There is a heartbreaking story behind this young guy who is walking happily with his first prosthesis. He never expected to ever lose his leg. Before he had his leg amputated, he was an electrician and worked around rural areas. He used to travel with a motorbike to check the lines in the area.
One day, he got a small wound on his shin bone because of the motorcycle gear bar and he thought it would heal by itself within a few days. Unfortunately, two weeks after he got injured, his wound showed discoloration and swelling. He started to worry, went to see a doctor for the first time and got medication. However, the wound got worse and worse, so he went to the hospital to investigate the cause. After a few tests, they discovered that he had a bone marrow problem which resulted in a bone tumor. He was shocked and depressed about it, this is when he started chemotherapy.
After a couple of months at the hospital, his pain was not gone and even worse. One evening, he fell and broke his leg. They tried to fix it with a steel bar and skin grafting but the bone didn’t set right and he had to undergo below-knee amputation. In the end they had to operate 4 times to get all the tumor and that is why he is now amputated above the knee.
He contacted us before he did the above-knee amputation and asked how he could take care of his stump before he wore the prosthesis. We contacted the physiotherapist who lives in the same city so that she could teach him pre-fitting exercises. When his stump was ready, we made a prosthesis for him. He used to be the one bringing income to his family but it stopped when he got injured and on top of that he had to spend a lot of money for his medical bills. Therefore, we decided to give him a significant discount. We are happy to help people with low means and who need something to fulfill their life.
Let me present this little kid who was abandoned by his parents, has no one to care for him and was involved in a severe railway road accident when he was three years old.
He was playing around the railway road one evening when he fell asleep using the railway as a pillow and lost both his left leg and right forearm. This accident was a nightmare for him.
When a monk near his town noticed how much he was suffering, he adopted him and let him stay at his monastery, giving him food and clothes and allowing him to study there.
After three years, a man noticed him when he visited the monastery. He felt sorry for him and decided to donate a new leg to this tiny boy.
He spent a few weeks looking for a place that might be able to provide for his prosthetic leg before meeting with our MMOS staff. It is our pleasure to make it for him.
At first, the little kid felt strange when trying on the prosthesis limb, but after receiving adequate instruction on how to walk with a prosthesis leg from our MMOS team, he was able to walk quite well and play with the other kids.
We are grateful to the monk and donor who assisted him and gave him a second chance at life.
I looked up from the computer on my lap to the middle-aged man sitting across from me, who was staring thoughtfully at the anatomy poster on the wall, massaging the scar line on his newly amputated leg,
“Why do you want a prosthesis?” I asked, prompted by the niche software helping me to collect the data we would need to justify his new device.
“Are you f***ing kidding me? Look at me!” he snapped back, lifting his residual limb in the air to make sure I hadn’t forgotten.
Why Prosthetics?
It was an all too familiar exchange, as I sought to cross t’s and dot i’s, lest the ever-antagonistic insurance companies should find any minute reason to deny coverage. Yet day after day, asking clients why they wanted a prosthesis, I never thought much about why I was providing one. But it turns out, it’s a really important question we should be answering. Because how we think and talk about prosthetics can have a lasting effect on prosthetic users and the larger limb-loss community — for better or for worse.
Let me explain using two common (which I believe to be) negative ways we often answer the “Why Prosthetics?” question, and end with what I think is a more appropriate way to frame the discussion.
Prosthetic Devices As Costumes
I recently came across an article from a project focused on providing low-cost prosthetic devices in underserved and low-income parts of the world. In the report, it stated one of the functions of the device was to help clients “disguise the fact that they’re an amputee” because of social stigma. This is not an uncommon approach — another program I saw noted the widespread “social stigma and exclusion” many amputees in Africa face because of “their predicament.”
This leads us to an important question:
Do prosthetic devices serve an important role in avoiding the social stigmas associated with disability and amputation?
It is my belief that prosthetic devices should never be thought of as costumes. Imagine, for instance, a project that provides free cosmetic surgeries to help women “disguise the fact that they’re female,” in order to improve their chances in the corporate world. The problem to address here is not their gender, of course, but sexism. In the same way, to treat the limb absence and not the social stigma serves only to further validate and accommodate the underlying discrimination. Again, we must remember which of the two is actually the problem (HINT: It’s not the missing limb).
I cringe every time I see an article about someone excelling with their device, with a caption to the effect of, “X is redefining the cultural perception of disability,” No, the goal is not to make a disabled person look abled, the goal is getting a society to a point where we can accept and value our differences.
