Are you wrapped in cotton wool?

Why don’t disabled people take risks? Is it society assuming we can’t handle the risk, or our own internalised ableism telling us dangerous things are too unsafe? In the first episode of Pieta Pokes the Elephant (in the room) we explore whether people feel like they wrap themselves in cotton wool because of their disability and why. From a quadriplegic free-diving with sharks, to going out clubbing or getting pregnant, we cover how risk affects us a little differently than our able-bodied friends, and how we live full lives and choose which risks are worth it.

Listen to the podcast interview between Pieta Bouma and Olivia Shivas, or read the transcript below.

Pieta Bouma: Kia ora everyone. My name is Pieta Bouma. I have been a paraplegic for five and a half years since I had an accident overseas that gave me a spinal cord injury. I come from the mighty Waikato, but I've been in Tāmaki Makaurau Auckland for the last five years, and now I'm sort of back and forth, and I'm here with my co-host today, Olivia. Do you want to introduce yourself?

Olivia Shivas: Yeah, sure. Kia ora. My name is Olivia Shivas. I am the editor at The D*List and I get to work with lots of cool disabled people in our communities. I'm a third generation disabled person, so I was born with muscular dystrophy. And I use a wheelchair to get around.

PB: So I really wanted to get Olivia in today to talk about a topic I think a lot about. We wanted to talk about risk and specifically with the disabled people have a different relationship with taking risks and doing adventurous or dangerous things than the general population does. I, as a woman with a spinal cord injury, I've noticed in my community how lots of paraplegics and quadriplegics, have their accidents doing something risky, whether it's a sport or diving into a pool or something like that. And often like a very common response after they are ehabbing back into the community is an urge to get back into the same sort of sport or adventure. Which is quite an interesting pattern that I've noticed, and I am always interested in observing as well, the difference between someone who's had an injury that's caused the disability versus people who've been disabled their whole lives.

I sort of personally, I've always been a risk taking person. I love outdoor sports and adventures, and it's almost a response to the background stress of always being told to be careful and to not do this and not do that for medical professionals all around me, is it feels like a lot of freedom to be outdoors and and surfing or skiing or being in a space where, I can take some risks for myself. I would love to hear about how you feel about taking risks. Olivia.

OS: Yeah, I think broadly, I’m probably a bit more risk averse. I think the way, you know, I grew up in my family, I think because we didn't kind of like, the physical abilities to go into heaps of, like, adventurous, physical, outdoorsy things, the kind of like activities we did as a family probably might be considered a bit, a bit safer. You know, we did do things like going camping, but we didn't go on hikes, for example, just because they weren't as physically accessible. And yeah, I think like growing up through kind of like, yeah, a medical system, you've got doctors, nurses and then not just that, but occupational therapists and teachers also like cautioning you to be more careful, and cotton-wooling you a bit. I think that does influence you. 

So it's really interesting to know, like, yeah, I don't know, to think, like, how my life might be different if I wasn't born disabled, if I would be a bit more adventurous. It's hard to say. But I think kind of as I got older and saw other disabled people do more adventurous things that made me more adventurous and be like, okay, well, if they're doing it, I might be a bit more risky and do some dangerous things too.

PB: Yeah, it's always fun to watch what other people are up to and get inspired. The medical profession, like their whole job, they're trying to avoid risk or mitigate risks threat. So that sort of bleeds into us as well. It's hard to know how much of that is necessary and how much of it is like can be ignored, so to speak.

PB: So we wanted to know if this contrast between our relationship with risk was due to our time being disabled or innate personality differences, and we asked three of our friends a few questions about how they feel about taking risks and whether it's to do with their disability or maybe part of their own personality. The first question we asked was, is it society or disabled people ourselves that limits our own risk taking? I asked this of my friend James, who's vision impaired and a big trail runner and cyclist who I actually met doing Outward Bound, and this is what he said.

James: It's not necessarily one or the other that disables it's very easy to think you can and can't do something, and therefore you withdraw and no longer do it just as it is  easy to be influenced by society and its ideas.

PB: Yeah. So that, pretty much sums it up, I think is like the internalisation of what I can and can't do. And then sometimes, like so much of our lives, disabled is a struggle anyway. So if you're going to if you want to go try do something sporty or adventurous that's not accessible, it's like too much energy anyway.

OS: And I agree with him. It's like definitely a bit of both.

PB: Yeah. Hard to separate. And then we've got Ella. Let's hear what she thinks.

