(In)fertility, parenthood and the fertility fight club: a review of Fertility Fest 2018

Last week saw dozens of researchers, scientists, artists, fertility patients, regulators, and campaigners come together for ‘Fertility Fest 2018’ which was organised by Jessica Hepburn and Gabby Vautier. The week-long programme of events brought together 150 artists and fertility experts for the second arts festival of its kind which was dedicated to the discussion of fertility, infertility, modern families and the science of making babies. Unable to attend the festival in its entirety I arrived at the Bush Theatre on Friday 11th to enjoy the packed schedule provided. The morning session offered parallel streams examining the personal experience of using fertility medicine to conceive (The Doctor in the Bedroom), the often-marginalised male experience of infertility (The Invisible Man), and the embodied experience of infertility and reproductive loss (Fertility and the Body). This latter stream included a performance lecture from Shantel Ehrenberg, an academic and performer from the University of Surrey. Ehrenberg’s work titled ‘(In)fertile Territories’ explored her personal experience of becoming childless by circumstance following a diagnosis of sub-fertility with a high Follicle Stimulating Hormone (FSH) at the age of 32. Over the very gentle hum and echo of an ultrasound, Ehrenberg’s piece explored the embodied experience of an uncertain and unexpected fertility diagnosis and examined how the ‘hard and objective data’ mined from her body in the form of fertility assessments contrasted with her ‘soft subjective body’ which nevertheless longed-for motherhood. Drawing on scholarly academic work from across the social sciences, Ehrenberg echoed the concerns and anguish of many other women who experience infertility including a sense of loss and failure. She described how her expectations of future motherhood were shattered through the pelvic ultrasound images provided to her by her fertility doctor who explained her poor chance of genetic motherhood due to her compromised ovarian function. In noting a contradiction between her own personal desires for motherhood and her biological reality, she described how the result of her fertility tests indicated to her ‘what kind of woman’ her body told her she was, or would be; one without children of her own. For Ehrenberg, like many women who suffer from premature menopause, her diagnosis resulted in what she described as a ‘tectonic shift’ in her internalised self-identity and threw her preconceived ideas about how her life would unfold in to a state of flux. Drawing on the academic work of Sarah Franklin and Gayle Letherby, she described how this feeling was made particularly acute by a culture which continues to equate motherhood with womanhood. Furthermore, she noted how the failures of her body served to set her apart from glowing media images of pregnant women such as Demi-More, Beyonce, and Princess Diana who embodied hegemonic ideals of femininity in way which was now outside of her reach. As well as situating her embodied experience of infertility alongside socio-anthropological academic literature, Ehrenberg also shared these through a series of powerful bodily movements which appeared to reflect a sense of powerlessness, a loss of control and which connoted ideas of the empty-armed non-mother who housed a disobedient body unwilling or unable to produce the expected and anticipated gift of motherhood.

Dr Shantel Ehrenberg during her performance lecture ‘(In)fertile Territories’

In the afternoon I attended the stream on ‘The Business of Fertility’. This session questioned whether the ‘fertility industry’ at large was doing enough to support and meet the needs of IVF patients and customers especially as they profited from, what another speaker referred to as, the ‘emotional, physical and financial torture’ of infertility. Sharing two scenes from her upcoming play ‘Genesis Inc.’, the writer Jemma Kennedy quickly and convincingly showed the tension and negative impact IVF treatment can have on intimate relationships and highlighted the often-gendered burden of IVF treatment on men and women. Kennedy also shared her own experience of ‘social’ egg freezing, a technology which she drew upon to preserve her reproductive potential following the breakdown of her relationship. She commented that the intensity of her broken relationship and anxieties about the future meant that she spent several thousand pounds on a technology that is only likely to provide her a 5% chance of future pregnancy. As she underwent the procedure alone, without a partner, and during a distressing phase in her life, Kennedy commented that she did not ask the requisite questions about the technology to enable her to be sufficiently informed about how likely it would be in providing her a live birth in the future. She described how, at the time, it did not occur to her to ask her clinic if they had experience in achieving a live birth from frozen eggs, or how many eggs she may produce following stimulation, and how many she would need to have a realistic chance of motherhood in the future. She commented that she therefore believed counselling to be important not only for women and couples attempting a conception immediately, but also for those making use of technologies such as egg freezing. Kennedy’s assertion about the importance of counselling for users of egg freezing is without a doubt correct and, as our research on egg freezing has shown, she is not alone in the ambivalent and uncertain experience and relationship she had with egg freezing nor the uncertainty she shared about whether the technology will ever help her to realise motherhood. Echoing the findings of our research on this topic, Kennedy explained that even if she had known that her frozen eggs would only give her a further 5% chance of motherhood she would still most likely have gone ahead with the procedure. This was in-part because she wanted to know she had, in some way, increased her chances of motherhood in the future even if only by a fraction. Nevertheless, as authors have argued elsewhere, much more information and transparency is needed with regards to individual women’s likelihood of success using frozen eggs to conceive, as well as how many rounds of stimulation and retrieval she may require to undergo to collect a sufficient number of eggs for freezing.

