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.

A lesson in humility

I’m not usually big on humility.  I figure life gives us plenty of opportunities to feel humble without actually cultivating that quality of mind.  I’ve often been humbled in the past when confronted by situations out of my control, when all I could do was stand by helplessly and observe the unfolding of sometimes very unpleasant events.  For me, feelings of humility are more often than not brought on by situations where I am helpless, prevented from acting in one way or another or immobilized by a physical condition.  One great example in my past of being immobilized, and humbled by it, was when I had a disk removed in my lumbar region many years ago.  I had had an ‘accident’ in a lumber mill and was left close to immobilized with a severe injury to my back.  I was off work for a year because of it.  As an active, eager young man, being subjected to the immobility brought on by my back surgery and lots of time in bed was humbling to say the least.  My vulnerability as a person and as a man was plain to see.  I was definitely humbled by it.  Lying in my bed for days on end, I was in no position to exercise hubris of any kind.  It was hard not to feel diminished by the situation.  Over the years I’ve had other similar experiences.  

In 2002 I was diagnosed with kidney cell cancer and had my left kidney removed in a complex, delicate surgical procedure that left me with a 36 centimetre scar running around my left ribcage, front to back and chronic pain ever since.  We had just bought an acre of property which needed a great deal of work and here I was unable to do anything physical.  Carolyn was left to do all the work that needed to be done around the place and look after me too.  That was humbling and sometimes humiliating.  Of course I had no intention of getting cancer.  I have no idea how I got cancer.  It could have come from poor personal dietary decisions or who knows what.  So, I couldn’t be blamed for my immobility.  Still, being a conscious, sentient male of the species unable to move a great deal was humbling anyways.  Getting cancer and being immobilized by it highlighted in no uncertain terms my animal vulnerability.  

A few days ago, while working on a building project at home I had occasion again to feel my animal vulnerability, this time more acutely than in the past.  I’m 67 years old but in quite good physical condition.  Carolyn and I walk the dog on average 45 kilometres a week.  We average around 10 minutes per kilometre.  That’s a pretty good pace.  Along with that we regularly exercise in our little gym at home and with a trainer.  I’m pretty fit.  I’m able to do things.  I can lift heavy rocks for landscaping projects and work long hours in the shop or on various construction jobs.  That all came to an end last Thursday evening when I slipped on a loose board and crashed to the ground landing on another board in the process right on the exact location of my 2002 cancer surgery and the chronic pain its given me ever since.  Off to the emergency ward we went.  After a couple of hours of investigation, the hospital staff determined that I had not broken any ribs and that I should just go home and let it heal.  Well, that’s easier said than done.  I don’t have a lot of pain until I move, then the pain level shoots up to a 10 or higher.  I really can’t do much.  I can sit and type this as long as I keep my arms as still as possible but every once in a while without warning I get overwhelmed with a paroxysm of pain that threatens to leave me groaning and writhing uncontrollably on the floor.  Carolyn is required to do most of what I used to do for myself.  Thankfully, my family is here to help too.  My daughters and granddaughters have been great and my son-in-law is pitching in to move our deck building project along.  Still, I feel helpless and stupid for my carelessness.  It’s humbling to say the least to be immobilized and incapable of looking after myself and contributing to the many projects we have going to keep our home running smoothly.  I’ve always been careful around my shop tools and on the various construction projects we’ve undertaken around here…and, although I’ve injured myself now and again because of lack of care and attention, this last little bit of carelessness is costing me dearly.  It’s taken away my mobility, the very condition that we define as life.  I hope it doesn’t last too long.  Even though I’m of an ‘advanced’ age, I heal quite quickly so I have my fingers crossed that I’ll regain most of my mobility in the next few days.  Right now, I don’t particularly feel that way, but I must remain optimistic and maybe I’ll be able to get some decent painkillers when I see my family doctor next week.  I hate being humbled.  

 

Thinking about Quality of Life some more…

So, I’ve been thinking a lot about quality of life since I’ve been working on the Comox Valley Social Planning Society’s 2013 Quality of Life Report.  I’m trying to whittle down the idea of quality of life to a few key concepts and I’m trying to think about the issue of quality in general.  It informs how I approach my current research and writing. 