Ella: I think society plays a huge part in limiting our risk taking. As disabled people, we're often told to take it easy, that we need help. Or after we asked if we can manage tasks. I've got dwarfism and growing up, I was often reminded that I was lucky that I didn't need surgery like some of my peers did. And that I should look after my body. I limit my risk taking, but I also know my own body. So if I do hurt myself, or injure myself, I know to rest until I can get better at it.

OS: Yeah, that theme of doctors and medical point of view to to be risk averse came through. But I really like what Ella says, I know my own body like I know its limits. You know, despite what a doctor may say, like, I'm making my own choices and what risks I take.

PB: Yeah. And it's not just like in the medical profession either. It's often strangers. If you have a disability that’s visible, like I find if I'm doing anything like, I can go down a couple steps by myself in my wheelchair. But people get so nervous that they're jumping in and it's like, takes away a lot of my own autonomy to take that risk because they don't want to watch it like it makes them too uncomfortable.

OS: Oh, they're like, oh, you need help? Let me rescue you!

PB: And then sometimes just make it worse because they throw off my balance or something.

OS: Should we hear one more from Brad. 

PB: I've got Brad who's a spinal cord injury like myself.

Brad: Yeah I think it's a combination of ourselves and society. Sort of being extra cautious having an injury like a spinal cord injury because you know, the reality is we are more breakable. And I think, you know, there is a lot more fear and stuff, especially early on.

PB: Yeah, that was definitely a hard thing to come to terms to myself is that my body is more fragile now, especially my skin, because I've got lack of sensation below my waist. So I've got to always be extra cautious. Like even something like sitting on the ground on a hard surface is taking a risk. So I think it's taken, it took me a few years, definitely, to learn my limits again and, get a sense of when it is appropriate to take risks and when it's just not worth it.

PB: So next we ask people should we be living more dangerously and why. Let's hear from James again.

James: I wouldn't say anyone should live, you know, dangerously in any sense of the word. But if you mean being more adventurous and open to experiences despite a disability, hell yeah. But it's different story for each person, right?

PB: Hell, yeah, I love that. I think actually a very good point. About the difference between dangerous and adventurous. Like a good risk taker knows where the limit is, right?

OS: And. Yeah, yeah. And it's like taking well-judged risks.

PB: Which is a real skill.

OS: Yeah.

PB: But good distinction there. And I think it's good for everyone to embrace a bit more adventure. What did Ella think?

Ella: Risk taking makes me think about going out late at night. Being around drunk people, being in busy crowds or music festivals. This is also risk taking as society often sees, particularly my type of dwarfism and sometimes an entertainment factor.

PB: That is such a good point from Ella that it's not just about sports and adventure things. It's also like sometimes part of our day to day life, which is really disappointing and sad that that has to play on her mind.

OS: Yeah. Going out, like late at night because I know I've had experiences where I've felt quite uncomfortable and unsafe kind of being out late and I think I went clubbing once and I just hated it after that.

PB: Yeah, it's definitely different in a year when it's hard to see the exit or you can't get through. And people don't always see you because you're below eye level as well. But also like this is a sort of a risk analysis that I think most women do at some point with it when they're thinking about how dark it is and what kind of neighborhood they're in. And it's really disappointing that society imposes those risks on us.

OS: Yeah.

PB: Sees people with disability in a way that might mean it's actually really uncomfortable for them to interact with people who are drunk or. Let's hear what Brad says about whether we should live more dangerously.

Brad: Yeah. I think it's, something that after a bit of time, we should be taking more risks. You know, again, as I said, we are more breakable. So we do have to mitigate those risks and be a bit more cautious. But I think the main thing is making sure that an injury like this doesn't stop us from living a full life. So, you know, and getting out and doing the things that we want to do with our life. So, yeah, I think we should be taking more risks. Certainly not sitting at home doing absolutely nothing.

OS: I think there is an assumption that if you're disabled, you would be sitting around doing nothing, and I don't know where that comes on with it.

PB: Really is.

OS: Is just like physical barriers and like, I mean, I'm sure you've been congratulated for driving your car or like going to the supermarket. The grocery store. Okay. Yeah.

PB: You're so good. I was out for a walk the other day, and an older couple. Oh, you're so good. But I think. Yeah, what Brad brings up there is you shouldn't stop yourself living a full life. And I think it's totally valid to recognise as well that look that looks different for different people. And yeah, some people enjoy taking risks and adventures. And also some people enjoy staying at home and doing arts and crafts or reading or whatever it is. And it's not that everyone should be. I have the same idea of what a full and exciting, meaningful life is, but that our disability shouldn't stop us from pursuing our own version of that, I guess.

