Note: In this entry I’m going to be talking about feeling grief and loss surrounding disability. I’m speaking about this from the point of view of someone with a congenital disability (from birth), for whom that sense of loss is still alien and weird. I am very aware that this is a very different thing from the experience of someone with a disability that is acquired or diagnosed in later life – I make this distinction because it may be missed – and I feel it is important.
Grief is really tricky in our culture. For all the British stereotypes about stiff upper lips and keeping calm and carrying on, (and it’s interesting that so much of the national image of grief is based in wartime memes), I often feel we Brits are more emotionally intelligent than we give ourselves credit for. We do have much to do, but I get the sense that many more people have a more nuanced image of grief – with it’s complexity and general messiness – than we think. That said, there is a long way to go.
I’ve been thinking about this a lot lately. Not just because grief and loss is a major area of the counselling foundation degree I’m embarking on, which means my perspective on these things has subtly altered and changed in recent times (and will surely continue to do so), but also because I have come to realise that in many ways – I am grieving my disability. And that is really really messy. We’ve moved a long way from the keep calm and carry on days of dealing with grief, but I’d go so far as to say that that’s for cases where the grief is self-evident and ‘acceptable’. And even to myself, my sense of grief and loss around disability doesn’t always feel that it’s allowed to exist.
The central problem with it could be phrased something like this: Is it OK to feel sad about something that you’ve never had? How can you feel loss for something you’ve never held?
It’s complicated. In disability circles, there is a strong emphasis (and rightly so) on positivity in disability and positive disability identity. When you ask many disabled (from birth) people if they feel sad, angry or bitter about their conditions – many will give you this kind of answer: “I was born with it, I’ve never known any different, it’s made me who I am and I’m happy with that – I can’t feel sad about something I’ve never experienced.”
I have given this type of answer myself many times over the years, and when I did so I believed every word. I want to make it very clear that those are perfectly reasonable answers, and in many ways I hope to be able to make them with the same conviction again one day. That said, I can’t see it happening. But I’m uncomfortable with the way I currently feel. There are a number of things that play into this. Firstly it feels like a betrayal of my upbringing and younger self. My parents raised me with a very positive outlook on disability and indeed life in general, this is not to say that it was all sweetness and light and that I was sheltered from the other stuff, more that if there was a problem the reaction was to look for solutions and alternatives. They’ve given me a certain amount of stoicism, stubbornness and sheer bloodymindedness that has stood me in good stead through many difficult periods. I like the fact I have this in me, to then acknowledge this sense of grief and loss feels like a betrayal of that, an undermining of a central part of my personality. I was not raised to think like this. Again, this is not to say that my parents would find this unacceptable, it’s more accurate to say that this emotion was just never considered, it just wasn’t a thing – and I’m glad of that. I think growing up disabled, you need to have that drive, grit and determination around you – or you don’t get that far. It’s the positive side of the social model culture – let’s go and find ways to get on with it and go!
Secondly, I’m wary – incredibly wary of becoming that guy. The guy that is angry and bitter at the world. That guy is the underlying image that so much of the media has about disability. The guy that is angry at the world because of circumstance and is stuck feeling that way and will never change. That guy either becomes a supervillain, or goes off to die because disability can’t possibly be lived with, (seriously, if you thought Me Before You was a good movie, message me and I’ll give you your very own personalised diatribe on the topic). This feeling of unease is partly why I think of this experience as a grief. When grief hits you unexpectedly – and this one did – it can feel all-consuming, and when it’s new and you’re surrounded by things that remind and reinforce it for you, it causes you to wonder if you’ll ever stop feeling sad about it. It’s not constantly in the front of my mind, but I do find I have a very sensitive trigger for this kind of thing at the moment – and when the trigger often comes from your own body, how do you stop feeling unhappy about something you carry around with you every day? I know these questions will one day have answers, but right now it’s hard. Very hard.
On top of not wanting to be that guy, there is a whole pressure from society to present as that other guy. I would write something of my own here, but a recent acquaintance Emily Sheera Cutler and I have been talking about this kind of thing in the last few days – and she wrote this so succinctly I’ll share it with you:
“I really dislike the pressure to love being disabled despite the constant uphill battle it is, or to always believe in the possibility that I can have a successful and fulfilling life as a disabled person when there are real, tangible barriers to that.”
I should add – Emily is a strong adherent of the social model of disability, a view I do not share. It is interesting that we agree on so much but differ on this – and I wonder if that is because the US take on the social model, appears very different than the UK one, something I’d love to explore…She feels that disability wouldn’t be the uphill battle it is, if the societal prejudices and discrimination were removed. We differ in that she leaves it at that. She is satisfied if people will accept what she can and cannot do on the basis of disability. For me personally, I still feel and experience the loss of what I cannot do because of the disability as painful. Not on a permanent basis, but I must acknowledge that it is there.
We are expected to have this relentlessly positive outlook on life with no qualms about our identity or situation. No thought of the social, cultural, physical, emotional and political factors that play such havoc with parts of our lives. We are expected to be constantly available for the inspiration pornography industry – and it is an industry (I’m looking at you, The Mighty) – and never be conflicted about this kind of thing. For the benefit of everyone, we are not expected to ask any difficult questions. Of course, these positive identities and achievements should be celebrated but it is not all black and white.
In a nutshell I suppose this is what makes this sense of loss so complicated. It’s very hard to deviate from the positive narrative, without people thinking you’re calling for a pity party. I am not. I am calling for acknowledgement, and for nuance. That is all I ask. In the past I’ve used the analogy when asked about disability, “You play the cards you’re dealt”. And of course you do, and I will play them for all they are worth. But it would be nice to be able to feel it was acceptable to occasionally turn round and curse the dealer, without being thought ungrateful, bitter, angry at the world and a sad wreck. It is compounded in my case that I don’t believe there is an actual dealer to curse either. I can’t blame anyone or anything for the fact I was born prematurely which led to cerebral palsy. It is a fact of life. Sometimes though, the facts can feel pretty shit.
The other line I was incredibly fond of using was “I’ve never known anything else”. This is true. And this is false. True, I have never experienced what it is like to be able-bodied. I have no concept of what it’s like to not have chronic back pain, or to be able to stand straight, or to kick a football hard enough to get it airborne. In that sense I don’t have to worry about those things, nothing is new and I’m used to so much of it. I find workarounds, alternatives and a sense of accomplishment in other things. But it is also false. I have known something else because I see it around me every day. It is not the same as envy or jealousy, it’s something less angry and more subtle than those things. As a disabled person, I can’t not notice all the things that I miss or struggle with. For reasons of ageing and coming out of depression, as mentioned in prior entries – I’ve gone from not being bothered, to noticing it all the time – and I’m now wondering whether I’ve opened a Pandora’s box of things that have escaped permanently. Now every time I’m struck by something which CP limits, I know I run a risk of being upset by that. It won’t strike every time, but that grief is always a possibility – and I’m really not sure what to do with that.
I miss the life I’ve never had. Not because I’m bitter, not because I’m sad, not because I’m angry – those things play in but that’s not the main driver. I mourn because so much of how I’ve dealt with disability up until now, feels like a useful deception. We are sold a myth of equality and it is just that. And within that myth, we are told we must love disability. And we are taught implicitly to ignore the constant uphill (though still exceptionally exciting and interesting) effort that living with a disability can be. I grieve for the non-existent, because for all that there’s no such thing as normal – a ‘normal’ life can sometimes seem bloody appealing.
I grieve for the life where I never had to deal with the amount of bullying, medical intervention, prejudice, internalised ableism and a breaking body.
And that is messy. Because I’m still not convinced that that’s OK.