Christa Couture sees beauty in resilience

Photos by Jen Squires

By Louise Kinross

I was scrolling through Twitter when my eyes locked on an image of a pregnant woman. Taken from the side, her belly was the centre of the photo, and her closest leg had a brilliant floral pattern on it that matched her cropped shirt. It was a prosthetic leg. I clicked on the link to find this CBC piece by Canadian folk singer and songwriter Christa Couture: I Couldn’t Find Any Disability Maternity Photos, So I Created My Own.

In the article, Christa writes: “I struggled to imagine my own maternity photos when I couldn’t find any examples of them with a body like mine…There aren't a ton of one-legged people out there, true, but it wasn’t just that I didn’t see any amputees in maternity photos—I didn’t see any kind of disability. At all. Or really any other body differences.” So she did a shoot with photographer Jen Squires.

Christa's leg was amputated at age 13 due to bone cancer. She's experienced the loss of two sons: Emmett and Ford. “It took time to be open to a pregnancy," she told me. “I knew it would be hard because I have a disability, and because it would bring up stuff around Emmett and Ford that I probably wouldn’t have to confront if I didn’t go through another pregnancy. But I kept coming back to how much I wanted it, and I wanted so badly for it to be different. That desire overpowered the fear.”

We spoke about her amputation and why she hopes the next person who does a search for 'disability and pregnancy' finds her photos.

BLOOM: What was it like as a young teen to experience having your leg amputated?

Christa Couture: I was first diagnosed with Ewing's sarcoma when I was 11. I had chemotherapy and radiotherapy and went into remission. Then, just before my 13th birthday, the pain came back. Very quickly, a couple of days after they did a biopsy, my leg was amputated.

When people ask me about what it was like, I tell them ‘I don’t know what it’s like not to have cancer.’ Not only was it normal for me, but I was spending a lot of time in hospital where I was surrounded by other kids with cancer. As much as that’s a painful reality and now, as an adult, I’m like ‘Oh my God, we were so small,’ at the time, we didn’t have that perspective. It was just our world.

I had cancer when we lived in Edmonton. I have great memories of nurses who were so fun and made the experience as good as it could be. It was hard, because I was really sick, but it was so normal. It wasn’t until my later teens that I came to terms with the fact that it was really difficult at the time. 

When I was in high school with a thousand other people, none of whom have cancer, I realized I’m kind of unusual. This is an extraordinary experience. I felt separate, especially after losing my leg and being in the regular world, knowing it wasn’t normal, and everyone was going to stare and ask me what happened.

I didn’t even recognize it as permanent until I was in my late teens—that I have one leg and as I move toward being a young adult, things were physically harder. Like finding a first job when you can’t be on your feet all day.

In some ways it was like an exaggerated adolescence. It’s already this time of change, and becoming aware of your body, and for me it was a dramatic, radical change, and I had to learn how to walk again.

BLOOM: I’ve seen other kids who learn how to walk with prostheses here, and it’s always struck me how hard it is. I think there’s a public perception that you just put on the technology and get up and go.

Christa Couture: People don’t realize how challenging a prosthesis is, because they see what looks like a limb, and they think it must operate like a limb. But this is not a limb that works like any other part of my body. It’s a device that doesn’t come naturally.

I had to program my brain to use this equipment, and it was a long, slow process. It was like taking my first steps again. It wasn’t until some point in my 20s when I felt like I could function pretty easily. It’s a huge learning curve, and it’s not at all like having two legs. As someone who has an acquired disability, I remember what it was like before, and it’s completely different.

I don’t know if people expect it to be easy because they see Paralympic athletes.

BLOOM: Elite athletes.

Christa Couture: We don’t tend to see people who are using prosthetics in an ordinary, daily way. The reality is that it’s challenging and slow and it means not doing a lot in a day physically.

BLOOM: What advice would you give a child who's at the beginning part of rehab?

Christa Couture: I would say it gets easier, but it takes a long time. There’s good cause to be hopeful, and to know that your body will get stronger and will adapt and will learn. But it’s not quick, and it’s realistically difficult to do. Eventually everything is possible, but you’re going to be doing it a little differently.

Now, I love the way things are different for me. At this point, the experience of losing my leg and having a disability feels like I’ve been to a country most people haven’t been to, and I have this perspective which is so rare and feels precious. It feels amazing that I’ve gotten to know something about myself that many don’t—as far as resilience and adaptation and adjusting. There’s ways that it’s harder and it’s a major bummer. And then you get used to it, and you get good at it.

BLOOM: I read that your current leg has a micro-processor in the knee?

Christa Couture: My folk music community raised $25,000 to buy a knee that costs $40,000, and is not covered by public health care. Then I got this floral thing done to make it decorative.

Because there was media coverage, a lot of people knew about the knee, and they thought ‘she’s now part robot.’ People would say ‘Is everything better now?’ And I had to tell people it’s a little better, but I can’t leap over buildings. It’s not a super power.

