ADAPTIVE TRANSCRIPT

EPISODE 4: BODIES AS TOOLS

PART 1

Danielle Peers: You have a flashlight.

[FX: Flashlight turns on]

DP: And let’s say like, what’s lit are your range of choices in your world. But I think a lot of people take on technology because they think it increases your range of possible actions. It increases the range of that lit area that you can work in.

[FX: Flashlight clicks off]

DP: If for example I use a wheelchair precisely for that reason because if I park three blocks away I can get from there to here. Now, if I refuse to get out of my wheelchair this actually diminishes that range because as soon as I come up to the stairs in this city, I can’t go to any restaurant, I can’t go to any of my friends’ houses. So this tool enables particular things and increases my range of possible actions and in other ways can restrict it.

[theme music]

Michelle Macklem: You’re listening to ADAPTIVE and I’m Michelle Macklem.

Adaptive is a series about how humans interact with technology. This series explores that how people with different and diverse abilities use tools and technology to adapt to the environment around them.

DP: My name is Danielle Peers,

Lindsay Eales: I’m Lindsay Eales.

MM: Both Lindsay and Danielle are artists, scholars and researches who study disability. But they’re also in a relationship. Most areas of their lives are intertwined with each other and for both of them experiencing disability has informed how they see the world. Danielle navigates the world in a wheelchair and Lindsay navigates with her own tools that help her with periods of mental distress. Although their abilities and practices are different, what Danielle and Lindsay share is how they care for each other.

In this episode we hear about Danielle and Lindsay’s lives both together and separate and how they use their own tools and technologies to adapt.

PART 2

DP: I met Lindsay, she was starting a masters in the same program I was doing a PhD.

LE: I met Danielle, I think I met her in the first year of my masters.

DP: I think instantly we were friends, we were friends for two years before we started dating… Do people say dating anymore [laughs] I guess dating.

LE: I think for me she really sparked a deeper questioning and critique of the ways we navigate the world in relation to disability and ability.

DP: And her work has really moved my work in really significant ways, and I mean in terms of the very slippery space between her academic writing, her artistic production and her practice.

LE: I am a co-artistic director of CRIPSiE which is the Collaborative Radically Integrated Performers Society in Edmonton.

DP: I mean I remember the first time I saw one of the dances that she’d choreographed and maybe I fell in love with her art before I fell in love with her, and then I saw how she practiced in her own communities and the ways she engages in the world and so it was all of those things for me that really made me fall in love with her.

LE: We fell in love. She’s super smart and funny and all of that…generous. Everything is art and is politics and everything is generous critique and everything is care that we do together.

[music]

Its very blurry and there’s lots of late night conversations about Foucault and structural barriers and artistic possibilities and there’s dancing in our living room and there’s somebodies making food for a week and a half because there’s somebody stuck in bed.

MM: While Lindsay and Danielle now share a life together together their individual paths to this point have been really different.

PART 3

MM: Danielle’s journey into thinking about disability began from her love of sports.

<ambient sounds of basketball court>

DP: I was this odd, what we now like to call stand up basketball player but now what most people would call basketball player, and it was my last day playing ball when someone who played wheelchair basketball who was non-disabled came up and recruited me to play on their wheelchair basketball team. And so my second year of college I was sort introduced to this community with a wide range of abilities and I think I was really fascinated by the sort of difference of that sub culture and all the kinds of ways that made me really look at my own, what I thought was ablebodiedness [laughs] very differently. And it was actually a few, 3 years later that I myself was diagnosed with a disability and went on to play Paralympic level wheelchair basketball.

DP: My team was wonderful, I had an incredible group of people that I played with. In many ways I far more in love with Para sport and wheelchair basketball than I was with ‘stand-up sport’. I mean I loved playing ball, but what I loved about the Paralympic team was in some ways is that there’s a lot of diversity on the team. There was a pretty wide range of ages. When I joined the team there was someone who worked for the human rights commission in Ontario, and you know there was a nutritionist, so you sort of have people in varying degrees of their kind of career trajectories. And that was really refreshing for me. The kind of diversity of bodies and ideas, because certainly when I played college level stand-up basketball you get to the point where everyone likes the same music and does the same thing [laughs].

