|
Below you will find a copy of the main stories that
appeared in the June 2005 edition of the QWHN News.
SILENCE: IT ISN'T ALWAYS
GOLDEN
Interview with Kath Mazella, Founder of the Gynaecological Awareness and
Information Network (GAIN Inc.) by Karon Sibbritt.
Who is Kath Mazzella?
This very month alone she has been awarded the Executive Women’s Forum’s
“Woman of Achievement Award” for 2005; been nominated for the Browne’s
Dairy Everywoman of the Year Awards; and nominated for West Australian
Citizen of the Year. Kath is currently the Secretary, and GAIN delegate,
of the National Council of Women in WA. Through their Standing Committee
on social issues, she has been instrumental in putting forward a
resolution on sexually transmitted infections and abortion: this
resolution was brought forward and approved by National Council of Women
at their conference earlier this month.
Kath has been through more in her life than most women would dare to
contemplate: in 1994, at the age of 42, she was diagnosed with cancer of
the vulva. In the same year she underwent radical surgery that included
the removal of her clitoris, vulva and lymph glands.
Kath’s isolation and frustration became the driving force behind the
establishment in 2000 of GAIN Inc. whose motto is, “with knowledge we are
empowered”.
GAIN Inc. is dedicated to the provision of awareness and information
services for both the women affected by gynaecological issues (cancerous
or not), and their partners and family, under a single umbrella. Kath
explains that it was important GAIN Inc. didn’t focus solely on cancer as
many gynaecological issues seemed linked and as such, gynaecological
health should also be viewed holistically. True to its dedication to the
consideration of gynaecological health in a holistic manner GAIN Inc. is
concerned with more than the physical wellbeing of its members and clients
– it recognises how gynaecological issues affect a woman’s sexuality, her
relationships and her psychological and spiritual wellbeing.
When asked what would be the one thing she would like to change Kath
doesn’t hesitate: she would revolutionise access to information on
gynaecological issues and ensure its place in the public domain. “There
are pamphlets literally gathering dust on the shelves unread”, she
laments, “glossy, beautiful pamphlets that no one ever reads”. Never read
that is, until they are diagnosed with one of the illnesses described in
these very beautiful and expensive pamphlets. Kath questions why we, as
health consumers, wait until things get so desperate to educate ourselves
about our bodies and what can go wrong ‘down there’.
Kath is adamant that there has to be ownership of these issues at the
health consumer level. But of course with ownership comes responsibility
and with this, fear and insecurity.
“Education belongs
to,
and
in,
the community,” states Kath. It is not something that can be separated
from the community, placed in inaccessible buildings, wrapped up in a
terminology no one understands nor dares to unravel. “Education must be
delivered in a meaningful and positive manner. It can no longer
remain behind closed doors – information deserves to see the light of
day.” You see, Kath is disturbed by what she calls the ‘shroud of
secrecy’ that surrounds
gynaecological health; the shame and embarrassment that so many women feel
when faced with these issues.
Appreciating her argument and agreeing with her desire to see more open
public discussion and debate on the very issues she has been lobbying for,
I ask HOW we, as a society, can facilitate this. Her response is
refreshing: she advocates a multi-faceted approach that targets every
sphere of society from political to medical to community based. Her
suggestions are as follows:
Political lobbying
As identified in her introduction Kath has been instrumental in ensuring
the passing of a resolution which encourages the Federal Government to set
up a preventive program targeting unplanned pregnancy and sexually
transmitted infections in schools and the wider community. This
resolution will facilitate the development of appropriate programs and
policies and support existing cervical health promotion initiatives by
leveraging off existing community based projects.
The impact of this resolution should not be underestimated. It will
encourage the Government to be more proactive in their approach towards
education and awareness raising throughout all sectors of the community.
The medical profession
Kath Mazzella was once challenged by the statement that GAIN Inc. was
attempting to de-medicalise gynaecological health. This is a statement
that Kath refutes. “It isn’t about de-medicalising these issues, it is
about
de-mystifying
them”.
