It’s Time To Stop Treating Limb Loss

by | Aug 14, 2020 | Lower Limbs, Upper Limbs

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.

 

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.

 

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.

 

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.

 

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.