|Eleven photo: Jimena Murray|
Yes, in many ways Wellington, New Zealand is paradise and I’m blessed to live here and to benefit from love and generosity from women and men, my beautiful sons now among those men. But in an interview with Matthew Hammett Knott earlier this year, I found myself saying–
We have to deal with serial violation, direct and subtle, on a daily basis. We may have learned the truth that golden boys usually win. So we have to apportion our energies and manage risk with great care.
I met a friend in the street recently, who’d been active in a campaign around violence against women. You’ve been busy, I said. Yes, he said, I’ll be glad to get back to normal. And I realised that for women, there is often no ‘normal’ like his to get back to. Certainly not for me. I don’t see myself as a victim – I’m too committed to problem solving. But because ‘normal’ is living among actual and attempted violation of women, like many women I’m very careful to expose myself to more risk only when I have appropriate support in place.This post is a continuation of that conversation with Matthew. It also attempts to understand the mechanisms that institutions use to compromise the well-being of women and girls, even when those women and girls know how to care for themselves. This is a #longread. It moves from Air New Zealand to the New Zealand International Film Festival to conditions around the insertion and removal of vaginal mesh. It's also a tiny tribute to Jacqui Scott and the Mesh Warriors and Mesh Angels around the world who continue to support her quest for survival and health.
Jade Speaks Up, an animation I wrote from a story by novelist Mandy Hager, was launched at Parliament last month. As a writer-for-hire, I wrote Jade as a kind of branded entertainment for 7-12 year olds and I’m especially proud that I created the expression ‘Breathe, Think, Do’ and the lyrics for the ‘Breathe, Think, Do’ song. Produced for New Zealand organisations concerned with children’s safety and with lots of community involvement (details here), Jade affirms children’s right to be safe. Presented only by professionals in association with a kitset, it provides a problem-solving framework for children to apply when they and others around them feel unsafe – scared, sad or angry. Like many screenwriters, I was a bit anxious about what might have happened to ‘my’ script, even after I saw the trailer, and it was a huge relief to see the full eight minutes and to feel delighted with the Teaspoon animation.
Jade Speaks Up is – as is absolutely necessary – intended for both girls and boys, many of whom in New Zealand are exposed to risks that have nothing to do with gender or that intersect with gender – risks because of their race or culture, because of their sexuality or disability, risks from poverty, from bullying and cyberbullying, from natural disasters. And I think it’s fantastic that Jade’s for all children. But since I watched it, I’ve reflected on its limitations. Will it be useful when girls experience more subtle cultural behaviours, the gender-specific patterns of serial violations embedded within various kinds of expression, in verbal language and in visual imagery? You may have seen the clip that documents the insidious and thoughtlessly ‘well-meaning’ behaviours that deflect girls from scientific exploration. And the #likeagirl clip that exposes the misrepresentation that informs the phrase ‘You run like a girl’ and, by extension, similar phrases that associate ‘girl’ capacities with ‘inadequacy’. (Clips grouped at end of section.)
And will Jade be useful for girls placed at risk from institutional patterns of behaviour, including those within screen entertainment? The Geena Davis Institute of Gender in Media identified one of these when its researchers established that from the very beginning of their viewing lives girls are not safe from the images that screen entertainment provides–
MYTH: Family entertainment is a safe haven for female characters.
FACT: Astoundingly, even female characters in family films serve primarily as ‘eye candy.’ Female characters continue to show dramatically more skin than their male counterparts, and feature extremely tiny waists and other exaggerated body characteristics. This hypersexualization and objectification of female characters leads to unrealistic body ideals in very young children, cementing and often reinforcing negative body images and perceptions during the formative years.Patterns of behaviour that harm girls and women are also evident among other common and casually inflicted and sometimes ‘small’ violations that individual women documented recently, in association with the twitter hashtag #yesallwomen – at least 1.5 million examples. And there could have been a hashtag #yesallgirls, including reference to Eleven, Abigail Greenwood's short film, which depicts boys who harass a (staunch) girl as she passes by and won the Friends of the Civic Award for distinctive creative achievement at the New Zealand International Film Festival (#nziff).
|Eleven photo: Kirsty Griffin|
Even when these violations aren't associated with abusive physical contact, they’re a chronic and integral part of the spectrum of violence against women. I think it’s essential to link them and to keep them always linked to the acute manifestations of violence against women and girls – rape, domestic beatings and murder. And it's essential to keep them always linked to institutionally sanctioned acute violence for which there’s so far no recourse to the criminal justice system, like the use of surgical mesh to treat women with pelvic organ prolapse and stress urinary incontinence.
If we separate the chronic #likeagirl and #yesallwomen violations from acute gendered violence and the deaths and disabilities it causes, it becomes too easy to ignore the death and disabilities that the chronic violations also cause. Self-harm including suicide from cyberbullying, for instance, and from relational bullying that may or may not accompany acute violence, usually from people in our daily lives – school, home, work.
|Eleven photo: Jimena Murray|
Some gendered violations, like insidious deflection from scientific curiosity over the length of a childhood, are subtle and can be hard to recognise, name and contend with. And when we do recognise them and ‘Breathe, Think, Do’ we may be powerless to Do anything very much, as we may also be during physical attacks, with or without a sexual element. The girl in Eleven responds from a place of strength to one small violation. But sometimes I find it hard to match her reflexive 'Breathe, Do' resilience, even to ‘Breathe, Think, Do’.
As I told Matthew, serial violation has been in my life for ever, because I'm a woman. Muriel Rukeyser wrote in her poem Waterlily Fire, ‘Whatever can come to a woman can come to me’, and that's the way it's been. (Her very #yesallwomen line is separated by a few lines from ‘Whatever can happen to anyone can happen to me’ and I keep that in mind, too.) But it’s still sometimes difficult to distinguish among violations that I need to do something about and those that aren't worth it.