Jemma Kennedy talking about her stage play and experience of egg freezing

Whilst all the sessions I attended at the festival were thought provoking and engaging, I particularly enjoyed the play ‘Eggistentialism’ by Joanne Ryan which was on in the evening (a review of which can be found here), and the ‘Fertility Fight Club’ part of the day. For the un-inducted, the Fertility Fight Club ran on the Friday, Saturday and Sunday, each time with different contributors who were passionate about the topic of which they spoke. Each speaker had a ‘round’ of 10 minutes to get a particular issue ‘off their chest’ and convey to the audience the key information they wanted them to know and understand. Friday’s session began with Joyce Harper who talked passionately about IVF ‘add-ons’ and asked patients: ‘Why are you paying for unproven fertility treatments?’. Similar to another talk I recently attended at the fertility show in Manchester delivered by Kate Brian, Harper began by discussing the hierarchy of evidence noting how many treatment ‘add-ons’ have not been proven to be effective in randomised control trials which she described as the best and most reliable form of evidence. Sharing details of the traffic light system she helped implement she implored fertility patients to ask for evidence for any treatment ‘add on’ they are offered. Harper’s talk was, as always, lively and engaging however questions remain about how we even define a fertility treatment ‘add-on’. Should we, for example, consider treatments such as acupuncture and reflexology as fertility treatment ‘add-ons’ especially given the rate that these treatments are often taken up by fertility patients? And would providers of these treatments, like the providers of more high-tech ‘add-ons’, be able to substantiate any claims they make about increasing the success rates of IVF.

Prof Joyce Harper in the first ’round’ of the ‘Fertility Fight Club’

The second round of the fight club heard from Sheridan Voysey who after being diagnosed with male factor infertility underwent repeated rounds of unsuccessful IVF treatment with his wife and who after 10 years of trying to create a family had to relinquish his desire for fatherhood. Voysey, who documented his experience coming to terms with unwanted childlessness in his book ‘Resurrection year’, shared the perils of ‘coming out’ as an infertile couple or person in the public eye. He described how he personally became the target of online abuse and often had his experience of infertility and unwanted childlessness dismissed by unkind readers who repeatedly berated him to ‘just adopt’. He noted how the process of adoption was by no means simple and had also not resulted in him and his partner becoming parents. Voysey also described other hurtful and highly gendered comments he received including readers telling him to ‘man-up’ about his infertility thereby trivialising his experience of unwanted childlessness and further devaluing the pain he felt as a childless man. Voysey therefore wanted people who were struggling to conceive to have their feelings of disappointment and loss validated and not diminished by the suggestion that an infertile couple or person should ‘just adopt’. Instead he suggested that well-meaning individuals could instead ask a couple struggling to conceive ‘whether adoption could be a possibility’ for them, whilst remembering that the process of adoption is not easy and does not guarantee parenthood.

The third speaker was Dr Zeynep Gurtin from the London Women’s Clinic who spoke about social egg freezing. Echoing the findings of our research on egg freezing, Gurtin described how users of this technology were not seeking out the technology to deliberately postpone or delay motherhood. Instead she described how women’s use of this technology was shaped by their lack of a suitable partner. Furthermore, Gurtin articulated how women felt significant fear and pressure to find a partner to have a child as they entered the final years of their fertility. Such a finding reflects that from our research recently reported in The Conversation. Here we detailed how women sought to freeze eggs so not to engage in what we have termed ‘panic partnering’ that is, entering into a relationship with a partner they would not have otherwise chosen, simply to prevent unwanted childlessness in the future.

