Touch: Pt. 1/3 – 11/12/2019

Humans are innately social creatures. A strong part of each person’s identity stems from how we were nurtured by our parents and how successfully we assimilate into our assigned peer groups. For most people, this is a natural process; however, many disabled people fight a life-long uphill battle towards acceptance let alone full inclusion. But, let me emphasize that this dilemma isn’t simply an issue of discrimination! While a factor, discrimination is but one aspect of a very complicated problem. We won’t address this issue now. What we will address however, is one by-product of social disenfranchisement, human touch.

Yes, I said human touch. Like breathing in and out, most of us take human touch for granted. Most of us, myself included, were lucky enough to have at least one loving, nurturing parent. From our earliest bonding experiences with mom as an infant suckling her for nourishment; to, having her fix our boo-boo’s while consoling us; to, sitting on daddy’s lap, for better or worse our initial sense of worth is in large part defined by the quality of those experiences.

The other component is how we interacted with our siblings and friends. As anyone who has brothers and or sisters can attest, roughhousing is a part of life among siblings. Although roughhousing is borne from sibling rivalry which may initially stem from competition for mom’s attention and affection, nevertheless, we learn lessons from it. What feels good and what hurts. If roughhousing goes too far, we learn boundaries between fun and pain. We also begin to learn compassion. A child can’t be expected to sympathize with his brother writhing in pain until it’s his turn. That may not be the politically correct thing to say but from my experience I believe it to be true.

Heading into our teens, friends and peers greatly influence one’s sense of worth. Puberty is a bumpy, hazardous, transitional bridge from childhood to adulthood. Acne, body hair, body odor, first crush and subsequent first heartbreak, and more provide a veritable minefield for a developing adolescent. Whether in the form of a playful punch in the arm or pat on the back, teenage boys console each other through these masked acts of kindness. On the other hand, as far as expressing physical affection is concerned, teenage girls are culturally allowed to be more affectionate with each other through: hugs, kisses, and pajama party pillow fights. By engaging in these forms of welcome physical contact, one can feel connected to their peers at a time when others, who don’t forge bonds easily, are overwhelmed by this transitional phase.

Now, imagine being an adolescent, having a severe disability, and finding a peer group at a regular school. That was my task. Moreover, having spent my grades K thru eight in primarily schools for the disabled, I was suddenly thrust into a high school where I was the lone wheelchair student. Not only did I have trouble dealing with “regular students” but they seemed likewise hesitant in their encounters with me.

While I was there, my main objective was competing academically. However, on some level, I hoped to find a subgroup or clique that would look beyond my wheelchair and accept me into their fold. Finally, in the late stages of my junior year, a group of guys called the “Cowboys” took a liking to me for some reason. While this was a step in the right direction, what I secretly ached for was female companionship and touch.

Yes, whenever rolling through the quad invariably I would witness a girlfriend and boyfriend engaged in some sort of subconscious bonding ritual. Whether it was holding hands, kissing, or playfully spanking each other’s bottoms I envied their closeness. At the time, I felt myself particularly intrigued by the spanking activity. However, lack of social maturity prevented me from understanding why I secretly yearned for a girl to spank me with a smile. I discovered much later in life, among certain people, spanking by members of the opposite sex, releases “good feel” endorphins which trigger a pleasant, sensual, calming sensation, which given my perpetually high stress level, I was in dire need of.

As it turns out, my biggest obstacle to happiness is my own mind.  In the eighth grade, I got up the nerve to tell a girl in my class that I liked her.  She not only laughed at me, she said that “boys like me should be castrated soon as they know we’re not normal.”   For a number of years after that humiliating episode, I was mired in a logic trap of letting my C.P. and speech disability double team my desire to take a chance whenever a female seemed interested in me.

The two little devils on my left shoulder always muffled the little angel on the right. The guys on my left always told me that girls and women would both laugh at and mock me if I dared to venture outside my crip social stereotype. You know, equal but separate. With each passing year, my little angel increasingly influenced me ever so slightly. However, knowing what to do and having courage to follow through are two different issues.  In the next post my first tentative steps towards finally incorporating sensuality into my life at age 36.

