As wheelchair basketball players, we often joke around who has the most spectacular cause of disability. Amputation due to cancer? Boring. Falling asleep behind the wheel? Yawn. A fall during skiing? Now we’re getting somewhere. A roadside bomb in Afghanistan? Yes, that’s up there! A car crash at 200 kilometres per hour on the Nurburgring? Oh most definitely!
Me? I fell out of a tree…
As well as a poor rhyme, this has got to be the most boring accident imaginable. No one to blame but me. I wasn’t picking apples, nor was I reaching for the heavens. Nope. No reason other than wanting to be as high as I can. Utterly stupid. My only relief from being a ‘point of mockery’ is that I was just fourteen years of age which usually brings some awes of sympathy.
But I didn’t want to be labelled DISABLED, and certainly didn’t want to be considered incapable. I was fourteen years old and just starting out in life: I wanted it all: Sex, drugs and rock ‘n roll! Or at least the sober equivalent; education, money and a girlfriend.
Accepting my new me didn’t mean I needed to accept a new place in society; a place of low expectation and reduced participation. It was 1981, a time when disability was still very much on the fringes of society, mostly out of sight and absent of role-models. Perhaps it was this that formed a stubborn attitude of ‘No Excuses’.
In hindsight, this was sometimes confused with a non-acceptance of my wheelchair, but that was certainly not the case. Realising a point of no return, I embraced my wheelchair as a part of who I was. In fact, my new-found paraplegia was novel and might even have saved me from silly haircuts, regretful tattoos and preposterous clothing. And today, even if a wizard an alien or a god would come promising me to walk again, I would wave them away.
Despite my fierce independence, I acknowledge I need help in certain areas. I have no qualms about asking a stranger to pass me something that is high on a shelf in a supermarket. I have no problem asking for assistance if I need to get up stairs or a steep hill. Nor will I forsake (part) wheelchair reimbursement from the government or request a DISABLED parking permit. But these are linked to my personal abilities. Never did I ask to be part of a larger DISABLED community. And this is where it becomes complicated. Let me try to explain:
Firstly, I have no clue what it means to be blind or deaf. I’m fortunate not to have dyslexia or dyscalculia. Mood swings are rare and depression relatively unknown to me. Not being able to feed or wash myself has only been limited to brief periods in a hospital. Yet I’m considered part of a group of which, for the most part, I know nothing. A disability is a very personal and unique thing.
Regardless of my sentiments, in the eyes of many, I have the label. But for many others, much to their regret, they do not. In my blog Disability: Understanding the numbers I discussed the many disabilities that are invisible and are therefore met with much non- or misunderstanding. To be a part of discernible group offers identity, but most importantly, recognition and acceptance of the disability. Again, that is not something I purposely seek, nor avoid. It is what is. Many will point to my association with ‘counterparts’ in wheelchair basketball, but for me this is only associated with fun, social interaction and abilities.
I’ve learned over life that the label of DISABLED is both a curse and a Godsend. The curse is that of the personal injustice of ignorant people thinking ‘we’ are all one and the same. In one worst case scenario, that ‘we’ deserve all the pity and should be in a care home. In another, that ‘we’ are social parasites living off welfare. Did you know that a UK survey revealed that 25% of respondents said that persons with a disability were a burden to society? Both scenarios and much in between, anger me. I work, I pay taxes, I even represented my country in the Paralympics. Who are ‘they’ to pity or condone me, based only on how I appear?
And this is perhaps where the label disability becomes a Godsend; a communal and societal driver for more inclusion, more participation and more respect for persons who experience disabilities, also, and especially, for those less fortunate than myself. The different models of disability aim to visualise this (see below) with the model moving in time, counter-clockwise from the left to the top, with the purpose of adding context to the DISABLED.
The World Health Organisation defines disability as follows: “An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Disability is thus not just a health problem.”
One could argue that this applies to all of us in some stage of our lives. We all experience impairments, we encounter activity limitations and we experience restrictions in certain participations. As a society we need to recognise and understand the complexity of disability and accept that everyone is and can become DISABLED at any time. This means that the line of disability has to be drawn with much more flexibility, depending on the purpose and subject. This will encourage a greater normalisation of inclusion, rather than the simplistic notion of it being something that is singularly complex, costly and therefore best to avoid.
I would like to challenge everyone to think about what inclusion really means. For an architect to omit persons on wheels is unimaginative and segregative. For employers to limit the problem solving skills a diverse spectrum of workers would bring is inhibiting. For a shop owner to miss out on the opportunity to serve more customers is contradictory. For politicians to not include is irresponsible and ostrich-like.
Today the label DISABLED has a function, but in a perfect world that function would not be required. We would then all be considered equal, each with our own unique differences in a society where everyone can go everywhere.
I’m counting the days…