What is better is that I fall less often and I have better stability when walking on rough terrain. That for me is a huge difference. But it’s not a super computer and it’s not like I can charge my iphone with it.

The things I can do now, for anyone with two legs, are really basic.

BLOOM: The design on your leg is gorgeous. It looks like it’s painted.

Christa Couture: It’s actually a fabric that’s laminated. It’s a linen upholstery fabric that I found in this ritzy furniture store and I really loved the design. I had seen hand-painted prostheses. There’s a company in London called the Alternative Limb Project that does them, and they’re very artful. I showed a picture to my clinic and asked ‘What’s the affordable version?’

BLOOM: We laminate all kinds of things here on prostheses for kids, like their favourite characters or sports teams.

I read an essay that you wrote about your children Emmet and Ford, who died. You wrote about how challenging it was to know how to respond to people when they ask you if you have kids.  

I also read a piece where you shared your favourite books on loss, and Ian Brown’s The Boy In The Moon was there. You wrote that you read it while you were at Ford’s bedside in the hospital. How did you find the courage to get pregnant after these experiences?

Christa Couture: They were such painful experiences that it took a long time to be open to trying. I knew being pregnant I would be terrified. 

Losing one child is something, but losing two doesn’t happen that often. People kept saying ‘It’s so rare,” but for me it was 100 per cent of the time. With Emmett it was because of complications of labour and with Ford, he had a rare heart defect that's not genetic. Then I met other bereaved parents at a group at Canucks Place in Vancouver, and I learned about every way that a child could die.

I knew the best-case scenario would be what I have now, which is a healthy child at home.

But I knew it would be hard because I have a disability, and because it would bring up stuff around Emmett and Ford that I probably wouldn’t have to confront if I didn’t go through another pregnancy. But I kept coming back to how much I wanted it, and I wanted so badly for it to be different. That desire overpowered the fear.

My son Ford lived most of his life in an intensive care unit. He had hypoplastic left heart syndrome. Most of his life he was in hospital, and much of that time he was intubated and had multiple surgeries. I wanted so much for this pregnancy to be okay. I don’t know how I would survive if something happened to my daughter, but we never really know what we’re capable of.

BLOOM: You said on Metro Morning that when you searched for other maternity photos of moms with disabilities online, you didn’t find them. 

Christa Couture: It was discouraging. Especially because I was considering being a single parent. There were lots of stories about single parenting, and about single moms by choice, but never did I ever see any of those people with disabilities. Even though intellectually I thought surely disabled people are parenting, when I couldn’t find them, I thought maybe this is a bad idea. Maybe they all realized it was a bad idea, and I’m fooling myself.

BLOOM: What was so interesting about your CBC piece was that you said it was the first time you’d taken your prosthesis off for a photo.

Christa Couture: That was really significant. I’d wanted to do it for a few years. I wanted to do it for myself, and to confront my conflict about it.

It felt vulnerable because my leg is scarred and it’s—whatever shape it is. I think people see my prosthesis with the flowers and hear about the micro-processor and think she’s part robot and that’s cool. They see a cyborg and think it’s edgy and a fun thing to do. I was worried in taking it off that I would lose that—that people were going to conjure more deformity or injury or a lack.

But I wanted to make it public, because any time I see someone share their difference—it doesn’t have to be a missing limb—I feel more empowered in my own difference. I knew people might do a double take, because they’ve only been fed images of certain bodies. But we need to normalize these differences.

There were two women who really inspired me to think I could do this. One is Alexis Hillyard with her cooking show Stump Kitchen. She uses her arm with a stump to clean bowls and get peanut butter out of jars. CBC Parents has created a kid-friendly version of it.

The other was Kaleigh Trace, who wrote Hot, Wet and Shaking. She was in a car accident when she was a child and had a spinal-cord injury. I loved reading about how she figured things out. She wrote about crawling around, and being so amazed when she figured out that she could carry stuff in her teeth.

It was those two women who made me believe that maybe I could see myself as someone cool.

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'He takes the time to hear me'

By Louise Kinross

John Kooy (left) is an orthotist at Holland Bloorview known affectionately as “Dr. John” to some of his patients. Here’s how a couple of Holland Bloorview families describe him:

“Dr. John is always so nice to Lucas. He always has toys for Lucas to play with and shows great patience with him. He's always polite and asks Lucas if he can look at his leg and foot before holding Lucas’s foot. He really puts Lucas at ease. He's one [professional] that Lucas isn't scared of!” And from eight-year-old Jillian (centre above, with Dr. Mark Camp right): “He's amazing! He takes the time to hear me and make amazing ankle-foot orthoses!”

John is the team lead for orthotics at Holland Bloorview and collaborative practice leader for orthotics and prosthetics. He’s been with us for 16 years.

