What Marvin Gaye and Tammi Terrell didn’t realise in 1967 is that whilst they sang about their love for one another via the metaphor of ‘Ain’t No Mountain High Enough’, they also inadvertently summarised quite succinctly what it’s like to live life with a disability.
Spring forward 10 years, and I am born. I was ill from birth. I had my first surgery before I was two months old, and was close to death on several occasions before I’d reached my first birthday.
This trend continued throughout my childhood and adolescence. Each week was spent in hospital, and I’ve actually lost track of the number of surgeries, tests, scans, and consented medical violations of my anatomy that I have received.
I am now officially, and inescapably an adult, and the trend of hospitalisation and surgeries has, and will likely continue. I’ve spent so far, cumulatively, years of my life in hospital.
Do I regret this? Nope.
Does disability have an upside? Nope.
Would I change who I am? NOPE.
I was born with a spinal cord condition called Diastematomyelia. Wikipedia does marvels for explaining it if you are interested. I have a rare and severe version. My spinal cord in places is as thin as a thread. At least ‘one in a million’ were my quoted odds of having it in the manner I do. Cool… To the casual observer, I just have a bit of a limp. Often I get asked if I have injured myself. Sometimes people don’t notice it at all. But in reality, it takes a lot of strength to move my limbs. I live with the risk of injuring my spinal cord if I do such frivolous things as fall off a horse or ride a particularly aggressive rollercoaster. Also, my condition means I have an imbalance in my nervous system, so I have invisible disabilities too; my heart sometimes beats too quickly, I injure and bruise very easily, and I have arthritis basically everyywheerrreeeee. Fun, right? No. But I wouldn’t change it.
When your first significant memories are of struggle, and while your peers at school are enjoying such life experiences as running around on the sports field, and learning how to kiss, your memories of that time are of being systematically bullied, struggling to cope with the rigours of a school timetable when your body just wants to collapse, being branded a cripple (joke was on them – I’m technically spastic), and being told by a schoolmate whilst standing in the science corridor that it would be better off if you were dead, you develop a level of strength, patience, and positive self-acceptance which is perhaps not necessary in a normal life.
This strength, patience, and positive self-acceptance is great.
I use it daily, and it brings me a greater quality of life and a sincere happiness that I don’t think I would have if it weren’t for my disability.
When I was about eight or nine, I knew that I wanted to be an actor. I would stand on the patio outside the library at school and improvise Shakespeare into a comedy skit. People hated it. I didn’t care. By around age 16, I was making short films, writing terrible stories, and messing around far too much with a reel-to-reel tape player recording horror stories.
Wanting to be an actor is probably one of the worst decisions I could make. I barely stand a chance. I am statistically the furthest thing possible from an able-bodied, middle-class male than you can get (and don’t even get me started on discrimination as whole within the industry). But every part I get is a victory. Every modelling job I get is a lovely middle finger to standard expectations of others, and the clear level of disdain that I am sometimes met with by my able-bodied counterparts doesn’t intimidate me – it solidifies me.
The bullying and segregation which I received as a child is still present today. I don’t think a week goes by when I don’t receive some kind of negative reaction from someone. I’ve received it from strangers, from people I have worked with, from acquaintances, past friends, as well as from men I have dated. But it doesn’t make me weaker. It hurts me sometimes to my core, but then it builds me up. I use it. I access it in the spectrum of my emotional material. I can easily take myself to a very personal place, and back again, without any struggle. I use it also in my photography – I am a portrait photographer, and my empathy for discomfort affords me the ability to make others feel at ease.
My disability also means I am not reliant on others who do not add to my life. It has taught me how to identify only quality people, and to call only those people my friends. I don’t have emotional baggage or futile drama in my life, and my time on this earthy oblate spheroid is spent wisely and mindfully. And happily.
I am truly happy. I find joy in the small things, in the huge things, and the unexpected. If I wake up one morning and I am in pain, I don’t freak out. I read a book. I write. I watch YouTube videos of people rescuing ducklings from storm drains. I give myself permission to be unproductive. I know that moment isn’t a reflection on myself personally. And the satisfaction I get when I have the good days is so much more fulfilling as a result.
Okay. I’m being very diplomatic here. Some things do frustrate me. I’m still fallible, and just as prone to being swept up with annoyances over the absolute as anybody else. I think one of the hardest things to manage when you have a disability is the constant struggle to close the perceived gap between disability and ability. It’s always there. I get ‘that look’ from people. They survey me, and I can now recognise a mile off the mental arithmetic they are managing in order gauge what to say to me. I’ve been told before I would be beautiful if I wasn’t disabled. I’ve had people mock me physically, or openly laugh at me. I ignore it, but sometimes it still hurts. It gets worse when you fall into the maelstrom that is internet dating. Probably one of the most toxic and judgemental forums ever invented. Intelligence, ethics, compassion, and an appreciation of the intricacies and cinematic value of the flagship documentary ‘Jurassic Park’ are out the window there. If you want the perverted, creepy side of humanity to show its face – create an internet dating profile and reference your disability. The white knights appear in abundance then, and offer to ‘play doctor’ instead of making an enquiry about my favourite colour, or if I have weekend plans. “Oh, but it’s more awkward for them!” I hear you say. No, it isn’t. I can assure you.
My frustration with this impasse is that we are in fact all the same (but different, of course – I’m not generalising. I mean we are ‘one of the same’). My thoughts aren’t disabled. Nor are my emotions. I just have a flaw in my spine that messes things up. The neurological conversations between my anatomically perfect brain and my anatomically perfect arms and legs get scrambled. If you break it down to physiology, it’s a very functional situation. I don’t think in disabled terms unless my body reminds me (which to be fair is around 100 times an hour) but in my id, I am part of the majority. But that gets overlooked often from the outside, as often the hidden things do.
In Greco-Roman mythology, there are creatures called Harpies (check them out in the 1963 version of Jason and the Argonauts if you want to spend one hour and forty-four minutes wisely). They were initially revered for their beauty and grace. Skip forward in time, however, and the same creature has been turned into an ugly tormentor, viewed with disgust over her physical appearance. Tough break, Harpies. Double standards at large (I have one tattooed on my arm as a personal joke to myself).
But! There is an upside. I have an Anti-Shallowness filter pre-installed. Much like how I know I have true friendship with those I am close to, finding somebody who can see me for the complete package, and not as a gammy spinal cord is a wonderful yardstick. Expanding this philosophy to include relationships, I often think how awful it must be to live a life not knowing if your significant other was only with you because you look good in high heals. That thought alone is far more terrifying and isolating than anything I have to consider.
Despite the daily challenges, I don’t sweat the small stuff. I know that perfection is overrated. I am kind to myself, and to others. I realise that life is fragile, and that cherishing every moment is essential. So I cherish them, and I am at peace with the physical challenges I have.
Thinking about it though, maybe I would change one thing. I can’t hop. From the word alone it sounds like a lot of fun – ‘hop-ping’. Man, that sounds great. But then again, I also can’t run, jump, or regulate my body temperature, but at least I know which battles are actually important to pick in life.
Having a disability is a constant climb. A struggle. But despite knowing I will never reach the summit, no mountain will ever stop me. Disability doesn’t define me. It is my ally. An ally I would happily throttle sometimes, but hey – we are all the same with the lights off (but it’s better when we leave them on).
Never stop climbing.