There is nothing essentially out of place about seeing a stocky, broad-shouldered, vertically-challenged man sitting in what is clearly-identified as a subway-seat marked as one of those set aside for either those of senior years or with disabilities, especially if the fellow has walking stick in his tremoring right hand.
Such seats are in usual high demand, given their proximity to train doors and competition for a space is fierce in a curiously passive-aggressive kind of way. Seniors hurl themselves through the doors almost as soon as they open, their anxious eyes as big as saucers in the same way kids rush for the presents under Christmas trees on the Big Day. This tactic is necessitated by the prevalence of indifferent students with headsets or millennial office-workers who, almost invariably with consideration take their contemporary sense of entitlement to the extreme where they believe that they too can sit in these coveted positions with impunity.
Yet, on this day, a wizened lady with a vast broccoli-like bouffant of heavily-sprayed white hair, impeccable, floral blouse and neatly pressed pants burst through the doorway, her retinue of daughter, caregiver and similarly-aged friend acting like a protective Spartan phalanx around her. Noticing the ‘Reserved’ seat occupied and, with exaggerated sighs behooving third-grade theatrics, plopped down two seats away. Regally, she ignored all the other thronging commuters and bade her friend and caregiver to sit. There was, however, no space for her daughter.
“It’s ok, mother, I can stand,” the younger woman said, in a reassuring voice.
There was something in her tone that spoke of both caution and warning, as if she were well aware of what might come. But, it would be in vain.
The old woman slipped into colloquial Cantonese and began disparaging the man in the seat closest to the door. In fact, ‘disparaging’ is an entirely inadequate description, for if spoken words could take the shape of hissing bile, the entire subway car would be flooded with it.
“Look at that perfectly healthy-looking idiot sitting near the doorway. Sure, he has a walking stick, but he looks like a stupid worker. He reminds me of a mindless coolie <stevedore>. Those people are robust, I tell you! I’d ask him to get off his sorry ass and offer you the seat but in case that stick of his is real and he falls over then we’d lose face. Imagine losing face to a person like that! Just like those young people who sit and play their video games or watch dramas on their cell phones. No one cares anymore. No class. Hooligans!”
And so, she went on, in an unmodulated voice so loud and shrill she probably wouldn’t need a telephone to be heard long distance. As the diatribe reverberated around the subway car distress was plain to see on her daughter’s face, wearing the wearied expression of someone who knew better than to venture anything more than a soothing, cloying nod here and there as the diatribe went on. The Indian caregiver who sat next to the hissing lady wore a similarly pained expression, looking for all the world as if she were undergoing an enema, for though it was obvious that she was not versed in Cantonese, the wizened crone’s tirade was obvious in spirit if not in linguistic clarity.
Finally, after the entire subway car full of trapped commuters had be subjected to the bilious monologue for a good ten minutes, the subject of all this hatred, jabbed his cane onto the train floor, lurched to his feet and shuffled over to the lady’s daughter and caregiver.
“Excuse me. I really don’t know what your mum’s issue is. I can only assume she’s had a lot of bad things happen to her in life and can only express herself in such a vocal fashion. For that I’m sorry. Also, if I’ve caused her any stress by sitting in that seat then I apologize. I was originally offered the place by a polite guy probably around the same age as she – which embarrassed me, for I am always reluctant to take a seat from someone senior to me in age. Yet, he saw me hobble on in obvious pain, and acted like any other well-behaved adult would. I don’t know your mother, or what she suffers from, so I cannot judge her. That much being said, neither does she know me or my condition. Also, just look around this subway car, and study the faces of our fellow riders. I suspect she’s already been judged.”
They left the train at the very next stop. And, as I sat back down in the ‘Reserved’ seat, I could still hear the crone’s bullhorn voice droning on, this time indignantly inquiring of her caregiver as to why they were getting off early.
I don’t normally speak out when people either judge or insult me, and I sure as heck try to hold back from letting appearances dictate my impressions of them. But this time, given that the guy in the seat was me, I couldn’t keep quiet.
Over the years, and in many countries, others have shared with me tales of being abused by strangers when using an accessible (or “disabled”) parking space. Sometimes there is a note left under the windscreen wiper -- “you should be ashamed of yourself, I saw you and there’s nothing wrong with you. I’ve taken your license plate number and will report you”. Other times it’s a verbal aggression or disparaging gestures received upon getting in or out of their vehicle.