BLOOM: How did you get into this field?

John Kooy: I went to York University with the intention of getting a bachelor’s in physed and going into sports medicine. But it wasn’t what I thought it was. So I dropped out of university and worked with a private swim school. I’d been a swim instructor and life guard since I was 16 on the lake where my family had a cottage. At the same time, I started looking through school calendars at other programs and came across the prosthetic and orthotic program at George Brown College. I did a two-year technical program, a two-year clinical program and then a two-year residency. You learn prosthetics and orthotics in the program, but I chose orthotics because that’s where I got a job.

BLOOM: What is an orthotic?

John Kooy: It’s an external support commonly referred to as a brace. It’s used for improving function, correcting a deformity, or stabilizing or protecting a part of the body.

BLOOM: What’s the most common kind?

John Kooy: Ankle-foot orthoses (AFOs). They’re used by kids who have neuromuscular or musculoskeletal conditions like cerebral palsy, spina bifida, muscular dystrophy or arthrogryposis.

BLOOM: So you started out at West Park working with adults. What was it like to come here and focus on kids?

John Kooy: It was a big change, but I’d spent many summers running swimming lessons when I was younger.

BLOOM: What do you like about working with kids?

John Kooy: It’s the challenge, the passion, the fun.

BLOOM: What do you do as collaborative practice leader?

John Kooy: Help to put structures and mechanisms in place to create a collaborative environment. An example is the centralization of the electronic medical record. Prior to going with that, all of our documentation in orthotics and prosthetics was separate and hand-written.

BLOOM: How does the electronic health record improve collaboration?

John Kooy: It improves transparency and communication because you can easily refer to other clinicians’ notes and access reports from SickKids. One of the big ways it improves timely care is when a child gets admitted post-operatively from SickKids. We have easy access to the physician’s orders, so we can plan for what they need and when.

BLOOM: How many children would you see in a day?

John Kooy: Between three and five. I also see adults, so I see them through the life span.

BLOOM: How do you create orthotics?

John Kooy: It starts with an evaluation and watching them walk.

BLOOM: Then you do casting?

John Kooy: We call it shape capture now. So the client either steps onto a foam impression or we use special tape that’s wrapped around the limb and held in place until it cures. That gives us a negative impression of the limb and then we turn it into a plaster positive model.

BLOOM: That’s what you do in the white room, which is like a workshop?

John Kooy: Yes, the white messy room. We work with the model of the limb to sculpt or shape our final orthotic or prosthetic.

BLOOM: Is the white residue in the air from the plaster?

John Kooy: It's predominantly plaster. We sculpt the plaster models with various rasps and carving tools. We add and remove plaster as needed from the model to ensure proper support without putting too much pressure on bony areas, as well as defining the final shape. We then use sanding paper and screen to smooth the final finish.

BLOOM: What’s the benefit of making them on-site?

John Kooy: We can better control the process for quality and when clients need adjustments, it’s easier to do it in house.

BLOOM: What’s the greatest challenge of your work?

John Kooy: One of the greater challenges is you can’t expect a typical day. Something always happens outside our schedule—whether it’s a child in a clinic that needs to be seen for an evaluation while they’re here, or a new inpatient that’s having problems with a post-operative cast. These are things that aren’t in the schedule.

BLOOM: Are there other challenges?

John Kooy: Maintaining clear communication and understanding and inviting everyone’s perspective. Not looking at everything as a cookie-cutter scenario, but realizing that everybody has different opinions and goals and needs and wants. We may hear the opinion of the therapist or physician and then meet with the family and client and they have a different idea. So we might have to circle back and ask the therapist ‘What do you think about x?’

BLOOM: Isn’t the experience of getting fitted for orthotics frightening for some kids?

John Kooy: Anxiety is definitely a challenge.

BLOOM: What do you do to manage that?

John Kooy: Everything from getting down to their level to finding ways to engage them in the process and make things fun. For example, if I’m shape capturing with the tape, I’ll give them a pair of gloves to put on as well. We get to know them and ask about what happens outside—at school, on the weekend, or when they go on vacation. We see them over decades, easily four to five times a year, so we get to know them very well.

BLOOM: You’re very calm.

John Kooy: Calmness is something I am recognized for. Not too many things get me wound up. I’ve always said that I'd never give up my clinical work because it’s stimulating, it’s engaging and there’s value in having that perspective of being on the frontline when you’re a leader.

BLOOM: What do you love about your job?

John Kooy: The energy. The stimulation of watching the kids change as they reach various goals. They’re excited to tell you about it. Just now as I came through the second floor waiting room to come downstairs one of my families was waiting for a clinic. The client told me how great school is and his plans for the summer, and the mom said how much of an improvement she and the teachers in the school have seen in his overall function for walking, balance and movement.

BLOOM: What skills do you need to be good at making orthotics?

