Category Archives: Belonging

Member Benefits

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Inspiring people in this world – they get pushed at me, or else I tend to get introduced to them. Over the past few years I’ve had the pleasure of meeting more than a few. Which is why I write about inspiration. Same as you, I talk about inspiration because I’ve been inspired.

Recently though, I happened to meet a guy with a humble kind of fortitude that is worth actually introducing.

I met John through a prosthetist in Australia that I visited for an emergency joint repair. The long-term fix required the welding of little bits of metal into the joints. The prosthetist turned to me and said “I could do this for you, but the thing is there’s a guy who lives not far from you who could probably do it better”, as he passed along the guy’s phone number.

I rang up John totally out of the blue, and he invited me out to his home-based industrial workshop. From what I gather, John is a jack-of-all industrial trades and design kinda guy, but without the engineering degree. His workshop is massive and full of all kinds of cool-looking stuff I can’t identify. From my perspective all that matters is that he’s got a TIG welder and he knows how to use it. The shop also contains a number of high-end racing motorcycles and the trailer to haul them around in.

John was in a motorcycle accident involving a car 12 years ago. He broke his back, hips, pelvis, and legs. His right leg was fractured in six places. As he recounted, “they told me I would never walk again, when all they really needed to do was take me right leg off” [under-the-breath chuckle]. They did take his right leg off, quite high above where his right knee would have been.

For the record, he walks. He also works in industry. He asked me if my leg ever hurt, and then went on to explain “…me leg only really bothers me when I’ve had a 12 hour day on a ladder”. He took a pay out after his accident. As a result all of his prosthetic expenses today come out of his own pocket. The obvious solution to this little challenge was to make his own legs. For real. Apparently John shapes his sockets by heating them up, putting them on, and bearing down on them while riding a stationary bike. Or something like that.

Some time ago, he got on a motorcycle again. He now races against ‘normals’ without wearing a prosthetic, rather attaching a platform to the right side of his motorbike to put his stump on. The brakes he moves up to the left side of the handlebars. He swims and bikes as part of his training. He was a bit under the weather the day I first met him: “You know, I’ve been celebrating the past few days because I won me last race. I’ll tell you something, it makes guys sit up and pay attention when they get beaten by a guy with one leg.” [that under-the-breath chuckle again]. His season just recently finished. John ranked second…Nationally.

One of the best things about having 1.5 legs is that I have an excuse to call up people like John. I’ve found that most people with artificial limbs are pretty forthcoming about how they manage to do what they do, I suspect because of all the often solidary trial and error one must undertake to figure out the technical stuff. It’s a cool little unofficial club. I mean, let’s be real, the cost of membership can be pretty high. But if you happen to find yourself standing in line, waiting to enter, I would suggest seeking out the members like John.

In The Beginning

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I started climbing about the middle of 2007. I was working in the interior of British Columbia for a brief stint, and started going to a local climbing gym. I then took a two-day ‘Introduction to Outdoor Climbing’ course in Penticton at the end of that summer. After that I moved to Calgary and started hanging around one of the several local climbing gyms there. Same sort of deal as learning any individual sport as an adult – It could as easily have been tennis or golf lessons.

During these beginning phases, I was cramming my walking foot (the plastic one) into a climbing shoe. I know now that a foot designed for climbing is a different thing than a foot designed for walking, but at the time it was the available option. I’d never met anyone without a leg who climbed – I hadn’t met that many climbers, even and I simply assumed I was one of very few… (we prostheletizers can do the ‘assumption thing’ as easily as anyone).

I spent about a year and a half thrashing away, not being able to do much with my leg foot apart from employing it as counter balance and taking small steps onto bookshelf-sized holds. After one particularly frustrating day, I came home and Googled ‘prosthetic climbing foot’, or something similar. One of the top hits I received was a link to a thing called The Eldorado Z-Axis Climbing Foot. Its description mentioned Malcolm Daly and Paradox Sports. I decided to drop Malcolm an enquiring email and his response was to invite me to Ouray, Colorado to go ice climbing. In six weeks. So much for calculated career planning.

Meeting up with the Paradox crew in Ouray in the spring of 2009 was one of those eye-opening encounters. I think one of the consequences of limb loss due to cancer is that you end up in the ‘cancer crowd’, as opposed to the trauma-leading-to-missing-body-parts-or-loss-of-function crowd. They’re really quite different scenes. The majority of childhood cancer survivors reach the other side with limbs intact, and once you’re over the chemotherapy, I think there’s a tendency to move away from the community, as part of your own recovery process. As a result, I knew very few children without limbs during my cancer treatment days, and none afterwards. I attended one Champs seminar (think weekend health retreat only replace the meditation sessions with artificial limb show and tell), but I think I was too young and wrapped up in the whole treatment process to keep up the connections. By 2009, I was feeling pretty alone with my whole one-legged process.

