One of the landmark moments with my therapist thus far was about this time last year when she looked at me and said, “You’re angry about this aren’t you…in fact you’re not just angry you’re enraged…”. And she was absolutely right – I was and still am. But as ever things are more complicated because I’m only starting to sit with that and let it be. I’ll try and outline some of why that’s so difficult to do…
This blog has been 18 months or more in the making. That is not simply down to my own disorganisation, time constraints, not knowing where to start, or the seemingly infinite amount of thoughts competing for space in my brain – those are all factors – but the main thing that held me back for so long can be boiled down to a central idea:
“Is feeling like this about disability even a THING?!”
That is the central theme of why I write this – trying to work out something which I didn’t think others with disabilities felt or experienced. I had never encountered it, and when I raised it initially with close disabled friends, the responses were guarded and defensive – here the all-pervasive dogma of the social model bit hard. I had therefore taken this as a sign that I had misread my inherited holy text, and that this would blow over. But it has not gone away, and as I’ve continued down this pathway of self-exploration, therapy and homespun philosophy, the answer to that overarching question more often than not, now resounds in my head as “Hell yeah…”. But that isn’t the end of the story, merely a beginning. Because questions beget further question. Knowledge has been likened rather beautifully in this magnificent TED talk by Dr. Marlys Witte as an expanding sphere that as it grows, comes into contact with only further questions. So now I have my first answer – this feeling towards disability is indeed a thing…
So now one of the important questions that I’m in contact with now is:
“How much of this is LEGAL?”
Talking about disability in negative terms is not the done thing in our society, either by the disabled or the able-bodied – at least in polite company. It’s incredibly bad form (and I know this from experience) to shit from a great height on the inspiration pornography churned out by a well-meaning member of the public just looking to brighten a viewer’s day. It is not the done thing (again, experienced) to tell a parent that that video of the CP guy ‘rewiring his brain because of neuroplasticity’ is not representative of all disability potential and experience and that that kind of rose-tinted view is something you find increasingly ringing hollow. After you’ve done this a few times, you learn quite often to shut up because it simply isn’t worth the effort…people love a narrative and if you tell them differently, they often do not like to be challenged in that way. So from there, you begin to question whether the emotions you feel – which are something of an uncharted mental territory, are the right ones to be feeling – are you allowed to have them? Emotion is at the heart of this, but are they socially acceptable? There are two that are primarily at play for me in these matters, grief, (which I’ll focus on in a post soon) and anger which I want to look at here.
“Is this anger LEGAL?”
As people increasingly wrap their heads around the idea that the British stereotype of repressed emotion is both unhelpful and something we probably only do inconsistently anyway – they’ve started to open up. For all of my issues with campaigns like ‘Time To Change’, I’ll give them partial credit in helping a climate where public discussion of feelings is much more normalised – not all the way certainly, but it’s a marked difference. The supposed ‘stiff upper lip’ is being gradually phased out and maybe even our collective bottom lip is beginning to wobble on occasion.
That said, not all emotions have graduated their social acceptability class and anger is one in that category. I’m not comfortable with the idea of suppressing feelings of any sort and I like Mark Twain’s line that “There ought to be a room in every house to swear in. It’s dangerous to have to repress an emotion like that”, but I must admit to having something of a blindspot, or maybe just not being able to practice what I’d preach when it comes to feeling anger. I don’t want to be seen as an angry person. I think I’m generally positive in most of my dealings with people, especially professionally and while it takes a long time to build up a rapport and a reputation for that kind of approach, one blazing row can torch that entire work. To my mind this is not so much about repression of anger so much as feeling guilt when or after it happens. I’ve been known to take great relish in anger, I’m quite good at it really. I enjoy writing long creative rants, merely watching any kind of political news is enough to get my blood-pressure nicely heightened and I can recall several joyous occasions after sporting events or a terrible gig (and folk-music friends know the one I mean…) where the righteous, raging indignation has gotten downright competitive. But I’m not sure I’m particularly at ease with having that in my back pocket – to me, you have to be a very skilled person to marshal that anger well, Christopher Hitchens and Terry Pratchett both strike me as better examples of this – though they are rare.
So no, I’m not especially comfortable with anger being in my picture of disability or indeed my life more broadly. But there are more specific reasons as well as the broader societal unease. First is that this problem of disability (and please comment with your suggestions for replacing the word ‘problem’, I am at a loss here!), often feels like it has no realistic end game. And if that’s the case then will I stop being angry. I’ve mentioned ageing before as one of the central factors in this problem and that is partly down to not wanting to become an embittered old man simply raging at the cards he was dealt. I don’t mind anger if I can do something with it – but that is not a given here. Am I going to be angry forever?
Secondly, this is a thoroughly new narrative for me. I was not brought up angry or embittered by disability and didn’t give it much thought in those terms at all. My upbringing was very positive and supportive. This anger has the shock of the unfamiliar, and I’m still even now having to navigate that. I never used to be angry about back pain or the fact I can’t run anymore – you would have thought that when my sporting mobility left me between the ages of about 15 and 20 that that would have been a painful process. It wasn’t, (well fielding for 40 overs was, but that’s another story!) I can’t tell you exactly what changed, I know some of the factors but there wasn’t a lightbulb moment where I suddenly flipped a switch with ‘ANGER’ stamped on it. It took me a long time to realise that looking for simple root causes was a waste of time – disability is messy and if you live with it, it gets everywhere. It cannot be confined to particular areas of your life. But what that means is that it’s incredibly difficult to define what you’re angry at. Here are some angrymaking things I’ve just jotted down – in no particular order, and this list is certainly not exhaustive…
- Not being able to play cricket. Never having the opportunity to play rugby.
- The constant fatigue.
- Back pain
- The way this government is having a sadistic game with disabled people.
- Having to put extra planning in journeys on public transport
- Back pain
- Being stared at
- Being designated inspiration pornography
- Realising internalised ableism – particularly with regard to feeling nonsexual
- How much of this is taboo within disability culture
- Feeling lied to by disability culture and advocates
- Back pain
Pick the bones out of that and I hope you can see a) why this is so complicated and b) why I worry about being constantly angry – there’s such a lot of it! It’s also uncomfortable because so many of these things (and umpteen others unlisted), have been my normal for years. And while the Brits are steadily losing the stiff upper lip, we’re still quite fond of the wartime maxim ‘Keep Calm and Carry On’. Part of me really wants to be able to just carry on. It’s hard work emotionally to be angry at normal – but I find myself there relatively regularly of late – and that feels weird!
The third main factor is blame. Anger is much better, more refreshing and more fun in my experience when you have a target in mind. With disability I have none. Disability could happen to anyone, at birth or via circumstance or chance, but cerebral palsy being the congenital condition it is – I can’t exactly turn round to my mother and say “What the hell were you thinking having me prematurely!” – in fact in my better moments I’ve an inbuilt resistance to that line of thinking by saying that in fact I was the one that couldn’t wait to get out and experience the world! But having no target for this anger is tricky because where then does one put it? What defuses it, and how does one stop being angry at the luck of the draw? I’m working on these answers but I haven’t had satisfactory results as yet, and part of me is beginning to think I never will.
Again, that’s something that in theory I can get my head around. In practice it’s another matter.