John Kooy: Creativity. You have to be open to ideas. Empathy. A good listener. You need to be able to visualize in 3-D. You need to be able to see that end product before it’s there.

BLOOM: Is it an art?

John Kooy: There’s definitely an art and hand skills in the fabrication side of things. I do some fabrication, but for most of it I rely on the technical team behind the scenes.

BLOOM: What’s the biggest change in orthotics since you came here?

John Kooy: How we customize the orthotics with pictures and patterns. That’s huge. The kids get to select a pattern or image. It could be a sports team or a character from movie or TV. A couple of kids who are keen artists have provided me with an image of their art work that we’ve transferred onto the orthotic.

It’s gone from ‘This is what you get, and we can put a blue pad or a pink pad in it,’ to ‘The sky is the limit, let your imagination run wild.’ My team has rarely come up with something they can’t do.

BLOOM: Why is personalizing orthotics important?

John Kooy: It allows children to express their identity. We’ll often hear kids in the school comparing what they have on their orthotics: ‘What did you put on yours?’ We did have one problem with a child who chose a skull and crossbones, which his school felt was inappropriate. We had to change that one.

BLOOM: That’s funny. Have your thoughts on disability changed over the years?

John Kooy: I don’t know that they’ve necessarily changed. I think there’s still a lot that needs to be done with access and what happens outside of here. Looking at the [physical] environment, and looking at the transition to adulthood. We see the adult population in our area, so that puts us in a unique position. As we’re evaluating change in terms of the hospital’s transition strategy, we need to be part of that conversation.

BLOOM: What happens to clients when they graduate?

John Kooy: They’re living in the real world where they can’t find a care team to really understand what they’re looking for. I wish they could be connected with someone who has the same level of understanding of their condition that they find here.

Some will advocate more for themselves, and others will drift back into that black hole and say ‘that’s the way it is.’

BLOOM: And then they develop secondary health problems. It must be frustrating for you after working with them for so long.

John Kooy: Yes. In talking about disability, it’s not what needs to happen in here. It’s ‘Wow, what more could be done beyond here?’ I try to be a listener, and help adults work through their thoughts and ideas.

We play an important social role in their life. That’s how typical days turn out not to be typical days.

BLOOM: If you could change one thing about the health system, what would it be?

John Kooy: Better funding for technology. Right now AFOs are covered under Ontario’s Assistive Devices Program, but shoe modifications, in-the-shoe orthotics and some other orthotics aren’t.

BLOOM: I know how expensive those are, and they’re often not covered under a parent’s health insurance at work. If you need a lift on your shoe because one leg is shorter than the other, or in-shoe orthotics because you walk on your ankles, those are medical, functional needs.

John Kooy: The other thing I’d like to see is a change in recognizing the types of disabilities that can receive technology. For example, autism isn’t a recognized disability to receive a custom protective helmet.

BLOOM: Is it just kids with seizures who are approved for that?

John Kooy: Yes. If we need to create a custom protective helmet for a child who self-harms, the entire process costs from $300 to over $2,000.

BLOOM: What emotions come with this job?

John Kooy: I don't think there isn't an emotion. Happiness, laughter. Sadness when you feel it's been a stressful day for a family or a child is in pain. Some of the treatments are going to elicit pain or discomfort or anxiety. A lot of the times you have to block that out, knowing that a treatment is needed and that we'll work through it together. In the end, we'll find a way, maybe not at that appointment, but at the next, to laugh about something.

BLOOM: Do you do anything to help you cope?

John Kooy: I enjoy outdoor activities like skiing, sailing, biking and hiking. I like to travel. Also, Holland Bloorview is such a great family environment among teams and across the hospital that there are always opportunities to share a story or a laugh.

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A big idea: Mobility for all

By Louise Kinross

It’s a tough business problem: how do you commercialize a medical product for a niche market that can’t afford it?

For 10 years, Holland Bloorview scientist Jan Andrysek envisioned millions of amputees in the poorest parts of the world regaining their mobility and livelihood with the all-terrain prosthetic knee he invented and developed.

But it wasn’t until American social entrepreneur David Green got involved in 2013 that he found a way forward.

This year Jan and David—along with Emily Lutyens and Brandon Burke—founded LegWorks, a socially-minded business that aims to make high quality prostheses available to amputees worldwide regardless of their ability to pay.

The all-terrain knee is its first product. The knee is sold at market rates in 10 high-income countries so that it can be sold at, or near, cost to non-government organizations, hospitals and rehab clinics in 10 low-income countries. They then provide it at low or no cost to consumers.

“We’ve developed a product for people in the developing world that is also innovative and useful in developed countries,” Jan explains.

The all-terrain knee uses a proprietary locking mechanism that locks the knee when the user extends his leg, preventing falls that occur with traditional knees that require people to place weight on the foot before stabilizing. “Amputees are prone to falling,” says Jan. This is because traditional knee joints lock when the user puts weight on them. “But if they don’t place weight correctly, which happens, the joint may not lock, causing the user to stumble or fall.”