I think the hardest part for me was – this is going to sound weird but – I don’t really like competition and so I think a lot of people get into sport because they love high level competition. You know you’re training 40 hours a week and then on the off time people want to play you know competitive poker. [laughs] And I was, ‘can we collaborate on a puzzle?!’ [more laughter] I think there’s parts of my personality that really worked with that and there’s parts that didn’t quite fit so.

And it was, I think hard to live a life where you have so little control over anything in your life. Despite being called empowering, how little power actually athletes had within it to make choices about their own lives and their own sport.

DP: In my entire Paralympic career, any time I tried to sell a story other than… ‘I was fine, I then got tragically disabled – enter piano music now – and then I bravely overcame – strings come in now – I bravely overcame my disability through sport. Sport saved me and empowered me. And now I’m this normal person who’s going to be heteronormative and married and happy.’ There’s no space to talk about it, because the only story you can tell about the Paralympic games is that it’s empowering.

So they want to sell visibly and un-confusingly disabled. So if you happen to walk, or walk part-time, you’re supposed to stay in your wheelchair at all times to sort of show the uncomplicated binary kind of view of disability to sell the idea that ‘we’re just like you’ other than the wheelchair. And I think in terms of the binary disability that works for some people potentially who have complete spinal cord injury low level. But for people like me, with muscular dystrophy, that’s not the reality of my body right? I can walk a little bit. I have fatigue of the upper body as well as the lower body so its good if I'm using different tools. So those kinds of disciplinary mechanisms around how you’re supposed to act didn’t really fit with my body and kind of in some ways perpetuated the damage the sport was doing to my body.

<music>

DP: You don’t often hear people with my diagnosis playing elite sport. It doesn’t necessarily work but.. so I definitely was intensely into it. And loved it and loved the project of pushing my body to see what it was capable of. And not only my body I think the nice thing about wheelchair basketball is you have to have particular kinds of physical capacities to be successful. But because of my condition I couldn’t train the way most people train. So I couldn’t be the strongest, so in a lot of ways it was about doing a lot of work about creativity and doing things differently as well. Which in a lot of ways I really loved. I don’t love what competition brings out in people and in some ways I think I was less, or less invested in the outcome than a lot of people were. Which may have actually made me a better player in some weird way. I was very invested in playing well and having a great game but I think... I mean we won a bronze in the Olympics, the Beijing Olympics and it felt like the end of the world for a lot of my team. But the truth is nothing in my life would have changed in my life had we won a gold. Nothing. Nothing significant or meaningful in my life. And certainly nothing significant or meaningful in the world.

[music]

DP: But it was also fun. You know what I mean? I think this is the important thing, is that we have to hold the hard and the beautiful together. There’s a lot that’s beautiful about it. If it was totally horrible I wouldn’t be so invested in trying to critique it. So I think that’s actually crucial to name. There were so many beautiful moments, so much about it that I loved. I don’t want disability sport and Paralympic sport to disappear, I want it to be much more inclusive. I want it to enable its athletes to have much greater degrees of freedom. I want to be able to question and critique it, because if we don’t question and critique it, it will never be better.

[music]

Part 4

MM: For Lindsay, disability wasn’t really a focus in her life until she decided to go back to school to become an occupational therapist.

LE: How I got into Occupational Therapy? I was on exchange in the Netherlands for a year and looking for something to do after my undergrad and possibly a professional degree. I didn’t really identify as experiencing disability at the time, nor did I really have any contact with disability communities or Crip communities. It was just kind of a leap.

LE: I think for me, what excited me about OT is that at the core it’s a creative practice of both an art and a science. And I think there’s some interesting work being done and really good intentions in terms of practicing with people who experience disability rather than acting on them.  And at the same time, the structure of the professional education program didn’t allow for accommodations. And I had to fight quite hard to be able to access accommodations around mental illness. So there was a bit of like a dissonance I guess or a disconnect for me between what we were learning, and the ways it was actually practiced in our professional education.

