Updated: Jun 15, 2019
Safety is everything....
Every definition of disability is a description of a deficit from the accepted norm. People who are neurodivergent engage in much debate as to the true relationship between their differences and the broader concept of disability. How much is socially enforced and how much is an objective deficit? Most crucially, why is it that two people with very little to separate them in terms of intellectual ability or emotional capacity may have wildly different viewpoints on their own circumstances? Why does one feel disabled most or all of the time, whilst the other does not?
There are dozens of factors at play, but I can only speak with certainty about my own, lived experience. It’s about the difference between feeling safe and feeling at risk. The less safe we feel, the more disabled we believe we are at any given time.
Only two aspects of my life have consistently made me feel disabled, and lack of safety and security has played a huge part in both.
In my twenties I awoke one morning with horrific pain in my lower back. A penetrating pain that pierced my bones and permeated my consciousness. I could barely move and when I finally struggled out of bed I could only shamble slowly, inch by inch, each crawling step a fresh spear driven into my back and hips.
My doctor blamed over exertion – it would clear up after a few days rest. When it didn’t I was set on an escalating cycle of sequentially stronger prescription painkillers at ever higher doses. It was about a year before the onset of other, seemingly unrelated symptoms led to a diagnosis of Reactive Arthritis – it hits suddenly and dramatically as a bodily reaction to infections most people wouldn’t even notice. It took nothing but a course of antibiotics to clear the worst symptoms and restore me to almost normal function within a couple of weeks. Sadly that wasn’t the end of it. A series of flare ups over coming years led to permanent Ankylosing Spondylitis – arthritis of the spine – which left me in constant pain and reduced my mobility considerably. I have leaned heavily on a walking stick ever since.
There is no doubt whatsoever in the minds of my doctors or those who see me in the street that I am disabled in an objective sense. By all definitions I am physically disabled – my ability to walk is severely compromised and lesser than most people. I walk slowly and stooped with an uneven gait, my knuckles white from gripping my cane. My pain is sometimes evident in my face for all to see, but despite the obvious visible manifestations of my mobility problems, I do not always feel particularly disabled. I see others struggling more than I.
When I go grocery shopping I probably look the least disabled. I can pop my stick into the trolley and support myself with the trolley itself. It takes on the role of a walking frame or rollator. I can put my weight into that to help keep me upright rather than the stick. Other than some difficulty when I have to leave the security of the trolley to grab a product off the shelf, there is little to distinguish me from any other shopper. The trolley offers me a fleeting glimpse of what my life was like before my physical disability changed everything.
Now that may have set your mind down a particular path – the balls of cause and effect in your mental pachinko are dropping into their slots. If using the trolley makes me “look normal” I must feel less disabled at those times. Alas that is not the case, dear reader. Nothing could be further from the truth.
Life with a physical disability is uncomfortable, in no small part due to the attitudes and behaviour of those I encounter in everyday life. Not those I speak to, but the onlookers that look down their noses, that make tutting noises when I’m slower than them to advance in the queue or mutter to their friends about me as if I were deaf as well as lame.
There are also good people though. There are those who go out of their way to accommodate for my difficulties. They stand out of my way so as not to block my progress. They are patient with my slowness, they wait that extra few seconds to hold a door open for me or ask “do you need help with that” when they see me struggling. Such people go a long way towards making life more manageable for the millions of us with compromised mobility and thankfully, they are not as rare as once they were. Their kindness and selfless care of those less able than themselves is a credit to them. Tiny gestures can go a long way.
When I’m pushing that trolley though, that’s when I feel least safe. It’s a good feeling to be standing reasonably upright and walking much like everyone else, but my “badge of office” - my walking stick – is out of sight. I’m no longer visibly disabled in everyone’s eyes. I look “normal” then, so the little accommodations from other people that help me manage are nowhere to be seen. I’m playing by the same rules. I’m expected to rush around like everyone else, to put up with being barged and jostled, to be hassled at the checkout whilst I struggle to pick up items from the bottom of the trolley and get them on the conveyor. Then there's the dirty looks from the cashier when they have to slow down or pause shoving my items past the laser whilst I carefully pack my shopping away.
The times I feel most disabled, the least safe and the most under threat, are when people expect more of me than I’m capable of. Humans can be remarkably intolerant of someone who is just a fraction too slow, or needs to think a little longer than everyone else. The majority are perfectly decent and more than willing to help or be patient when they see me leaning on my stick, but when I put it out of sight it’s like a switch has been flicked that turns the kindness and humility off in a flash. I’m no longer a middle aged man with a mobility problem, I’m an annoying, frustration – a slowcoach, a ditherer – an inconvenience to all.
That’s when I feel the most disabled – when I am judged by the same standards as everyone else and found to be lacking. The expectations of me may be unrealistic, but without my stick to signal to everyone to go into “Disability Accommodation Mode” I can be treated as a pariah. It can be highly unsettling at times how rude, aggressive, even threatening people can be when you don’t meet their expectations of “normal” without conforming to their vision of how a disabled person should look. I have personally been told I was “tricking” people into acting inappropriately by not giving out overt visual signals that I have a physical disability.