The all-terrain knee is a rugged, high-performance waterproof knee.

About three million people worldwide have above-knee amputations. Most live in the developing world, where less than 15 per cent have a prosthetic. “That means they can’t function,” Jan says. “Most jobs there require manual labour, so they’re unable to work and support themselves or their families.”

Jan published a study this summer of 10 young adults in Chile who wore the all-terrain knee for two years and compared it to their old prosthesis.

Based on walking tests, heart-rate monitoring and questionnaires, Jan’s knee showed a number of advantages. Study participants found the knee improved their stability while standing and walking and made it easier to get around: when wearing the new knee, they expended 40 per cent less energy than they did with the traditional prosthesis. The new knee also supported natural movement in the pelvis, whereas the weight-activated knee caused a pelvic tilt that could create long-term musculoskeletal problems, Jan says.

Nine out of 10 study participants chose to continue using the all-terrain knee following the study.

“In places such as Cambodia, we aim to provide the knee at, or near, cost to non-government organizations who will provide it to low-income individuals,” Jan says. “In developed countries, we provide the knee at prices that coincide with local reimbursement systems.”

The all-terrain knee is sold in Zambia, Colombia, Haiti, Guatemala, Turkey, India and Cambodia. It’s also available in North America, Australia, Europe and Russia. Almost 500 knees have been sold.

Jan notes that while bionic devices based on microprocessors cost over $150,000 in the Western world, most amputees in poor regions can’t afford “the most basic device that doesn’t work well. There is such an inequality.”

Jan says NGOs love the knee because “the technology works well and patients want to keep using it.” One of the challenges in getting the knee to people in the developing world is a lack of prosthetists who are trained to fit them.

Three years ago LegWorks “lucked out with seed funding of $100,000 from Grand Challenges Canada,” Jan says. “To get the funding we had to present how we would translate the technology. Grand Challenges put me in contact with the social entrepreneur David Green.”

Jan learned about David’s model of compassionate capitalism. David helped create a company in India that manufactures artificial lenses used in cataract surgery at a selling price of $4 a pair as opposed to $150 in the U.S. This enables a local hospital to perform over 300,000 free or low-cost cataract surgeries each year.

Jan says he’s excited about advancing science to meet the needs of amputees. “In developing countries people with disabilities are looked down on and excluded,” Jan says. “This leads to even greater poverty. Providing them with a well-working leg gives them the opportunity to regain their lives.”

Photo above by Patrick Brown © 2014 Panos

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'Without disability I don't know if I'd have discovered my sport'

By Louise Kinross

Erica Scarff, 20, is on her way to Rio next month to race a kayak in the paracanoe event as it makes its debut at the Paralympics. BLOOM talked with Erica about how she found her passion on the water after she had an amputation at age 12 to treat cancer.

BLOOM: What led up to your amputation?

Erica Scarff: I was running at gymnastics and my leg broke. I found out I had cancer and the only way to get rid of the tumour was to remove it. My whole thigh on my right leg was removed. Then my calf was attached backwards, so I had to train my brain to make my ankle function as a knee. At the time I was very involved in gymnastics. I was about to move to competing at the provincial level.

BLOOM: What was the hardest part of adapting to your new body?

Erica Scarff: For me, I was still really sick when I lost my leg so I didn’t have the energy or feel motivated to learn how to walk. Being really sick was the hardest part for me. I had the amputation in September and nine months later I finished chemo and it wasn’t until then I started to feel better. It took a long time for my scar to heal, which meant I couldn’t be fitted for a leg until about April. Also, before I even started walking, I had to train my brain to know my ankle as my knee. At first I couldn’t even move my ankle. My ankle is now functioning where my knee did.

BLOOM: What helped you keep going during this process?

Erica Scarff: I was always looking forward and thinking about what was next for me. I never really thought about the possibility of things going wrong. What helped me was I’m really into science. I wanted to be involved in understanding not just what they were doing, but why they were doing it. So I asked the doctors lots of questions and understood everything and that helped. Of course having my family around was important and my mom was always with me in the hospital.

BLOOM: What was it like when you returned to school with your prosthesis?

Erica Scarff: When I got back to school I noticed a lot of the kids were standoffish and a bit apprehensive. Maybe they just didn’t know what to say to me, so they didn’t say anything. But I still had my good friends. I knew this was something I had to do to save my life, so it didn’t bother me too much.

BLOOM: Is there anything you do that helps people feel more comfortable with your prosthesis?

Erica Scarff: I’m very open with it. If someone asks me a question I can explain it to them. That’s not necessarily something I have to address right away, or that I have to explain, unless someone asks me. I’m pretty comfortable with myself. If I make a joke about it, it helps people see ‘Oh, it’s not that big of a deal.’ Because I can feel comfortable with it, others can feel comfortable with it.