These are people who have a disability parking permit clearly displayed on the windscreen, but what they fail to display is a disability that is immediately apparent to others. Some tell me they respond angrily, others are fearful, many feel shaken. They share that they feel their privacy is being violated -- the accusation of wrongdoing has the disabled person often feeling pressured to explain their incapacity to justify their behaviour.
Up until the incident on the subway I’d never been personally approached or verbally abused, and even that was relatively mild, but on days when I feel I didn’t need my walking aid (fewer and far between as age and more pathologies surface), I did sometimes endure long judgment-sated stares. As much as I hate to admit this, but struck by an irrational, undeserved feeling of shame, and the desire not to be verbally challenged, I have occasionally “exaggerated” a limp and a slower-than-normal walk in an attempt to “justify” my parking. Then I feel not only silly and dishonest, but that I’ve “let the team down”, ashamed of perpetuating the myth that, in order to justifiably use an accessible facility, I must outwardly display my disability.
You know, that middle-aged guy going up just one floor in a packed lift, or ponderously ascending/descending a staircase inconveniencing everyone else in a rush hour crowd -- that’s me. I can’t climb or go down stairs with either grace or speed. That twenty-something fit-looking bloke slipping into the disabled toilets instead of waiting in the queue -- that look on his face isn’t guilt, it’s fear of being judged because he doesn’t look disabled. He has a full colostomy bag, or is having an anxiety attack, or needs a hand rail to rise from a seat.
People with disabilities are not always easy to spot. The Australian Network on Disability places the number of people who use a wheelchair at 4.4%, while the number of people with a disability is reported at around 18%. Between a quarter of men and a third of women who identified as disabled have avoided situations because of their disability. In Singapore, for individuals over 50, around 13.3% are considered disabled. About 56.7 million people in the United States -– 19% of the population -- had a disability in 2010, according to a broad definition of disability, with more than half of them reporting the disability was severe.
In any public place, it may surprise you to look around and consider that a number of people have a disability. Where are they? Some are physically unable to access the community because of their health problems, including advanced age. But there is a significant number of people who choose to engage far less with society than they would like.
In my last few years of active health before I began to more consistently manifest infirmities in my late thirties, cruel synchronicity saw me becoming more conscious of people who were slowly losing their physical abilities and needing to take up daily living aids like accessible parking stickers, walking aids etc, while my own condition was curbing me one by one of my ability to perform basic personal activities without equal measures of stress and distress.
I had already spent years doing some charity work, and admittedly I had at times been frustrated by those who declined the offer of aids because it made them feel embarrassed, ashamed, or it confronted them with their perceived loss of independence.
“A parking sticker and a walker don’t take away your independence”, I would piously opine in my best Bill Clinton I feel your pain voice, “they can help you maintain your independence and mean you can keep going out.”
Poetic justice was dished out in spades as my own infirmities progressed and I slowly found abilities first curtailed then lost. Time has passed, and I’ve adapted both physically and emotionally to a large extent but accepting the use of aids is a rough ride, even without the outward judgment of others. I held back volatile emotions when I thought about getting an accessible parking sticker, but I could not control my emotions when the day came for me to buy a walking stick. I had an unstoppable wall of emotion while trialing different canes in the shop.
Most difficult of all was acquiescing to the need to be offered a wheelchair at airports for longer trips or bad days. Because while I have never yet used a wheelchair, I have grown accustomed to “disabled” being part of my public identity though at times I still feel self-conscious, but I do it because I want to spend the morning or afternoon, for example, at library researching or the bookstore browsing.
Losing physical ability can mean having your identity, control of your destiny, your self-esteem, productivity, your ability to help others stripped away. It’s a difficult enough internal process adapting to living aids at home. Taking the trappings of disability out in public means advertising to the wider world you’re a person with certain challenges and nothing represents disability more literally either than the stylized wheelchair symbol on the accessible parking sticker or the segregated seats near the doorways of buses or subways.
Perhaps you are one of those, who, regardless of your age or the amount of difficulty you experience, have declined the offer of an accessible parking sticker because of the stigma that comes with lost abilities. Perhaps it is your rheumatoid arthritis getting worse by the month, or the side effects of chemotherapy making it a mission to get to the shops and back. Maybe you are fighting an internal battle to maintain your sense of identity, self-worth and value to society by declining the accessible parking sticker, the walking stick, the help with the housework.
How we see ourselves and how we are perceived by others is very closely linked. Awareness of the impacts of invisible illness is growing, and much is being written on the topic by those who endure it and by health professionals. But there is still a long way to go before whichever communities we live in understand that we are surrounded by people with invisible illnesses and disabilities.