I’ve come to the conclusion over the past while that quality of life can be summarized along two major continua, mobility and sociality.  Mobility encompasses many forms including physical mobility or the ability to move around, from place to place.  Mobility can be hampered by illness, injury or the lack of monetary means.  No money, no go.  Sociality is a term that refers to our need to be around other people, to be social.  That need has a biological basis but is reflected in most of what we do and are in life.  There are many aspects to sociality.  I’ve written before about what happens when children are left alone without contact.  They die at a rate 4 times what we might consider normal.  The harshest punishment in Canadian prisons is solitary confinement.  Solitary means no sociality and no mobility either which means in my analysis here, just about the worst condition a human can suffer.  Of course there are always exceptions to every rule.  There are people who shun the company of others and some who are content to sit still for days on end.  And, of course there are subjective and objective dimensions to mobility and sociality.  Whatever we ‘feel’ about mobility and sociality, there are social values and norms, moral codes, that determine how we should think about these things.  We know that ‘idle hands do the work of the devil,’ and that warm feelings can be had with the company of family and friends.  We have all kinds of ‘sayings’ that glorify mobility and sociality.  Just listen for them.  They’re everywhere.  Even when we glorify individualism or expressions of individuality, we do it only when it conforms to social moral standards.  

In fact, our whole morality is built on the glorification of mobility and sociality and the deprecation of immobility (idleness, laziness, indolence, etc.) and standing alone and away from the group (snobbishness, lone wolf, unfriendly, self-centered).  Movies are based on these themes, so is music.  We go to a party and are asked what we do for a living.  Well, what you do for a living tells a lot about how mobile you can be.  The more mobile we are, the more social prestige we are afforded.  ‘Planning any trips?’  That’s another one of those questions that is aimed at getting at how mobile you might be.  To put it bluntly, we afford people highest prestige points for being wealthy and healthy.  There are some very primal themes at work here if you think about it. 

Mobility equals life, immobility equals death.  Living things move, generally and dead things don’t, at least on the face of it.  In reality the situation is much more complex than that, but for now, let’s stick with the appearances of things.  It’s not surprising then that we value life over death, even though one cannot exist without the other.  Well, at least we often say that we value life, but that’s often conditional; there are strings attached.  For instance we generally don’t eat live things so we obviously value death and dead things…we just don’t like to think of it that way.  It’s not surprising, then, that we would value highly things that move…the faster the better.  I could write a book about this, but for now, just a few hints at what is to come.

In terms of sociality, well, it’s pretty clear that we value collective effort, unless it’s in a union of if there’s any hint of ‘communism’ attached to it…  Teams that win do so because of the collective effort, the dampening of individualism.  After winning the big game, you’ll never hear the top player look into the camera and say: “Yeah, I carried this team.  If it wasn’t for me we’d have lost this game!”  No, no.  It’s always, “Well, the team came together on this one.  We’re all in this together.”  We don’t like loners and we’re not too sure about hermits, either.  Lots more to be said…maybe I’ll visit here a little more often.  I am busy though, so don’t expect too much from me just yet.  

 By the way, rummaging through my papers a couple of days ago I ran across a plan I had put together for a book I intended to write some day.  Still looks interesting.  I’ll have to share that with you here sometime.  

What the hell is ‘quality of life?’ Part 3

So, I’m back at it.  Lately I’ve been reading a book called The Truth About Art: Reclaiming Quality by Patrick Doorly.  Doorly refers to Zen and the Art of Motorcycle Maintenance by Robert Persig in very flattering ways.  Persig’s book is all about quality and what it means.  For Persig, quality is in the interface between things.  It’s not a thing itself.  As an aside, nowadays we’ve perverted the concept of quality to the point where quality only means ‘good’ or ‘high’ quality.  Apparently poor quality doesn’t exist anymore.  Now, when we speak of quality goods we always mean good quality goods.  That’s pretty stupid, in my mind, but that’s the way language seems to evolve.  Returning to my point, there is no question in my mind that quality exists in the interface between things.  I, being a thing, can find another person, also a thing, either good or bad, of high quality, or of questionable character and quality.  Quality is in the judgment I make about something even if that judgment is largely socially constructed.  I may find a Mercedes of higher quality than a Toyota Tercel but ‘society’ has already made that judgment for me by reference to the price of the vehicles in question.  The value of the vehicles, strangely enough, may have little to do with price.  But I’ll leave that seeming contradiction for a discussion at another time, after I’ve finished reading Doorly and re-read Persig.  Again, back to my story.

