SOMETIMES I KISS MY FEET: Wheelchair Adventures in Pakistan and India (2019 Sky Road Publishing) by Judy Norbury

I seldom publish book reviews here, but I’m making an exception for this book by Judy Norbury about her adventures travelling in Pakistan and India in the Fall of 2007 and the Winter of 2008.

A Review

I’ve known Judy Norbury for decades. Our daughters are long-time friends, and in their youth were roommates in the Commercial Drive area of East Vancouver. Judy is a neighbour and has been since 2002 when we moved to Cumberland, BC on the eastern slopes of the Beaufort Range in the Comox Valley on Vancouver Island. I also know Judy as a performer. She has a wonderfully powerful voice, played guitar and sang for some time with Joanna Finch, another Cumberland resident and singer (they still perform together on occasion). I always knew Judy as a talented, warm, generous human being. However, before reading Sometimes I Kiss My Feet I had not known Judy as an author. I was surprised to learn that Judy had published two other works in 2008 or thereabouts, both available on Amazon. Reading Sometimes I Kiss My Feet confirmed for me, once again, Judy’s wonderful creative abilities. 

Norbury was born in the foothills of the Himalayas at a place called Mussoorie in Uttar Pradesh. At four years old she contracted a severe case of polio after which she was left unable to walk. Following her recovery, she and her family moved to Vancouver, British Columbia, travelling via Britain and France. There she went to school and grew up as any other kid would. Still, she had wanderlust and travelled often with her family and later with friends. She did not allow the fact that she was wheelchair bound to dampen her enthusiasm for travel, even for camping. In fact she writes: “…my disability has taken me to places I could never have gone were I able-bodied.” This can-do attitude is what allowed Norbury to plan travel in North America and eventually to Pakistan and India. 

In 1996 Norbury, accompanied by her partner, Ross, and her twelve-year-old daughter Belinda, returned to India for three months. That experience, after she got over memories of how difficult and distressing it can be to travel in India where life is so completely different from what it is in North America, where disabled people are considered the lowest of the low, and where sanitation and rodent control are not high on government priority lists, she recalled the joy and friendliness she also encountered in India even among the poorest and disadvantaged inhabitants. Travel can be crowded and unpredictable. Indians are not always the most law-abiding travellers. Still, she longed to return to the unpredictability and the adventure of travel in India. 

In 2004 Norbury and Finch were asked to perform at the Disabled Peoples’ International World Summit in Winnipeg. There she was with two thousand disabled delegate from all over the world. There she met Ghulam Nabi Nizamani who would figure prominently in her return to India, this time via Pakistan, Nizamani’s home, in the winter of 2007. Nizamani is the vice-chair of the Disabled Peoples’ International, Asia-Pacific Region and he had plans for Norbury when she arrived in Karachi, Pakistan at the mouth of the Indus River Valley, especially when, by chance, Norbury and her husband, Ross, would be in Pakistan on December 3rd, the UN-designated International Day of Persons with Disabilities. She (and Ross) would be expected to give speeches and attend functions as head table guests. Norbury is the consummate storyteller as she describes being driven to venue after venue, she and Ross making speeches, meeting dignitaries and disabled people in Karachi and in Nizamani’s hometown some rough kilometres away. After a month in Pakistan, Judy and Ross packed up and headed to India and Mirzapur, a city with which she and her family had close ties. 

I will not retrace Norbury’s adventures here one by one. Instead, I encourage you to buy Sometimes I Kiss My Feet and discover for yourself how Norbury masterfully weaves stories of filthy, often wheelchair inaccessible toilets, barriers to wheelchair access at every turn, rude, uncompromising able-bodied travellers and crowds everywhere. Mixed in with the nasty, frustrating aspects of touring northern India, Norbury never wants the reader to forget the generosity and kindness she and Ross experienced everywhere they went. She gets in the odd dig at the Indian government’s failure to accommodate the disabled. This book is more than a retelling of the frustrations of travel in a wheelchair unfriendly country. It’s also a love story and an understated political statement about social justice and the value of human life. Buy the book. I couldn’t put it down, I expect you won’t be able to either. 

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.