When I went to Ouray I was all of a sudden immersed in this community of people who climbed, skied, cycled, ice climbed, snow boarded, paddled… They were getting out there. And while some ‘normals’ were invited along for the ride, most Paradoxians were missing something, whether it was a limb, a few fingers, or use of part of their body. Together we climbed frozen waterfalls. We ate. We drank beer out of somebody’s leg. All the usual climbing trip shenanigans.

They’re an inspiring crew. If you ever have the opportunity to go to one of their events I would suggest jumping on it – You’re likely missing more than they are.

The Cat Killer

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Years with a prosthetic leg have provided me with some interesting encounters with curiosity.

During the end of high school I was a lifeguard and instructor at the local swimming pool. The first day of class was always an experience. From that vantage point, curiosity seemed to win out over the indoctrinated social politeness until about the age of 5 or 6. Frequently, the first class with five-year-olds would involve a brief circle of question and answer that went something like this:

Kid: “What happened to your leg?”

Me: “I was very sick when I was a little girl and the doctors had to take it off. They gave me a robot leg instead.”

Kid: “Oh, okay.”

And that was it. No further explanation required, and afterward the kids never seemed to take much notice. Sometimes there would be no words, and then one or two kids would slide across the circle to touch it, looking to me for permission that I always gave. I vividly remember this one class when the kids sat down in a circle and the little boy to my left slid right up next to me so that his right leg was touching my left leg, looked me in the eyes, and rested his hand on my leg without saying a word. He stayed there until I got the class into the pool.

I wrote about the curiosity of children in the post ‘One Leg, Two Eyes’, and how the response of others can shape that curiosity. One of the consequences of having a visible history of trauma is you see, on a social level, what we do to shape, and restrict, curiosity.

Curiosity has a cultural element. In places I’ve worked in Southeast Asia, including Sri Lanka, India, and Indonesia, curiosity seems to be something that is embraced, or at least not discouraged. I go for massages from local women because it gives me an opportunity to talk to them, and put money back into the local economy in exchange for a service (as opposed to stuff, see the post First World Problems). Without exception, all of these women have asked me what happened to my leg. The last time I was in Indonesia the masseuse put her hands on my leg while saying, “I’m sorry, I’m sorry, I’m sorry.” She ran her hands the length of my leg, and it was clear she had never seen anything like it before. Her curiosity was palpable, and I sensed there were many questions she wanted to ask. It seemed that only her English held her back.

Compare this to a recent encounter I had with a woman from work, here in Australia. We’ve known each other for months, and I’ve been to her house a number of times. She came to drop something off at my house, and I answered the door in shorts and a T-shirt. We had a conversation standing on the front porch, while she clearly made an effort not to even glance at my prosthetic leg. There’s no way she didn’t notice. She drove away without saying a word, and we’ve never discussed it since.

Humans are naturally curious beasts. Friendship and intimacy develop from mutual exploration into the human experience of others. I believe some of our ability to connect with one another has been lost in Western culture, and that this is, in part, because of the way in which curiosity gets smothered in favour of politeness, or social correctness, or our fear of asking too much.

AWKWARD Moments

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So yeah, I’ve gotten pretty good at keeping my artificial leg under wraps. I don’t feel nearly as compelled to hide it as I used to be, but there are still those in my daily life, particularly at work, who I’ve never raised the subject with. When they haven’t made any comment, I can only assume that they don’t know about ‘it’*.

One of the consequences of this charade – if you will – is that either the situation arises, or I develop a close enough relationship with someone, that I feel it’s necessary to tell them. Almost always, I feel apprehensive when this time comes.

It is rare that I get a good lead-in. I mean really, how often do any of us think to drop the question ‘any major childhood illnesses or artificial body parts we have yet to discuss?’ Since the topic is something that doesn’t naturally come up, I always feel like I’m raising it out of the blue. My default opening is ‘there’s something I want to tell you…’ Yeah, I know – I’m setting myself up for awkward out of the gate. I’m open to suggestions.

Then there’s the looming discomfort about what reaction my revelation is going to receive. Generally, these fall into one of three categories; The first is the “I know”. The second being the “oh…”, followed by a look of confusion, followed by awkward silence. I still don’t know how I’m supposed to dispel the tension.