OS: Yeah, and taking risks and doing more adventurous things adds more fullness to your life. There shouldn't be barriers in the way for you to do that.

PB: Yeah, yeah. And, and a lot of those barriers, internalised barriers from people telling us our whole lives don't don't do that or be careful or how are you going to, how are you going to manage that? What about your health? What about your injury or whatever it might be? All right. So the third question we asked our friends was, what's the riskiest thing you've ever done or would like to do?

PB: What have we got from James?

James: Be keen to try trail running. It'll be a nightmare. Like, even with the vision I’ve got as it continues to deteriorate, it's going to be real hectic, but I reckon it would be wicked fun. I find myself out running and I've decided I need to stop doing it solo because I've had near-misses. I'm not sure if I told you when I last saw you, but I was out running towards Tamahere and I pulled my earplug out, you know, looking both ways, coming up to an intersection. And then I stopped over and was suddenly like, oh, crap, there's a car right in front of me. So this was in an 80K zone, and I had stopped about a metre from the car. It had just stopped at a stop sign, and I hadn't seen it until I had stopped.

PB: So scary. And brings up the point as well. Like he's just going for a run. It's not, you wouldn't think it would be a generally risky activity, but when you've got a disability in his case, vision impairment, like sometimes just trying to do something quite normal is actually a quite a big risk.

OS: Yeah, there's a bit of like self-awareness and we kind of have to have an understanding our limits. Like we don't want to be doing things like ruthlessly without thinking about risk. And it's unfortunate. So often we have to be the ones who, and, you know, mitigate risks ourselves. It's not like a community or support network around us that's, I guess, creates an environment where we can take risks that aren't life threatening, like scenarios

OS: James could have been.

PB: Yeah, scary. And like sometimes it does feel like just going out into the world, you know, you're faced with certain risks and analysis of, you know, if it's a steep street for me, whether I try it or try find an alternative, it can be like quite constant. I think that's part of what drives me to actually go out and do activities that are supposed to be risky.

PB: Like, I've been really into surfing this year because it's like an area where I've prepared for the risk and I've done everything I can to protect myself. And then it's like, sort of I can play with it a bit more and it's not like forced upon me. It's my choice. Gives me a bit of autonomy back.

OS: We'll hear from Ella about dangerous thing or risky thing she's done.

Ella: And the riskiest thing I've ever done is probably travel overseas by myself. Some of that was through Covid, including MIQ twice. But I made the most of my travels and did this all independently.

OS: Have you travelled? You've travelled alone?

PB: I have, yeah, I did a six month stint in Spain, went by myself to study for a semester. But she's right. Like it is a risk because you can't do everything by yourself. And when you're going into an unfamiliar environment, you don't know who's going to be available to help you or who you know. You might not have someone to call if stuff goes wrong like you do at home.

OS: Yeah, I also studied overseas, and I think one of the things I was nervous about, which I tried to mitigate where I could, was like if something went wrong with my wheelchair overseas, like, you don't have Accessable to call you from home if you got a flat tire. And I actually did get a flat tyre once. And I did bring some spare, like, wheelchair tubes and stuff as a backup, but I don't know how to change them. But I went to a bike shop and they did it for me. And so I guess in my head I’d mentally mapped out a bit of a plan in case something didn't go wrong. Yeah. When we’re put in a situation when I wouldn't have my wheelchair. So there's a bit of yeah, planning and mitigating we have to do.

PB: Yeah. And I think like disabled people are really good at risk mitigation because you have to do it just to exist in society. Like especially with your wheelchair. You've always got to be prepared for it. If that breaks down and you need an immediate fix, really. I remember when I was overseas, my cushion popping and I went to like, I had to go to a mattress shop to get a patch for the hole.

PB: And the lady there was helpful, which was really sweet, that is. Yeah. Without Accessable there or you know, your usual doctor or anything it does feel like quite, quite a risk just to just to leave. What have we got from Brad?

Brad: For me, I think the riskiest thing I've done since my injury, besides getting in the car with one of my caregivers driving, it would be going freediving, which, you know, as a quadriplegic I can’t swim. So, yeah, I think freediving, definitely, something that's a bit more high risk. And I aim to, you know, one of the goals is to live with sharks and some more wildlife. So, I think that's got its risks, but certainly, you know, it makes me feel alive and, it feels like I'm not wrapped in cotton wool anymore, which is nice.