Very often, if I use ‘Breathe, Think, Do’, consciously or unconsciously, my ‘Do’ is just a straightforward internal acknowledgment of something offensive before turning my attention elsewhere. (Sometimes laughter whips past all of it, as when I heard that a senior public servant stated that he would Ignore my academic findings, because I was an 'ageing hippy'.) But the other day, on my way to fetch a lunchtime Trisha’s pie, as I do sometimes in mid-winter, I fell into conversation with a man and another woman about a longstanding local issue that affects us all. The man – with whom this was my first extended conversation – kept interrupting both of us women. Each of us had different concerns but he dismissed almost all of them and this was so unexpected and shocking and it was so long since I’d experienced that kind of behaviour that my response was inadequate, passive. 'Breathe, Think, Do' just didn’t occur to me. Afterwards I felt disturbed and distracted, didn’t enjoy my pie as much as I usually do and then struggled to get back to work. (As I finish this post, I read a powerful essay by an unknown woman journalist – many thanks @nzdodo – who writes about the cumulative effect of repeated ephemeral distraction–
The fact I’m writing this is a failure ... to let women get on with their work, the work they want to do, without having to go through the exhausting eternal distraction of dealing with and recovering from sexism – including sexual aggression. The failure is all the unwritten articles and unwritten books [and films!] of women who have had to instead spend their time recovering from these experiences, or – and who could blame them – decide to stop venturing into this world.)Yes, I know that violence and its effects aren’t unique to gendered violence. As Jade’s choice of intended audience acknowledged, there are many other factors that make individuals vulnerable. Men and boys suffer from violence too and from other damaging societal expectations that the Representation Project is exploring in their Behind The Mask project. And the major Christchurch earthquakes provide many ‘gender-neutral-cause’ examples of effects from nature-caused violence in New Zealand. There was a gender-neutral spike of heart attacks immediately after the major quakes, as well as a spike in domestic violence, which primarily affected women. And after years of multi-cause earthquake-related stress it’s common for Christchurch people to live with the effects of post-traumatic stress disorder, including chronic illnesses that arise from an overloaded immune system.
So what’s unique about gendered violation, both acute and chronic? For me it’s that it affects so many of us, #yesallwomen and #yesallgirls, more than half the population, and that it is so deeply engrained in institutions. Institutionalised violation is especially difficult to Do anything about, which is perhaps why I continue to write about it. And for sure, although I’m pretty resilient and healthy and happy, some of New Zealand’s recent institutional sexism makes my heart ache. Even in New Zealand, the first country in the world to give women the vote, in 1893. Even though I’m a Pākehā woman and enjoy all the privileges that brings.
One source of heartache was Air New Zealand’s Safety in Paradise ‘safety’ video, played this year on Air New Zealand planes as they flew around the globe. It features Sports Illustrated bikini models and has had over six million YouTube hits. It uses what Joanna Russ describes in her classic How To Suppress Women’s Writing as an ‘Aesthetics’ mechanism – skilful use of imagery – to popularise demeaning characterisations of women. (Joanna Russ developed her framework to explain how the literary community silenced women but I think her concepts are useful for understanding the wider culture.) The Safety in Paradise video offended many New Zealanders, 11,000 of whom signed a petition for it to be removed from Air New Zealand on-board screenings. But it continued to be shown until replaced by another campaign in what Air New Zealand claimed was the usual kind of marketing cycle.
And then there was this image, the one that most shocked me this year, which I saw only because someone I follow retweeted it.
Yes it was hurtful to see the image, sent by someone living in New Zealand. But the volume of retweets and favorites – some perhaps from outside New Zealand – was more hurtful. In comparison with the response to this single tweet, the number who signed the Safety in Paradise petition is minimal. The contrast reinforces my perception that women are not safe in New Zealand.
The Safety in Paradise issue is probably more significant than the Kim Dotcom tweet because of its institutional nature and because all New Zealanders, through the New Zealand government, used to own a 73% shareholding in the airline. After the shares were sold down late last year we still owned 53%. Did the airline continue to use Safety in Paradise because it led to a 124% increase in web bookings from the United States, much more than the 13% boost from the airline's joint marketing of The Hobbit film franchise? Because it helped the Air New Zealand share price climb from $1.65 to $2.20? Was a 124% increase in web bookings from the United States or even part of a 55c increase in value per share worth it?
Another institution with a gender problem is the #nziff. A few weeks ago, I wrote a little bit about the decrease in women directors’ representation in some sections of its programme. Then I got the hard copy Wellington catalogue and did some counting, aware that other major international festivals are making real efforts to ensure that women directors are well represented. At Cannes this year, for instance, the festival released details of the numbers of women-directed films submitted and women directed 20% of the films selected, even though the proportion of women-directed films submitted was lower. In another example, when Helen Mirren accepted a Lifetime Achievement award at the Czech Karlovy Vary International Film Festival in 2012 she said–
I don’t know how many female directors are presenting their films in this festival. I very much doubt that it’s 50%' and added that, should she return to Karlovy Vary in five years, she’d want to see at least 50% of the films at the festival being presented by women directors.And this year, according to the latest Le Deuxieme Regard newsletter there does seem to be an improvement at the Karlovy Vary, which is now performing better than Cannes, at least in some sections, for example–
Official Selection – Competition
Women directors: 25%
East of the West – Competition
Women directors: 36%
Forum of Independents – Competition
Women directors: 17%
Documentaries – CompetitionBut the #nziff has fallen behind. I had to make a few tricky decisions re how to classify hybrids like The Darkside and The Reunion. But from what I found, this programme arguably reinforces patterns highlighted in those American clips, in #yesallwomen tweets, in the Safety in Paradise video, in Kim Dotcom’s tweet, those patterns of behaviour that shape and limit and violate New Zealand girls and women. In Joanna Russ terms, the programme can collectively be described as a example of ‘the Double Standard of Content’, which claims that one set of experiences is considered more valuable than another: men’s experiences are more valuable than women’s; men’s experiences as film directors are valued more than women’s. This is only partly because within that anti-women pipeline to screening a film to a festival audience women writers and directors have to listen to comments like this one, made to one of New Zealand's most interesting writer/directors–
Women directors: 25%
[Someone in the film industry] informally asked who the protagonist of my feature film was. I said it was a little girl. They snorted through their nose and looked away. “Well there you go”, they said, “who cares about a little girl?”Here are the details re the #nziff narrative features–
Narrative Features (eighty in all)
Women directors: 9% (the blue segment)
If we love film fiction, at the #nziff we saw the world primarily through men’s eyes. We also saw women and girls primarily through men’s eyes: women directed only a fifth of twenty narrative features with women protagonists (the blue segment again), on a list that excludes some films with mixed gender couples where the protagonist isn’t clearly identified in the notes and could be a woman.
