The Disabled Body as Uncanny

At the AHRC’s summer research festival in June I presented this talk about the disabled body as ‘uncanny’ in the Freudian / Heideggerian senses of the word. Naturally it also features a rant about what society is like for disabled people in general.

Transcript:

So I was thinking about concepts of home and concepts of belonging and how you can belong to people and you can belong to places. And then I thought of the body as sort of the only thing we have throughout life that is our site of belonging.

It can change throughout life. We can change it. We can dye our hair, we can get tattoos, we can put makeup on. It can change in other ways: we can break our nose and our face can look different; we can lose a limb in an accident; we can do all sorts of things. But the body itself remains throughout.

And one of the reasons that I chose the concept of the uncanny is because it marries my interests of psychotherapy and philosophy together quite nicely.

So I'm going to talk a little bit about Freud and Heidegger. They were both people I wouldn't like if I met them in person but unfortunately they had some good ideas [chuckles] so sometimes we have to use them anyway I think, much as it pains me to do so.

Freud, in 1919, wrote a really interesting paper that's just called 'The Uncanny.' And what I find interesting about the word is that both of these writers originally wrote in German. And in German, the word 'uncanny' is 'unheimlich,' which is made up of three parts. There's 'un' which means 'un'; there's 'heim' which means 'home'; and there's 'lich' which means 'like' or 'ly.' And so literally the word 'uncanny' is translated from a German word which means 'unhomelike' or 'unhomely.'

And I found that really interesting because I feel like it speaks to how we perceive the uncanny today. It's like when there's something that's just not quite right. Like, it's almost there, but you're just not quite at home with it, and there's something a little bit off.

It'll be familiar to us, especially at the moment, with the concept of the Uncanny Valley. So this is something that we talk about a lot -- we talk about [it] in sort of AI art, for example -- it's, like, almost there, but the fingers are weird... or, like, there's something not quite right.

There's a thing going around on TikTok at the moment about doing Uncanny Valley makeup and I was really tempted to, like, try and work out how to do it and, like, come to this session in Uncanny Valley makeup but I couldn't quite... [laughs] I didn't quite have time to work out how to do that.

But I quite like this idea of the sort of... it's not that something's strange, it's that something's almost not strange, but not quite. So Freud gives the examples in his paper of, like, fairy tales and folk tales. And he talks about how... so something like a doll that comes to life, for example; Pinocchio is not an uncanny story, even though something weird is happening, because we see it. It's too visible. Pinocchio is just a doll that can move around, and so that's not that weird, because within the world of the story, it makes sense.

What makes something uncanny is when something's doing something and you're not quite sure if it's meant to be doing that or not. So if you're looking at a doll out of the corner of your eye and you think you see it moving and then you turn and it stops, that's uncanny, because you're not quite sure about it. It sort of sits between the known and the unknown.

Heidegger talks about the uncanny as bringing us face to face with our anxiety about death. So he considers it to be these sort of things that are, like, on the periphery of everything, where you suddenly realise that you're not in control and you have the sudden existential anxiety of, like, "Oh no. Anything could actually happen at any moment, and I'm just assuming that life will continue the way that it always has continued for me."

And this, I think, plays into a lot of discourse around disability and chronic illness and physical limitation in today's world. And I've-- I've thought about it a lot over the last few weeks with regard to my own journey in this way.

So I was born disabled: I was born with a musculoskeletal condition that meant that I was supposed to, throughout childhood, have, kind of, splints and braces and things, and I was supposed to have had several operations as a child. The family I grew up in didn't trust doctors -- that's a whole long other story -- but essentially, I didn't get the medical attention I needed.

And so I was told as a young person that one day I would end up being in a wheelchair, so I always knew that that was coming. And I found walking and standing difficult for my whole life, but I managed to hide that from everyone around me. And so I knew that at some point I would become a wheelchair user, and I anticipated that that would be a relief for me. And actually, that turned out to be true.

Two years ago I became a wheelchair user, and I did find myself just being like, "Ahhh [sighs with relief], I don't have to pretend anymore, like, I don't have to try to look "normal," whatever that means."

