I was chastised this morning on Twitter and told I ‘need to read this article again’ in that imperious tone that academics sometimes use to express their own righteousness over someone they consider to be less able and educated than them.
The article in question is this from the Wellcome Trust.
I’m so angry (not really about the tweet, about the article) that this blog post may not make much sense so feel free to abandon ship.
The article describes how public health campaigns, circa 60-100 years ago, are guilty of perpetrating able-ism against disabled people. Disabled people, it argues, “display the spectrum of human difference”. They’re not errant, or broken or wrong, simply, different. To suggest otherwise is to stigmatise them.
These posters are ‘problematic’ apparently because they portray a sense of guilt and shame that accompanies the acquisition of an illness, thus stigmatising the patient as carrying something of the guilt or shame of their lack of vaccination. To be paralysed by polio, for instance, carries the regret of not vaccinating against polio:
“The use of disability to shape public health behaviours was not restricted to sexually transmitted infections. Smallpox vaccination campaigns often played on the fear of scarring and other disabilities. A Soviet poster from the 1930s shows a young man being vaccinated while the figure of an older man with a severely scarred face, his cane and blank eyes signifying his blindness, looms in the background.
The disabled man is a warning: his blindness and disfigurement are presented as the consequences of failing to vaccinate. Public health posters that use explicitly disabled figures to influence health behaviours only reinforce the existing stigma around disability. Historically, this stigma has contributed to disabled people being shunned, neglected, discriminated against or being socially isolated.
My point (and tweet) was that public health campaigns like the the eradication of polio often used posters to encourage take-up of vaccination or inoculation because they portrayed the message clearly. Importantly, posters don’t require many words, important in an era of lower general literacy. Indeed, the eradication of smallpox was in part engineered through radio – the ability to spread spoken, rather than written, material was very helpful. It is an astonishing story of success over a terrible disease, involving the co-operation of many countries and a general faith in science.
Nothing to see here, move along people.
Yes, the images in the posters are dated but are they ‘stigmatising’ of disabled bodies?
Some are, for sure. The image of the young girl ‘blighted’ by syphilis is a shocker by anyone’s measure,
It’s also almost 100 years old but thankfully, through articles such as these and the magic of the internet, we get to reconstitute the stigmatisations associated with some diseases. Otherwise this nasty little image might have just faded into obscurity.
I tried to think about why I felt so angry about this essay. I think it started with the sentence;
The disabled man is a warning: his blindness and disfigurement are presented as the consequences of failing to vaccinate
The reason blindness and scarring are ‘presented’ as the consequences of of failing to vaccinate is because they ARE the consequences of failing to vaccinate. I think this is what got me furious.
So often we’re told to keep an eye out for government authorities telling us lies. Yet, the time to really shit ourselves is when we’re told that the truth is unacceptable.
Smallpox was a hideous, extremely contagious disease. It’s easy in 2020 to argue about the niceties of a campaign for eradication but it was the 1930s in Soviet Russia and people were a bit……preoccupied. Revisionism aside, I struggled to work out why I felt so angry about this article.
In my early 20s I had a bit of time to think about how disability is constructed, mostly during the long months when I was completely paralysed on a respirator, unable to blink, and being fed through a tube while I came to terms with being a cripple (my word and I WILL NOT be chastised for claiming it) for the rest of my life. I had been advised that I would not recover the ability to walk, nor pilot a wheelchair on my own. I was in a hospital ward with many other people who were in a similar situation, many of whom had MS, but there were others too – stroke victims and victims of motorcycle accidents, all of us washing around in the too-warm soup of the therapy pool, into which we were lowered like crayfish in a pair of tongs, shucked of beige, prosthetic limbs. There we were, cheerfully living on the ‘spectrum of human difference’.
I had the rare good fortune to not end up totally paralysed but it gave me an insight into the world of disability and the importance of speaking plainly about it. I’d heard this idea before – the idea that my body was on a spectrum of human variability – from the physio, to which the guy from the room next door snorted and said, ‘Yeah, the fucked end’. He would know – he died a couple of months later. THIS IS REALITY.
I think the spectrum idea is offensive because it flattens and conflates the experiences of disabled people with those of non-disabled people, thus eliding the unique and often extremely difficult challenges they face to perform the simplest tasks of living. It’s kind of like the ‘nice’ physio who chirpily told several of us patients that we weren’t ‘sick’ before she hopped on her expensive racing bike she’d parked in the hallway and whizzed off into the outside world. I get where she was going with it, but fuck it felt like being cancelled.
And I guess that’s the point. If you normalise ‘human difference’ it’s a quick step away from saying, ‘you’re fine’. But people’s physical realities ARE part of their personalities. Go and tell someone with end stage bone cancer that the pain they’re feeling is just another way of being human. It’s true, of course, but it’s also most specious and egregiously heartless. It’s also selective. I note that we don’t tell someone who feels they’re ‘in the wrong body’ that actually, it’s not ‘wrong’, they’re just on the spectrum of normal human difference. Our physical beings, our physical bodies, matter. We are embodied beings. And sometimes those bodies are a bit on the shabby side. I know mine is.
When you plot everyone on a ‘natural scale of human difference’ you erase the singular fact that some people’s lives and experiences are incredibly difficult. They present unique and painful challenges, challenges that should be recognised. I know that some people treat people with a disability poorly – they talk dismissively, or, more commonly, they don’t talk to you at all. They design buildings that are fucking impossible to navigate in a wheelchair. It’s humiliating, sitting, waiting for someone to help. We need to fight this stigma. We need to treat people well. Telling people we’re ‘different like everyone else’ (and therefore all the same – thanks Fantastic Mr Fox) doesn’t help.
I find the vaccination argument in the essay particularly offensive because it suggests that not wanting to end up paralysed from polio is a bad thing. If there’s any ‘able-ism’ rocking around, it’s the idea that people who are at risk of polio should embrace the opportunity to live on the ‘spectrum of human difference’. It brings to mind all the other times that vulnerable groups are manipulated into thinking that preventable pain and disability is good. New Zealand shifted its entire maternity system to a midwife-led model and did not study the impact of the change for 20 years. Because who gives a fuck about women and babies, right? How about the cults that convince people that childhood vaccinations aren’t necessary. Because who gives a fuck about children, right?
* I can walk and use buildings in the mainstream way now but constantly make complaints about their lack of accessibility, which happens ALL THE TIME and in places you really wouldn’t think would be so bad, such as museums, public art galleries and train stations. I am informed that this is called ‘being a Karen’ which is a good example of how women get cancelled for trying to improve something important.