Like most people I spent the first eighteen years of my life upright. I took walking for granted and thought nothing about what life must be like for people who use a wheelchair. Fast forward thirty years and my thinking process has changed. I do not think about what life is like for people who can walk. Instead, I wonder why people who walk think this form of locomotion is so great. Sure walking is efficient and humans are designed to be bipedal. But for people with a physical deficit such as paralysis is it worth devoting all one's time, energy, and money in an effort to walk? I for one think not. The overwhelming importance society places on walking is never far from my mind because it helps form the basis for oppressing those that use a wheelchair. It is a given that walking is superior to using a wheelchair. Those that walk often think and tell me life "in chair" must be very hard. This assessment is correct, life is hard for paralyzed people. However, what people do not realize is that the problems I encounter have little to do with my paralysis and inability to walk. What makes life hard for those that use a wheelchair is the moral superiority of those that can walk. This came to the forefront of my mind last night as I read Harriet McBryde Johnson's wonderful book, Accidents of Nature. Let me share a quote:
It is funny. Therapists, teachers, relatives--everyone--they all think walking is such a wonderful thing. And we don't question that. We believe it must be worthwhile, or they wouldn't torture us for it. And then, finally, you get up on your two feet, take a few halting steps--pardon me, I mean courageous and determined steps--and the cameras flash, and everyone's inspired. But then you find out walking is a lousy way to move from place to place... When you start to think for yourself, you realize a wheelchair is a better way to get where you're going.
For those unfortunate souls that do not use a wheelchair let me clue you in--using a wheelchair is often a far better and more efficient way to get around. For instance, I can cruise around a museum for hours on end and never tire. I can propel my wheelchair much faster than those that walk. In fact, I often need to slow down if I am accompanied by a person that can walk. To me a wheelchair is not only an efficient means of locomotion but much more. When I am zoned in I have a deep connection between myself and the wheelchair I use. On a daily basis I feel a great sense of freedom and independence as I move around. In sharp contrast, many who can walk think life "in a chair must suck". What is not verbalized is that they believe a wheelchair represents a symbolic failure physically and morally. In essence walking is good wheelchair use is bad.
The ability to walk in our society is a pre-requisite for equality. Those that cannot walk are expected to devote all their time in an all out effort to walk again. These people, think Christopher Reeve, are respected, lauded, fawned over and invited to speak at the Democratic National Convention. Huge sums of money are spent and bizarre devices such as Robo-Skeletons are invented to get people upright. All such efforts conveniently ignored the social consequences of disability and cast a negative light on people such myself and millions of others that express no interest in walking. Worse yet, I am disabled and proud. This sense of pride in my body and wheelchair subvert an unquestioned cultural norm. For violating this norm I am perceived to be difficult. I am the bad guy that does not know how to accept what society is willing to hand out. Well, I for one willingly piss on such pity. I expect and demand much more out of life: to be treated with the same respect and dignity of those that walk. I think this is a modest expectation, one I hope to experience some day.
6 comments:
Hi, William,
My experience has been that we therapists had to give walking a trial for every person with SCI - not because of our own inordinant value of walking but because it was part of the patient's path to acceptance. That is, they had to realize the cost/benefit ratio was high.
I have long thought - agreeing with you that walking is not all it's cracked-up-to-be - for those whose bodies have been cracked-up.
My years working with children outnumber my years in rehab settings, but believe me, parents really want their children to walk, and there's significant work on the part of anyone involved to help parents who resist a wheelchair for their child.
I abhore pity of pwd. Media representations of pwd and np orgs are frequent offenders for striking at people's heartstrings with tones of pity.
I'm big on patients making their own decisions with information from someone who does not profit from the decision - like a DME dealer. For a paraplegic who adamantly wants a Robo-skeleton - I'd just be real clear about what I think will be the likely results - it will be in the closet soon. This is the life of most reciprocal gait orthoses - still marketed by orthotists I like and respect for their technical skill.
Thanks for making two points really well.
Walking is overrated, and wheelchairs are underrated.
therextras, thanks for your thoughtful comments. You came at the same issue from a different angle that was very interesting. The transition from walking to wheelchair use is not easy. I hope wheelchair use will simply be seen as an alternate form of locomotion at some point. If this takes place life for paralyzed people will improve drastically. Sadly, I do not think this will occur in my life time. I don't know how you deal with DME dealers. These people make used car salesman look great. I long ago gave up on them as a group because they are incompetent and lacking basic social skills. In contrast my experience with therapists was positive--I still stay in touch with those I met in rehab many moons ago. Again, thanks for your thoughtful words.
I also really enjoyed this post and shared it with others. I am also surprised and interested in what therextras said about it. The cost of walking is also very high for me, agonizing pain if I do it for any distance. One of my spine doctors is judgmental but was telling me I just needed to limit how much I do; why, when I can use wheels when I need to?
I have to say my DME dealer bent over backwards to help me out--I'd have lost patience if I were them! But I understand this is the exception and it's why I refused to work with other dealers--after seeing that incompetence firsthand, not even knowing their own product!
Frida, I readily acknowledge the human body was designed to be bipedal. If walking is practical physically great. But if walking is not possible because of paralysis or not efficient due to a physical deficit I question why so much time, energy, money, and social value is placed on this means of locomotion. Walking is simply perceived to be superior to wheelchair use. The result is that too many bipedal people consider themselves physically and morally superior to those that use a wheelchair. Your MD was one of these people, a sad commentary on an individual who is supposed to be highly educated.
Here's an analogy that I find helpful: walking vs driving.
Next time a medical type waxes lyrical about the dignity of walking, ask them if they walked to work that day. Ninety-five percent of the time, the answer is "No, I drove." (Or took a train or bus or bicycle.)
Why didn't they walk? Because moving on wheels is a lot more efficient, and they don't have time in their day to devote to walking.
Case closed.
Jesse, I love your reply. The logic and catching people unaware in their bias is perfect. Bravo!
Post a Comment