The final speaker was the theatre director and IVF mother Sarah Esdaile, who gave a passionate and rousing talk about how ‘mother is a verb’. Esdaile became a mother following egg donation and described how she had received negative comments from others asking her about the ‘real’ mother of her daughter. She described how motherhood is not about conceiving, carrying, or birthing genetically related offspring but is found in the love and care a person provides to an often very much wanted child. Similar to Jemma Kennedy in the earlier session, Esdaile underlined the importance of counselling for those undergoing IVF, and described how the sessions she had with her counsellor helped prepare her for the birth of her much wanted and treasured daughter.

Kylie Baldwin

The play ‘Genesis Inc.’ featuring Harry Enfield is running at the Hampstead Theatre between the 22^nd and the 28^th July.

 

 

Considering motherhood, ‘Eggistentialism’ and the gendered inequalities of parenting.

The upcoming fertility-fest organised by Jessica Hepburn has the CRR buzzing with excitement, the wide variety of speakers and exhibits on topics which many of us have spent several years researching is a rare treat for us as academics. I was however recently lucky enough to get something of a sneak peek at one of the acts presenting at the festival; the stage play by Joanne Ryan called ‘Eggistentialism’.

Conceived during an ice breaker at a theatre development scheme, and reflecting the thoughts and feelings of many women in their 30s, the play sees Ryan share her ambivalences about the possible role which motherhood may one-day play in her life. Musing on her own reproductive future the play examines the sexual as well as social politics of contemporary motherhood and through the use of an animated slide slow, maps key moments in the history of Ireland between 1916 and 2017. With a focus on the politics of the family, reproduction and sexual relationships, the play examines emotive and distressing topics such as the forcible removal of babies from unmarried mothers, poor access to reproductive and sex education for young people, repressive legal barriers to contraceptive technologies, and the denial of access to safe and legal abortions for tens of thousands of women in Ireland which still continues today.

In the play Ryan draws a comparison between the reproductive and mothering experiences of the older women in her family and herself. In doing so, she notes how the comparatively liberal experiences of her generation who had access to reliable contraception and seemingly egalitarian relationships with intimate partners, has meant that she is now part of the first generation of women for whom the experience of motherhood is not considered a simple inevitability, but a ‘choice’ which she is able, but also required, to make for herself.

The play begins with Ryan waking up on her 35^th birthday with the hangover from hell, the type of hangover which makes you question your life choices, and the decision about whether she wants to become a mother rests firmly at the forefront of her mind. Aware of her advancing age, and fearful that she may not have ‘enough eggs left over to make an omelette’, like many women before her she takes to the internet for advice about her fertility and possibility of motherhood in the future. What results is a particularly funny skit which sees Joanne’s computer screen quickly overrun by alarmist media headlines about fertility decline and older motherhood which cascade before the audiences’ eyes to the rumbling overture of Carl Orff’s Carmina Burana. Finding that the decision about whether or not to become a mother has not yet been made for her by ‘Mother Nature’, Ryan decides to undergo an ovarian reserve test to assess the state of her fertility and is told that she is still within the normal range for a woman of her age. With no moment of clarity provided by the results of these tests, Ryan ponders what her life would look like should she remain childfree. She concludes that she wouldn’t need to have a child in order to experience fulfilment and happiness but remains anxious about the thought of entering old age without building a ‘legacy’ and a family who could care for her should she become unwell or infirm. She also notes how despite growing numbers of women coming to the end of their fertile lives without becoming a mother, the language used to describe such women often remains derogatory (selfish, shallow, bitter, self-absorbed) with connotations of incompleteness and lacking in essential qualities of femininity; such a fact troubles Ryan.

