By Freya. @FreyaVanadiss

Recently, there were three news stories that shone a light on just how dangerous it is to be a woman who needs any sort of healthcare. Firstly, Dr Em published her research on how rape and sexual abuse of vulnerable care home patients is rife, after reading of a recent case where a male care worker impregnated a woman in a psychiatric hospital. The woman gave birth, and her child was taken away: even more disturbingly, the man’s family may well end up with custody and he is currently allowed access to the child while the mother and maternal grandparents are not.

Then there was The Guardian’s explosive article sharing a study that showed women are 32% more likely to die after an operation by a male surgeon, a phenomenon that may be due to ‘implicit sex biases’. Finally, the Daily Mail shared the story of Porsche McGregor-Sims, a young woman who died after doctors failed to examine her properly and minimised her symptoms, which turned out to be due to cervical cancer.

For women with disabilities and chronic illnesses, none of this is a surprise, even if it does feel like a punch to the gut every time a new story is shared. I don’t think any woman who has hit puberty would be surprised that a male doctor blamed a woman’s gynaecological symptoms on ‘hormones’ and dismissed her. The outcry over the past two years of the medical gaslighting of women within gynaecological care has been illuminating although belated, and watching this video recently shared by Hysteroscopy Action, of four male gynaecologists discussing how a woman’s pain helps tell you you’re doing your job properly, summed up the experience so many of us have had. But this is something disabled women have been talking about for years, decades even. Why is it then, that our voices are not being heard?

I remember the first time I realised that being female in the presence of a male doctor meant that I was going to be uncomfortable. I was just entering puberty and dealing with a lot of back pain. My parents took me to the local doctor’s surgery where the male GP quite literally pulled me up to standing, turned me around and yanked my top up to examine me, without even a simple “Do you mind?” I remember covering my budding chest with my arms and feeling violated – even though I didn’t have the words for why.

Then there was the time I started having gynaecological pain and bleeding, and begged the GP to do a smear test. He refused because I was apparently too young at 21, and instead spent months running STI tests because he simply didn’t believe me – or the negative tests that said I didn’t have an STI. Every two weeks for months I would lie down on the examination bed and dissociate from my body as he forced the huge metal speculum inside me to find where this supposed STI had hidden. Every time, I wouldn’t be able to contain my reaction to the pain and he would say “Oh sorry, I forgot” as he continued scraping my cervix and surrounding area.

Ultimately I was lucky – I had private healthcare thanks to my mum’s job so made a private appointment with a female gynaecologist who diagnosed me correctly in the first visit (not with an STI as I said all along) and ran a smear test ‘just in case’ with a small, plastic speculum I could barely feel (“I’m good at this!” she winked at me as I cried in relief). Within no time at all, I had a treatment plan and was booked in for an operation to remove a dangerous cyst.

Finally, there was the chronic pain I had been experiencing since that first GP visit as a pubescent teenager, which had got worse and worse and left me struggling to work and socialise. Various incidents had increased the pain – an extremely violent relationship at 19, a car accident at 21, and a fall off a horse that broke my back at 23. The most common response from the mostly male doctors I saw was that it was either my fault for not exercising enough, or that it was ‘all in my head’.

I have been discharged from A&E at 2am in so much pain I could not walk, without pain relief. I have been diagnosed as depressed, as anxious, and as having a personality disorder – a diagnosis that not only carries a tonne of stigma, but that I am still fighting to have removed from my records. To this day, I get panic attacks when I need to make a doctor’s appointment in case they send me back to a psychiatrist or tell me I can’t have pain relief. The cruel, awful reality is that the medical profession still sees women as hysterical: as having bodies that are ruled by unstable emotions and a reproductive system that is a medical mystery. Textbooks use the male body as default, and the menopause isn’t even a mandatory module for med students. Add in a disability – which can take years to diagnose – and we become even more invisible.

The police and CPS won’t prosecute those that rape us, because our disability means that they don’t trust our memories or our interpretation of events. A cursory Google of ‘sexual abuse care homes’ brings up pages and pages of news articles about women in care homes and hospitals giving birth after being raped; of male carers abusing women with learning disabilities, with autism, or with severe mental health issues. Male staff in psychiatric hospitals are raping and abusing women and getting away with it. Just today the Daily Mail published another article about three male care workers jailed for dragging a woman by the hair, kneeling on her and smashing her head on the floor, shouting racial slurs and barking at other victims. This behaviour was ignored, normalised, and allowed to continue for years because disabled people, especially women, are dehumanised from the very start of our care needs.

Women right now are understandably pushing back against the erosion of single-sex spaces and the dehumanising language being used to describe us. But this is not new. Disabled women have never had single-sex medical care. We have never had single-sex wards or care homes. We have had to learn to dissociate from our bodies – to not demand better treatment or care in case we are seen as hostile or difficult. To not have a choice as to whose hands touch us or who we are left alone with. We have always had others speak for us and about us, and I do not know a single woman who hasn’t had physical symptoms dismissed as being caused by her ‘emotions’. It’s exhausting, and has left many of us with PTSD symptoms that are added to our ‘unstable personality traits’ as some kind of personal failing.

When it comes to health and women, our voices are the ones that need to be heard but are far too often ignored. During the pandemic, disabled women with higher support needs were 91% more likely to die than their non-disabled peers. Disabled women overall were twice as likely to die. 60% of all Covid deaths were of disabled people – those of us with ‘underlying conditions’ which has become the polite way of saying ‘their deaths don’t matter’.

We matter. Our experiences matter. As Dr Em said in her article, we need serious change in culture, in policy, and in healthcare as a whole. If you want to see the stark reality of what men think about women, just look at how they treat the most vulnerable of us.