LE: I was able to function within undergrad settings without needing to access a diagnosis and thereby get accommodations because in classes of 200 people it was much easier to be absent for 3 weeks because of depression and not have anybody notice. Coming into a professional program its smaller classes, it’s a lot more structured there’s professional placements which require you to attend from 8 in the morning until 4 at night, 5 days a week. There’s not a lot of space for flux in energy levels and capacities for attention and concentration and anxiety. So when I entered in a professional program, the strategies I’d used previously in my undergrad in terms of taking the time and space I needed to negotiate my experiences of mental distress were no longer functional in that space.

LE: Then my father died in one of my professional placements, and so I needed more than 2 days off for grieving, which was another one of the structural regulations around professional programs. I ended up having to access specialized supports and disability services on campus. Having to much sure I got a diagnosis around my experiences of mental distress which I hadn’t done previously. I was suicidal at one point and the way that the classes were structured it was over 2 different semesters. So you had to complete the first half of the course in the first semester in one semester and the second half of the course was like an intensive 2 weeks in the second semester so I had to take a whole year off.

[music transition]

LE: So I had this year off, because of my adventures with suicidal ideations and such. And for me, an occupation that brought meaning to my life for a long time was dance. And I had increasingly been less involved in undergrad because I was trying to negotiate the intensities of the undergrad programs and for me that meant that dance was something that fell by the wayside to some degree. And so I had this year and I was like, ‘what am I going to do with myself?’ and I was looking around at our dance communities in Edmonton and I think this is true of a lot of places where there wasn’t a huge diversity of bodies, and people using different tools so very obviously there was some structural barriers to accessing dance. Some of those were more obvious to me at the beginning which include the fact that lots of studios are up two flights of stairs and the kinds of activity requirements of dance expect very particular kinds of capacities in terms of flexibility and use of legs and timing and rhythm and strength.

LE: I was like what does it mean then to be looking at creating and fostering more accessible dance spaces? And so I got together a small group of humans in Edmonton some folks who were doing important disability advocacy work in Edmonton and some dancers who were just involved in dancing and yeah we started exploring what does disability and ability and inclusion look like in dance. And I immediately had a huge education on what disability culture and politics means and it was very different from what we were learning in occupational therapy school.

LE: I started seeing bathrooms in a whole new light and seeing the entrances to buildings in a whole new light, and it really highlighted for me, increasingly the structural barriers, both architectural and attitudinal around navigating the world with tools and mobility aids.

PART 5: TOOLS

LE: Danielle uses tools to navigate the world and I also use tools to navigate the world. But they might be less visible than the tools she uses.

DP: One of the most interesting things about wheelchair basketball is that in Canada, anyone can play. Well, that’s actually a lie. Anyone can play if they can push their own chair so if I came in in a power chair I couldn’t play. So I should say that non-disabled people can play with a certain level of people who experience disability. So you have people coming into the gym with all kinds of tools. You have some people wheeling into the gym, some people crutching into the gym, some people walking in with shoes and car keys and maybe biking to the gym. So people come in with whatever tool they use on the outside and all of them transfer to a game chair. No one uses their own equipment when they play. The way that (that athletes articulate this is that the sports chair isn’t a wheelchair in the sense. It’s the same as a luge or a pair of skates, it’s a piece of sporting equipment, that everyone, regardless of how they come to the gym, they transfer into that kind of sport equipment when they’re playing. That chair is really designed to be a basketball chair. If I were to take that chair and try and wheel down the street, I would get about 2 feet and be high ended on the 5th wheel. It just doesn’t work that way. It wouldn’t fit through a door, right? All these kinds of things. So that equipment is very specifically set to enable particular kinds of things and used out of context its much more disabling than enabling.

DP: I think the way that we understand or recognize tool use is deeply merged with the ways we understand and recognize disability. And so I think that what tends to happen is that we see my wheelchair as a tool, but necessarily see your bike or your shoes as a tool. So in some ways our definition of disability is actually informing and understanding of the tool. If we’re going to kind of re-imagine disability we have to re-imagine tools at the same time. That these two re-imaginings are going to help us inform each other.

