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The Alternative Limb Project: Pain & Perception Humanities Piece May 2023

“Having an alternative limb is about claiming control and saying ‘I’m an individual and this reflects who I am'.”

— Sophie de Oliveira Barata


 Being that our theme this month is about Pain & Perception I was searching for some more understanding about the amputee and phantom limb experience. I was shocked to learn that such a high percentage of amputees experience phantom limb pain (see the Collins et al. Paper from this month). Experiencing a phantom limb is a fascinating phenomenon and something that brings about many questions, especially when we consider the pain experience. It directly antagonizes our ideas about pain originating in the tissues, since there are no cells/nerves there to transmit signals of any kind. It asks us to inquire about how we perceive our bodies and create a model for it. We’re told that it’s the absence in the model we’ve already created that brings about the phantom limb, but there are cases of people born with missing limbs who still experience these symptoms. Is it the ‘smudging’ of the sensory cortex, in need of therapy to become ‘un-smudged’? I’m not sure. I suppose I’ll learn a bit more about that with the readings this month. I’m sure many of you are curious as well. 

 I chose this talk with Sophie de Oliviera Barata because I found it so creative. I love when things challenge our preconceived notions and give us, not just permission, but a pipeline to think differently. In an instant my whole conception of prosthetic limbs has changed. These creations, these limbs, these pieces of art, are so imaginative and make the world of prosthetics really exciting! I also feel a little bit embarrassed when I come across a project like this, because it makes me wonder why this is only happening now? Why is it that for so long we’ve been so matter-of-fact about a missing limb as if we just need to replace it and be done with it. Like we’ve all subscribed to this narrative that it’s taboo to talk about. I love how this movement of aesthetic limbs liberates us from the notion of less-then when it comes to prosthetics and inserts the reality of and what-else/what-more? 


 I also appreciated that part in the video where Sophie acknowledges different experiences of amputees. Some who really feel sad about what’s missing, and other’s who feel it’s not a big thing that has happened to them and don’t resonate with a feeling of shame, exclusion, or sadness. I mean that makes sense of course. Different people will always have different experiences. But it’s just such a great reminder that we should never assume. 

 As I watched the TedMed talk of Sophie, some things really stuck out for me. Like when she said her she is interested in ‘merging the imagination with reality’. This is for me the essence of her work. I love how her work calls us to think outside of accepted models of what a body is. Why not have a vine for an arm or drawers for a leg? Does it need to be functional in the way we knew it to be, or can the new limb function in a different way, simply because the opportunity for it exists? I mean functionality is relative anyways, isn’t it? An arm functions in multiple ways depending on the arm owner. It can be used to throw, play music, touch a loved one, paint a picture, or cause harm. And a prosthetic doesn’t have to be just a ‘never-as-good-as the original’ kind of replacement, it can be something else. It can have it’s own purpose, dependent on the needs and desires of the arm owner. I see this work as a dossier of functions, from purely aesthetic functions, self-expression functions, practical functions, physical functions and many more. 


 I’ve often noticed in people I work with, who live with long-term pain, how they can sometimes get stuck in the desire of “going-back”. They become stuck in the idea that their lives need to be the same as before. Which I understand, and is a natural desire. However, it can often feel like a missed opportunity. Somehow, there is a new context in which they’re being challenged to figure out how to function in different or novel ways, in ways never thought of before. And although these new ways won’t be the same as the old ways, that doesn’t necessarily mean that they have to be ‘less-then’.


 Sophie also mentions that she is interested in optical illusions and “tricking the mind with what’s real and what’s not”. This made me think about the rubber hand illusions/experiment and how easy it seems to be able to integrate parts into our physical model of ourselves. It makes me wonder what would happen to phantom limb pain if you were able to integrate a new limb into your model. Does it help? Does it stay the same? 


 And finally, I appreciated how Sophie acknowledges that importance of the kind of work she does. To create something that someone will accept as part of their own body. It’s really personal work and such a privilege to be able to help someone re-integrate of lost piece of themselves or to turn their experience into something more meaningful. Very powerful. 


 I hope that you will all get a chance to watch this video and check out Sophie’s work. I can’t wait to talk about with you all! 



 Check out the Alternative Limb Project to view more of her work.


If you were to need to replace a limb, an arm or a leg, what do you think you would replace it with?


Christine

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