|Throughout history, people with disabilities have faced unique challenges which often call for technological solutions. This is the start of a series of posts intended to explore those challenges as well as the past and present science and technology used to address them. To do my best at grokking these issues, I’ll be performing a few “empathy exercises” along the way. I’ve already begun by spending one day with an arm bound. This is meant to emulate some aspects of what everyday tasks might be like for an amputee.|
It is important, first, to recognize that these exercises are limited in their ability to simulate most aspects of a disability. Still, they can be an important source of insight for people who do not have the disability in question.
The video in this post makes fun of my difficulty with some common tasks the first time I tried them with only one arm, but it’s meant to highlight advantages of having two arms that most of us take for granted. Here are some of the things I had trouble with throughout the day:
- Manipulation tasks wherein one hand must work against an unstable object. Example: buttoning my pants. Without another hand to hold the fabric still, getting the button into the hole takes a lot more skill!
- Pushing objects together / pulling objects apart. Example: getting the cap on and off of my deodorant.
- Reorienting held objects. Example: holding a sheet of paper right-side-up.
- Donning & doffing clothes.
- Going through latching doors while carrying a bulky object. Example: getting back into the lab with my lunch! It almost ended up on the floor.
- Exercise. Example: most exercises for pectoral muscles (most rely on balanced, symmetrical movement).
- Hand washing. That’s one I hadn’t even thought about until the time came.
- Stabilization. It turns out I’m quite used to using one arm to stabilize myself while the other arm is performing a task.
- Various tasks like removing lids from jars and climbing furniture/counters to reach things (I’m not a tall person).
While these tasks were difficult at first, it didn’t take long to go from awkward to competent (insomuch as I am ever not the former). By the end of the day it had become clear to me that it wouldn’t take long for a person to adapt so that they could do a lot of things just as fast and reliably as with two hands. That’s an important fact for non-amputees to recognize. Framed another way: a person with one arm can be just as qualified for most jobs as a person with two.
Not that my adaptations didn’t look a little bit awkward. They often involved using my teeth, leaning against walls and doors, or holding an object between my knees. I can easily understand how an onlooker might assume I needed help.
Each time that happened, though, I declined for two reasons. Firstly, it would have defeated the purpose of the exercise for me – I wanted to see what it was like to try all of these things for myself. And that would not be unusual for an actual amputee. They need to live their lives even when well-meaning offerers of aid are not around, so with each new challenge they encounter it’s in their best interest to learn how to do it on their own. Secondly, I often knew what I was doing and simply didn’t need any help! And that’s also usually the case with an amputee. They’ve probably lived with this disability for long enough to know when they do or don’t need assistance.
I also noticed that I got a lot of stares and a lot of questions. The people around me saw that my arm was bound rather than missing, so they were asking questions for a slightly different reason than they frequently do with amputees, but the effect was the same. Annoyance. It can be a difficult balance to strike between disabled and non-disabled people (and even sometimes among people with different disabilities)… When is it appropriate to discuss a disability? It doesn’t seem to make sense to actively avoid it. It’s nothing that either party should be ashamed of, and behaviors like avoiding the topic or averting one’s eyes would seem to imply that it is. But at the same time, if a lot of people ask questions about the disability just as soon as curiosity strikes them (which many do), then it becomes disruptive to the life of the person with the disability. It may be the first time you’ve asked that question today, but it might be the tenth time they’ve been asked it!
There is plenty of disagreement about what the best policy is, but I’ll tell you what makes the most sense to me. In general, if you don’t have any other reason to talk to a person, then it is not appropriate to ask a question about their disability. If, unprompted, someone has begun discussing his or her disability with you then they are implicitly telling you that they want to discuss it. The gray areas are with people you already know. I’d say if you are close enough to freely discuss other personal details, then a disability should not be taboo. Just don’t obsess. And in all cases, I would direct you to the vast number of informational resources on the internet about every type of disability under the sun.
As for offering help, I think one generally should not. Just like everybody else, people with most types of disability can be expected to know their own capabilities and intentions. They’ll ask for help when they need it. But don’t become so self-concious about this that you confuse uninvited assistance with common courtesies such as holding doors for people.
Science & Technology
Accidental, malicious, and congenital amputations would have to be as old as humanity itself. Intentional amputations to remove necrotic (dead) tissue have been performed since the neolithic era. But it wasn’t until shortly before the start of the common era that surgical amputation of living tissue was performed. This was made survivable by the discovery of ways to stop the bleeding: by ligation (e.g. applying a tourniquet) or by cauterization (e.g. applying fire, hot iron, hot oil, etc…).
So that’s the “how”, what about the “why”? With severe limb traumas (and some other medical conditions), a substantial part of a limb may undergo necrosis (death of tissue). With no active immune system, the dead tissue becomes an ideal place for a bacterial infection to take hold. With that foothold, the infection can spread to the rest of the body and become fatal. This condition is a type of gangrene.
Early medical practitioners would have noticed that the gangrenous tissue spreads from its original cite toward the center of the body and that death almost always follows. One can easily see the motivation to try removing all of the gangrenous tissue by cutting through the proximal (closer to the center of the body) healthy tissue – to stop the gangrene from spreading any further. As straight forward as the hypothesis here is, this is an early example of science!
Alright, so part or all of a limb is missing, either because we were born without it or it has been removed (surgically or otherwise). Now what? As I discovered during my exercise, humans can adapt very impressively just by modifying their behavior. But what can technology do for us?
The earliest known record of prosthetic limbs, in any form, is dated between 3500 BCE and 1800 BCE. A limb prosthesis is simply an artificial device secured onto the body where a limb would normally be and providing some aspect of normal limb function. A low tech example would be a “peg leg”. Modern limb prostheses have advanced tremendously, incorporating new materials and cutting edge engineering. While these can be very helpful to amputees, many complain that the devices have become too complicated and that form is emphasized over function. In many cases, arm/hand amputees will stop wearing their prosthesis because it’s actually easier to work directly with their stump. Another common complaint is that the interface between the stump and the prosthesis becomes inflamed too easily.
But there are many simpler technologies that can make live easier for an amputee. For instance, velcro! Or using a hook as a hand prosthesis instead of something less useful made to look more like a natural hand.
There is a lot to be said about this topic, but I think this post is long enough as it is! Stay tuned for more posts in this series. If you have a disability and would be willing to let me interview you, please email me at firstname.lastname@example.org.
Thank you for reading!