PC Labels — 10/29/2019

There used to be a time when I could simply wheel down a sidewalk or be in a public area and not be harassed. Sure, my wheelchair and I always garnered predictable stares from children and stealthy glances from adults. However, by the time I’d reached my 18th birthday, I treated such rudeness as par for the gimp course. Then, beginning in the 1990’s, an insidious plague spread across America.

Political Correctness, or PC, disguised itself as a way for people from different ethnicities, sexual orientations, or “differing abilities” to comfortably interact.  By and large, PC labels were created for groups of people who have been persecuted or marginalized by society.  We know all the substitutions by now: “African American,” “LGBTQ+,” “Differently Abled,” etc… Unfortunately, PC turned out to be the quintessential example of a cultural Trojan horse. 

Whenever we run across someone who falls outside of what’s considered “normal” we quickly attach a corresponding PC label.  But, even with new-fangled branding, we still subconsciously package the old stereotypes with them. Moreover, until we begin treating each person as a unique entity–and not an embodiment of their subculture–nice sounding labels will never change anything. So, PC can be thought of as a cheap mascara applied to society’s blemishes for purposes of mass delusion.

During my 55 years on this planet, there have been many iterations of socially acceptable terms for a person with my condition.  I believe the sequence is as follows: gimp, crippled, handicapped, disabled, physically challenged, differently abled.  As an aside, “differently abled” is a very weak term because it describes practically everybody.

Do you know how exhausting it is for me to keep up with my latest label?  A few years ago, I was having a conversation with a stranger and I referred to myself as handicapped.  He quickly cut me off, with a petrified look on his face, and said that the word “handicapped” is offensive.  He said to use “physically challenged” instead.  Now, “physically challenged” has fallen out of favor for the latest label, “differently abled.” 

Personally, I use the word “handicapped” because—given my speech disability—it’s easier for me to pronounce.   PC has become an acceptable conduit for labeling. People who don’t fit a “norm” are labeled by people who do. Remember the saying, “Good intentions pave the road to hell.”? Well, here’s my real-life example.

My usual routine is to go to the gym in the morning, have a 90-minute workout, eat lunch out, and come home to write. I’ve been going to a local gym for three decades. Before the days of PC, I could exercise in peace and everything was great. But, these days, people in the gym feel empowered to walk up and label me as an “inspiration” or “courageous.”

At first, the conversations were based upon my, “physical challenge” or, my “racer” wheelchair or, comparably acceptable euphemistic prattling. As people became more emboldened, they’d walk over to my stationary bike, and pat me on the back, while admiring my “determination”, and telling me that they’d rather die than be “confined” to a wheelchair.

How the hell is that supposed to make me feel? Are they really complimenting me or, are they wondering why I don’t put my wheelchair on our nearby train tracks and wait for the next high-speed train to end my suffering?

To a degree, I suppose, how a person acts or responds in a given situation depends mainly upon two factors. First, if they lack essential knowledge surrounding a situation, their decision to avoid or engage rests primarily on each individual’s ability to interact with others.  Secondly, within a specific situational construct, previous experience, or lack thereof, determines whether they display aptitude or ignorance.

For example, from an ambulatory person’s perspective, encounters with people in wheelchairs are rare. To them, a “funny” off the cuff remark is useful in lightening a “downtrodden” disabled person’s perceived burden. An ambulatory person thinks he’s said something clever, witty, or uplifting. Unfortunately, to a disabled person’s ears, such remarks are akin to Chinese water torture because they’ve been heard countless times from other ambulatory do-gooders.

Now, I’m not trying to discourage ambulatory people from interacting with me. To the contrary, most of my friends aren’t wheelchair users. Additionally, I have had quite a few productive encounters and discussions with people of the walking ilk. All I’m saying is that when someone comes across a person who uses a wheelchair, they should interact with the human being behind the eyes, not their means of personal transportation.

In an odd way, attractive women suffer from a similar social typecasting. A woman can have degrees and professional certifications yet, if she’s wearing a tight fitting business suit the first thing that her male colleagues notice and, unfortunately, judge her by, are either her breasts or her bottom.

To a lay person, it may seem that I’m making much ado about nothing. So what if some people say stupid things to me? Why can’t I simply slough off these ignorant and insensitive comments and just move on with my life? After all, you may argue, each individual is responsible for their own self-esteem and identity. Shouldn’t I be grateful that people are finally trying to reach out to me?