GAIN is about working with everyone, whether they are a Professor in
Gynaecology or a young mother in the community. It is about forging a
relationship with, and between, the many layers in our society, ensuring
that the rich variety of voices and stories are heard, and the challenging
task of weaving them all together into a coherent message: one that is
empowering for all concerned.
Rather than expressing a disparaging view of the current medical
profession she is in fact supportive of forging partnerships and working
together to realise the common goals of health professionals and consumers
alike – longevity without illness or disability. Kath expresses a desire
not only for the medical profession to reach out to the health consumer
but also for the community to reach towards the medical profession and
invite them into their lives. This invitation will only take place once
confidence and trust has been won – something that Kath, in her 12 year
journey, is beginning to see materialise before her very eyes.
Kath is extremely proud of the support she has been given over the years
by the medical profession, in particular that of the Australian Society of
Gynaecological/Oncology, Women’s organisations and other professional
bodies. The support demonstrated intimates that perhaps the medical
profession needs the courage and conviction of women like Kath as much as
she needs them.
Developing a shared vocabulary
The key to de-mystification may well lie in the ability to forge a new
vocabulary to address gynaecological issues. A shared vocabulary: one
that is not overly anatomical and one that is not steeped in vulgarity.
Rather, one that holds meaning for health professionals and health
consumers alike: one that accurately describes an issue, invites dialogue
and builds confidence and trust.
However, before we endeavour to develop a shared vocabulary we need to
acknowledge that as a society we are perpetuating incorrect information,
mislabelling our anatomy, teaching others to do the same, confusing and
worse – oversimplifying – the issues at hand.
In the late 1990’s Kath was deeply concerned with a Cancer Council
publication that had, to her way of thinking, overlooked the inclusion of
the following words in the index of the brochure: penis, scrotum,
testicle, vulva, vagina.
In response to a passionate letter, which addressed what seemed to her a
painfully obvious oversight, the Cancer Council considered her
recommendations and made the necessary amendments. The result: a far more
comprehensive, accurate and informative document. As a testament to her
dedication to the preservation and integrity of the terms with which a
woman describes her own anatomy, Kath’s name is formally listed as
contributor to the document.
Getting on the Agenda
What confounds Kath more than the reluctance of medical practitioners to
make gynaecological health information more accessible is the reluctance
of Women’s Health groups – those very bodies which should be the advocates
of such issues – to tackle these issues head on.
She encourages State and National Women’s Groups to address these issues
and to dedicate themselves to the betterment of women’s health, by placing
gynaecological health issues on their agenda and in newsletters, hence
raising their profile within the community.
Provision of a role model
Finally, Kath notes that lasting change can only occur through the
observation of a consistent and heartfelt example. That example is GAIN
Inc. It was Kath’s dream to establish a National Gynaecological Day and
on 10 September 2003 that dream was realised.
In celebration of this woman’s vision, two years after the launch of the
National Gynaecological Day, Kath speaks about reinventing this day as an
International one, a tribute to the fact that an increasing number of
people have contacted Kath to enquire how they may help to spread the
message – a message that they have come to realise is less about Kath’s
health than it is their own.
After finishing my discussion with Kath I was amazed at how much she had
achieved over the years, how much ground she had gained and that she was
still able to dedicate such considerable effort and energy to progressing
her objective of raising awareness and empowering individuals with regard
to their own health.
No doubt the journey has been terrifying but it has been profoundly life
changing – not just for Kath but for those who have been touched and
inspired by her. Such inspiration is only now being recognised through her
nominations and awards. The journey is by no means complete but it has
well and truly begun. What Kath dearly needs is for others to make
contact and be willing to journey with her, if not for their own sake, for
the mothers, daughters, sisters and the generations of women who follow
them.