In the documentary sections, women directors were represented slightly more strongly, as is common. Men directed 69% of the docos. Women directed 20%. Women and men directed the rest. Of the twenty-two documentaries about individuals, fourteen (63%) are about men, with just one directed jointly by a man and a woman. There are eight (37%) about women, two directed by men and one by a man and a woman. That means that less than a quarter of documentaries about individuals are about women as seen by women. Women’s views of individual men are almost completely missing.
As Jane Campion has said (in Virginia Wright Wexman's Jane Campion: Interviews)–
One of the things we learn in movies directed by men is what the ‘fantasy woman’ is. What we learn in movies directed by women is what real women are about. I don’t think that men see things wrong and women right, just that we do see things differently.And, another time–
I would love to see more women directors because they represent half of the population – and gave birth to the whole world. Without them writing and being directors, the rest of us are not going to know the whole story.The #nziff selection illustrates more of Joanna Russ’s mechanisms which, like her ‘Double Standard of Content’, relate to the ‘Isolate’, ‘Silence’, ‘Ignore’, Mis- and Underrepresent’ and 'Withholding of Resources' (exposure to audiences) strategies.
Through reinforcing male auteur dominance in film it restricts women screenwriters’ and directors’ access to other women as inspirations, what Joanna Russ calls a ‘Lack of Models’. Like behaviour that may deflect a girl from science, this practice seems often to arise within an otherwise benign environment, because we’re all so conditioned to finding it acceptable. I’ve observed it, for example, at New Zealand's International Institute of Modern Letters, which has an otherwise excellent record for gender equity and nurturing women writers.
The #nziff selection also illustrates the use of ‘Myth’ that Joanna Russ identifies, the myth that women screenwriters and directors’ achievements are rare, isolated (and if you too believe that myth, check out #DirectedByWomen on MUBI, or The Directors List). Or, to use another Russ category, they are 'Anomalous'. In contrast – as always at film festivals – women producers are well represented, with women like Rebecca O’Brien, producer of Ken Loach’s Jimmy’s Hall, which was her 10th film in Competition at Cannes.
And then there’s the #nziff Big Nights. There are sixteen Big Nights, which include some docos.
Directed by women: one, The Wonders/ Le MerivagileThis year, it would have been easy to add more women-directed work to the big nights. Sophie Hyde’s 52 Tuesdays was scheduled in the festival. She visited the festival. 52 Tuesdays won both the best director award at Sundance (for World Cinema) and the Crystal Bear at the Berlinale, for the Best Youth Film. How often does tan Australasian feature achieve this level of success, directed by a woman or by a man? Why did festival organisers not make a Big Night for 52 Tuesdays?
Also showing was Kelly Reichardt’s Night Moves. Kelly Reichardt’s a well-established, significant auteure. And Night Moves is an important film for New Zealand because of its environmental activism theme. As we deal with fracking, water, dolphin and bee issues among others, this is a film that demands our attention. What about a Big Night for those of us who love our environment and need to see more films that women direct? (Sophie Hyde and Kelly Reichardt also use filmmaking processes that are inspiring for women who make movies, for everyone who wants to experiment with ways to make good movies without Hollywood’s resources.)
I think that the gender elements of the #nziff programme are so lopsided in favour of men who tell stories that it demonstrates, like Safety in Paradise, that New Zealand is a culture that doesn’t value women. There’s no longer any excuse for these low numbers. What will it take to change them? A visit from Helen Mirren? What could persuade the festival board and festival programmers to include more women? Would it be hard to justify some curatorial visits to major women’s film festivals– the grandmamma of women’s film festivals, at Films de Femmes at Créteil in Paris, the International Frauen Film Festival in Dortmund/Köln, the Seoul International Women’s Film Festival? There are lots more elsewhere, too.
This is what director Andrea Arnold said when she visited Creteil–
I always notice how few [films by women] there are at film festivals. I went to Créteil International Women’s Film Festival in France with Wasp in 2004, stayed on for a few days and watched all these films by women. I spent the whole time crying because there were so many films that had so much resonance for me, being female. It actually made me realise how male-dominated the film industry is in terms of perspective. If you think about a film being a very popular and expressive way of showing a mirror on life, we’re getting a mainly male perspective. It’s a shame. I saw a lot of fantastic films at Créteil that I never heard about again.Andrea Arnold chaired the Critics Week Jury this year at Cannes and I wondered whether she and all the other women on juries this year shared Jane Campion’s frustration with the fait accompli of the selection that they were presented with. This is what Jane Campion, as Jury President, said about Cannes’ selection of women-directed works in 2014–
…it feels very undemocratic, and women do notice. Time and time again we don’t get our share of representation. Excuse me gentlemen, but the guys seem to eat all the cake. It’s not that I resent the male filmmakers. I love all of them...but there is something that women are doing that we don't get to know enough about.It’s just not enough – arguably a cosmetic gesture – to invite women onto juries when the selection has been already been as profoundly gender skewed as Cannes’ was and as the #nziff’s is.