However, Ryan’s personal ambivalence about motherhood appears to centre on what she perceives as the pressures of modern day motherhood, remarking that during her grandmother’s lifetime keeping a child alive, well fed, and warm appeared to be the extent of a woman’s mothering responsibilities. By contrast she notes how contemporary motherhood is characterised by what she describes as an ‘endless triage of difficult decisions a woman is constantly judged for’. Evoking the notion of the ‘mummy wars’, it appears that Ryan’s ambivalence about motherhood is at least in part shaped by her anticipation of engaging in, or being required to engage in, a process of intensive mothering (Hays, 1998; Baldwin, 2017). This expectation of mothering intensively leads Ryan to note how becoming a mother would almost certainly see the end of her much beloved ‘city breaks’ as the demands of motherhood would require not only a complete reorganisation and reorientation of her life, but would also entail a high degree of personal sacrifice and altruism in putting the needs of her child before her own. The perceived demands of motherhood also lead Ryan to worry about ‘losing herself’ in the process of becoming a mother.  Most significantly however Ryan notes how the transition to motherhood would change her life completely as the burdens of raising a child would more than likely fall disproportionately on her shoulders, by comparison she notes that for her partner Rob, it would be ‘business as usual’.

The fear that the burden of parenting, and other associated domestic tasks, would fall disproportionately to her is perhaps not unwarranted given the context in which she makes her decision. After all, it was only in 2016 that men in Ireland were first able to take state mandated paternity leave (with shared parental leave still not available), and whilst maternity leave is accessible for many women, it is often only paid at a statutory rate with employers not required to top up women’s income as seen in England. Ryan also cites statistics which paint a depressing picture of the low rate of Irish men’s involvement in domestic tasks and in the delivery of unpaid care. This leads her to fear that should she and Rob decide to become parents, the egalitarian relationship which they have enjoyed thus far would be disrupted with Rob being applauded for ‘babysitting’ his own child whilst she faces her career being side-lined and independence marginalised. In raising these issues Ryan recognises the deep gendered inequalities parenting can bring to a previously equal intimate relationship which Ryan is perhaps the first in her family to enjoy.

I am not going to spoil the ending of the play for you by divulging what Ryan eventually decides, you will have to attend the Fertility Fest to see for yourself, but I can thoroughly recommend the play as a wonderful mix of both a hilarious stand-up routine and a personal monologue which is emotionally honest, intelligent but also highly engaging and entertaining.

‘Existentialism’ is running at the Bush Theatre on Friday 11^th and Saturday 12^th May, for more details see https://www.fertilityfest.com/ or follow @eggsplay on Twitter.

References

HAYS, S. (1998) The cultural contradictions of motherhood: Yale University Press.

BALDWIN, K. (2017) ‘I suppose I think to myself, that’s the best way to be a mother’: how ideologies of parenthood shape women’s reproductive intentions and their use of social egg freezing.  Sociological Research Online 22 (2), 1-15

 By Dr Kylie Baldwin, Senior Lecturer

The Story of An Accidental Infertile by Jessica Hepburn

This month we are launching our Centre blog which will be used to share work, advertise events and most importantly, to generate discussion and dialogue. For our inaugural post, we invited January’s guest speaker Jessica Hepburn, to tell our readers about her experience as a public figure in the world of fertility and what she thinks needs to change to improve things for patients and the public in the future. Jessica is one of the UK’s leading patient voices on infertility and founder of Fertility Fest the world’s first arts festival dedicated to fertility, infertility and the science of making babies.

*                                                     *                                                           *

Standing at the front of the classroom at the Centre for Reproduction Research in January, I thought how far I had come. Four years ago, almost to the day, my first book The Pursuit of Motherhood had been published and since then my life has changed completely. For years, I had been very secretive about my struggle to conceive. Publicly I was a successful ‘career woman’ (that terrible term that is never used to describe men). I ran a large theatre in London. But privately I was desperately trying to become a mother going through round after round of unsuccessful IVF.

I contemplated bringing my book out under a pseudonym. I knew it was a story that needed to be told, but I wasn’t sure whether I was strong enough to face the stigma and shame associated with infertility. I was going to call myself ‘Jessica Harper’ but then my editor did a Google search and discovered there was someone of that name who had just defrauded Lloyds Bank of millions of pounds. It wasn’t worth the mix up.