The third category is the “…Really?” My favorite variation on this theme coming in the form of “you’re joking!”…which I can’t help but find entertaining. Who makes that joke?

(I have contemplated making that joke: “No shit. After I lost the limb in a freak shark accident, I put myself through grad school by contracting my leg to mule contraband. No border guard wants to touch it.”).

Sometimes what follows is a bit of Q & A. Other times the conversation moves on to a different topic. Generally, I don’t volunteer many details. I believe if someone is interested, they’ll ask.

I struggle. I am by nature quite introverted. Decades on, telling someone about my artificial leg still feels like I’m opening up a part of my life that I’m very private about… or was private about, until I began this blog.

*Do I say ‘it’ or ‘them’ as I’ve got more than one leg to wear?

Short Note

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For 15 years I almost never wore shorts. And I am selective about the circumstances under which I wear them. I always wear pants to work, where shorts are common attire. When out in the small town where I live, I typically wear pants. But, these days, when I climb, I almost always wear shorts. I do this because it’s too hot for pants most of the time, plus, it allows me to use the socket of my prosthetic to move up as I climb.  Also, I climb on a customized foot that is half the size of my right foot and I swap feet before climbing, which means that my leg is really no secret out at the crag.

However, it was not always this way. When I first started climbing about 5 years ago I climbed only in pants. I bought my first pair of shorts in a very long time about four years ago.

I chose pants as a teenage, as I was entering high school. It was a long time ago, but I think my decision had as much to do with my search for normalcy as it did with attempting to conceal my prosthetic. At that point in my life I’d spent over two years undergoing chemotherapy, surgery, and smiling bravely for concerned adults. I’d had enough of being gawked at. I was starting high school in a different city, which meant a whole new group of kids I’d never met. I think, like most adolescents, I just wanted to fade into the background.

Today, I continue to choose pants over shorts, mostly. I suppose this is because I want some control over my first impression on people. My gait is good enough that unless a person pays close attention, my artificial leg goes undetected. There are other things that I do. Without thinking. Almost.

When I sit with people on a couch, I will sit to their left so my ‘real leg’ is closest to them. And I will often walk just behind people if I’m concerned about appearing awkward, such as when walking on uneven or sloping ground. There are people I have known for years who don’t know about my leg, and in some instances they have found out only because I’ve told them.

We all do it: We form associations with the people that we know according to particular characteristics. These characteristics can be physical or associated with personality. We describe people to others according to these characteristics. And I suspect most of us have had the thought ‘I don’t want to be known as the [blank] girl.’

I am comfortable with my artificial leg, but I am uncomfortable with the idea of being described according to it. I’m happy to be ‘the tall girl’, or ‘the blue-eyed girl’. Just not ‘the-one legged girl’. And I’ll take pretty much anything over ‘the disabled girl’.

I listened recently to a podcast about an actress who manages this sleight of hand better than I. I’ve included a link to it here.

One Leg, Two Eyes

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There are a variety of reactions I get to my prosthetic when it’s out in plain sight. There is this reaction that happens with parents and children that I struggle with, and it happens with enough frequency that it is worth comment.

On one recent occasion I walked into a fruit shop on a Sunday afternoon – post climbing, clad it shorts, hiking boots, a T-shirt, and more than a bit of dirt. The place was busy, as expected, and there was a mother, and her child of about four years of age just down the aisle from me when I walked through the door. The child looked at my leg, gave her mom’s skirt a tug, and pointed. The mother pushed the child’s hand away and then used her other hand to turn the child’s head away from my direction. The child kept craning her head to look back, while the mother’s hand continued to oppose the turning of the child’s head. These types of interactions happen fairly regularly. There is one time I remember quite distinctly when the parent loudly ‘shhhhuusshed’ the child while standing no farther than five metres from me.

Over time I have come to try to connect with the children involved in these interactions. I see the parents, who I believe are suspended in fear and embarrassment, as being beyond my reach. On this occasion I made eye contact with the child and smiled, in hopes of acknowledging her curiosity and letting her know that I am a person much like her, just a little less symmetrical.

When I’m feeling less tolerant I am tempted to walk up to the parent and say something to the effect of ‘I may have one leg but I also have two eyes, and they work just fine. And just so we are clear, I see you.’

There exists no social script for such scenarios. I walk away from these encounters feeling disheartened. I’m not sure what the ‘right’ reaction is to a child’s curiosity about a physical characteristic that deviates from normal, and I doubt there is a ‘right’ reaction, but I believe that this kind of encounter sheds light on the pervasiveness of stigma in our society, and the ways in which it is fostered in children. I often wonder if there is any further discussion when these families go home.