Finally, when I read the #nziff director’s ‘Welcome’ in the catalogue I considered the role of taxpayer funding of the festival, in a kind of anti-women institutionalised synergy. The New Zealand Film Commission (#NZFC) makes a substantial contribution to the #nziff, year after year. This is how the festival’s (male) director sees that contribution–
The major sponsorship we receive from the New Zealand Film Commission is the best institutional endorsement of a long-standing notion of ours: that a smartly curated influx of the best and latest of international cinema stimulates the vitality of our own creative culture.Why is the #NZFC endorsing the #nziff’s limited commitment to films by and about women? Can the #nziff really claim to be ‘smartly curated’ or to ‘stimulate the vitality of our own creative culture’ when ‘Time and time again [women] don’t get our share of representation’ as directors at the #nziff and when women and girls are at the centre of the work selected, those stories are predominantly told by men?
It’s painful to reflect on all this. And painful to reflect on the abuse of medical mesh in New Zealand, which I learned about when I fell over Jacqui Scott’s story. I can’t remember how, but I think it was on Facebook, where she appealed for help.
Jacqui's story (in detail on Jane Akre's excellent Mesh Medical Device Newsdesk) includes all the familiar mechanisms. Invade. Isolate. Ridicule. Ignore. Misrepresent, which includes Blame. Shame. Interrupt, which includes Distract. Humiliate. (Attempt to) Silence. Withhold Resources. And it provides striking examples of complex serial violation, with acute and chronic elements that are both individual and institutional. It also exemplifies the limits of ‘Breathe, Think, Do’ – it works well only when the violated individual can find allies. And when ‘natural’ allies within institutions – doctors, surgeons, bureaucrats – refuse to help, resolution becomes very very difficult.
Jacqui was raped in 2005. In addition to other profound effects on her wellbeing, the rape damaged Jacqui’s bowel, bladder and vagina. Then came a second violation. Without explaining the possible side effects and without her informed consent – her surgeon presented her with a consent form when she was sedated, just before her operation – Jacqui’s gynaecologist attempted to repair her injuries by implanting two kinds of surgical mesh, sometimes called ‘tape’, often used to treat women with pelvic organ prolapse (POP) or stress urinary incontinence (SUI), for colorectal and hernia repair in women and men and in breast reconstruction. I haven't heard of it being used to repair men's genitals.
One of the meshes implanted in Jacqui was the Tyco IVS Tunneler. The other was GynecareProlift Total Pelvic Floor Repair System, made by Ethicon, owned by Johnson & Johnson. It is made of non-absorbable prolene, a plastic, and it looks like the six-armed stripey element in this image. It is blue.
The other elements in the image are the tools to implant the system. They are used like this (from an FDA file)–
This is how the Ethicon website describes the implanting process–
Using very small incisions, the surgeon is able to insert the mesh through the vagina. The surgeon corrects the position of any organs that have ‘dropped out’ of their normal position, or prolapsed. The GYNECARE PROLIFT® mesh acts as a supportive sling, restoring support and keeping prolapsed organs in their correct positions.When implanted the mesh looks like this–
And the Ethicon website states that the sling is supposed to be permanent–
The soft mesh is initially held in place in the body by the friction created by long extension strap-like arms of mesh material passed through pelvic supports. The body’s natural tissues then quickly grow into the pores of the mesh, creating the final support. The strength of this tissue is greatly enhanced by the presence of the soft mesh.But mesh is not inert within the human body. It may shrink and curl. In the warm environment of the human body it may break down and release chemicals that compromise the immune system. It may break up. And migrate. It may become exposed in the vagina. Mesh may attach itself to a nearby organ like the bladder or bowel. Perforate it. Enter it. It may grow into the pelvic bone. It can cause infections, particularly in the vagina, a site that’s never sterile, where it behaves differently than it does in the abdomen. It often causes intense pain, often through pudendal nerve damage. And when these things happen, the mesh is very difficult to remove. And very difficult to remove safely.
Recently, researcher Suzanne McClain produced a spreadsheet and a tree that explains how transvaginal mesh got to the market in the United States and then on to the rest of the world.
The tree shows how manufacturers of transvaginal mesh used the U.S. Food and Drug Administration’s (FDA) 510K process, a short cut to the marketplace under which the bulk of medical devices are approved, where the applicant notifies the FDA that it plans to sell a device, often linking the device to a similar one already approved, a ‘predicate’, as the tree shows. The FDA generally says okay, giving an approval to sell. This is not an approval based on safety or efficacy. (Some devices have also been linked to the FDA’s more rigorous Premarket Approval process and Suzanne McClain is currently investigating these.) Many transvaginal meshes can be traced back to the ProteGen Sling, recalled by Boston Scientific on March 17, 1999. According to Suzanne–
In their recall notice, Boston Scientific stated ‘Use of the ProteGen in the treatment of female urinary incontinence is associated with a higher than expected rate of vaginal erosion and dehiscence, and does not appear to function as intended’. So none of the devices that can be tied to this predicate should have been cleared for market; they were cleared based upon a faulty device.The authoritative Auckland-based Women's Health Council and the Women’s Health Action Trust (WHA), provide excellent research and analysis of the New Zealand situation. I’ve referred extensively to their work. The WHA records that in early May 2014, the FDA issued two proposed orders –
...which would reclassify surgical mesh for transvaginal Pelvic Organ Prolapse from a moderate-risk device (class II) to a high-risk device (class III) and require manufacturers to submit a premarket approval (PMA) application for the agency to evaluate safety and effectiveness.But that classification will be too late for many women already harmed.
Like the Safety in Paradise video and the #nziff selection, the use of mesh in New Zealand is a small country version of a global problem, with its own unique slant. The Women's Health Council and WHA research shows that the institutions that should protect New Zealanders and women affected by vaginal mesh insertion have all failed, not just in Jacqui's case, but in many others. This failure too is accompanied by those familiar strategies that affect what we see on screens large and small, that affected Jacqui: Distract. Isolate. Ridicule. Ignore. Invade. Misrepresent, which includes Blame. Under-represent. Humiliate. Shame. Silence (Make Silent. Keep Silent About). Withhold Resources, of Money, of Time, of Appreciation. Debilitate. And yes, I'm repeating the list because yes, the experiences repeat, repeat, repeat.