BLOOM: How hard was it to learn how to walk with your prosthesis? I’ve spoken to other people who found it incredibly difficult.

Erica Scarff: It was pretty hard. When I first started walking I couldn’t imagine every being able to walk without holding on to something. It was quite painful and I was still quite swollen from the surgery. Because walking is something that comes so naturally to most people, not having it come easily was hard. Not only was I working with a prosthetic and trying to control it as if it’s my own, but I was dealing with the fact that I’m using my own body in a way that it’s not made to be used – I was using my ankle as my knee. In my brain I had to adapt. Now I don’t even remember what it’s like to walk with two legs. For me, it’s normal.

BLOOM: How did you learn about kayaking?

Erica Scarff: I was at the prosthetics clinic at Bloorview and there was a coach there helping another patient design a leg for paddling. The other patient was a friend I knew from Bloorview. The coach asked me if I wanted to come out and try the sport. I’ve always been an athlete and I wanted to go back into sports after my leg amputation.

BLOOM: What do you love about kayaking?

Erica Scarff: I love the outdoors, so it’s nice to enjoy the summer on the water. I really like training and the feeling of pushing your body and seeing your improvement. With paddling, it’s a very technical sport. You’re not only pushing yourself physically but it’s a mental thing too, to improve your technique. That technical side of it was really cool, because it was like gymnastics: it was about body awareness and knowing where your body is in space. So even though paddling is quite different for me, in some ways it was similar to gymnastics.

BLOOM: What was it like to become part of the Paralympian community?

Erica Scarff: At my club there were other para athletes, but it was so cool in 2015 to go to the world championships and see these world-class para athletes and how hard they train. Some people don’t realize that we’re real athletes and really competitive. It’s real sport and a real competition. To see how seriously the other athletes took it – yet we’re still really friendly to each other – was really great.

BLOOM: Have your thoughts about disability changed as a result of having your amputation?

Erica Scarff: Having a disability, I can understand and relate to other people with disabilities more and, even though I would say my disability is considered less severe, I understand what it’s like to struggle with differences within your body.

BLOOM: What are your hopes for the future?

Erica Scarff: I’m in school studying kinesiology and I’d like to be a physiotherapist. Being in sports I have a good understanding of the body and how it moves. But also, being in the hospital and going through a lot of physio myself, it was something I watched. I thought their job looked fun, to be able to help people in that way, and something that I could be good at.

BLOOM: What advice would you give other kids with disabilities?

Erica Scarff: Sometimes I visit kids in the hospital who are going through the same thing I did. I tell them it’s going to be okay, even though when you’re going through it, in the moment, it feels really tough. 

I tell them it’s okay to have a hard time with it and struggle with it and to go through all of your emotions. In the end it’s something new: you’ll be living with your disability and it’s not the end of the world and you’ll adapt. There will be a lot of the same things in your life and then maybe you’ll find some new things. Maybe your disability could even bring you opportunities you wouldn’t have had otherwise. Without disability I don’t know if I'd have discovered my sport. So you don’t always have to look at it as a disadvantage.

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BLOOM story sparks CTV piece on prosthetic designs

We shared this story in our last BLOOM e-letter about an innovative company in Victoria, B.C. that's blurring the line between prosthetics and design with these stylish covers.

Avis Favaro, medical correspondent at CTV National News, says she saw our story and followed up with this broadcast piece. Click above and check out these funky limb covers live.

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A prosthesis, and a work of art

By Megan Jones

In 2013, McCauley Wanner and Ryan Palibroda did what stereotypically passionate artists are wont to do: they quit their jobs, sold their cars, and moved across the country to pursue a dream. But their story wasn’t a cliché. McCauley and Ryan were working on an unconventional art project—a series of bright, fashionable covers for prosthetic legs.

The undertaking had begun in 2010 as a university project. At the time, McCauley was completing her masters in industrial design at the University of Calgary. While she’d decided to turn her attention to medical design, she was determined to incorporate her long-held interest in fashion into her work.

A friend introduced her to John-Paul Austring, a fellow U of C student who had lost his leg to cancer at the age of 16. The two began talking about prosthetics, and the aesthetic options available to those who wore them. During her conversations with John-Paul and other amputees, McCauley quickly realized there weren’t many choices. “The more people I talked to the more I realized there was nothing,” she says. “It was shocking.”

She decided to take matters into her own hands, and dedicated her thesis to imagining what fashionable prosthetic covers might look like. After she finished school she joined with Ryan, who’d recently completed his masters of architecture. He worked on the practical, physical designs. Combining their skills, the pair soon began developing their own real-life models.

Today, the project has grown into Alleles, a Victoria, B.C.-based company that produces the bold prosthetic covers long envisioned by McCauley, now 30, and Ryan, 35. “An Allele is a biology term meaning a mutation of a gene responsible for causing variation like hair colour, eye colour, or smooth as opposed to wrinkly,” McCauley says. “Our company is all about providing variety to showcase variety.”

