Today marks the International Day of Persons with Disabilities, and I am one of them, kinda. At this point, I have officially been ‘severely disabled’ for fifteen months (according to German law), with all the perks and all the thoughts that come with it. Mind you, on a scale of 0% to 100% disabled, I register at 50% due to a severely messed up spine, but just that. Slightly severely disabled, if you must.
Seeing that I am an outsider in both the fully abled- and the more heavily disabled realm, the topic of disability in general and my own disability especially has been a difficult and awkward one to talk about, to say the least. To quote Ben Folds – this is me trying:
My disability is a physical one, and just that: my spine may be bent six ways from Sunday, and I’d certainly trade it for an intact model in a heartbeat, but overall I can function, not always well, but for the most part I manage.
The main thing you learn once those limits manifest is to manage your energy well and to plan ahead. I am quite capable of doing a fair share of grand and epic things once I am up and ‘running’, but only then. My average day starts with two related, definitely not fun challenges: a) get out of bed (i.e.: put weight on the spine for the first time of the day, quite lovely that) and b) put socks on, which continues to be the most-dreaded part of my any day, especially without having moved about for a bit before. My lower spine has an inbuilt sideways right angle (imagine the left ‘side’ of a rhombus), so bending forward to reach my feet and put on the aforementioned clothes is a joy and a sight to behold. Once up and running, energy conservation is key – if longer periods of standing (or going out) are ahead – bring a cane, when picnicking – find a tree to lean on and when there is a chair available to sit on – use it.
For better and worse, my limitations are less visible than those images instinctively conjured when ‘(severe) disability’ is mentioned – and seeing that my talents and occupations are not centered around physical activities, I am hardly ever in environments in which they materialize in ways that are overly visible/recognizable to others.
So, yes, I am disabled, I can’t run far, lift anything heavier than an average backpack or stand still for longer periods of time without facing the music afterwards. I won’t be able to hold and carry future children past early childhood and those sports I was traditionally drawn to (volleyball, football goalkeeping, basically anything that involved jumping and landing in less than fortunate ways) have been off limits for a while now, but that’s alright, such is life. Can’t change the cards you’re dealt, only how you play ‘em, right?
One quite interesting thing has been the label of ‘disability’ and ‘disabled’ and the treatment/reaction to it by both myself and others. Of course being disabled still has a ring of stigma to it, even today, even in so-called developed countries and whether we want it or not this fact does creep up on us every once in a while. 80 years ago my home country was governed by an elected (!) regime that actively euthanized ‘un-worthy life[forms]’ by the tens of thousands, so: thank you, dear accident of birth, and while the world and Germany have mercifully moved on since then, a remnant of the idea of disabled people being less than average (read: incomplete/unfinished) still persists today, implicitly and explicitly.
Or as high culture has it when introducing one of its most infamous villains:
But I, that am not shaped for sportive tricks,
Nor made to court an amorous looking glass
I, that am rudely stamped and want love’s majesty
To strut before a wanton ambling nymph
I, that am curtailed of this fair proportion,
Cheated of feature by dissembling nature,
Deformed, unfinished, sent before my time
Into this breathing world, scarce half made up,
And that so lamely and unfashionable
That dogs bark at me as I halt by them—
Why, I, in this weak piping time of peace,
Have no delight to pass away the time,
Unless to see my shadow in the sun
And descant on mine own deformity.
Of course, we learn that disability is not a key factor that identifies us, or by which we identify ourselves (especially not us members of the brainy bunch), but it is an active part of our identity, part of our daily experience, from trying to get out of bed noiselessly to crawling back into it. And whether we are card-carrying members of the club, or not, the reality of that lived experience can lead to the occasional disconnect with one’s environment “Are you in pain?” “Why would you want to get the official recognition of your status?” “Why would you want to talk/write about it?” “But you aren’t severely disabled!” – well, yes – because it is nothing to be ashamed of because it cannot be. That said: being a white, heterosexual cis-gendered male, born in Germany has been a real-life cheat beyond measure, so my complaints are cushioned by plenty of luck in the lottery of birth.
Thankfully, varieties of support systems and agencies have been put in place by governments and NGOs around the globe, helping disabled people in all manner of ways. Thus marks today’s date not just an awareness day for the struggles and continuing challenges towards the de-facto equality of disabled and abled people, but also a day to celebrate all those aides, activists and volunteers supporting people with disabilities on a daily basis.
This is just my personal story as someone who is part of that continuum, but far² removed from the challenges that others, too many others, face in much worse circumstances than my own. And while it is certainly true that many a time terrible circumstances breed the very kind of strength necessary to overcome them, I am continuously humbled by the strength and energy of those individuals, by their drive and their determination to not let minor things like physicality get in the way of their path.
They are role-models to all of us, let’s celebrate them – today and every day.
Moritz Borchardt is a Director of GPPW.
Cover image by Abhijit Bhaduri
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