My hope is that this blog helps to counter some of the stigma that has become so common in polite society. After 20 years with a prosthetic leg I have come to believe that by failing to talk about it openly and that by concealing it in public, I help maintain that stigma. I do not want that to be my contribution.

First World Problems

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I am quite fond of the acronym ‘FWP’. I will often throw it out there after someone asks me about a challenge at work, just to remind myself that my problems are so few and so incredibly small relative to those of the majority of the people on this planet.

Recently, I was made wholly aware of the fact that the challenges I have with my prosthetic leg are also rooted in the first world context.

I have spent a fair amount of time in South-East Asia as part of my professional life. Every time I return to this part of the world I am reminded of how much I take for granted the luxuries of the first world – education, health care, potable running water, roads, transportation infrastructure, a safe and secure food supply, security, a functioning justice system, the list goes on and on. And every time I’m in South-East Asia I try to put money into the local economy in the form of service consumption because it seems to be one of the easiest ways to get money into the hands of people who need it, particularly women.

So the last time I was in Indonesia I went for a local massage. The woman asked me to take off all my clothes, as you are expected to do in these places. I’ve had a few massages before in various locations including India, Sri Lanka, and Indonesia, so I’m used to having women ask what happened to my leg. It’s interesting that what people guess to be likely the cause varies by setting. In Sri Lanka and the United States, I am most commonly asked if I am a soldier, while in Indonesia and India the first guess is usually motor vehicle accident.

Traffic accidents are one of the leading causes of disability in places like Indonesia, and one only needs to step out onto the street to realize that there are a lot of accidents involving pedestrians. I can only imagine that with the standard and availability of health care, limb loss is a common outcome.

In this instance, when I told the woman that I had been very sick as a child she was quiet for a while, and then said something to the effect of ‘if you were a woman in Indonesia you would not leave your house.’ That was it  – no follow up, no explanation, just those words. Her simple statement broke my heart.

It is because I was born in the first world that I received the treatment and surgery necessary to survive childhood cancer. It is because I live in the first world that I have access to people like Jon Allen who equips me with best prosthetics available to live an active life. And while I have had the experience of feeling marginalized as a result of my artificial leg, never to the degree that this woman so plainly described for me. I can only imagine the poverty and trauma that can stem from limb loss in these types of settings. I hope, with naïve optimism, that my presence in places like Indonesia shows people that such social exclusion is not the only way of responding to limb loss.

Mostly though, at the end of this encounter I was conflicted with emotion that was equal parts gratitude and powerlessness.

The “D” Word

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At the age of eleven I was diagnosed with bone cancer. Treatment required a surgeon cut off part of my left leg. I’ve grown up wearing prosthetics, and today, at 31, they’ve become part of my normal. Yet in spite of this lengthy period of adjustment, I still choke on the word ‘disability’.

I avoid uttering the phrase ‘I am disabled’. I do not like attaching the “D” Word to myself. If necessary, I try to be careful to say that ‘I have a disability’. I’m prepared to to acknowledge that I have a disability, but I am very resistant to the idea that it is central to my person.

The Oxford English Dictionary defines the prefix ‘dis-‘ as ‘denoting reversal or absence of an action or state’. It defines ability as ‘possession of the means or skill to do something’. The World Health Organization’s definition almost makes me gag: ‘Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.’ I’m left with this sense of being discredited and dehumanized as a result of a physical trait that I cannot change.

My problem with the “D” word is the emphasis – it creates identity through that which is not. This conflicts directly with the way I approach living. I look around and see endless possibilities.

Yes, many things require persistence and a bit of brainstorming, but usually I feel more limited by perceptions of my prosthetic, and my fear that it will be perceived as a weakness or a fault, than by the prosthetic itself.

None of the accepted synonyms are any better. My good friend Malcolm Daly likes the word ‘gimp’. In fact, he often refers to ‘gimps’ and ‘normals’. I must admit, I was initially uncomfortable with the idea of being a ‘gimp’ but I have come to prefer the word to ‘disabled’. However, I think it is unlikely that ‘gimp’ will enter into common usage in the English language.

Let’s face it, saying ‘there is a physical part of me that deviates from what society defines narrowly as normal’ is a bit of a mouthful, and I have not been able to come up with a decent alternative to the word ‘disability’.

The “D” word, and to whom it applies, needs to be reconsidered. Let’s start that process now.