LE: We have certain understandings of what a wheelchair is, what crutches are, what a cane is and what that means for that body that’s using then we more readily read disability in relation to those tools but I don’t carry around my psych meds with me, or I do and they’re more concealed {laughs] I keep them in my purse. For me technology is things that help us move through the world, things that help us move through the world.

LE: I’m currently trying to quit smoking, but I’m interested in cigarettes as a technology because I can go out and have a cigarette and get out of a social space in a way that is a lot more socially acceptable than being like ‘I’m just going to go stand outside by myself for a little while and then I’ll be back.’ So, I think there’s something interesting in the coping strategies that many people access. And those being surrounding by technologies that might be low-fi or not electronic technologies but that make social spaces and connection to community and other humans more possible.

LE: If I think about some of the most interesting creative possibilities in integrated dance, its when bodies and tools, bodies and mobility aids for example create something that would have never been possible without all of the parts. So a wheelchair sitting empty alone is not going to do much unless its powered by a human. And the interactions of humans and chairs and other humans and other tools creates sculptures and moving sculptures that wouldn’t be possible without each other. But I also wonder about how do you then point to the bodies as tools as much as the pieces of metal as tools.

PART 6: The Breath

DP: Crucially for me one of my major tools for breathing is my actually helps literally move my ribcage.

LE: If Danielle has trouble breathing, sometimes its like a simple instruction like ‘breathe out’ and she’ll do like stacked breathing.

[background Danielle preparing to do a stacked breath]

DP: Stack?

LE: Just like…

[this part is in unison, Danielle and Lindsay each demonstrate what a stacked breath sounds like]

DP: breathes out 5 times

LE: breathes out 5 times

DP: [coughing] that’s what it does

LE: Which helps expel more CO2 from your lungs with less effort than trying to do it in one long sustained breath.

DP: The way of doing that breath collectively together, is a technology in a way. Is a -is a way of thinking around the moving of the thing. Where at this point the thing is my ribcage.

LE: Sometimes I’ll like mechanically, with my hands on her ribs, help her by pressing in and expanding with her breath, then pressing in again and expanding with her breath to help her move CO2 as well.

DP: For both of us our brain wraps around that technique in a particular way where it becomes in some ways naturalized. I catch a cough in my chest and she’ll automatically move to me and I automatically assume position and we’ll shift between positions.

LE: I think it certainly is a tool, and I think it’s a tool to may her life more survivable, more livable which is also in turn a tool to make my life more survivable. I think she metaphorically helps me breathe. I just might do it more literally.

DP: So is there a difference between my ribs and her hands moving my lungs and these wheels and this metal moving my body? Those strike me as actually very similar in these two cases, so this why drawing the line outside the body can sometimes be odd.

DP: We are fundamentally not only social beings, but interdependent beings. We depend upon each other, we depend upon – most of us – non human animals, we depend upon particular kinds of things and the people who make those things.

LE: We all are interrelated functional system that make moving through the world more possible. If technology is something that makes moving through the world more possible then the bodily systems and the sensory experiences that we have I guess would (could) be considered as technology.

[music]

LE: Work blurs into art blurs into life blurs into love blurs into navigating the world together. Sometimes its exhausting cause there’s not the same separate of work and life that some people navigate the world with, but I think that actually makes work and life more possible for us, or for me at least. Because it doesn’t work for me to work 8-4 and then come home and be a separate human from the human that I’m at work. I think our intellectual and our creative sparks don’t happen in a normative timeframe. Yeah so. It’s all blurry and beautiful and difficult.

 

[music]

 

PART 7 – Credits

This episode was written and produced by Michelle Macklem with editorial assistance from Owen Chapman, Aimee Louw and Katie Hill.

This research was supported by the Social Sciences and Humanities Research Council of Canada.

Music in today’s episode by Lorrie Edmonds and by me Michelle Macklem.

Special thanks to Danielle Peers and Lindsay Eales for sharing with me on this episode. To learn more about their research and in particular integrated dance you can visit cripsie dot ca

Subscribe to Adaptive on iTunes and for more information on the show visit our website at adaptivepodcast.com.