Grieving The Non-Existent

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.

 

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4 thoughts on “Grieving The Non-Existent

  1. Chris I know you are pissed off with disability inspiration porn but can I just say I am inspired by your honesty in talking about this. I am “only” a parent of a disabled child but I too am challenged by some of these issues and struggle with how to support my daughter as she gets older and sees that her life is different from the life her friends and relatives have. What do I say to her? I try to be as positive and matter of fact as I can which surely must be right, and I used to get bloody furious with family members treating her condition as a tragedy and weeping when she struggled to pull up to standing (how DARE you weep when my child is trying so hard to achieve something and doesn’t even understand the thing you are crying about). I wish they would bloody well weep about my life, having to give up work, constantly fight to get my child an education blah blah blah, or even maybe help out occasionally. And how can I be angry about how my child is, when she is my child and I love her unconditionally. There is that beautiful but terrible sculpture of the dead child rising up to heaven away from their wheelchair, made whole and perfect and escaping their earthly body, you know the one I mean. It just makes me cry. Because on the one hand I wish my child could run and jump and forget her bodily limitations, but on the other, how can we escape our bodies, how could something that didn’t have my child’s body be *my child*? Am I wishing she was something she isn’t? It’s so hard to understand but whatever you think, I can’t see how grieving about a disability is wrong in any way (though you can do it more or less tactfully). Life isn’t fair, no one is the same, but currently in society being physically disabled can be pretty shite. We can wish things were different in lots of ways and be sad they aren’t. But I suppose what I’m really thinking is that wishing you / your child weren’t disabled is like wishing you had different parents. We can wish but there it is, it’s a fact and as you say you deal with what you get, which includes being free to get angry about it. Anyway if there is a heaven then I guess it’s fine to be in a wheelchair there because it would be 100% accessible.

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    1. Thank you, I’ll look at the whole inspiration porn thing in a later entry – it’s complicated – as one has to recognise that it’s impossible to police what people are inspired by (and would we want to do that anyhow?). I think one of the reasons that I find this so difficult is that as you say, it’s surely right to be as positive as one can…for all that I find the social model unhelpful at this point – I have to acknowledge I wouldn’t have come as far as I have without it. It’s a paradox and a right bastard!

      As Emily’s quote says – we are under a consistent pressure to be positive in our disabled identities – to question or find problems with it is upsetting to those with and without disability, because it brings in the idea of a self-pity party – and that won’t do either.

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  2. Reallly interested in what you have to say Chris on Disability and the Social Model ..and it highlights some of my discomfort around the concept of high achieving disabled people as being “superhumans”.. trying to like you say avoid the nitty gritty of the shit that people with a disability face every day .. almost ” sweetcoating” their experiences .think you ahve more stuff on social model ..need to read more on that ..
    What also resonates with me is around acceptance of you having been fed a shit hand,, and not trying to make out it’s all wonderful. I do think this is really important in terms of one’s own sense of identity in relation to those around us, I can identify with this on many levels.. (without I hope undermining your experience in any way) re; my social identity as a 48 year old childless woman + as a person who has experienced mental health problems . I have found a liberation in accepting all these forms of idenitity without trying to “soft soak” them. ie I have often said the experiences I have had of mental health crisis have made me the person I am today. However it doesn’t stop me from being pissed off that this experience has also limited my life choices in many ways as well ; such as having children (I am sure I would have at least tried to have them if I had not had MH problems) Career(compared to my peers I have lower job status than I think I would have had if I had not had years of being unwell and out of the labout market) and other ambitions (travelling – don’t have the income as have accumulated lots of debts from when I have been unwell).. Yes I try to live life to the full and make the best out of my life but that doesn;t mean that recurring mental health problems has been life limiting to me and that hurts and its painful to acknowledge , it’s unfair and at times I do get angry about it.. this is a process i’ve worked through over 20 years and I think i’ve finally came to a state of acceptance about 4 years ago . This is my lot and that’s ok .it is what it is.. ultimately I am grateful for being one of the lucky ones to actually get out into this world in the first place and I am gonna make damn sure I try to make the best of the time I have here too.

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