an Order of Australian medal (2010), was inducted into the International Women's Day Hall of Fame (WA) in 2011 and was announced Western Australian Senior of the Year in 2012. Because of her work in highlighting the connection between gynaecological ignorance and broader health issues, such as depression she was also awarded the Beyond Blue WA Senior of the Year in 2012. She was recognised as a leader internationally in 2010 by the Boston based women's health organisation Our Bodies Ourselves with induction into their Women's Health Hero - Hall of Fame.

Born in Kalgoorlie, Western Australia, in 1951, Mazzella is one of five girls brought up in a single parent home. Her education suffered as a consequence of attending eight different schools in childhood. She is the first to admit she is not book learned, but does not see why this disqualifies her from making informed comments about the public health system, given she has been a major consumer. 'I am not an expert in gynaecological health', she says, 'but I have expertise as a health system user and that is important' (Interview).

Mazzella's traumatic journey through the health system began with an abnormal pap smear in 1989. She was given treatment, but no real explanation of what was being treated, by a gynaecologist whose view was that 'women had enough to worry about without taking on responsibility for that sort of understanding' (Interview). Unfortunately, this 'treatment' was not totally effective. About five years later she discovered a lump and was diagnosed with a form of gynaecological cancer. In 1994 she had vulval surgery that included the removal of her clitoris, vulva and groin lymph glands. The cancer was gone, but the accompanying sense of loss, grief and isolation dogged her when she left the hospital. She needed to understand what had happened to her, but received little support because there was very little publicly available information about vulval cancer. Public health diagrams that depicted the varieties of cancer women could contract did not include vulval cancer, a situation that has changed now, due in no small part to her own efforts. During her search for information she did discover, however, that in 1988 she was infected with the Human Papilloma Virus but never told. Distressed by a health service that had let her down badly, she became more and more determined to seek out other women who had similar experiences.

Mazzella's private research revealed disturbing stories about women who went in isolation to the same gynaecologist but were never put in touch because he thought it would be 'too depressing'. Beginning to understand that she was not as alone as she thought she was, Mazzella placed an advertisement in a women's magazine to track down more women with similar experiences. The response was overwhelming and a trip from Perth to the eastern states to meet women who had contacted her further confirmed her decision to establish a support group for gynaecological cancer survivors. When GAIN was established in 2000 she was the founding president. In 2014 it is still the most important advocacy and support network for gynaecological cancer survivors in Australia.

GAIN exists to offer a network of support but it also educates. Mazzella grew up in a place and time when women's bodies and gynaecological health were not spoken about in any place, let alone in public. She believes that even today 'there is a disconnect between the public sexualisation of women's bodies and women's knowledge of them from a health perspective' (Interview). It has taken her several years to educate herself and it frustrates her the extent to which people will still get embarrassed at the prospect of talking about 'down there', the incorrect naming of body parts ('a vulva is not a vagina') and the use of 'pet names' for female genitals (Interview). Self-taught in every respect, including what little feminist theory she can tolerate, she believes profoundly in the importance of language and naming as part of the project of empowering women, especially as they come into contact with health providers. GAIN exists to further this project by offering women 'empowerment through knowledge' (GAIN).

Kath Mazzella's experience as the leader of an advocacy organisation has been fulfilling and frustrating in equal measure. Like all women who lead advocacy organisations, she has taken on the task because she has seen a problem that needs solving and recognised that no one will do that unless she does. Like most of them, she is dramatically underpaid for her efforts. And like many women in these organisations, who have passion and commitment as hallmarks of their leadership but not the necessary management skills to support her effort, Kath recognises that enthusiasm for the task needs to be supported with funds and the appropriate training to use these funds effectively. She knows that 'no one person has all the skills required to run an advocacy organisation' (Interview). Her skill lies in selling the importance of GAIN. She is not afraid of approaching and getting advice from people win high places. For instance, in 2001 she approached Amanda Vanstone's when she was serving as Minister Assisting the Prime Minister on the Status of Women for advice on how to promote awareness who advised her to campaign for a National GYNAE day.

She approached Professor Ian Frazer, developer of the vaccine to protect women against cervical cancer, to be an ambassador for GAIN, and he accepted. She has been well supported by the Lord Mayor of Perth, Lisa Scaffidi and other leading women, such as Dame Judith Parker of the National Council of Women in Western Australia. Mazzella knows how to communicate with an audience and garner support for a cause in principle, but until recently, has struggled with turning that support into a strategic direction and plan. It is especially difficult to do this when she has to hold down a day job. 'Advocates are doing an important job', she says, 'and their value should be recognised through a decent wage' (Interview).

Kath Mazzella is proud of the role she has played as a leader of an advocacy organisation drawing attention to an issue that people generally don't want to talk about. 'When I am at a business function', she says, 'introducing myself as a gynaecological health advocate is a conversation stopper' (Interview). But as long as women with gynaecological health issues feel disconnected from the services that are supposed to help them, she will continue to talk about the topic.

Archival Resources

National Library of Australia Oral History Collection

• Kath Mazzella interviewed by Nikki Henningham in the Women and leadership in a century of Australian democracy oral history project [sound recording], 8 December 2011, ORAL TRC 6290/26; National Library of Australia Oral History Collection. Details

Published Resources

Online Resources

• Gynaecological Awareness Information Network (GAIN Inc), c.2014, http://gain.org.au/. Details
• International Gynae Awareness Day, c.2014, http://gynaeday.com/. Details
• 'Wendy', 'International Gynae Awareness Day: Kath Mazzella', in Our Bodies Our Selves: Women’s Health Heroes Hall of Fame, Our Bodies Our Selves [also known as 'Boston Women's Health Book Collective'], 3 April 2009, http://www.ourbodiesourblog.org/blog/2009/04/women-can-kath-mazzella. Details

See also

• 'Mazzella, Kath', The Australian Women's Register, National Foundation for Australian Women, http://www.womenaustralia.info/biogs/AWE5215b.htm. Details