What I found interesting was other people's responses to me suddenly being in a wheelchair. People were either pitying, which was very annoying, or overly sympathetic. There was this sense of, like, [puts on a silly, simpering voice] "Oh no! Oh, you're in a wheelchair, oh no! How terrible!" And I was like, you didn't act like that a year and a half ago when I suddenly got glasses.

And like, I know those are very different things. Having both of them, I am acutely aware of that. But the reason the wheelchair is such a big deal is because society is so inaccessible. It's a pain in the arse to go down the street. Like, you know, someone's parked across the dropped pavement, someone's left their bike across the curb, all sorts of things that make it difficult to navigate the world.

But another thing that I found interesting when the wheelchair thing happened was that the people around me seemed comfortable with it when they realised that it was something that I had had from birth, and therefore was something that definitely wasn't going to impact them at all.

What they have found more difficult is that, alongside my kind of mobility issues I have a number of quite serious illnesses that limit my day-to-day capacity to do things and that change every day. So I have a neurological condition that means that my body can suddenly sort of spasm and do all sorts of things that I don't want it to do. My muscles are starting to waste away, which means that sometimes I can grip things and sometimes I can't. And I can't tell, day to day, when I reach out to pick up a cup, whether I'm going to be able to pick up the cup or not.

And that provokes this really weird feeling of, like, who-- who am I in my body? Like, if I can't trust my body to be able to do something that I've always been able to trust it to do, what does that mean about that as, like, my site of belonging? Do I... do I even know who I am? Like, if I can't do this, what else can't I do?

Likewise, people outside of me seem to have a similar feeling. There's a sense of disability as, like, something between human and inhuman. As, like, something that makes someone a little bit uncanny, a little bit weird. And you see this in people's reactions to chronic illness, especially. People will say things like, "Have you tried yoga?" "Have you tried the keto diet?" "Have you tried this thing?"

And in my opinion as a psychotherapist, what they're doing is desperately trying to grasp something that means that it won't happen to them.

Because, I mean, my chronic illnesses came on quite quickly. They came on as a result of covid, partly, but there were some other factors in my life as well. Probably it was complicated by the medical attention I didn't get as a child. There were all sorts of things that went into them, but there was nothing I could have done to prevent all of these things from happening. And that sense of powerlessness and helplessness is something that really freaks people out when they're suddenly faced with it.

Freud, when he's talking about the uncanny, and the... he kind of traces the origin of the word and he talks a lot about the German word for 'home' and all of the things that I mentioned earlier.

But he also relates the 'heim' bit of the 'unhomeliness' to the German word 'Geheim,' which means 'secret.' And he talks about how, there's something about the uncanny where it's like there's something that you're keeping secret, but you can't quite keep it secret. So again, it's this sort of in-betweeny, liminal feeling of, like, there's something sort of coming out, but you can't see the whole of it. And the fact that it's not in full view makes it want to be a secret but also makes it want to be there, and this kind of juxtaposition is the thing that throws us into this sort of deep existential angst.

And this reminded me of a thing that was doing the rounds on social media a few weeks ago, I don't know if you saw it, about a Scottish photography firm that had been... that had gone into a school to do, like, the classic full-school photo, and they had called up the parents of the able-bodied students and offered them the opportunity to have a class photo with all of the disabled students excluded, so that just their kind of "normal-looking" children would be included, and everyone who looked "other" would be sent away.

And I was, like, not surprised by this, because I'm a disabled person and I know how the world looks at me. But also I was like, that's so fascinating because it's this sense of, I don't want it to be out there in the open, but I know it's sort of got to be there some of the time. Like, my kids are going to be in class with this disabled child, but I also sort of don't want to acknowledge that it's there. Because it's too confronting for us to be kind of constantly up against this real sort of sense of existential angst.

So, I guess that's kind of bringing my various thought bundles to a close. But essentially, I was thinking about the body as our original site of home; the only thing we have that really belongs to us throughout our lives; and thinking about what happens when that begins to break down and when we stop having the opportunity to pretend that we have ultimate control over our bodies and our mortality.

I'll stop talking now. If anyone has any questions, happy to take them!