For those Wheelchair Tango Foxtrot moments
WTF Moments: rebelling against the medical patriarchy
I never thought I’d lead a rebellion on a hospital ward.
It’s shit being in hospital. Hospital food is the least of it. Being woken in the middle of the night to have your blood pressure taken. No real privacy. No time alone. Noise, smells, painful interruptions 24 hours a day. Having to wait in your bay for a consultant to reach your bed, on their schedule, with no indication of whether you’ll wait 16 minutes or 6 hours.
Medicine and the Patriarchy
Where does the patriarchal set-up of UK hospitals originate? The (male, white) General Practitioners who ran cottage hospitals up until the creation of the NHS? The church- (i.e. male-) run institutions of the middle ages?
The paternalistic model of healthcare is deeply rooted in our societal structures. Patriarchy, especially in the medical field, reinforces the power dynamics between doctors (predominantly men) and patients. Patients, particularly women and marginalised groups, including older people, are still expected to passively accept the decisions made by the healthcare providers without much room for discussion or consideration of our preferences or autonomy.
I wish I could say that had changed.
Doctor knows best
I rarely got a satisfactory explanation of the tests they wanted to perform or what they were looking for. Medication, which contains substances I have reactions to, was prescribed without first talking to me. The junior doctor, who eventually appeared to discuss it with me, angrily pointed out that the time she was speaking to me was time she could have spent prescribing medication for another patient (without their knowledge).
Another time, the dosage of an existing medication had been reduced, again without my knowledge. On investigation, I discovered they thought I had only just been put on it for my heart and should have been on an introductory dose. Actually, as they could have seen from NHS Spine, I have been taking the full dose for years, for my skin. I asked what they were going to prescribe instead, to prevent me from breaking out in full-body rashes. No answer, but they put the dose back up, after several itchy days.
Overhead lights were turned off when it suited the nurses, not when patients wanted to sleep — despite each cubicle having its own lights. Mealtimes were rigid and very few people had my level of mobility — or they were deemed too high risk to leave the ward — minimising opportunities to get the food we wanted, at the times we were hungry. Let’s face it, I wasn’t the demographic they were catering for — I am not at all interested in eating liver and onions at 4.30 in the afternoon.
So, the rebellion.
I started with the doctors. The paternalistic nature of the healthcare system extends to how medical information is communicated. Doctors traditionally hold the role of gatekeepers of medical knowledge, and patients are expected to trust and comply with doctors’ recommendations without necessarily being fully informed about their condition or treatment options.
This attitude feeds the medical model of disability, which sees me as an imperfect object to fix. Medicine has its place — after all, I would like it to cure my illness — but it subconsciously influences how the practitioners of medicine think about the people for whom they are caring.
This ‘doctor knows best’ attitude was ingrained in the early hospital system and medical practice, creating a hierarchical structure that often marginalised the voices and agency of patients, especially women and older people, and further reinforced gender-based disparities in healthcare and the cultural impact of the medical model of disability. Despite the ‘no decision about me, without me’ movement, which I have actively supported since I joined the NHS, it felt unchanged.
When doctors visited my cubicle I politely asked them to sit, pointing out the psychological influence of relative height (something I know all too well, as a wheelchair user). The junior doctors were mostly taken aback but complied. The consultants did not. So I stood, despite their protestations, while we had the daily consultation.
The ones who didn’t introduce themselves, or who talked to their colleagues without acknowledging me, I interrupted to request their name (and therefore their attention). I asked questions about the options being considered, the meaning of test results and the potential side effects of medications they were prescribing. I must have had ‘awkward sod’ written on my file, because they did, at least, talk to me before prescribing yet more drugs.
Gender stereotypes in healthcare
Professionally, women have been largely confined to nursing and caregiving duties and not granted equal opportunities for leadership or decision-making positions within these institutions. One male consultant, having heard I work in the NHS, asked if I was a nurse. Worse, he did so with a female physician standing next to him. I wonder how that made her feel.
The nurses were more understanding. Chloe gave me the courage to challenge and ask questions. She and I hit it off immediately, due to her dry wit and wicked mimicry. I knew she was going to be the person who got me through this experience when she woke me at 3am to ask if I was dead, as my heart monitor was showing no heartbeat. It was the gallows humour I desperately needed, so I could laugh, not cry.
Our other regular nurse, Grace, was equally supportive. Greg, who ran the ward, spent a good 30 minutes going through my medical file with me, rather than guarding it from me. The rest of the nurses could have done with learning from those three.
Taking back a degree of control
Chole was the one who told me patients have a right to ask to administer their own medications. I have been managing my complicated medication regime for my multiple exisiting conditions for years. Any change to when it’s taken, dosages or addition of new medication could upset that careful balance that has taken a decade to achieve and requires regular maintentance. This made me defensive about people making changes without discussing it with me, or doling out my medication for me.
So much autonomy had been taken away from me — when I would sleep, where I could go, what treatments and tests I needed, what I could eat and with whom I interacted. Gaining a sense of control over what drugs I was taking, after several nurses thrusting cups of pills at me without telling me what they were, gave me something to hold onto and feel in control of.
Nobody sits you down and says ‘this is what you can do’. They don’t tell you that Amazon can deliver a pack of knickers to your bedside, or that the staff can refrigerate sandwiches and drinks brought in from outside. They don’t tell you that you can open the windows or use your own pillows and blankets. They only tell you what you can’t do.
The paternalism — and my stage in the grief (i.e. change) curve — made me angry. I started doing, rather than asking first. I insisted on wheeling myself in my powered wheelchair, rather than being pushed on a bed, when they transferred me between hospitals for different tests and treatments.
The social model of disability talks of the person being disabled by their environment. It felt like the entire system was trying to disable me. So, garnering what humour and politeness I could manage, I set about dismantling it not just for me, but the others with whom I was sharing the experience.
Gradually, others on the ward started asking their doctors to sit, or stopped tolerating being talked about, not talked to. People got dressed in regular clothes, rather than sitting in their night clothes all day. They asked what medication was, not just passively taking it, and some even started administering their own. We opened the windows. One woman, who hadn’t worn a nightie her entire adult life until now, plucked up the nerve to ask for, and got, pyjamas.
That wasn’t just about her preferences, but dignity. The ‘men’s pyjamas’ — yep, that was on the label — fully covered one’s body. The ‘ladies nighties’ were open backed, to make them easy (read ‘quick’) for the staff to put on a patient. The men were given the dignity of being covered, and the extra effort for the staff to achieve it, while women desperately bunched up their short, flapping gown, hoping not to flash someone on the way to the bathroom. Of course, that required dexterity and mobility. Those using Zimmer frames had no choice but to let it flap. We would deliberately look away.
Facing the future
I’m now out of hospital, with yet another disabling, life-long condition to deal with and even more medication than before. We don’t yet know how my heart was damaged, but over the next few months I’ll share my journey of adjusting to life with a new condition, regaining control, and dismantling barriers. I’ll also return to my series on selecting an electric wheelchair.
I’m looking forward to working with the nurse-led cardiac team who will be there to support and advise, as well as the community I have already built: my physio, GP, long-standing consultants and friends and colleagues from multiple clinical professions. I’ll also be looking at how I, through the systems I manage in my job, can reinforce ‘no decision about me, without me’ and encourage others to rebel, throughout the NHS.
