I have the pleasure of hosting this blog from Dr Emma Richardson. Emma is a key driving force behind the group for Disabled People Working in Sport and Physical Activity (and our allies!). Emma has asked me to share her experiences here...
I’ve worked within disability inclusion in physical activity for over a decade, and probably for 8 of those 10 years have experienced chronic pain. I’ve been in conflict with myself (mainly because of the literature and amazing disabled people that have shaped my experiences and knowledge) about whether I am actually disabled.
To look at me on a ‘good’ day, me being disabled probably wouldn’t be a thought in a person’s head. I walk ‘normally’, I can use all my limbs, I’m active, I play sports (very averagely), I am the quintessential ‘able-bodied’ person; except when I’m not. Even on a good day people may notice myoclonic jerks when I sit or lie down, my strategic gripping of mugs with my thumb, second and third fingers as the fourth and fifth are lazy sods, very loud and repeated cracking of the back, random 5 minute yoga sessions when my muscles spasm, and if anyone would randomly ask me if I was in pain, my answer would always be ‘yes’. On a bad day my walking stick or crutches, asymmetrical walk and clear effort to stand up, sit down or move in general draws stares of pity, nosey questions of morbid curiosity, and I can almost read their thoughts ‘oh, what a shame. She’s very young.’ But even at my worst, when I’m hospitalised and catheterised because I can’t move my legs or pee, I would think ‘I’m having a flare up’ rather than ‘I am disabled’. But why?
As a researcher that strives to be of service to marginalised communities, I have in the past seen disability via a social or social relational model lens where disability is caused by social structures and discriminatory attitudes rather than an embodied experience. In that way, no amount of ramps are going to fix my discs, no positioning of braille is going to reverse my nerve damage, sign language interpreters will not stop me from randomly kicking or hitting someone (sometimes not so random), and no amount of affirmative interactions is going to lessen my pain. So, in my head – I wasn’t disabled. From a social relational level lens, yes perhaps but I immediately dismissed myself as being part of that disabling interaction; people were just ignorant so it’s them not me. I absolutely recognise the hypocrisy.
For years I have debated writing about my experience of becoming and ‘unbecoming’ but always being physically impaired; it’s such a strange and difficult transition to ‘become’ one of the group you are studying. I always want to be transparent and honest with people I work with, but when it came to ‘coming out’ as having a long-term permanent injury I had (and have) no idea what to do or say. Though I strive to be honest I am a private person so the thought of exposing my thoughts and feelings on paper for all to see terrified me (and still does). Was this really a useful reflection that others could benefit from, or just an egotrip? The discomfort and isolation I felt meant that I constantly stopped myself from reflecting upon my experiences and instead I would move onto another research project learning about other ‘properly’ disabled people’s much more important experiences.
Following involvement in this group and a spontaneous conversation with other disability researchers, however, I think the time and place is right to start a conversation of the ‘spectrum’ and temporality of disability that I hope will help address the us v them, disabled v nondisabled mentality that I do not think exists in the group, but our society in general.
What’s in a Name?
Sitting under the umbrella of one of Coimbra’s fine cafes, 3 fellow academics I have known for years and myself are taking a break from a disability conference to re-caffeinate and chat. On the way over, one of my friends was limping and I noticed her throwing her left foot out and when she doesn’t, her foot is dropping.
“You ok, pal?” I ask as we settle at our take and see her twist her back.
“Oh yeah, fine. I just have a slipped disc”
“Dude!” I state knowing how painful that is, “there is no such thing as ‘just’ a slipped disc! You should have said! We wouldn’t have dragged you across town just for a coffee!”
“Oh it’s fine. I mean, look at the research we have been listening to. It’s nothing.”
“But we could have rented those wee bikes and that would have taken the pressure off and not given you the hard impact.” I urged her to reconsider our way back.
“Um, actually we can’t cycle because my knee doesn’t allow me to cycle” chimed in pal number two.
I turn and stare at him aghast. “Wait what?!” I exclaimed, “You’re injured too. Folks, why are we just finding this out now! We’ve known each other for years! How long has your knee been bad?”
“Well, years really. Can’t bend it, I can walk for 30 minutes ok but after that it swells up like a melon. I’m supposed to get surgery but they don’t really know how that will help.”