While you might think these are valid points, I would like to present some current societal examples of how dangerous it is to allow ignorant statements to pervade a culture. We all have a father, uncle, or acquaintance—who grew up in an era before PC was in vogue—that delights the crowd with jokes based on racial or sexual stereotypes. All of these jokes are essentially passing down stereotypes from generation to generation.  Unfortunately, people laugh at these jokes not because they want to but because certain stereotypes are so ingrained in our cultural brain that even when we hear offensive humor our impulse is to laugh.

On the surface, these types of jokes seem innocent enough. However, at the root of every joke is a perceived truth. By and large, people aren’t innately cruel and vicious. Children are born innocent and accepting of everyone and everything. We learn to be: ableist, racist, and sexist.  Moreover, as long as conversations transfix upon a person’s: wheelchair, cane, guide-dog, attitudes towards disabled people will be slow to evolve.

Fortunately, over time, social constructs are dynamic not static.  The first step is to interact with the person, not their external packaging such as a wheelchair or other adaptive device.  Once this is accomplished, we can successfully build a bridge in order to organically transform society’s perception towards disabled people. Finally, if you meet a person in a wheelchair, and you want to know more about them, just strike up a conversation–about anything.     

Disabled Parking Blues – 10/15/2019

                                               

My friend and I went to the supermarket last Saturday. While attempting to maneuver our van through the crowded lot, we noticed that all nine disabled spots were taken. Since we live in a relatively small town, I know there’s a very sparse wheelchair population. During my 40 years of living here, I wheel past one of my comrades maybe thrice per annum. So, either a great influx of wheelchair users decided to make the trek just to buy produce from our supermarket, or there was a revolutionary new brand of wheelchair that was camouflaged so well that the user looked ambulatory.

Imagine for a moment if such a chair really did exist! No more putting up with awkward stares. No more having to explain how you “landed” in a wheelchair to every compassionate soul you met. Last, but not least, no more having to be called “courageous” or “brave” twice a day. Logically, however, I knew why the spaces were full.  Human nature was at fault.

Unfortunately, left to their own devices, most people will take advantage of a situation without regard for anyone else’s well-being.

Yes, I’m afraid that most ambulatory people don’t think twice about parking in a disabled spot. They don’t see the harm in parking there, just for a minute, to grab a quart of milk. Some go a step further.  They hang an illegally obtained or out of date disabled parking placard from their rear view mirror. They don’t understand what all the fuss is about.

Compounding this sentiment is law enforcement’s seemingly lax attitude toward writing tickets for these violations. Tens of thousands of dollars in city revenue are lost per annum because of this oversight. Some people even have the audacity to argue that scooting in a wheelchair is easier than walking.

Our next best option was to find two empty parking spaces and use their combined width so my ramp could fully extend and provide enough room for the wheelchair to exit the van. Unfortunately, there were only a handful of single spaces available. Given no other options, my friend and I were forced to employ a risky alternative.

We parked halfway into a space so we could let the ramp extend and clear the back of the next car. A very risky proposition to say the least!  With half of our van sticking out in traffic, I went down the ramp as quickly as possible. Most of the other drivers understood our predicament and carefully drove around. Suddenly, a car sped into our aisle and instead of slowing down, the driver dangerously maneuvered around us.  As he hurried by, he honked his horn.

After I caught my breath, his utter stupidity made me chuckle. For some reason this moron thought that we were at fault because his speeding almost caused him to kill me. However, we were not out of the woods yet. We still had to walk behind a line of parked cars to reach the store.

There’s a trick that you learn when you’re in a wheelchair and you’re forced to wheel behind parked cars. You might think that I just can wheel behind them without a care in world. This, however, would be a tragic assumption. You see, when a driver looks in his rear view mirror, while backing up, typically he’s looking for an upright pedestrian. The problem is that I’m significantly lower than your average adult pedestrian.

A lot of drivers can’t see me either because I’m too low or they only do a cursory glance behind them. So, the onus falls to me to make sure that a car isn’t about to back out. The first trick that I learned was to listen for engine noise at each car I was about to pass. This worked for awhile but, then I found that some newer cars were very quiet.        Next, I began studying taillights to determine if a car was on the move. It seemed foolproof! Before a car backs out, its taillights light up. Again, this strategy worked until my wheelchair was tapped by a fender.

