In the span of two weeks, I journeyed to London and to southern Utah’s Zion National Park.
London allowed me to spend quality time with dynamic myth busters and powerhouses. They included: Katy Lindemann of Uber Barrens Club; Susan Bewley, co-organizer of the ‘Defining Abuse in Assisted Reproductive Technology’ workshop; author and arts producer Jessica Hepburn; and author Lesley Pyne.
Myth Busters In the Flesh
What a thrill to finally meet — face to face — women who inspire and fearlessly myth bust. In three days I feasted on the perspectives and insights they offered. Take Katy, who met me at the Shard for drinks. She wrote the must-read Infertility and the tyranny of positivity: Why you don’t have to join the cult of positive thinking when you’re struggling to have a baby. In it she notes:
Whenever people talk about infertility, any meaningful acknowledgement of the deep emotional distress it causes seems utterly conspicuous by its absence.”
Then there’s Emeritus Professor Susan Bewley. She witnessed the first women to die after IVF and has since written about the adverse outcomes from IVF. We talked at length, in the quiet beauty of Westminster Abbey’s Terrace cafe, about what she wanted to achieve with the workshop. Here is an excerpt from her most recent remarks about the harms caused by IVF:
We must consider harms from the incessant hype, the persuasive language, the lies and ‘crimes against language’. The metaphorical slaps like ‘you wouldn’t want to regret not trying everything’… Or misleading terms like ‘Egg sharing’. You can’t ‘share’ an egg. You can’t cut it in half. It’s sold or bartered, sometimes for money, other times to afford a treatment.”
Speaking Truth to Power About Our Stories
Read Susan’s entire script, Abuse and exploitation: ‘It’s an open secret in the IVF business’ on our sister website, ReproTechTruths.
Jessica and I spent three hours in a Marylebone pub after a rain dampened plans for a walk. We discussed the lasting impacts infertility and failed IVF had on our lives and our relationships. We debated how to best hold the industry to account. Equally important, we both highlighted the need for realistic portrayals of women who do not go on to become mothers. We could have spent three months discussing these and related topics.
Lesley, during our workshop break, reiterated the importance of support and validation to heal from failed IVF. Equally important, as she wrote:
Owning my story and telling it openly, has enabled me to integrate it into my life, and without this big secret many of my friendships are now deeper.”
Silent No More
The silencing we’ve experienced, sadly, gave rise to abuse. It’s not easy to right 40 years of wrongs. A recent commenter on our Facebook page wrote this in response to the question: why has it fallen to patients to push back against IVF abuse?
1. Because within the hospitals there is a fear culture and it is considered prohibited to confront a colleague.
2. In private clinics it is about production (also within the public institutions) which translates into money so the patient is only as good as the amount of treatments sold, and often sold false hope to continue selling treatments.
3. It is widely understood that the patient is often emotionally broken and financially strapped so the idea of a lawsuit becomes even more daunting.
With so much to think about there was no better place than Zion National Park — a wonder to behold — to celebrate my birthday. The park provided a stillness and magnificence to consider all the ideas and issues raised in London. More to follow as I further digest and review what the myth busters had to offer.
Meanwhile, check out this thought-provoking talk by Miriam Zoll — another myth-busting educator and activist.
As always, welcome your thoughts.