How Do We Experience The World Around Us? ‘Traverse Talks’ Episode 32 – With Petra Kuppers

Pain And Kindness:

Sueann: Oh, pain, Petra, you have written about pain in your life. How do you manage pain or accept pain? How do you deal with it?

Petra: Often when, when pain is very intense, I either move very slowly – I write in the book about moving under one of these blankets. I use – it’s actually exactly the same blanket that I was just touching earlier. I move under this blanket like an amoeba and just left the tiniest, tiniest movements of my fingers influence the shape of the blanket. And so there’s this sense of human movement and non-human movement in a really interesting connection with one another. But the other thing that helps me to engage pain is writing, and it’s often poetry writing. So I’m a poet as well as an academic writer. And it’s often in poetry that I can find the best way to express sensations, the multiplicity and the layeredness of sensation that emerges out of pain. So that I think so much of the way that Eco Soma, that layering of sensation that is described Eco Soma, comes for me out of pain. When I am really deeply meditating on all the sensations that I have. I think like many people who experience chronic pain, we know that pain is a complicated thing. Pain is not something you can just say, “Oh, this is pain. And this is a 10, or this is an eight or this is a four.” You know, the way that doctors try is to describe pain. If you lived with pain for a really long time, it becomes a very different kind of sensation. I describe it as an orchid or a rose that opens and has layers and different kinds of textures in it. So if I, for instance, when I’m in pain, if I focus on the sensation of air on my arm, it allows me to find a little bit of space between myself and pain. Creates alternative kinds of sensations. So I can use somatic modalities to help me when I’m in pain. I can use my training in a different kind of dream journey practices, embodiment practices to alleviate my pain without always, or in addition to, direct regimes.

Petra explains the relationship between disabilities and pain, and how she uses Eco Soma to help.

Sueann: Wow. So to live well with pain, you find those spaces in between and you meditate and think deeply about the layering of those sensations. Why not just suppress the pain? Why think so deeply about it?

Petra: I just don’t think it’s very possible, and it depends on what kind of pain you have, but when I’m in pain, I cannot suppress it. It’s also a part of who I am. It makes me who I am in the world, which is why I think it’s so interesting to write about the sensations of a particular disabled person in the world. That the kind of impetus behind Eco Soma – writing from a disability culture perspective. It shows what it means to be in the world as someone who often has to pay a lot more attention to my embodied being than someone who doesn’t experience pain does, right? So there’s a request, a requirement to be aware of self and world in a way that someone who lives in a pain free life doesn’t have to.

Sueann: While we’re on the pain subject, I wanna ask about religion, specifically Christianity and the salve of heaven as a way to be free of pain? Cause as I’ve gotten older, I’ve seen heaven as more of an excuse not to work through problems or to try to work with your pain. But they always say you can’t have heaven on earth and so why try? But you write and point out that pointing to an elsewhere for a reward is a powerful mechanism of control. So when we’re being told, “Yes, you are in pain, you’re not fully able bodied, but in heaven you’ll have a whole body, you won’t be in pain. So, there, there.” Can you explain that more and about the control of that?

Petra: Right, yeah. Well, if everybody were to rise up and ask for accommodations in this life, which could just include a ramp or working from home when you’re told that you have to come in, in the middle of a COVID crisis, right? So if that’s all it takes to make you feel, experience some of the joy that we’re just talking about, then being asked to wait for earthly somatic bodily delights for some kind of afterlife is a form of control. It is trying to create to keep things the way they are, like nine-to-five workplaces, like places with lots of stairs. I mean really there are often solutions. They will not take away all pain. Disability is not something that you can just legislate out of the world with ramps and with rules that shift things slightly here and there. There will always be pain. But I find it very problematic to point to an afterlife when there’s so many ways in which we could be much kinder towards one another.

Understanding Disabled People’s Perspective:

Sueann: So I’m gonna flesh out this question with you cause this involves technology. And I’ve heard people being very enthusiastic that this technology is going to enable those who are disabled to participate in our world. But for me, I think it’s a virtual world, but your physical being is still here and [this] world needs work on too. So it’s complicated to me. I’m excited, but also, yeah, there’s more work to be done.

Petra chats with Sueann via Zoom.

Petra: Yeah I love how you talk about that. You know, that complexity is something I feel too. So in some ways it was very exciting to see the whole world switch into the communication channels that disabled people have been using forever. An activist called Mia Mingus talks about access intimacy. And as someone who uses a scooter, I often cannot get into people’s private homes because many people have lots of stairs and I can’t get in. So in March 2020, I began seeing people’s home spaces and it was fabulous. I mean I’ve never seen so many private home spaces than I have on Zoom meetings. So that was quite a delight to me. And I think to many disabled people who are indeed – I mean, I’m in no way home bound and many people are, but I’m not. I do, my home is accessible and I can drive a car, but I can’t get into the private spaces of people who walk stairs. So that was pretty delicious.

Sueann: What do you want able-bodied people to understand?

Petra: I would love able-bodied people to understand that there is disability cultural work out there and that disabled people can create rich and powerful art and culture works and that they can be part of disseminating this kind of work. So I encourage people to find out about disabled artists in their own locality and beyond, to share that with disabled people that they know because many disabled people are often quite isolated. We don’t teach disability culture in schools. It’s very hard to connect yourself. Many disabled people speak about a form of coming out when they actually finally meet a group of people who understand disability as a positive thing. It’s a bit like queer world, right? We come to queer families, to queer love, the same way that we come to disability culture worlds. We usually come to that later in life. It’s not something we were born into. So reach out, help people to connect to disability arts and culture out there.

Sueann: Beautiful. And what would you want people with disabilities to understand?

Petra: That you’re beautiful. That your way of being is rich and gorgeous. That people can learn from you – that people can learn from you different ways of being in this world. And that is an incredibly enriching part of what it means to be human. And that we need these different perspectives of being in the world in order to create a more just culture for all of us.

*Question and responses were edited for length and clarity.