Contact details:
GAIN Inc. PO Box 170,
Subiaco WA 6904
Email: mazzella@bigpond.com
www.gynsupport.com
MENSTRUAL
WISDOM
How would it have been for you, if on the day of your first menstrual
bleed you were celebrated and honored by your friends, sisters, mother,
aunties and grandmother? If on this day you and your menarche was received
and recognised by society as a rite of passage and joyously announced as
such? For the first time introduced to the wisdom of women? How might your
life have been different?
The menstrual cycle and the female form were revered as sacred by society
until 5000 years ago when the Matriarchal cultures of Europe were
overturned. In these societies women were considered a vital aspect. Their
wisdom, dreams and creative visions were used to guide and support.
Indigenous cultures of the world initiated young women into the circle of
womanhood and honored this rite of passage with ceremony. The word “taboo”
meant sacred. This word taboo was claimed by patriarchy and used to shame,
lessen and control women and their menstrual cycle.
This word taboo is still connected to the menstrual cycle. Generations of
women have grown up with negative messages about their menstruation, their
bodies and their role in society. Throughout written history the menstrual
cycle has been associated with shame and degradation. With menstruating
women seen as unclean and destructive.
65 AD Pliny the Elder.
“Contact with it (menstrual blood) turns new wine sour, crops touched by
it become barren, seeds on gardens dry up, the fruit of trees fall off.
The bright surface of mirrors in which it’s merely reflected is dimmed,
the edge of steel and the gleam of ivory are dulled. Hives of bees die.
Even bronze and iron are at once seized by rust and a horrible smell fills
the air. To taste it drives dogs mad and infects their bite with an
incurable poison.”
To reclaim our menstrual cycle firstly we must acknowledge the destructive
attitudes that most of us have unconsciously internalised. Our cycle has
been used as a joke - “got your rags” or “having the curse”. Apart from
the use of fear and violence, has there been anything used so deliberately
to control women and keep them submissive as the humiliation of the
menstrual cycle?
Women are socialised not to acknowledge their cyclic nature as this may
cause us to neglect our obligations to our work, our family and more
importantly our husbands/partners.
This passage from 1963 was inserted into tampon packaging:
“WHEN YOU’RE A WIFE”
“Don’t take advantage of your husband. That’s an old rule of good marriage
behaviour that’s just as sensible now as it ever was. Of course, you’ll
not try to take advantage, but sometimes ways of taking advantage aren’t
obvious.
You wouldn’t connect it with menstruation, for instance. Yet, if you
neglect the simple rules that makes menstruation a normal time of the
month, and retire for a few days each month, as though you were ill, you
are taking advantage of your husband’s good nature. He married a full-time
wife, not a part-time one. So you should always be active, peppy and
cheerful every day”.
Even today young women are taught about their menstrual cycle in a
clinical setting where the physical and practical aspects of the process
are focused on. If young women are not encouraged to embrace their
menstrual cycle and each month internalise negative thought forms about
their bodies, how does this impact on their relationship with themselves
and their bodies? How does this affect their sexuality and the next two
rites of passage – child birth and menopause?
Rarely is the herstory of the menstrual cycle spoken about. The passing on
of women’s wisdom to the younger women and replacing the harmful,
inherited myths of the menstrual cycle with positive messages is critical
for the healing of women.
The fact is that women are cyclic by nature, innately connected to the
earth’s seasons, the ebb and flow of the tides and the waxing/waning of
the moon. These cyclic changes are reflected in the menstrual cycle and
are an intricate part of women’s lives.
Women can begin by acknowledging their cyclic nature as part of their
inner guidance. Simply keeping a journal and documenting your cycle and
the changes you experience physically, emotionally and spiritually can
reconnect you to yourself and your body in amazing ways.
The use of cloth pads, taking time out for yourself during low energy
phases, communicating your needs to your family and honoring this part of
you are important self nurturing strategies.
We can challenge the negative messages from the past and offer a healthy
alternative for our daughters and ourselves. This may include celebrating
your daughter’s first menstrual bleed by going out to dinner or
alternatively creating a ceremony with other women to honor your
daughter’s movement from maiden to woman. The positive outcome for all is
the celebration of the feminine and reclaiming our menstrual wisdom.
