Why Do Women Still Have To Fight For Answers About Their Health?

Artist and ovarian cancer survivor Camille Baker is calling for an end to “silence and inconsistencies”.

When Camille Baker was diagnosed with ovarian cancer at 49, doctors had one piece of advice: “take it all out”. But what would the long-term impact of having a full hysterectomy be?

The artist’s cancer had been found incredibly early, at stage 1A, and she wanted more information on the pros and cons of surgery. Instead, she hit a wall of “silence and inconsistencies”. There’s not enough reliable research available for women to make informed, life-changing decisions about their health, she says.

While Baker’s cancer doctors were focussed on removing the cancer, a private hormone specialist highlighted the risks of a sudden oestrogen drop, including an increased risk of dementia, osteoporosis and heart disease.

“It’s not holistic,” Baker says of women’s healthcare. “Maybe they don’t think about women because they’ve got a focus on ‘the standard body’, as [author] Caroline Criado Perez says, which is a male body.

“Our bodies are so much more complicated and problematic. The short answer was ‘you’re not having children at 49, so just take it all out’, but it’s so much more nuanced than that.”

Eventually, Baker decided to have both ovaries removed, instead of a full hysterectomy. Now, she’s launching an interactive installation to call for improvements in women’s reproductive healthcare.

Artist Camille Baker, who was diagnosed with ovarian cancer aged 49.
Artist Camille Baker, who was diagnosed with ovarian cancer aged 49.

Baker’s project, INTER/her, explores female reproductive diseases through a feminist lens. It takes visitors on a journey through the human body, where they enter a womb-like tent, before putting on a virtual headset and travelling through the body to the vaginal canal, cervix, ovaries and fallopian tubes.

At each stage of the journey, visitors hear real women’s experiences of conditions including cervical cancer, fibroids, polyps and endometriosis. Between the stories, there’s the sound of a heartbeat.

Finally, the virtual tour comes to a white void and there’s a story about a hysterectomy. Visitors are left to feel like they’ve woken up in a hospital bed.

Camille Baker

The installation is fully immersive, with visitors invited to wear a ‘haptic corset’ before entering the tent, which vibrates in different locations on the lower abdomen with different intensities and patterns.

Baker says the stories highlight the physical pain of reproductive diseases, as well as the emotional impact and impossible decisions women are often forced to make. It’s inspired by her own experience of the UK healthcare system, but also the women she met throughout her treatment, including two women who were on her ward after surgery. Both women had undergone full hysterectomies, without doctors informing them of the long-term implications.

A visitor of the virtual experience (left) and the haptic corset (right)
A visitor of the virtual experience (left) and the haptic corset (right)

“INTER/her is meant to be a conversation starter to get people to think about their bodies, do research and ask questions,” says Baker. “Don’t take only one answer, get a second opinion and push the medical community to care about women’s bodies. There’s so much more research that could be done.”

Baker interviewed a number of women about their experiences and also took stories from books and forums, with voice actors recording the audio.

As part of her research, the artist, who’s Canadian but has lived in the UK for 14 years, spoke to a nurse through the charity Target Ovarian Cancer. The nurse told her British women are particularly squeamish about “embarrassing” symptoms, and this stops many from asking questions and seeking help.

The INTER/her tent.
The INTER/her tent.

When researching, Baker also heard stories among her own family that they’d previously kept quiet, due to stigma. In the 1960s, her grandmother apparently went into hospital to have her appendix removed, but woke up to discover doctors had performed a full hysterectomy, without her prior consent.

Although things have changed since then, a cousin also revealed she’d had 11 surgeries in a bid to tackle endometriosis. She said pain from the condition, plus time off for surgery and recovery, had ruined much of her career.

Baker says the main aim of the project is to tell women: “If there’s something going on, check it out, don’t wait”.

“And don’t settle on only one opinion if you don’t feel comfortable with that opinion,” she adds. “Go and look into it, research it, talk to other women, ask questions and try to figure out what those questions are, because doctors will only tell you what you ask them.”

INTER/her is at The Brewery Tap UCA Project Space, Folkestone, from June 23 to July 4. Tickets are available for a 40-minute slot, for up to three people from the same family or support bubble. INTER/her will also be available online at EVA Conference and Exhibition, London, on July 9.

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