The failure starts with the medical profession, including some general practitioners, surgeons and the surgeons’ professional organisation. (The medical profession’s failure will not surprise New Zealanders, familiar with our history of highly gendered medical issues that centre on our genitals: ‘the unfortunate experiment’ on women with cervical cancer at our National Women’s Hospital and pathologist Dr Bottrill’s negligent misreading of hundreds of 12,500 cervical smear slides, interpreting high-grade abnormalities as normal, which like the ‘unfortunate experiment’ generated an official inquiry as well as long-running litigation.)
Although the manufacturers never properly tested the mesh, they aggressively promoted it within medical communities around the world, including I imagine the Middle East, Asia and Africa though I've as yet seen no information about its (ab)use there. Has Johnson & Johnson been dumping mesh in communities where there are many women with fistula from rape during war?
The manufacturers' salespeople were welcomed in New Zealand, where this created a conflict of interest in the medical profession at the very top. According to the Auckland Women's Health Council, the urogynaecology spokesperson for the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG), and the immediate past vice chair of the Urogynaecological Society of Australasia, Associate Professor Malcolm Frazer–
...holds contracts as a preceptor for Johnson & Johnson Gynecare as well as American Medical Systems mesh products for which he receives a fee. He has received financial support from both organisations to attend scientific conferences as an invited lecturer.There appears to be just one urogynaecological specialist, Mrs Hanifa Koya, who consistently speaks out against the use of mesh (except, in her own practice, for one very limited application). She uses plastic surgery-type techniques as her first response to women with POP and SUI and to repair mesh damage and makes every effort to ensure that women do not have to endure repeat surgeries. Not surprisingly, she’s been bullied and ostracised by other surgeons.
According to the WHA, the RANZCOG (so many acronyms, hope they're not too confusing to follow)–
...acknowledge[s] FDA warnings about mesh, while continuing to support its use, suggesting post-operative care, rather than the mesh itself, may be the cause of complications [and not the surgeon's skill during the operation]. Their website does emphasise the importance of specialist training and informed consent including discussion of alternatives and suggests that when mesh is used in newer procedures it should only be in the context of a conducted clinical trial with proper ethics and consent procedures. However…there is no requirement for clinicians to follow this advice and the College does not appear to have a monitoring system in place and has no means of enforcing these guidelines…there are no registers of qualified practitioners or mandatory training requirements for use of the product which the RANZCOG says should only be undertaken by surgeons with additional training.This institutional laxity gives free rein to what can perhaps best be described as ‘cowboy and cowgirl’ behaviours; I know women who this week are being offered mesh to treat POP and SUI, whose doctors have not informed them of the risks and whose mesh could be inserted by a general gynaecologist inadequately trained in the use of mesh, not by one of the few sub-specialists in urogynaecology (though it’s unknown if even all of the sub-specialists have been adequately trained in mesh insertion, let alone the highly complex and risky surgery required to remove mesh).
I’ve heard of surgeons who insert mesh in public hospitals and remove it in private hospitals, of many multiple and failed attempts to remove it. I’ve heard stories about general practitioners who misrepresent mesh and who, as surgeons do, discount women’s pain and tell them that the mesh is not what causes their pain and that it’s ‘all in your head, you’re just depressed’. And who Isolate and Ridicule individual women when they – as specialists also do – tell them that their responses to mesh are very unusual or unique, or, as Joanna Russ might define this, 'Anomalous'. There are reports of some general practitioners who are supportive but sometimes powerless against the influence of the specialists who hold more prestige and power. And powerless against the other institutions that women turn to for help when they are unsupportive: Medsafe, the Health and Disability Commissioner, the Accident Compensation Corporation (ACC), the Ministry of Health.
Medsafe is the government organisation that is supposed to protect us from product harm. Although the FDA has expressed deepening concerns about the (ab)use of mesh since 2008, according WHA, Medsafe continues to place mesh in the same class as condoms and to assert that mesh is safe, that the problem is not with the product, and that issues occur only when it is incorrectly used. It has also advised the Minister of Health that–
...surgical mesh products available in New Zealand are manufactured overseas and have met requirements set by reputable regulators in countries with premarket assessment systems.This reliance on FDA in particular, as a ‘reputable regulator’, given the inherent flaws in the 510K process, is dangerous. Veteran women’s health campaigner Sandra Coney, one of the authors of the article that exposed the ‘unfortunate experiment’ posted this the other day on Facebook–
I was on an advisory committee in 1986 which recommended a regulatory system for medical devices - everything from hip replacements to heart valves to IUDs and products like mesh. Nearly 30 years later we still do not have one. It's a disgrace.So what about the Health and Disability Commission (HDC)? This commission was set up following the Cartwright Inquiry into the ‘unfortunate experiment’, to promote and protect the rights of health and disability services consumers, and facilitate the fair, simple, speedy, and efficient resolution of complaints. But it refused an Auckland Women's Health Council request to investigate mesh.
Then there’s the ACC, New Zealand’s only and compulsory provider of accident insurance for all work and non-work injuries. ACC is administered on a no-fault basis. Everyone is eligible for coverage under its scheme, regardless of how they incur an injury– from industrial accidents, to rape and historic sexual abuse, to falls and other accidents at home, to medical misadventure and car accidents.
If ACC accepts a claim, and it has accepted many claims for mesh damage, it provides a range of services: earnings-related compensation and lump sum payments calculated according to disability, treatment – within New Zealand only – that can include treatment for mental as well as physical harm.
Inevitably, the ACC has a symbiotic relationship with the medical profession and this affects the service it might offer Jacqui and others affected by the insertion of mesh – if and when injuries are reported, how they're reported, how they're assessed.
