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.

9 thoughts on “Why are we afraid of people in wheelchairs?

  1. As I read this article, I kept thinking about my mother in her scooter. My mom has always put her daughters and grandchildren very high on her priority list and has always been there for me when I needed her assistance, despite the fact that I lived in Sointula and she had to fly up to visit our family. Mom is not thrilled by flying, but she can do it if she needs to get somewhere quickly. Mom loved my children and was generally very kind and generous with them beyond their depend years. On one occasion, she gave Geoff an extra $15 cash when he was leaving Courtenay on the bus to go back to Langley where he lived with his father after our divorce. As it happened, Geoff missed the station and ended up out in Chilliwack or somewhere far past Langley. Having the extra $15, he was able to call his dad and buy a ticket back to Langley and get off at the right stop, albeit several hours later. He will never forget what my mom did for him. I can tell other such stories about how mom helped our boys. So, when mom had her hip surgery, which became a terrible ordeal, as she got staph in her bone and was hospitalized in Comox for 3 full months on IV antibiotics. Then when she returned home, a nurse came to her home to give her injections of antibiotics for a period of time. Mom has not been able to really walk properly since that catastrophe. When mom got her scooter, our younger sons would get on hit and ride it like a bicycle. Mom didn’t really like this, but she had to laugh at their shenanigans. Mom has laughed her way through life and I think her sense of humour has been her strength. Sometimes, it has been denial and that has annoyed me and I have encouraged her to be honest and tell me what is bothering her, but at other times, such as these days, her humour has kept her going and has caused people to like her over at Eagle View.

    The point I want to make here is that if people have known people who become immobilized and have loved them prior to their immoblization, usually that love and respect continues after they become unable to “get around”. Every time my sons talk to me they say “I want to get over to visit gramma” or “Tell Gramma I love her and miss her, but I’m sorry, I just am too tired after a long day at the little league game for Ethan (my grandson) and I need to get home to Campbell River and get to bed at a decent hour.

    Personally, I met a young woman who had cerebral palsy in Sointula when I was 19 years old. Everyone there admired this young lady, because she overcame her disability and managed to walk and study and graduate. She even had two healthy babies. Her husband is very loving and because he loves her for the person she is, not for her sexy body, she is happier than some other women I know who were primarily wanted for their beauty and not their inner person.

    In summary, I think that in our culture, at least, we work to treat people with disabilities fairly and that, in part, the disabled person can draw others to themselves by not giving in to self-pity and reaching out and smiling. (I know some people are more shy than others). The experience your friend had of being treated as a nonperson does happen on occasion, and I think my mother would confront that person and says, “Excuse me, I am right here and you can speak directly to me” but I think she had to learn to do that over time. I encourage her not to take any “guff” from anyone in the residential care unit, as some carers are not fair or respectful to her.

    1. What I want to convey with this piece more than anything is that we have a culturally built in aversion to immobility. Of course that gets expressed by individuals in various ways. As a society we do provide people with disability pensions and other benefits and I agree with you that we, in general, are not overtly rude to people in wheelchairs, but there is a certain aversion that comes through, nonetheless, in a number of subtle ways, as well as people being treated as non-persons. There are always exceptions to the rule, too.

  2. Great article 🙂 As you know, my husband who sustained a mountain biking accident, is quadriplegic and in a chair. No use of his hands, paralyzed from his chest down. Sounds terrible right? Why did I fall in love then? Because, he is amazing.

    When you mentioned your friend, “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?” I see this all of the time as a wife and care giver. When these moments come up, I tend to look at my husband and let him take over the conversation that was meant to be his. I release the intense eye contact from the person asking the question and move it to him. From dentists, “does he floss?” to restaurants, “Would he like a side salad?” I say, “I don’t know, ask him!” With no, “!” but I really want to… I know sometimes, this shyness is more present in smaller towns, honestly, I think that is where some of the issues come from. (but not all, because we are just human after all.) When living in a large city like Vancouver, there is inclusion. So many people, so much diversity. Stores are easily accessed in most communities, transportation is relatively easy, hospitals and care facilities are mostly accessible. Small towns like where we live (and love) have a long way to go in the way of accessibility. “Accessible” doesn’t always mean livable. Sure, we can access it, but can we live in it?

    I’m sure the same attitude or fear is directed towards others in small towns that are not “white”, have other forms of disabilities or are not considered main stream. I believe its fear of not knowing how to talk to someone you have never spoken to before is what make people fear those that are different. (I’m guilty) I believe in the “city”, the culture is much more mixed and it’s ‘normal’ to see all types of people, not that this doesn’t create curiosity or anxiety in some.

    I know people who are not disabled. People who stay at home and basically are dying of an unsocial life. My husband, even though, “in a chair”, drives, lives life, loves and doesn’t just sit at home waiting to die. We could all do that. Mobile or not. We all need to say hello to everyone, smile, be open to new people, regardless of what we perceive. Who knows what they perceive of us. (long rant over :))

    1. Hi Tanya,
      Thanks for this very thoughtful comment. There are many types of immobility, physical, social, psychological. Anything that prevents us from moving, from being agents in our lives. Of course I’m interested in the sociological and anthropological aspects of that. That’s why I’m particularly interested in why anyone would perceive of your husband as a non-person. It’s not because they are a ‘bad’ person. It’s that they are highly conditioned by moral principles that transcend all psychology.

  3. There is also well-meaning attempts to be helpful, such as painting wheelchair parking spots, but in reality, they are often placed in areas that don’t work for people in scooters or wheelchairs. Often, they don’t leave enough space for the wheelchair. Another thing that happens is that there are some people who are perfectly able to walk and they park in the disabled parking spots. That is one way people disrespect the disabled. Courtenay does have a long way to go to make services accessible. There is one case I can think of of specialists whose offices are on the second or third floor of a building with no elevator.

  4. Another thing that, to me, seems “out of touch” with reality, is that there can also be overkill with wheelchair parking spaces. I was at my doctor’s office this afternoon and drover around and around the Shopper’s Drugmart Parking lot where Valleycare Medical is located looking for a parking spot. There were three large wheelchair parking spots in front of the doctor’s office and two or three in front of the drugstore. How often would there be three disabled people requiring parking spaces side by side all at once? Every time I have gone there, these parking spaces are empty, yet there is inadequate parking for people who do not require wheelchair-accessible parking. This type of situation can contribute to people feeling frustrated that there seem to be too many wheelchair parking spots. Balance would make more sense, I think.

    1. I’m not sure exactly how many people in the Valley have disability tags for their cars but it’s around 1000. I don’t know how they calculate how many spaces to allocate for disabled parkers, but there must be some kind of formula. It would be interesting to know what it is, but I don’t have the time to pursue it right now. Maybe on my days off!

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