So I ‘came out’. I became a public infertile. And it’s been ok, not only because being honest about my own experience has made things better for me and those around me –  because secrecy and shame can be toxic – but also because it’s enabled me to campaign to make a better world for fertility and infertility. And this May my second book will be published: 21 Miles: Swimming in search of the meaning of motherhood. It’s the story of one woman (me!) who ate 21 meals with 21 women and then swam 21 miles to answer the question: does motherhood make you happy? You can watch the trailer here: https://unbound.com/books/21-miles/

My work in the sector has taken a number of forms in addition to writing including being a trustee of the national charity Fertility Network UK, a patient adviser to the Human Fertilisation and Embryology Authority and hosting the Q&A stage of the Fertility Show in London and Manchester. It sometimes bemuses me that the black-sheep of the fertility industry (me again!) is welcomed in these arenas which are dedicated to supporting people to achieve their dreams of a family. But I do think there is more and more recognition that IVF, whilst being a modern miracle, isn’t a magic bullet. It doesn’t work every time for everyone and it’s important that there is better understanding of that as well as the psychological impact of going through treatment. But at the same time the science does offer remarkable routes to parenthood, both for people who are fully fertile (single women, the LGBTQ+ community) and for couples struggling with infertility and sub fertility. And the opportunities that the science might offer for the way the human race is made are developing all the time. We need to talk more as a society about all aspects of human fertility and reproductive science – what it can and cannot do and how people can best make the families they want, with (or without!) children.

In 2016, I brought my two worlds of the arts and fertility together and founded Fertility Fest – the world’s first arts festival dedicated to fertility, infertility, modern families and the science of making babies.  It will be back in May for its second edition at the Bush Theatre in London (8 – 13^th May www.fertilityfest.com). Six days, forty events and 150 artists and fertility experts in a unique programme of events, entertainment, discussion, debate, support and solidarity. I’m delighted that Professor Nicky Hudson from De Montfort University has agreed to be one of our fertility experts in our session ‘The Gift’ which will look at the light and dark sides of egg, sperm and embryo donation.

The festival has three big aims:

• To use the power of the arts to improve the understanding of the emotional journey of the fertility patient in order to ensure better patient care and outcomes;
• To improve the level of public discourse about all aspects of reproductive science;
• To improve fertility education.

I believe that the next generation deserves a more rounded and robust understanding of their fertility. They shouldn’t just be taught how ‘not to get pregnant’ and our project, Modern Families, which launches at the end of February aims to influence the current consultation that is being undertaken into the PSHE curriculum following the introduction of compulsory Relationship and Sex Education in schools – you can read more about it on our website here: https://www.fertilityfest.com/the-modern-families-project.

The festival programme will be exploring things like ‘The Doctor In The Bedroom’ (what it really feels like to conceive through reproductive science); ‘The Invisible Man’ (on the still little discussed issue of the male experience of infertility). We’ll also be looking at the aftermath of unsuccessful treatment in sessions such as  ‘When ART doesn’t work’ as well as parenting after IVF in ‘No Longer Extraordinary’ – because does the experience of struggling to conceive ever leave you? We’ll also be tackling some big societal questions like ‘What Comes First The Career Or The Egg?’, ‘Race, Religion and Reproduction’ and ‘The Future of Fertility.’

And new for this year, we have a series of sessions called ‘Fertility Fight Club’ in which artists and fertility experts will take to the stage to argue for something they want to change about the world of fertility. These sessions will be live-streamed so if you can’t join us in person, you can watch and participate from the comfort of your armchair wherever you are in the world.

But I hope you can join us in person. Tickets are on sale now. The festival is for everyone and anyone and you won’t find another event in the fertility calendar like it. It’s for patients at all stages of their fertility journey. It’s for fertility professionals (scientists, clinicians, and academics). And it’s for people who are just plain curious about the subject and want to learn more. Crucially it’s for people with and without children because we all have a fertility story. I may be an accidental infertile. It’s certainly not something I ever planned for or wanted. But now I’m here let’s talk about it because this is how the human race is being made (and sometimes not being made) today.

www.jessicahepburn.com

http://www.fertilityfest.com