Last week I fell out of a friend’s front door as I left an excellent afternoon of food, board games and socially acceptable levels of lunacy.
That in itself is not especially remarkable. If as I do you have cerebral palsy and you walk to any degree, it’s always a possibility even when you’re actually concentrating fully. Let alone fumbling in your other pocket to find your car keys as I was in this instance. My stick failed to find the expected ground beneath it and I took the step all the way to the pavement and cut my hand open. Everything I’ve described thus far is entirely mundane and I hope you haven’t already closed the tab out of boredom, but as I got to my hands and knees on a wet pavement, on a damp, grey West Midlands afternoon, it hit something rather more fragile, personal and difficult, something I hesitate to put here.
A growing part of me fucking hates disability.
I hesitate to write this because these feelings still have the chill of the unfamiliar. I’ve been aware of this growing part of myself for nearly two years, but it’s taken me most of that time to realise that these things are legitimate. I was not brought up to think like this. I was raised in an environment that asked me “what can you do?”, my parents and family made a concerted effort to include me in everything that my able-bodied peers did, I never felt self-conscious about disability as a young child – mostly because I was too busy in school, playing football, horseriding, swimming or in the scout movement. There was physiotherapy, endless physiotherapy (or so it seemed!), later there was surgery and increasingly impressive wheelchairs but at no point – no matter how difficult disability may have made things – did I ever resent having it. Without any particular intent to do so, my parents provided me with an attitude that could be considered an exemplar of the social model of disability. “If there’s a barrier to your doing something, there will be a solution, adaption or way round it that you can get to”, was very much the message that was given. I am intensely grateful for this perspective – for all that I’m going to in the course of oncoming pages bash the social model with great glee – it does give disabled children and their families a sense that they’re not at fault for disability and gives great levels of aspirational empowerment. I firmly believe I would not have gone on to achieve nearly as much, and experienced nearly as much if I did not have this in my background. Until relatively recently, I would consider myself a strong proponent of the social model and would have been on the barricades to defend it if I felt people were attacking it.
So what has changed? – I have all this in my background so why do I not adhere to the social model of disability and sometimes see my CP as problematic and at times deeply negative?
There are a number of things, some of which I probably haven’t thought of or considered yet, but I’ll do my best to break them down…
The first is depression…as I outlined here I do not see myself as depressed and do not see these feelings as symptomatic of it. Whilst this is emotionally complex and at times difficult and hurtful I’ve known the black dog a long time and this is not it. Nevertheless depression plays a role in my negative view of CP – precisely because I’m now well again. One of the things that depression means for me is that it is intensely difficult to find the energy in any sense to care greatly about social activities, especially new ones. My depression is a small box which I know very well and can control enough for the world to make sense, sometimes that box is small enough to contain just half my bedroom – the box is quiet, dark and secluded. I had been in that box from the beginning of 2015 until May of 2016…when I emerged blinking in the light, I suddenly rediscovered an interest in things – and wanting to take things on again. It came as a subtle stab on August 9th, 2016 (my 28th birthday), when after a single ceilidh dance at the residential I was attending I had to go and lie down from exhaustion and discovered my feet were blistering. I’d thrown off my depression, but in doing so I’ve remembered and rediscovered some of the limitations on my more ambitious (in a physical sense) self. I don’t like what I see.
I have titled this post ‘The Fall’ and that is not just a reference to the incident mentioned at the beginning, but also a nod to the original fall in the mythical Eden. It seems apt, as this is just as much a loss of my disability innocence and seeing things more how they actually are.
The second is ageing. I am 29. I understand that no one is in fact normal, that there is not a trajectory we’re all supposed to go on through life, I understand the word should is a dangerous one to use when discussing expectations of any sort…but I should not have to have falls at 29. I should not have to have almost chronic levels of fatigue at 29. I should not have to work against getting pressure sores, foot problems or back trouble at 29. I should not have to deal with declining in what are supposedly my prime years. It’s linked to depression mentioned above. It’s tough to realise that you worked so hard to get back to some kind of mental good health where you weren’t always in no state to do anything with thoughts of death just two bad moments away – and realise in the same breath that you lost so much physical capability almost without noticing.
The third is body-image. Another thing I realise only with hindsight is how much ableism I’ve internalised over recent years, and one of the consequences of that is that often now, when I look in a mirror I feel an utter freak. I’ll do more in coming pieces on both the image and the ableism, but the short version is that I’ve started to see how much I’ve tried to keep up to able-bodied norms – and now that I find that harder and harder that’s a real problem (reading Donna Reeve on this is something that I highly recommend). I never used to mind the stares, the insensitive questions, the being treated like someone with cognitive impairment – it was an opportunity to enlighten, challenge and show another side of disability – a way to create more allies. Now I just feel tired of it. Tired of people’s stares and bland expressions of sympathetic-inspiration-porn-socially-awkward-is-that-an-alien bullshit. I want to be seen for who I am and not what people think I am. I am not comfortable in my own skin.
The fourth is that there is no space to talk about any of this. When I first started exploring avenues that I might use to deal with some of this stuff, I called the helplines of some very large and well known UK disability organisations. Universally the people on the other end of the line expressed surprise and often sympathy and a modicum of understanding, but no ideas. In the wider disability community it feels like the social model is taken as an absolute dogma. One that leaves no space to talk about impairment, feelings towards it or any kind of notion that our conditions make us different. The activism is focused on preventing ‘othering’ and I support that in almost all, if not all cases. But to deny that impairment is actually a problem in itself – which is what many seem to want to do in the name of equality and being just like everyone else – makes a mockery of the whole thing.
This is not a question of wanting to be fixed or cured. Not really. Because I understand that with cerebral palsy that is not an option. Were such a thing to be invented and verified tomorrow I would take it – but I know that for the dream it is. I just want negative feelings towards disability from the disabled to be accepted and acknowledged. It’s a funny thing, but when I first recognised this complicated knot of a problem, I reached out to a number of disabled friends and every single one said they’d either had similar thoughts themselves, or knew someone who had disclosed similar things privately. Where are these voices? This kind of unofficial omerta around this taboo subject is precisely why, on my first visit to my therapist I said “I don’t even know if this is a thing”.
There are other factors – which I’m sure I’l come back to, but for now, consider this post as me sticking my head above the parapet. I’m not calling for a return to the charity or medical models of disability, those have proven outdated, toxic and discriminatory. But the social model has swung things too far the other way to the point where negative feelings and aspects of disability are automatically swept under the carpet and considered ‘off message’.
As the subheading of this blog says – it’s much more complicated than that.