The future includes offering workshops to women on menstrual health/wisdom
and offering an alternative for young women—at the NQ Combined Women’s
Service in Townsville.
Kim Lowe
Women’s Health Promotion Worker
NQ Combined Women’s Services Inc.
Who cares for this “baby” -the DES exposed Australian?
In
the wake of the Thalidomide tragedy, the Australian Drug Evaluation
Committee (ADEC) of the Therapeutic Goods Administration (TGA) was
established in 1963 to proffer drug safety advice and to formulate
measures for evaluating possible adverse drug effects. It was not long
before, in 1971, the Australian government and medical professionals were
challenged with a further medical tragedy – the first known transplacental
carcinogen, diethylstilboestrol (DES). This once considered safe and
effective anti-miscarriage drug became linked to cancer and reproductive
injuries in the daughters and sons exposed in utero, and in the mothers
prescribed the drug in pregnancy. Millions of people worldwide were
affected, including Australians. Today there are still Australians unaware
of having been DES exposed and unaware of the important lifelong
preventive health care for DES exposure.
How many affected?
Last year the Adverse Drug Reactions Bulletin reported 15 DES related
cancer cases. This cancer’s incidence of about 1:1,000 DES daughters
(females exposed in utero) means approximately 60,000 DES exposed women
and offspring. The numbers affected could be greater, since the Australian
Institute of Health and Welfare holds data of about 86 cases of the cancer
type associated with DES that have yet to be investigated. Therefore the
figure could be as high as 344,000 affected.
Who holds this “baby”?
A 1980 Department of Health letter, in outlining the ADEC’s actions,
states that the question as to who should take responsibility for the
predicament of the children suffering from the effects of stilboestrol is
a vexed one. The same letter hastens to add that DES was introduced onto
the Australian market at a time when the Government had no controls over
the safety and efficacy of this imported substance and consequently could
not be held responsible.
However, the DES exposure problem has been left in the hands of the ADEC
and the Australian Drug Reactions Advisory Committee (ADRAC):
- without a specific DES cancer registry being established to help
estimate numbers affected
- without consistent communication with US experts in DES research
- without effective advice to the Minister that would result in an ongoing
educational campaign about DES with only repeated requests, all in vain,
to the Royal Australian and New Zealand College of Obstetricians and
Gynaecologists to report known DES cancer cases.
In 2003, upon review of the DES Update website of the US Centers for
Disease Control, the differing cervical and breast screening advice for
DES exposed women was termed by the ADRAC as an “impediment” to an
intended Adverse Drug Reactions Bulletin item about DES. The ADRAC made a
recommendation that guidelines for DES exposure be finalised in
consultation with the Population Health Division and that an Adverse Drug
Reactions Bulletin item be published to publicise the guidelines. Despite
this recommendation and without consultation with the Division, in June
2004 the TGA issued a Bulletin item about DES, followed by a media
release. The TGA nationally publicised advice that DES daughters should
have routine Pap smears, a procedure that is not adequate in detecting DES
related cancer. This advice was contrary to both information on Australian
government health websites and the best medical international protocol of
lifelong annual “DES examinations” that is required by DES daughters.
Incongruously, in November 2003 the TGA lodged a submission consistent
with the annual DES examination protocol to the National Health and
Medical Research Council’s review of Guidelines for the Management of
Asymptomatic Women with Screen Detected Abnormalities.
Meanwhile, the Australian public has been delivered information denying
them life saving preventive DES health care, information that went
unopposed by other medical bodies. There have been many successful DES
injury legal claims against pharmaceutical companies and now DES injury
legal claims could be incited against the Government.
In evaluating the care taken for DES exposed people, it should be noted
that the TGA has been entirely funded by fees from drug companies since
the mid 1990s. The lack of care and efficiency in DES exposure matters by
government officials and the relevant medical bodies when reasonable care
and efficiency is expected is as vexing as that government official of
1980 posing the question of who should take responsibility in an issue
concerning legatees of a man made medical tragedy. The matter of pecuniary
interests by government and medical bodies with the pharmaceutical
industry can not be ignored.