Prosthetic Devices As Treatment
A second, and perhaps more popular rationale for providing prosthetic care is through the framework of a treatment. Hardly a day goes by within the prosthetics social media sphere without an inspirational story of someone who “didn’t let limb loss get in their way.” Whether it’s “refusing to be held back” or “finding your impossible” the message is that prosthetic devices are an effective cure for limb loss/limb difference — that those who do end up with altered lifestyles, do so by choice.
Setting aside the fact that the people in these inspirational articles often have their care-that-would-normally-cost-more-than-your-house subsidised for marketing purposes, the idea that a prosthesis can make someone a “new person” or “give them their life back” can be problematic. As Judy Berna, an amputee and blogger writes, “This leads the general public to think these options are suddenly out there, available to every amputee, and desired by every amputee. That’s not necessarily the case.”
I see this quite frequently amongst programs in low-income and underserved region, where the general vision casting is that the only thing standing between a person with limb-loss and their dreams is access to a quality, affordable prosthesis. The result is a lot of emotion and hype surrounding device deliveries. But these snapshots are just part of the story. To quote Jen Reeves, author of Born Just Right (and whose daughter lives with limb difference), the fitting of a new device is “an amazing sight to see. But it’s [only] a great moment. It’s not a moment that changes everything.”
Prosthetic wearers have good days and bad days. Devices wear out. Employers don’t accommodate for clinic visits. Donations dry up. And sometimes, users decide they simply do better without.
When our framework short-sightedly revolves only around “curing” limb-absence via a prosthetic device, there is no room for these complex parts of the story, and can set users up for failure and disappointment over the long-term.
Prosthetic Devices As Tools
But we need not throw the baby out with the bath water. Just because the goal isn’t to make someone look abled for stigma’s sake doesn’t mean we shouldn’t provide a device that helps a client be seamless in their ADLs. And just because the limb-loss communities experience is much too complex and diverse for a prosthesis to be a “silver bullet,” doesn’t mean prosthetic devices can’t or shouldn’t play an integral part.
The goal is to have a more balanced, realistic view of what is being provided. To quote Jen Lee again,
“Prosthetics aren’t a solution. Prosthetics aren’t a “fix.” Prosthetics are a tool that can be helpful at times.”
I love this idea of a prosthetic device being a “tool.” It still inspires us to create the best tool we can so the user can excel in the activities s/he chooses to use it for. But it doesn’t overvalue the devices themselves, which compels and frees us to also consider holistic issues such as stigma, ableism, and other parts of prosthetic users’ complex social experiences that have as much a hand in our clients’ success as does their device.
We have a tendency to make so much of how a prosthetic device “changes” a person: their “look,” their “hope,” their “dignity,” but we must also consider what then becomes of them when the device comes off. That’s why I think the “tool” perspective is so important. You cover ugliness, and treat sickness. But people with limb difference are neither ugly, nor sick.
Sometimes, like everyone else, they just need the right tool.
Time is flying; it’s already been one month since our adventure in the jungle.
We went there for about ten days to a village with an orthopedic workshop that was created in order to help people who lost their limbs because of the civil war and landmines. Our goal was to encourage them in their work and give them tools to deepen their professional knowledge by presenting testing various techniques.
Most of the technicians who work there have lost a limb themselves. They make the prosthesis with the resources at hand, which means with minimum equipment.
What is most impressive is that they can make a prosthesis without electricity, which is no simple task. Observing them at first, I asked myself what I could bring to them in their specific context, since they have such an incredible freedom of movement…
Indeed, I saw them climb over walls or carry a person on their back with their artificial limb despite their amputation. I also asked them if they had any pain with their prosthesis and they tended to answer that everything was fine and that patients usually get used to their artificial limbs. We are far from the concept of having a prosthesis that has to fit the patient.
However, as things progressed, we clearly saw what elements we could bring, and we were able to start the training.
During that time, I have been challenged in the way I say things, especially as I saw them work. Culturally it is rude to point to out a mistake; it’s as if you were saying that the person had no skills. This reminded me of some advice I got from a Swiss friend who has been working in Myanmar for more than ten years. He told me that he managed his team by asking questions so that in the end, the people had to think about what they were doing and find the solution themselves. It’s really a great concept, however difficult for me to put into practice, as I like to say things as they are! But by being sensitive to this and trying it, I could see their trust and respect growing daily and in the end, I had more freedom to give them advice.
One of the technicians asked me if I could make him a new prosthesis and beyond the joy of being able to work again, I was grateful to have the opportunity to show them new techniques in a very practical way in order for them to improve their skills and knowledge. When the time came to try it out, I was relieved and thankful because he adopted the new prosthesis straight away. If not, the new techniques would have lost their credibility.