That brings me to the second aspect of my life that has made me feel disabled. I am Autistic. Unlike most Autistic people of my age I have known since childhood of the reason for my cognitive differences and have watched as academic, medical and social understanding of autism and it’s separation from the accepted norm has proliferated. There is still a long way to go, particularly in the realms of public awareness and acceptance, but there is no doubt that there has been progress. For over a decade I didn’t meet or hear of anyone like me – considered Autistic yet not further limited by Intellectual Disabilities, Epilepsy or “Problem Behaviours”. I undoubtedly thought about and perceived the world quite differently from almost all of my peers, but the lack of any accepted knowledge of how to deal with someone of my distinctive nature left me in the position of being an anomaly. I was not just a fish out of water, I was a fish on the wrong planet, and a desert planet at that. I had to adapt to survive so I set about gathering the tools I would need to build myself a system to facilitate social respiration. Over my teens and early twenties I studied human behaviour and fabricated a series of strategies, of disguises and characters that allowed me to bluff my way through and stay in education, then employment. They were always being refined and were far from foolproof, but by the time I was approaching thirty years of age they were pretty effective. This was also the time that I was first able to make contact with others like myself amongst early adopters of the World Wide Web.
Whilst a small number of us had known of the reason for their differences for some time, like myself, the majority had received their diagnoses within the previous few years. All of us recognised that our ways of dealing with our social disconnections had common themes. Whether we had known why we were different or not, we had all been aware of our separation from the crowd since childhood and had devised similar strategies for going unnoticed. Very few of us had even attempted to challenge the status quo and those who did had failed. There was a bitter undercurrent of resentment amongst our community. We were distributed all over the world, never likely to meet in person and yet it was clear that many of us felt marginalised in the same ways wherever we lived. Clearly we were all intelligent, communicative people when talking to others like us, so why couldn’t we be accepted the same way by the rest of “Neurotypical” society?
When we describe a neurodivergence such as autism as an “invisible disability” it goes far deeper than us not having any physical "tells" that identify us. For many of us, even now, our invisibility is augmented by our conscious efforts not to be noticed. We have constructed elaborate masks to allow us to slip between the cracks of society and support ourselves against the odds. Even the academics and doctors who research autism have acknowledged that “Masking” is an inevitable aspect of living as an autistic person. It’s been 25 years since the Autism Spectrum was incorporated into diagnostic manuals. A quarter of a century of “awareness campaigns”, equality legislation and social progress, yet still it is the golden rule to never mention that you are autistic on a job application or a dating profile. Those who find out we are autistic often betray their ignorance and prejudice with bizarre questions:
“How long have you been autistic?”
“What’s your special gift?"
“Do you have feelings?”
Autistic parents even get asked if they are able to feel love for their children.
Is it any wonder we don’t feel safe exposing our differences to the world at large when such ignorance is still in abundance? Even many of the people I know online in autistic circles only talk about their autism in secrecy, their names and identifiable details hidden away lest they be exposed publicly. They are afraid for their jobs, their status, respect, even their relationships. Our masks and our invisibility are a direct result of the pressures and intolerance of the societies we live in. We do not feel safe in this world.
For this reason, and this reason alone, whilst in objective terms my Autism may seem to be less of a disadvantage to me than my arthritis, to me it feels far more disabling. No matter how well crafted our masks, they inevitably slip and we end up acting true to who we are, rather than how we wish to be seen. It may be stress, fatigue or a personal attack that trips us up. It could be sensory stress from lights, noises, smells, proximity or a host of other stimuli which overload our abilities to keep up the pretence. It often comes when the years of pretending to be someone we are not finally get too much and we have a breakdown.
The inevitable reaction from most onlookers when we drop the mask is to see us as “weird”. We are plunged into the uncanny valley – we look like one of them, we sound like one of them and we speak the same language, but something about us is “off”. We may no longer live in an age of pitchfork carrying mobs attacking outsiders in the cobbled streets, but the muttering, the pointing and the impatient huffing in the supermarket, the restaurant or the doctor’s waiting room can be just as unnerving, just as disabling as being cornered by angry villagers.
I made a decision a while ago to stop masking altogether. It’s not easy to break the carefully constructed habits of a lifetime and it will take me some time to lose every facet of my disguise, but I’m well on the way to being the real me I was before educators, employers and society at large forced me to reject myself in order not to starve.
Whatever the medical or academic definitions of deficit and disability are, it is the actions and attitudes of other people that make me feel different and a liability. We can do something about that – all of us… if we choose.
I’ve made a bargain with the invisible arbiters of what is “acceptable”. We cannot both be hidden from sight, so I will go first and be visible in my raw autistic entirety. I will not lead my life scared and unsafe, feeling far more disabled than I actually am so that others may cleave to their illusions of normality. I will stim when I’m agitated, I will wear dark glasses in overly bright rooms and headphones where it is noisy. I shall pay no heed to the ignorant and the intolerant who chatter about me. I will tell people they make no sense instead of trying to work out statements that lack context or are just plain erroneous. I shall no longer nod and make appropriate sounding noises when I haven’t the foggiest idea what is being said. I shall not meekly retreat into the box created for me that our unseen masters stamped as “defective”.
I feel safer already.
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