ACC relies on general practitioners and specialists to identify any adverse event that can give rise to an ACC claim, to report that event and to support a claimant's application for compensation. But one surgeon told me that mesh injuries are significantly under-reported to ACC, so that women can present for mesh removal after a long history of mesh-related problems without a claim ever having been made. It's impossible to establish whether this is something to do with gender or the gendered nature of vaginal mesh injuries. Do doctors under-report because they're reluctant to believe the women’s stories? Because they're reluctant to ‘dob in’ fellow practitioners, particularly surgeons? Or both? Or for some other reason? (Jacqui has a very supportive and rigorous general practitioner, but I've listened to other women speak of their experiences and been horrified by the extent to which they haven't been taken seriously.)
Once a claim is made, ACC engages professionals to assess relevant injuries and their causes and to suggest treatment. This too has dangers within any complex bureaucratic system which anyway tends to protect its case managers and their supervisors from accountability. And, given the chronic anti-women practices that exist in every corner of New Zealand's culture it seems unlikely that the ACC is free of behaviors that ‘Isolate’, ‘Silence’, ‘Ignore’, Mis- and Underrepresent’ and 'Withhold Resources' from women with gendered injuries.
To date, about a third of mesh claims have been rejected, because it’s not possible to link mesh insertion to a specific injury and to the presenting symptoms (or assessors and ACC are unwilling to do so). Rejection seems to be especially common when claims link to pain, although there is now – for example – considerable evidence about the connections between mesh and pudendal nerve damage. As I understand it, in complex cases assessors tend to be specialists and, with mesh, from the very small pool of sub-specialists. And where members of this small, identifiable, group insert and remove vaginal mesh and evaluate the adverse results, it's possible to draw parallels with other gendered violations. For example, in Jacqui’s case, where a surgeon violated her with an untested device without her informed consent, any reliance on advice from that surgeon's associates seems to me to be similar to relying on a rapist’s mates to assess his guilt.
The ACC itself can refer clinicians to the Medical Council in the case of a serious event, which results in death or the potential for death, but there's a very high threshold to reach before they will do so. The ACC has referred just one surgeon to the Medical Council in relation to a mesh issue.
Because ACC exists to compensate us, in New Zealand we can sue only for exemplary damages, designed not to compensate the person wronged but to punish the person or persons at fault, including officials, where there are systemic failures. Because of this legal framework, New Zealanders who have sought to join other mesh survivors in suing manufacturers in the United States (globally there are currently 65,000 mesh-related court cases outstanding) have been removed from the suit.
A claimant has to reach a very high threshold to be eligible for exemplary damages, and if successful the damages awarded are likely to be 'moderate' ($20,000 would be nothing to ACC which has probably saved millions by rejecting pain-related claims and to speicalists who have made hundreds of thousands from inserting and removing mesh). Any damages would probably be swallowed up by legal costs anyway (no contingency percentages here). In Couch, our leading case about exemplary damages, I enjoyed Chief Justice Dame Sian Elias' dissenting judgement, because I like to think that she may have been thinking especially of human rights issues like those that face women. This extract outlines the high threshold as it is and argues for what she thinks it should be–
The conduct of the defendant may be outrageous and deserving of denunciation through exemplary damages not because it entails advertent appreciation of risk, but because it should have. It may be outrageous or deserving of denunciation through exemplary damages not because it entailed subjective recklessness as to the harm suffered by the plaintiff, but because it was outrageously indifferent to responsibility. It may be deserving of denunciation through exemplary damages because, even thought the risk to the plaintiff was not foreseen, the conduct of the defendant was outrageously high-handed or cruel or contemptuous. Such cases are likely to be rare. But it would be wrong to renounce the general jurisdiction to award exemplary damages wherever the conduct of the defendant, although outrageous, is not consciously reckless as to risk.The WHA says this about the institutional responses to mesh issues–
...there is no consistent monitoring of its use, communication between [RANZCOG, Medsafe, the Health and Disability Commission and ACC] regarding adverse events is not mandatory, and their definitions of what is an adverse event is not consistent...no system in place which monitors individual clinicians or variations in surgical procedures that might contribute to an adverse event...the use of surgical mesh in New Zealand appears to be destined to become another unfortunate experiment which has had significant, and in some cases, serious consequences on women's health in particular.Immediately after the surgeon inserted Jacqui’s mesh, a nine-hour operation, Jacqui had a staph infection. She learned she would be unable to have sexual intercourse ever again. And her problems got worse. One year after the surgery, she had disabling pain in her abdomen, back and legs. Her urine leaked and her bowels did not function normally.
After three exploratory surgeries Jacqui was told that nothing abnormal could be found and unable to obtain a medical explanation or help in New Zealand, not surprisingly, Jacqui felt she was losing her mind because of the mismatch between what she experienced and what she was told.
Then, online, she found mesh survivors in New Zealand – where the earliest use of mesh I’ve heard of was in 2001 – and around the world. They gave her access to vital information about mesh: what it is and what it does; links to complex scientific papers about the use of mesh and its dangers; how to live with it; which doctors and surgeons to trust. She was no longer alone and without explanations, because all over the world, thousands of women report similar adverse experiences, many of them amplified by deeply flawed consent processes and other debilitating behaviours from surgeons, doctors and regulatory bodies. Together, they’ve taken action– class suits in the United States, petitions to Parliament in Scotland (where the Scottish Health Secretary has requested a suspension in the use of mesh implants by the National Health Service in Scotland, pending safety investigations. ) and in New Zealand earlier this month, where courageous mesh activists Carmel Berry and Charlotte Korte, of Mesh Down Under petitioned Parliament for an inquiry, although they acknowledge that nothing can be done to improve their own quality of life, ruined by mesh. The European Union has started an inquiry. Change is on its way, perhaps.
|Mesh Down Under petitioners before the Health Select Committee, July 2014|
But Jacqui Scott still had her two kinds of mesh. She had extreme pain from pudendal nerve damage. She had limited mobility. She had a compromised immune system. She got shingles. She'd lost her teeth. Her hair was falling out. She suffered from severe depression. She was passing mesh and/or sutures through her bowel. And she suffered from the chronic serial violation caused within the institutions that she turned to for help.