So, quality of life is partly an individual thing, a judgment about how a life is lived, but it’s also about the ‘price’ and ‘value’ of that life itself and how it can be lived.  Life implies mobility. Dead things don’t move. The more we have ‘life’ in us, the more we move.  In our world, personal, individual mobility is gotten by having money and good health, of course.  No money, no mobility, no life. Poor health equals poor mobility.  So, having money means to be alive and to be poor means to be immobilized and socially dead in the eyes of the majority of people in our world, including poor people themselves when they (generally) buy into the moral assumptions about quality and value that drive us in our daily lives.  So, what is a high quality of life in our (moral) world?  Well, it’s having some mobility and the ability to make choices the immobilized cannot make.  The poor and unhealthy are essentially stuck, blocked and unable to move in the marketplace or in just plain physical terms.  Being stuck/blocked is essentially the definition of guilt.  Guilt here is a social concept, addressing just how well one ‘fits’ within the moral wall of the ‘community,’  large or small.  In our world, being guilty is not being mobile, without wealth or health.  We [as a pronoun here used in the broadest and most inclusive of terms] generally have no great sympathy for the poor or the ill.  We speak sympathetically of the poor and the ill but culturally we have institutionalized suspicions that the poor are that way because they are morally weak and people who are ill have only themselves to blame or their families, who should look after ‘their’ ill because they are often responsible for whatever family illnesses there are.  Never mind that most ‘poor’ people are that way not out of any moral weakness but because of circumstance, family history, and the fact that there are rich people in the world.  ‘Poor’ people are as necessary to a ‘properly’ functioning society as wealthy people but we can’t let them think they are important or necessary.  We need to make them feel guilty for not being wealthy.  After all they are poor because they are morally weak.  Let’s be clear about what it means to be morally upstanding in our world.

To be morally upstanding in our world is to be wealthy, healthy and male above everything else.  If you aren’t those things, it’s your duty to give the best impression that you actually are those things.  Drive a car you can’t afford, live in a house you can’t afford because you need to give others the impression that you are a morally upstanding member of society.  It’s no surprise that most of our laws centre around private property. It lives at the core of our morality.  But so does business entreprise, the factory-system, individualism, hard work and maleness to name a few.  To test this view, just think of the things ‘we’ hold dear and the things ‘we’ loathe, fear, detest or for which we have little regard or esteem.  Need I make a list?  How about a couple of examples.  In our world, individualism is a ruling moral force to such an extent that labour unions are scorned by many people even those who would benefit from their existence because they are collective organizations.  We hold individualism to be of such importance these days that business corporations are now considered legal individuals.  Even though corporations are made up of groups of people aligned together to produce a result, that is to make money, they are considered legal individuals.  Unions are not considered legal individuals, rather they are thought to be evil because they contradict

the global love we have for individuality and it’s ideology, individualism.  So, we live in a world circumscribed by a more or less well defined moral wall.  Imagine a place, say an old English castle, surrounded by a high wall with the king’s residence in the middle and the rest of the people living in concentric circles around the middle depending on how close they are to the king in moral terms.  You have to know where the poor live.  Yes, right up against the wall and maybe even outside the wall.  It’s no wonder we struggle so much trying to look wealthier or healthier than we are.  We are constantly testing each other, trying to determine where we reside in our moral world.  Go to a party where you don’t know a lot of people and the first question you will be asked is “So, what do you do (for a living)?  If you say you’re retired then be expected to be asked “Planning any trips abroad?  Our daily conversations are laced with attempts to determine where we stand in relation to others around us on the moral spectrum.  How close to the king do you live?

So, to get back to my original concern here with quality of life, I have to say that quality of life is judged finally on where we ‘reside’ in our moral world.  The closer we are to the king’s domain in our world, the better we think of our quality of life.  But that’s not the end of the story.  There is a social dimension to the quality of life and a responsibility we have as a community to respect all people who reside within our moral walls.  The king could never keep his castle without the help of ‘his’ people.  The wealthy in our world are the same.  No poverty, no wealth.  The wealthy need the poor, not only to make their lattés but to collect their garbage, repair their roads and cars and to buy the products they sell.  The wealthy 1 percenters in our world would be lost without the buying power of the rest of us.  Yet they have little or no respect for us.  Well, why should they?  The poor have no moral standing in our world.  They deserve their lot in life, don’t they?