Spend a Day in a Wheelchair – Jeffrey Preston

Spend a Day in a Wheelchair – Jeffrey Preston.

Interesting take on the issue of widespread disrespect for people who we consider dis-abled. The author rejects the pity response to disability he says is encouraged by ‘spend a day in a wheelchair’ initiatives. He advocated for guided tours that point out structural blocks to accessibility in architecture and public works.

Sometimes I get very frustrated writing about this issue. It’s difficult to find adequate and respectful descriptors for the ‘disabled.’  I balk at using this word ‘disabled’ or words like it. Virtually every word that we’ve ever used to describe disabled people focus on their limited mobility, including the word ‘disability.’  I’m not too crazy about the term ‘differently-able’ either.  I understand the intent behind it, but I find it too much of a reaction to the word ‘disabled.’  We need descriptive terms to communicate and we generally focus on the normative (cow, for example) in creating descriptive terms that are not specific to place or location as in Wolf Beach. When it comes to people who have lost mobility in whichever way, I feel we haven’t gotten very far in coming up with adequate descriptive, non-judgmental terms.

Of course, we tend to judge people generally by their level of mobility.  If we are immobilized by poverty we do everything we can to hide that fact from others, to ‘fit in’ by whatever means we can.  Someone with a physical mobility issue cannot hide the fact so judgment by others is much more transparent.  Some people in wheelchairs, etc., have very ‘mobile’ minds but that’s not a visible part of what they are.  Our judgments tend to focus in first on what we see.  These judgments can change and often do once we get to know someone as an individual.

I guess what I’m advocating here is that we reject first impressions and reserve judgment to a time when we have enough information about a person to make a reasonable judgment.  This isn’t always easy but we can strive to reserve judgment and keep our minds open to learn about a person before leaping to conclusions about that person based on first sight impressions.  Can we do that?  Yes, we can.


Why are we afraid of people in wheelchairs?

[This is a bit of an exploratory post.  I have ideas here that I want to develop further, but rather than trying to refine them now to a publishable state, I’m putting them out there in a somewhat disjointed and unrefined state so that I can think about them further and get your comments on them if you are so inclined].


A couple of days ago I posted a comment here about an injury I suffered last Thursday evening to my ribcage after a bad fall resulting in a hospital visit and a great deal of pain to an area of my body that had already been traumatized by cancer surgery.  Well, that personal story was just a way of leading into today’s post.  Of course, everything about the report I made a couple of days ago was true.  I’m still in a great deal of pain.  I haven’t driven our vehicle since my injury and I’m not sure when I will be able to again.  Maybe later this week sometime.  The good news is that I do feel some improvement in my pain levels already and some improved mobility.

That said, there are many people with immobility issues that cannot look forward to any improvement whatsoever in their conditions.  I feel temporarily humbled by my lack of mobility in a mobility driven world, but they must only feel permanently humbled and even humiliated.  Someone I am acquainted with has muscular dystrophy.  He’s my age, a little older actually.  He lived a ‘normal’ life for decades before being diagnosed with muscular dystrophy, but his mobility has continuously declined since his diagnosis.  He is now confined to an electric wheelchair and a scooter that allows him a certain degree of mobility.  He can even visit me in Cumberland from Courtenay (8K) although not in my home because it is not wheelchair accessible. There’s actually very few locations in the Comox Valley accessible to wheelchair bound people, homes or businesses.  As an educated guess I would say that about 1% of Valley homes are wheelchair accessible.  The big box stores are all accessible, but not many of the businesses along 5th Street or anywhere downtown are. I know other wheelchair bound people in the Comox Valley with varying degrees of immobility, but all have very mobile and agile minds.  Of course, like the rest of us, not all wheelchair bound people have agile brains and some have difficulty communicating with ‘normal’ folks.  I’ll get back to that in a bit.

My point is that we treat people immobilized by various kinds of physical ‘disabilities’, ‘abnormalities’, or whatever other qualification we might use in describing them, with a curious dismissiveness.  We don’t take them seriously and don’t expect anything intelligent to come out of their mouthes.  Mainly, we don’t address them at all and if we must, we’d rather do it through an intermediary, like a caregiver or companion. I use ‘we’ here because this is a generalized social reaction with few people being self-aware enough to realize what they are feeling and why they are feeling that way.

What I am arguing here is not that individuals in our society are insensitive or uncaring about people who are ‘differently-abled’ as they sometimes describe themselves, but that we have a very deep-seated fear of immobility because of its association with death and we are culturally programmed to shun it.  If you think about it for a moment you’ll soon realize that we unconsciously equate mobility with freedom and wealth, immobility with death and confinement, either, for example, in a wheelchair or in prison.  We punish people in our society by removing their mobility.  We laud people who are mobile.  I can’t tell you how often I’ve been asked since I retired from college teaching where I’ve travelled to (nowhere, actually) or what travel plans I have.  Our obsession with mobility is virtually universal, goes a long way back and is deeply embedded in our cultural fabric.