When I first met Jacqui, last December, she showed me stacks of correspondence that she'd engaged with. It was breathtaking to read some of it and to recognise Ignore- and Distract-like strategies that underpinned the compound lack of care that flowed from the medical use of the mesh and through the institutional communications. It was heartbreaking to recognise the effort and resources that appeared to be going into being unhelpful and Withholding Resources from her. In Dame Sian Elias' terms, I believe that the ACC and the surgeons involved in Jacqui's case were 'outrageously indifferent to responsibility' and 'outrageously high-handed...cruel...contemptuous'. And it's amazing that she continued to Breathe, Think, Do, in spite of this.
At least one New Zealand surgeon stated that there was no New Zealand surgeon with the competency to remove Jacqui’s meshes and a number of local surgeons self-identified as not having the necessary expertise. The only surgeon acceptable to Jacqui was not acceptable to her general practitioner, because of the ten to twelve hours' length of the necessary operation. So through her online connections Jacqui identified an American surgeon, a Professor Raz, whose practice consists almost entirely of mesh removal, who is endorsed by many women he has operated on and whose operation times are much shorter. But ACC's legislation does not permit it to pay for overseas treatment. Only the Ministry of Health can do this, through a special fund administered through local health boards.
While continuing to attempt to find a solution via ACC – at one point there was a suggestion that ACC could fund a surgeon to come to New Zealand – last October Jacqui decided to take her concerns to the media and to fundraise to get to the United States. This was a wise move, because ACC then presented Jacqui with a list of four surgeons who could assess her for surgery in New Zealand. Three were men, although ACC knew that after the rape Jacqui finds it difficult to tolerate men near her body. Jacqui’s implanting surgeon – by whom she felt deeply violated and for whom she understandably felt no trust – was one of those on the list. The other three surgeons listed work with him. According to Jacqui, when she pointed out these facts to her ACC case manager, the case manager smirked. This was one of the many occasions when Jacqui felt bullied at ACC.
Jacqui also tried to get help from various members of Parliament. But those she approached consistently referred to a letter from the Minister of Health, who–
...[encourages] Mrs Scott and her GP to continue working with ACC and Hawke’s Bay DHB on this issue.This implied that Ministry of Health funding might be available to send Jacqui to the United States. But that raised problems that go straight back to the compromised nature of New Zealand specialists’ involvement with mesh. As Jacqui wrote to me–
According to ACC [to get Ministry of Health funding] I need to get a surgeon to state that I need the surgery and that it’s the best thing possible for me and that the outcome will guarantee that it will work and it has to come from the Hawkes Bay District Health Board, nowhere else. And it must be a gyne who belongs to the RANZCOG and they are the ones still saying that mesh is safe. So none of them will sign the form, my GP has asked them.By then, through Givealittle and associated fundraising by generous supporters, Jacqui had raised $50,000 of the $138,000 she needed for Dr Raz to remove her mesh, in California. It seemed obvious to me that given her own potential contribution there was space for negotiation, to '[work] with ACC and Hawke’s Bay DHB on this issue' to get Jacqui to Dr Raz. But no. In early July, she was down in Wellington to be examined by a colorectal surgeon. Jess Charlton shot and edited this clip of Jacqui, with her entrepreneurial t-shirts for sale, with her pain, with her files, with her hope, still unfulfilled.
Also in early July, I watched Carmel Berry and Charlotte Korte appear at Parliament in support of their petition, where the Health Select Committee members, drawn from across all parties, seemed to offer good support. ACC and Medsafe seemed to be moving towards taking responsibility for the issue, too.
But, seeing one of the petitioners in obvious pain, I began to consider the role of women in challenging systemic failures that affect women. Why did women suffering from mesh have to take primary responsibility for this work? What role did other women play, within the institutions that were reluctant to take a leadership role to protect women from further harm from vaginal mesh and to rehabilitate and compensate those already harmed? Did they not notice how their work was contributing to the suffering of other women? Did any of them other than Hanifa Koya speak up? I suspect that they did not.
When I wrote to the Ministry of Women’s Affairs early this year, raising the issue of the serial violation Jacqui had experienced, including violation-by-bureaucracy, I believed that because one of the ministry’s four platforms is violence against women, that it would be aware of New Zealand’s history of medical failures in the care of women’s genitalia, that it would understand that Jacqui’s situation was probably not unique, and that it would be concerned and helpful. It was not. I then approached women’s affairs spokespeople from every party and their responses were also unsatisfactory, if they responded at all. Was that because ideas about acute violence – acute violence that can be addressed within the criminal justice system – have become so far removed from ideas about other kinds of violation? From acute violations that women suffer but cannot report to the police, like vaginal mesh insertion without their informed consent, and other chronic behaviours that adversely affect women, within the various cultural systems?
And then I read an article about how women are penalised for advocating for other women. It makes sense that, often, we chicken out. Remember my unexpected and problematic conversation on our zigzag, when I was on my way to fetch a lunchtime treat? That little reminder that chronic sexism is alive and well and close to home? I certainly didn't advocate for the other woman when our neighbour didn't take her seriously. Shocked by his effect on me, I forgot to 'Breathe Think Do' at all. If I had thought, I would still have hesitated to act, or speak, because of the possible longterm consequences.
On reflection, I realised that we're taught to be cautious about advocating for one another from an early age. Abigail Greenwood's Eleven (see it if you can!) shows how even a staunch girl who deals in style with boys who harass her can be drawn into the girl-on-girl relational bullying that many of us engage with from an early age, on one side or the other. 'Breathe Think Do' may lead us to act against other girls or women because we're fearful of ending up on the 'wrong' side for whatever reason– because we need approval, because we need work.
With all this in mind, I went back to Safety in Paradise and to the #nziff website, wondering about the women associated with those systems. First, I watched The Making of Safety in Paradise. It shows that those who framed the women in Safety in Paradise were men, the director and those around him. It shows that women supported the project. One woman associated with Sports Illustrated says 'We need our girls to be doing this'. An agency woman refers to the 'really fun script'. It includes a Cook Islander's support for Safety in Paradise too: 'We're all very passionate about promoting our home town'. Was this clip made primarily to demonstrate that women and 'the locals' approved of Air New Zealand's work and therefore there's nothing wrong with it?