Their devices, which are made from plastic, attach to prostheses using a strapping mechanism. Since launching in October 2013, Alleles has produced around 1,000 of them.

Ready-to-wear covers are generally priced between $325 and $500 (custom models cost more—for example, some buyers have requested designs that feature tattoos they’ve lost along with their limbs). From the beginning, affordability was a key concern for McCauley and Ryan. They’d seen very few fashionable prosthetics online, and those that existed were typically elaborate art projects that cost thousands of dollars.

“We designed it be a retail product,” Ryan says. “We wanted people to actually be able to buy them.”

While the pair currently dedicates nearly 12 hours a day to working with and for amputees, prior to starting the project, McCauley and Ryan had very little experience with disability. In a way, this was an asset, they say. Being outside the industry meant they didn’t have preconceived notions about how prosthetics should be made, which allowed them to take more risks.

“It often seems like in medical design, people are concerned with getting their clients to function again in the setting of a hospital or clinic,” McCauley says. “But they don’t really think about that person living their life in the real world on a daily basis.”

“As outsiders we got to ask ourselves, ‘Why doesn’t this have any soul in it, why doesn’t this have any heart?’”

In order to make up for their lack of prior knowledge, the Alleles team made sure to consult closely with amputees, who talked about what they wanted and needed from their prosthetics.

One of those people was John-Paul. Since meeting McCauley during their university days, the now-29-year-old has stayed connected to the project and regularly gives feedback on their products. He has five covers of his own, and wears his current favourite 24/7, only removing it when it needs to be washed.

When he first lost his leg, John-Paul was given a bulky plastic cover, which created strange, unnatural-looking contours under long pants. He was embarrassed about how he looked, but felt hesitant to speak with his prosthetist, fearing he’d be seen as frivolous.

By contrast, he says, the Alleles covers feel like an empowering form of personal expression. “A prosthetic is a medical, utilitarian device,” he says. “It’s something that’s done to you. With these covers though, you’re turning the tables.”

John-Paul feels a sense of pride when he wears his covers, and a willingness to embrace his disability. “People don’t choose to lose limbs or get prosthetics,” he says. “But now you can choose to put something artful and beautiful on it. That becomes part of the healing process.”

Best of all, he says, the intricate designs have changed the way strangers interact with him. In the past, he says, people would stare at his missing limb, or ask him prying, personal questions about what happened to his leg. He felt singled out, objectified. And most days, he had no desire to rehash the painful experience of having cancer with people he barely knew.

With the covers though, the conversation shifted. Suddenly, people were complimenting him on the exciting designs. He could talk about his style, rather than his prosthetic. It was a much better icebreaker.

“Some days, I still struggle with the idea that my disability is a sign of weakness to others,” he explains. “This cover helps me get away from that. It shows I’m owning my disability.”

***

There’s a reciprocity between the Alleles designers and their customers. Just as people like John-Paul are influenced by the covers, individuals who wear Alleles products inspire McCauley and Ryan, who often name their designs after significant people or events. John-Paul has inspired two titles, with one cover bearing his first name, and another, his middle name, Steen.

In the future, McCauley and Ryan hope to expand their collaboration beyond individual customers. They’re hoping to partner with larger companies to become more visible in the mainstream fashion world. A brick and mortar store is also in the works. The couple plans to open up a boutique where customers can come to browse and get fitted. Ultimately, they’d like to include a line of clothing that would complement their covers as well. To them, this blending of fashion and disability is crucial.

“What people don’t understand sometimes is that everyone—regardless of ability—cares about how they look,” Ryan says. “Everyone has a way they want the world to see them.”

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First armless pilot: 'My feet were more efficient and faster'

BBC World Service has this fabulous interview with Jessica Cox, a 33-year-old Arizona woman who is the world's first licensed pilot with no arms. 

She talks about "feeling lighter, freer and more empowered than I'd ever felt in my whole life" the first day of Grade 8, when she left the prosthetic arms she'd worn for 11 years at home. "It was my statement of independence and my statement of authenticity. My feet were more efficient and faster."

Jessica said her prosthetics were "hot, heavy and cumbersome, and weighed close to 10 lbs." In addition to flying, Jessica also drives, plays the piano and has her black belt in Tae Kwon Do. "I use my feet the way other people use their hands."

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A helping hand? It depends on your kid's perspective

A recent piece in Business Insider features this photo of a girl born without a hand who gets a new pink bionic one thanks to 3D printing. The hand was made through e-NABLE, a Google-funded nonprofit group of volunteers all over the world, including school children. In the Business Insider piece, e-NABLE's founder Jon Schull says: "The hands can have a magical ability to make a kid feel good about his or her special hand or arm, and give them some confidence. The other kids at school think they're really lucky. It turns out to be as important psychosocially as mechanically."