While wheeling in another lot one day, I carefully examined each car. As I was passing the back fender of an old VW bug, it backed into me! Fortunately, my chair took the brunt of the impact and still sports a scratch from the encounter. The young man driving the bug, to his credit, sprinted from his vehicle to see if I was okay. He had an absolutely horrified look on his face. After assuring him that I was fine, he apologized profusely until I told him that his family wouldn’t lose their home.

These days I employ my third, and hopefully last, strategy. I look to see if there’s anyone sitting in the driver’s seat.

Like everyone else, sometimes the minutia of my own life obscures the bigger picture. When we fall into the pattern of disregarding the needs of other people, we’re inviting them to reciprocate in kind. Disabled parking spaces exist so that people with physical challenges can safely transfer from their vehicle to a place of business. Society works best when people try to be compassionate and mindful of one another.

Lost Identity 10/1/2019

             From the outset of my consciousness as a human being, I’ve spent a good part of my time explaining myself to others. From inquisitive youngsters to curious retired doctors, it seems like I’ve performed my now perfected monologue thousands of times. The same questions always arise. What disease do you have? Can I catch it? Why can’t you walk? You talk funny, are you retarded? Are you going to die soon? Can they “fix” you?            

Just recently, I discovered a hidden impact that these questions had on how I viewed myself. By constantly explaining and justifying my right to exist to others, I denied myself the opportunity to examine who I was from the inside out. Whenever I told someone that: I had academic achievement awards or that my brain injury only affected my fine motor skills and so on, I was explaining who I wasn’t instead of truly engaging them with honest conversation which would reveal my true self.

Because I was in perpetual defense mode I never participated in what’s referred to as “small talk.” While strangers who meet in the street typically discuss superficial topics like the weather or sports, I never mastered that skill. Like a Pavlovian archetype I always felt compelled to recite my monologue even when I’m not asked about my disability.           

  I used to waste so much time and energy just defending my value to a society whose value system is myopically focused upon a person’s physical appearance. If we assume that this cultural construct as a given, people like me stand no chance of making a positive first impression. So, one might wonder, if I already knew that I couldn’t change anything; why did I attempt to sway opinions of ordinary people who would probably forget who I was ten seconds later? Wouldn’t I be better off just dismissing such ignorance and putting all of my energies towards accomplishing goals which I’ve set for myself? In theory, this seems like a simple thing to do. Doesn’t it?      

       Unfortunately, the nature of my particular disability doesn’t afford me the option to become a hermit or shrug off other’s opinions. I depend upon a host of people from my caregiver to social workers and doctors. Moreover, having to rely on so many people for my very existence doesn’t afford me the luxury of adopting a private person’s mindset. I can’t be open-minded to one group and flip an “off” switch to the public at large. No one has that kind of mental discipline. You’re either open-minded or close-minded, optimistic or pessimistic, extroverted or introverted, liberal or conservative; personality traits are an all or nothing proposition. Whether I like it or not, I’ll always stand out in a crowd and be objectified. While I can’t control how others see me however, I can control how I see myself.    

         Lately, mostly due to my discovery of Buddhism and its teachings, I’m starting to find my inner self, my true being. Among other things, Buddhism teaches one how to clear away all of the “mind clutter” by focusing on the simple act of breathing during meditation and nothing else. Through practice, I’m developing an ability to see things as they are, taking both extremes hope and fear out of the equation. On the surface this philosophy may not appear to provide much spiritual comfort. However, viewing events stripped bare of their emotional packaging doesn’t allow me to recede into a victim’s comfort zone.

Instead of cursing the fates when adversity comes along, now I either take action to deal with it or decide to let it run its course with as little emotional investment possible. I’m finding a new calmness, as well as compassion for others, through looking at life from the inside out. So, who am I? Well, I no longer define my being by defending who I’m not. I have stopped acting like a PR representative for a corporate polluter.

I’m beginning to engage people in real conversations about mundane day-to-day stuff like weather and sports. However, every once in a while I catch myself starting to break into my monologue–bad habits are hard to break. Now, when a youngster asks me a question that I’ve heard 10,000 times I try to have compassion. While, I may have indeed answered that question 10,000 times, from his perspective he’s only asked it once. If part of my path is to be a conduit for knowledge and enlightenment, who am I to joust at windmills?