Then I referred to the #nziff website and saw that women are strongly represented among the programmers and on the board. Are they unaware of the global issues around film festival selection of films by women? Do they care? Do they make the selection policies or are they there to endorse the director's ideas and selections, fulfilling the same functions as the women who speak in The Making of Safety in Paradise? Are the women who worked on Safety in Paradise and at the #nziff themselves so unsafe in those environments that they cannot speak out? Are the women who are public servants at Medsafe, ACC and elsewhere also in danger? Certainly Hanifa Koya's experience suggests that women in the medical profession can be.
And a second one.
And I thought, well yes, this is the kind of thing that women in the system have to endure themselves. It would be a miracle if they supported other women.
So who's 'Laila'? And why does that matter? New Zealand's national elections are coming up, and Laila Harré is a former Minister of Women's Affairs, and the leader of the Internet Party, founded and funded by Kim Dotcom and in an alliance with the Mana Party. I was surprised when she was appointed and sent this tweet–
Her response was–
This doesn't of course answer my question, as someone who totally agrees that feminism has to include men (I have no idea why Annie Lennox was included in Laila's response). And I would have tweeted that forming an alliance with a deeply sexist man seemed to endorse him and his behaviour and did not send a positive message to younger men, nor to younger women and girls. But when someone else tweeted 'Cat fight, cat fight over here come and watch', I remembered Dale Spender's words from Women of Ideas and What Men Have Done To Them–
I do not believe that...it is perfectly in order for [women] to start criticising...each other in public forums, for I know, as women have found again and again, that our words will be taken down and used as evidence against us.I withdrew from the conversation, thinking Yes! Invade, Distract, Ridicule, Silence.
These more recent Kim Dotcom tweets show that Laila Harré has as yet been unable to address the gender issues within the Internet Party. And the Internet/Mana Party has yet to respond to the Women's Election Agenda Aotearoa. So I guess that gender issues are not a significant element in their campaign. But if Laila Harré has to endure not only the original tweet but also a personal tweet like the second one, the party cannot be a safe place for young women. Or for young men.
Alliances between women (and the men who support them) contrast with all these examples. There are wonderful global and local alliances between diverse women's film activists, including those many hardworking volunteers who run women's film festivals. But the Mesh Angels and Mesh Warriors around the world provide an outstanding model as they fight against huge odds, many suffering in ways I hope I never have to experience, all day, every day. Their compassion, their hard work, their imagination, their courage, their kindness, their profound sisterhood, even when they disagree, moves and inspires me. They know we need all of us, in all our diversity. How can we draw on their model to make change?
On 31 July, Parliament’s Health Committee issued its interim report on Carmel Berry and Charlotte Korte’s petition. It’s brief and it recommends only ‘that this item of business be reinstated in the new Parliament’, but it lists the main recommendations of the petition itself, including one that recommends creating a register of surgeons properly trained and qualified to use mesh products, with an emphasis on mesh removal skills. The Health Committee also refers to a written submission from Emeritus Professor Don Wilson who recommended–
That all surgeons using mesh be credentialled, as regards their training and ongoing experience, along lines proposed by the Urogynaecological Society of Australasia.The Urogynaecological Society of Australasia’s proposed credentialling does not mention ‘mesh removal skills’.
That all ‘mesh’ surgeons use the Urogynaecological Society of Australasia Pelvic Floor Database, which records all surgery and any complications, and also complete the proposed register.
That any mesh complications be recorded using the International Urogynaecological Association’s classification, to allow comparison between surgeons worldwide.
On 2 August, Jacqui Scott left for the United States to have her mesh removed. She still needed funds for her recovery but she was running out of time.
Jacqui's welcoming committee issued this poster–
And a group turned up to welcome her.
She met Dr Raz.
|Jacqui with Dr Raz|
I cried of course. Accompanied, probably, by those 113 others.
Even once she's home and again eligible for ACC, Jacqui has a long long road to recovery. And she still needs funds. Her aftercare from Dr Raz is far superior than anything New Zealand can offer and she's anyway not yet well enough for that long flight back home. There are two options open to anyone who'd like to contribute, through her Facebook page and her GiveALittle page.
Note on women and 'genitalia'
I struggle with science and its language. (I'm squeamish. It was very very hard to look at images of mesh-related surgery, some of them pinned here with other mesh references.) But I didn't want to use 'reproductive organs' as a collective noun, because women's genitalia are so much more than reproductive, so much more than 'organs'. They are sites that generate emotions associated with pleasure and fear, that generate energy. I learned that the words come from from the Latin genitus, past participle of gignere 'to beget' and asked the fabulous WORKING TITLE [The Concerned Editors' Support Group] whether its members would choose genitals or genitalia.
One response highlighted the general use of 'genitalia' to describe external reproductive organs only. Is it possible, I wondered, that we tend to think of genitalia as external because the word is more often used by and about men and boys, who have more obvious external genitalia than women and girls? Is this another example of underrepresentation of women of a centuries-long appropriation of a gender-neutral term? Is this (mis)use one reason that women's vulvas are so often misnamed as women's vaginas?
I eventually decided on genitalia after remembering paraphernalia and looking up '-alia' and seeing that it means 'denoting items associated with a particular area of activity or interest', which pretty much covers begetting organs external and internal and male and female and the activities that the organs themselves beget, physical and emotional.
And then, at last, I appreciated the link between female genital mutilation and vaginal mesh.
Warm thanks to my readers, whose assistance was ace-and-awesome and very very sisterly. And to the late Irihapeti Ramsden, architect of cultural safety in nursing, for many and varied conversations about what 'safety' might look and feel like. This is also a fine opportunity to acknowledge the alert, talented women who advised and inspired me re the Jade script– Jackie McAuliffe, Johanna Besaw, Madeline McNamara, Michele Amas, Rebecca Barnes.