“Baby” up for adoption
In a recent Liberal Party Address Speech, the Minister for Health and
Ageing questioned how realistic it is to maintain neat distinctions in the
government system tiers, when voters don’t care who solves their problems
– they just want them solved. The Minister then asks, “And once the
Commonwealth Government is engaged in any particular responsibility, how
can it avoid the demand to provide leadership?” In seeking solutions to
the lack of care and efficiency, the group DES Action Australia-NSW has
already exhausted the tiers of government and medical bodies and has asked
for the Minister’s leadership in DES matters, but to no avail. It would
seem the unfair task in reaching solutions for DES exposed Australians is
in first addressing government avoidance of responsibility before
addressing any avoidance of leadership demands. Once “engaged”, the
Minister can contemplate breaking through those neat distinctions in
system tiers. DES exposed Australians just want their problems solved.
Carol Devine, Coordinator
DES Action Australia-NSW
REFERENCE LIST
ww.tga.gov.au/docs/html/adec_history.htm
www.health.nsw.gov.au/des
DES Stories: Faces and Voices of People Exposed to Diethylstilboestrol
(Margaret Lee Braun, 2001, Visual Studies Workshop Press, Rochester, New
York)
Australian Adverse Drug Reactions Bulletin, Vol 23, No.3, June 2004
Press release 12/4/05: Australians adversely affected by pregnancy drug
sold out by TGA – Carol Devine, DES Action Australia-NSW
Correspondence: Department of Health, Canberra ACT 11/3/1980
Minutes of the Adverse Drug Reactions Advisory Committee 1971-2003
Minutes of the Australian Drug Evaluation Committee 1967-1981
Cytologic examination to detect clear cell adenocarcinoma of the vagina or
cervix –Hanselaar AG, Gynaecol Oncol. 1999 Dec; 75(3):338-44
Therapeutic Goods Administration submission to NH&MRC’s Guideline Review
Group for draft – Guidelines for the Management of Asymptomatic Women with
Screen-Detected Abnormalities
Media release 6/6/04: Doctors urged to keep check on daughters of women
who used pregnancy drug three decades ago – Therapeutic Goods
Adminstration
Correspondence to Hon Tony Abbott MP, Minister for Health and Ageing
3/5/05 – DES Action Australia-NSW
www.abc.net.au/4corners/content/2005/s1343195.htm
Editorial : No more free lunches – BMJ 2003;326:1155-1156 (31 May)
Speaking Notes for Young Liberal Address 22/1/05: Conservatives need not
be sentimental about the States –Hon Tony Abbott MP, Federal Minister for
Health and Ageing
ONE WOMAN'S
COURAGEOUS STORY
What
is the one word in the English language guaranteed to strike terror in the
heart of even the strongest person? CANCER. One simple word but with an
impact similar to being told tomorrow the world will end.
Even in today’s society where cancer research receives a lot of media
attention and financial funding, the reaction of an individual who has
just been given a clinical diagnosis of cancer is certainly shock and
almost immediately there is some fear of impending death.
My name is Lisa, I am 26 years of age and on
January 16, 2005 I was diagnosed with Stage IV Vaginal Cancer. Since my
original diagnosis, distant metastases has been identified in both of my
lungs, liver, kidney, bowel and most recently an aggressive tumour was
discovered at the base of my spine.
What I am trying to state while attempting to maintain a politically
correct explanation is that apparently I have approximately six months
remaining of my life to enjoy my two beautiful children and my newlywed
husband.
Of course I have questioned WHY???? I have sought second, third and even a
sixth opinion of my diagnosis only to be instructed to enjoy the time I
have left. You would think that after that brief explanation of my
situation I would be more upset with the medical professionals who have
poked, prodded, biopsied, and baffled me with their foreign language of
medical terminology.