PB: Yeah, that's what it is, isn't it? Like the freeing yourself from being wrapped in cotton wool. And I've seen this video of Brad freediving, and it's the most impressive thing I've ever seen. Like the mental fortitude to be underwater completely at peace. And trusting yourself to know that you can control your mind enough to not need as much oxygen, and also the trust in his diving, diving friends who are there for him.

PB: It's super, super inspiring.

OS: I don't think I’m ready, should take a risk, but good for him.

PB: No swimming with sharks for you? 

OS: No

PB: All right then, Olivia, what's the riskiest thing you've ever done?

OS: I think it was actually, like going overseas by myself, travelling and living in Finland when I was student, because I didn't have any kind of, like, the usual supports I might have kind of went wrong. And like, thankfully, nothing actually did go wrong. But I think it was just like maybe the fear of that, which also made it risky. Like, yeah, I wouldn't have my mum or dad to rescue me if something happened.

PB: Yeah, definitely like, well, I think going overseas by yourself is a scary thing for anybody, but when you've got like all of that extra uncertainty with your health and your wheelchair and like you're relying on on having wheels that are pumped up and nothing broken, like it's a bigger risk for disabled people than anyone else.

OS: How about you?

PB: The riskiest thing I've ever done. Oh, people are most impressed. I think that I went skydiving, but it didn't really feel like a risk because it's like a business they’ve obviously, they’ve done all of the risk mitigation. So it didn't feel unsafe.

OS: For disabled people?

PB: Maybe not. No. I don't think the company I went with was, like, had specialised in disabled people, but I also don't think I was the first. And it went fine and it was great. Yeah, probably more actually risky and dangerous is some of the mountain biking I've done, because as soon as the track's too narrow, because obviously an adaptive mountain bike is wider than a regular one, and there's often sharp drops at the side, so that becomes really dangerous pretty quickly.

PB: And if you're on a track and it gets narrow, there's not much you can do.

OS: Yeah, yeah.

PB: Yeah. But it's a real thrill and so far so good for me. Right, then what's the riskiest thing you would like to do? Will you be swimming with sharks with Brad?

OS: Probably not. I mean, I actually did do surfing. And I know you've done it a lot more. And even for me, that was quite, like, scary. But there was a lots of risk mitigation involved, there were heaps of volunteers. But in the future, what's the riskiest thing I want to do? I mean, not right now, but one day in the future, have a baby, like childbirth sounds pretty risky.

PB: Yeah. And again, like, risk like, that is an inherent part of life. And if you want to have a family, have your own children, it's a risk that you've got to be able to weigh up and take for yourself. Very exciting.

OS: And I like, I mean, childbirth is like, I think risky for anyone, but, you know, medical professionals, what I guess what's going to scare me is I like that they don’t have as much experience with perhaps someone with my disability. So there might be some unknowns.

PB: Yeah, and that's tricky when you're trying to gauge whether they actually understand how your body might react differently or, whether they're making the best decisions for you. It's a real skill to be able to self-advocate. And, sometimes you do have to educate doctors.

OS: How about you, what's your dangerous adventure coming up?

PB: The riskiest thing, I always, I'm so respectful of the risk when I get in the ocean because it only takes one rip and, or a poor judgment call. And so I've got a lot of respect for the ocean and for going out there. I'm going out again this weekend, actually. And yeah, keen to do more mountain biking, bit of skiing if I get the opportunity.

PB: And I'd love to try freediving one day. Like Brad, I'm just so inspired by the mental fortitude it takes. And, yeah, I think that's a sort of new type of risk that I'd really like to explore.

OS: Yeah. And I think that's what will encourage disabled people to take more risks and more adventurous things is by seeing others do it.

PB: Yeah. So we've heard from James, Ella and Brad about how they feel about risks and what sort of risk they take or would like to take. Where do you think we've got to with the topic?

OS: Yeah, I think some like final thoughts is that we want to be able to decide what people should be able to take risks, and make their own judgment calls. But hopefully there's the right supports in place that it's not life threatening. And also that we don't let society's, I guess, judgments or thoughts, impose on our own risk taking and what we want to do to have a full life.

PB: Yeah. And that's a real skill for us to be empowered to actually understand our own bodies and our own abilities and then ignore the, what other people impose on what they think we should or shouldn't be doing. And I actually like this is a risk I have assessed myself and I'm willing to take. Yeah. May we be able to do that without feeling pressured by society to wrap ourselves in cotton wool.

OS: Yeah.

PB: So big thank you to James, Ella and Brad for their contributions. It's always good to hear from a diversity of people with different experiences and different disabilities. And thanks to my co-host, Olivia, I hope to be back in the studio with you again soon with some new exciting topics to dive into.