I turn to the 4th friend. “Any long-term injury you would like to share?”
He chuckles, “No, no.”
I feign a sigh of relief.
“Oh well actually, I take fits when I over-heat”
I stare at him like a disapproving mother. So day 3 into a conference in 36 degree heat NOW you let us know you have fits in the heat?! Man alive what a group we are.”
This rather humorous interaction is as close to the conversation as I remember and though of course not word for word, the surprise and shock learning that 3 of my friends and colleagues also experience long term, probably permanent, chronic pain and injury is very, very real.
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The above interaction led to a much more serious and in-depth conversation about disability. What is disability? Who is disabled? Is it permanent? Is it a spectrum? How can one negotiate different identities and places on the spectrum? What might those different positions look like to someone not disabled? You’re faking? You’re putting it on? And then we asked the question, why hadn’t we been open about our experiences before? We don’t have answers to these questions, but one reason we spoke about for the last one that though we all experienced pain, limitations, at times hospitalisation, we did not have a name for our conditions.
I won’t go too far into my list of back issues but the long and short of it is I don’t have a healthy disc in my spine and a year without stress fractures is a shock! When asked why I walk funny (either because my foot is dropping or I’m using a walking aid) etc., I just say I have a bad back. I then get to hear all about how that person has a bad back, how it will be so much worse when I get to their age and I’m too young to understand what a real bad back is, blah, blah, blah – feels really great and totally validating (not!). But, if I said ‘oh I have a spinal cord injury’, a very difficult interaction would occur – there’s a name, an understanding, a diagnosis and an identity formation that goes with that terms; not necessarily positive depending on how informed people are, but nonetheless a name. Similarly, my friend with the knee injury, rather than acknowledgement or validation of his pain, gets to hear about other people’s horror story of knee injuries and, again, how awful it will be when he gets older. If he said perhaps that he had osteoarthritis, a different interaction may occur; there is a name and understanding when one has a diagnosis. It seemed, in our reflections at least, that without a name or diagnosis we felt unworthy of counting ourselves as disabled. Further, without a name to share with others, we may be perceived as parasitic researchers acting disabled in order to advance our own career, weaselling our way into communities we study to take data and publish papers that help no one but ourselves.
I thought I was really onto something. If I had these concerns, and my much more intelligent friends had these concerns, then surely there must be others and this was worth validating. With new courage that this was a good idea I approached a disabled academic I deeply admire (and am slightly scared of) about a future project around this complex, intersecting, and multi-level conflict my friends and I discussed. His response was profound, in-depth, eloquent and considered; ‘Well, why? That’s stupid.” Seeing my deflation, he explained (and this has been explained to me before by people in this group), nondisabled allies are far too cautious and think their presence is far more influential than it is, there is no need to apologise for not being disabled, and often nondisabled academics working with disability think about disability WAY TOO MUCH.
Hi. My name is Emma, and I am disabled.
So I guess my perception about being disabled or nondisabled has changed. If I believe that disability is cased by both structure and interactions with people in society, then yes I am absolutely disabled every time someone dismisses, patronises or belittles my pain. The next person that asks if I have tried yoga or supplements to ‘get over’ my pain or make myself better is getting a slap (metaphorically). For the record, yes I do yoga, yes I take supplements, anything you can possibly do to manage a condition I do. It doesn’t mean I will be ‘cured’ or be pain free, and that is not my objective.
My objective is to be ‘able-bodied’, and by that I mean my body is ‘able enough’ to hang out with my friends, my body is ‘able enough’ to play the sports I love, ‘able enough’ to play with my nieces and nephews, ‘able enough’ to help my dad in the garden, ‘able enough’ to do the work I believe is my calling, ‘able enough’ to go on spontaneous pub trips and adventures, in essence, ‘able enough’ to be me. To do that, I don’t need a name or diagnosis.
I suppose in a way this is bit like my announcement or ‘coming out’ as disabled. I am disabled as interactions with people have caused me to feel discriminated, angry, hurt, upset, anxious etc., and while I acknowledge that no social structure will take away my pain – more accessible ones would certainly help!
So I am disabled, but also able-bodied enough (at least in my good days) to be happy, fulfilled, driven, optimistic, active and of service to those I love which is all I want from my life.