But my anger to a greater degree is directed at the general public. The
friends, family and community members who have made me feel ashamed of my
diagnosis. I have encountered people who ask about the location of my
cancer and then look at me with horror when I tell them.
I had begun explaining my diagnosis by telling people all the secondary
locations the cancer had invaded and excluding the primary cancer, but I
soon realised I shouldn’t have to be responsible for the discomfort of
other people The fact remained the secondary sites were a direct result of
Vaginal cancer.
Even though cancer is no longer a health issue discussed only behind
closed doors, people still do not completely understand that it isn’t
contagious. I have had friends sever contact with me for reasons I still
cannot understand. Some friends believed that by entering my home they
would get cancer, others stopped contact because they didn’t know how to
deal with my diagnosis. The second category I understand to a degree but
the first made me angry. At first I thought maybe they were uneducated
but my experience of these people told me it wasn’t their education that
was lacking but more the societal awareness of cancer.
During my courses of radiation and chemotherapy I met some amazing people
of all ages. They inspired me as much as their stories were heartbreaking.
Even though I was in the same position I struggled to find the words to
comfort them. But I am devastated by the attitude of the health industry
and general media by their reinforcement that women should be embarrassed
or ashamed of Pap Smears and intimate discussions about the essence of
their femininity.
Why are the words vagina, vulva and clitoris so shameful? These anatomical
parts are what set the female race apart from the male population. Men can
discuss their penises in public but women are raised to believe that their
differences are dirty or to be kept private. It raises the age old debate
about how men are the superior race and yet without women and their
reproductive organs the population would not exist.
I may not have much time left to fight this battle but whilst I am still
able I will be taking my story to as many people as will listen. I will
stand alongside women like Kathleen Mazzella and the organisation GAIN
Inc. which she stands for in the hope that more women can find the
confidence to speak out about these truly important feminine issues.
I want more women to come forward with their opinions and to take a stand
against the general consensus that we cannot or should not discuss our
sexual health or genitalia with the same acceptance that men can and do.
Keep fighting the social intolerance and tear down the stigma relating to
women and their bits.
Lisa Mackay
FEMALE
GENITAL MUTILATION
With
increasing numbers of refugees and migrants, one of the issues that GPs
may encounter in their practice is people who have been subject to, or who
are intending to practice Female Genital Mutilation (FGM).
FGM is defined by WHO, UNICEF and UNFPA as:
All procedures involving partial or total removal of the external female
genitalia or other injury to the female genital organs whether for
cultural or other non-therapeutic reasons.
Over 137 million women and girls have been affected by this practice, the
operation is forced on approximately 6,000 girls per day, worldwide about
one every 15 seconds. FGM is usually performed on young girls who are
unable to give their informed consent.
The practice occurs in various parts of Africa, Asia, the Middle East,
South America and Western countries like France, Canada and the USA –
where the practice may continue after migration.
Practicing populations offer many reasons for the practice such as
religion, culture, preserving virginity, psychosexual and family honour
and avoiding stigma.
However,
FGM constitutes a violation of a child/woman’s right to physical and
mental health, and is expressly prohibited by the Queensland Criminal
Code, and is illegal in Australia.
FGM can be a life-threatening procedure, which can have short and long
term damaging consequences for women’s physical well being and sexuality.
Women who have experienced FGM may present with sexual and reproductive
health problems, including infections, problems with menstruation, and
often difficulties with pregnancy or childbirth.
Family Planning Queensland’s Multicultural Women’s Health project has a
range of resources available to support health professionals respond
appropriately to the health needs of women who have undergone FGM. This
includes fact sheets, guides to working with interpreters, videos and
brochures in other languages. The project also supports nine bilingual
community workers who engage their communities in awareness raising,
education and health promotion initiatives.
For more information visit www.fpq.com.au
Odette Tewfik
Project Coordinator
QWHN News - April/May 2003
QWHN News - September/October
2003
QWHN News - December/January
2003/04
QWHN News - March 2004
QWHN News -
August 2004
QWHN News - February 2005
|