[Content warning: Medical gaslighting.]
I had a hospital appointment last week, and as the consultant was lazily scrolling through my notes, one phrase stuck out for me: “I refer to you this pleasant 39-year-old”. It was chilling.
What’s wrong with being pleasant?
It’s not that I want to be unpleasant, but why on earth should my pleasantness be a factor in a medical referral at all?
Mention my condition. Age. Clinical history. Things that relate to my condition, acutely or holistically. Things that will affect my care. Someone’s pleasantness should not be something that affects their care. But it turns out: it does. When you’re pleasant, people are more likely to listen to you, treat you with dignity, and persevere to the correct diagnosis.
You don’t have to dig far into the history of disability justice to see this story again and again. If you want the treatment or care that you need as a sick or disabled person, you’ve got to be pleasant about it.
Often it’s not even something that you do that makes someone decide you’re unpleasant; it’s purely who you are. I’m a woman, and immediately that makes it more likely that my pain will be dismissed. However, I’m also white and middle-class, which makes it less likely that I will die in a medical setting.
- Towards a sociological understanding of medical gaslighting in western health care (PubMed)
- Black women in the UK four times more likely to die in pregnancy and childbirth (The Guardian)
- Why the Color of Your Skin Can Affect the Quality of Your Diagnosis – Society to Improve Diagnosis in Medicine
Emotions are unpleasant
I don’t think my next consultant referral letter will call me pleasant. Although I was not audacious enough to seek medical care while black, or even too ostenatiously queer, I did commit another cardinal sin: I showed emotion.
The point of this blog isn’t to go into detail about my own medical journey, but I’ve been dealing with a swallowing problem for several months now, in addition to my ‘normal’ chronic pain and ADHD. I was hospitalised with it earlier in the year, and there have been times when I have become quite dangerously dehydrated. I’m hungry all the time, because I am not able to eat enough food. Most of the medical staff I’ve spoken to about it believe that I have a rare neurological condition called Achalasia.
So when this consultant, a locum, was hugely reluctant to refer me on for the test that the NHS’s own information told me I needed, I got upset. I wasn’t wilfully rude because I thought it might be fun; I cried because I was struggling to cope. I was sad, and I was worried.
I’m not telling you this to elicit any kind of sympathy. In fact, I don’t want your sympathy. What I want is justice.
This is something that sick and disabled people experience all the time. It comes down to two choices: be pleasant, passive and ultimately powerless – hoping people will feel enough sympathy to give you what you need – or advocate for your own needs by being direct and demanding – and become written off as ‘difficult’.
What does this mean for digital accessibility?
This blog is supposed to be about tech stuff though, right?
Well, the thing about designing content for humans is that you have to do that in full consideration of their humanity.
When people ask for accessible content, whether it’s a navigable site, good alt text, visual contrast, or readable content, they don’t have to be pleasant about it, and they don’t have to sit back and hope that you will eventually feel enough sympathy for them to provide access.
Not having that access causes them pain, and they are allowed to be direct, and demanding, in asking for you to take that pain away.
Justice is not built on niceness
I will continue to be pleasant when appropriate. I would hope that anyone who knows me agrees that I’m a kind, friendly, compassionate person.
But it’s not compassion that drives my work in accessibility. It’s justice – and we shouldn’t confuse the two.