Colin Turnbull in his 1960s ethnography of the BaMbuti tribe of the Ituri Forest in Central Africa described how the BMbuti had developed a system of describing how dead a person was.  If a person was unable to speak because of a stroke or such ailment, that person would be described as partially dead.  The greater the inability to keep up with the group, communicate and contribute to tribal life, the more dead a person was considered to be.  There was always a danger that a person might be considered dead even though they still had a pulse.  I can’t remember which anthropologist it was, writing at about the same time as Turnbull, who described in his notebooks a tribe in the New Guinea highlands that buried people alive because they had lost the ability to speak. For this tribe, he wrote, an inability to communicate verbally was a sure and certain sign that the person was dead. Burial would follow no matter how much movement was evident in the rest of the affected person’s body.

So, part of our common human cultural heritage seems to associate immobility and its various manifestations in individual human beings with death, the ultimate evil (in Ernest Becker’s words).  It doesn’t seem to matter what part of the world we are from, what language we speak or what tribe we belong to.  If we cannot speak, have various ailments that confine us to a wheelchair or we are somehow immobilized in body or mind, we are somehow lesser human beings no matter what other qualities we may have.  If we are on crutches because of an injury caused during a hockey game we will face a wait-and-see attitude.  If we are playing hockey again in a reasonable period of time all is forgiven but if we fail to get back to the game in a timely manner or are prone to injury and hence immobilized too frequently we will be considered a slacker and not really a good team player. Hero status goes to the player who plays on despite being injured, flaunting pain and immobility.  If we are in a wheelchair with obvious mobility limitations there in no wait-and-see-attitude, there is just ostracism and sometimes revulsion.

This all takes me back to wheelchair bound people, ‘mobile’ and agile brains.  My friend with muscular dystrophy has a very active mind, is from a professional background, is community-minded and involved in various social groups and activities. He is articulate and fully capable of expressing himself. His scooter is quite impressive and commands respect, but even he has commented to me that on more than one occasion when he was in his wheelchair accompanied by one of his caregivers that a clerk or other frontline worker would address the caregiver rather than him even though it was his business that was being discussed.  They often behaved as if he weren’t even present and, without asking him directly, would address his caretaker with:”…and would he like a drink with that?”    He reported on these occasions of feeling somewhat humiliated and disrespected, even if it was just for a moment.

We seem unwilling to tolerate immobility in any of its manifestations.  As noted above, we find physical immobility disconcerting and we feel uncomfortable around people in wheelchairs.  People who are ‘mentally’ immobile are particularly scary for us because they cannot move a conversation forward in a predictable manner.  We feel afraid or disdainful of people ‘talking to themselves’ while walking down the street. And while we are fine with immobility on vacations, lying around beaches reading novels, it must only be as a temporary interlude in a busy work schedule.  We heap scorn on ‘lazy’ people.  We find the immobility brought on by poverty particularly vexing and distasteful.   We describe children and retired people as ‘unproductive’ because they fail to contribute to the forward mobility (growth) of the entire community.  Combine any number of physical and mental immobilities and the disdain and fear we experience are compounded.

One mental struggle I’ve had for decades now is determining just how much of our fear of immobility is driven by our biological built in urge to avoid death like every other animal species and how much by culturally specific imperatives, including learning and education.  It’s hard to dispute the idea that over our history on this planet (and even now) individuals might at any moment have had to flee a predator or fight for survival.  The ‘fight or flight’ reaction would have been severely impaired by individual immobility.  Obviously, anyone who was immobile for whatever reason might put a whole family or tribe in danger.  The consequence of being immobilized by injury, hunger or any number of other conditions could be catastrophic.  How many times in the movies have you seen a war scenario where there was great gnashing of teeth over whether to flee and leave behind a wounded colleague or endanger the whole group by dragging him along and slowing everybody down.  Of course, if the wounded colleague was a hero he might just commit suicide, thereby releasing the group of its obligation to him and ensure the safety of the whole group.

There’s no denying that we are animals and have animal preoccupations around sex and survival.  However, that doesn’t mean that our behaviours are forever destined to be driven by our animal natures.  Ernest Becker argued that it’s our ingenuity and not our animal nature that has pushed us into perpetrating more evil on this planet than ever before.  Is it our destiny to always fear immobility and death?  Is it possible for us to ever develop cultural and moral principles and imperatives that strive to accept immobility and death rather than to fight them at every turn?  Will we ever be at peace with the fact that we are a weak, vulnerable, finite animal that has limitations or are we driven inexorably to apotheosis and hubris?  Will we ever treat each other with respect no matter what our level of mobility?  I’m afraid I’m not very optimistic about our chances of answering any of these questions in the affirmative, at least not in the short term.