A mother writing in The New York Times' Motherlode column assumed her son, who was also born without a hand, would be just as excited about getting one that would make him look like a superhero. So were her friends, who flooded her e-mail box with a related video. But the boy had a different take on things.

"We were sitting on the couch, and he turned toward me. "I've been thinking about it," he said. "And I don't want a new hand."

"But why?" I was devastated. All that time, research and enthusiasm. He was throwing away a chance to have a five-fingered hand? He was quiet for a moment, then started to explain his three reasons.

First of all, he said, he didn't want to lose his sense of touch. "I don't want to lose the way things feel." This caught me off guard. I hadn't thought of how much he could physically feel at the tip of his wrist, how stifled it was under something else plastic.

"I can figure out how to do stuff my own way." It was true. Thaddeus had figured out how to leverage his arms, feet and neck to open jars, marker and pen caps, and even play baseball. "My brain just works different because of my hand, and I think that's a good thing."

I nodded in agreement.

"And my friends like me just the way I am," he said. If he started wearing a new hand, he explained, it would draw more attention to him—the kind he didn’t want. “I don’t think kids would be my friend because of me. They would just want to play with my robot hand.”

 

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BLOOM media roundup

If you haven't seen the first video in our A Family Like Mine series, covering diverse families raising kids with disabilities, check it out. Rob and Dave, above, are a married couple who adopted Owen, who has autism. They talk about their adoption journey and how Owen has settled into their family and thrived.

And in other news:

'I didn't feel strong enough' The Telegraph
Brilliant animated account of a dad whose daughter is born with medical problems and diagnosed with cerebral palsy.

When it comes to disability, is it better to look 'different' or 'normal?'
BBC Ouch podcast
Adults with disabilities talk about pressure to improve their appearance. Should a woman with a prosthetic eye wear dark glasses? Should a woman who is a double amputee wear skirts? "It's the people staring that really gets on my nerves," one says.

Guinea pigs are autistic child's best friend The New York Times
When playing with guinea pigs at school, children with autism spectrum disorders are more eager to attend, display more interactive social behavior and become less anxious, according to a series of studies.

Anesthesiologist trashes sedated patient—and it ends up costing her
Washington Post Listen to the degrading comments two doctors and a medical assistant make about a patient who's receiving a colonoscopy. The conversation was recorded on the patient's phone. Shocking and makes you wonder.

For disabled people like me, cuts spell the end of independent living The Guardian
Penny Popper, a British writer and performer, writes about the end of England's Independent Living Fund, which covers the cost of attendants.

Comedian with a stutter gets the golden buzzer from Howie Daily Best Like
A baseball injury damages a young man's vocal chords, causing him to stutter. He performs as a comedian on America's Got Talent.

Esme can read The New York Times
The mother of a child who can't speak, point or sign writes about realizing her daughter can read.

Texas to require cameras in special-ed classrooms Disability Scoop
"We heard testimony from students with special needs and parents whose lives have been forever changed by mistreatment in the classroom," state Sen. Eddie Lucio, Jr., who authored the legislation, said.

Is special education racist? The New York Times
"Black children face double jeopardy when it comes to succeeding in school," write two researchers. "They are far more likely to be exposed to the gestational, environmental and economic risk facts that often result in disabilities. Yet black children are less likely to be told they have disabilities, and to be treated for them, than otherwise similar white children," according to a new study.

When doctors become patients A Better NHS blog
Amazing accounts of doctors who become patients and how it transforms their practice.

New theory suggests disability played critical role in our evolution Daily Mail
British anthropologists argue that disability is what made us human, promoting our social, empathetic and flexible natures.

TDSB school asked my autistic student not to attend graduation Heart Learning Centre blog An after-school program writes about a kindergarten child with autism being asked to come in later one morning so that she misses graduation ceremonies.

Holly, Alex and Jaxson 1,000 Families Project
A gay couple begin the adoption process with one request: They want a child with Down syndrome.

Doctors go online for medical information, too Wall Street Journal
When a child has a rare condition, doctors look to online groups for families who can shed light on their experience. Our BLOOM contributor Barb Farlow is referenced in this article, as is a paper she and two doctors published in Pediatrics on the experience of parents of 272 children with Trisomy 13 and 18.

Horrified family finds daughter's photo on prenatal screening ad CTV
Without the Canadian family's consent, a photo of a girl with Down syndrome that had been posted on her mother's blog was used in a building-size banner advertising a Swiss prenatal test to detect Down syndrome.

Why isn't it the right time for NEO Kids? Northern Life
An eye-opening editorial about the obstacles a proposal for a pediatric hospital in Greater Sudbury is facing, despite widespread parent and medical support. Includes disturbing statistics about the health of children in Northern Ontario vs the Ontario average.




 
 

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