I’ve written before about Letting Grief Be True. To me, letting grief or indeed any other genuinely emotion be real is one of the most important things that one can do.
I bring this up because a few days ago, I received a message via social media from someone who like me, has Cerebral Palsy and shares a lot of the doubts and difficult emotions around disability that I have. At the end of their message was a question “What do you do when it all gets too much?”
I did my best to answer for myself and to be helpful, but it’s such an enormous question that it has stayed with me ever since. Especially because, for both of us, our ‘it’ is a permanent disability for which there is no cure and will cause us to deteriorate physically, faster than our able-bodied peers. That is a pretty enormous ‘it’ when you don’t identify particularly strongly with your disability. We don’t deny our CP, but for much of our lives, it has been ever present, to the point where it could actually be ignored as a fact of life – in the same way most people routinely ignore their own breathing. When CP raises it’s head later, making it’s presence known, it can feel like it poisons everything. It can feel like dropping black ink into a glass of water, eventually everything resembles the colour of the ink. The question is not so much about coping with day to day challenges and frustrations, but about coping with a central piece of one’s life and identity.
One thing I’ve come to recognise, is that while it’s central, there is a stark difference between how the world sees it, and how I see it. And it’s not simply that one side sees CP as black and the other as white. There are things which the world seems to fret about and negatively identify with CP, which to me are small fry, and there are things which to me are deep personal questions of identity which the world is currently ill-equipped for. There are seemingly endless shades of grey within these differences. These questions have not always been on my brain, and so I am not saying that all people with disabilities share my concerns, but those that do – and those that will in the future – will recognise the jarring feeling of suddenly being forced to confront a round-hole problem, armed only with square pegs handed out by our society. And so, without the tools to explore things like, ageing prematurely, emotionally dealing with a lack of independence, having to rely on others for certain things despite being relatively young, constant pain and fatigue, feeling under attack from one’s own government – to name a few – we do what any sensible person would do to start with. We shut the hell up. After all, there are disabled people who seem perfectly content, happy, able to cope with all of disability’s curveballs. We must be the weird one, the angry one, the wrong one. So out of embarrassment, shame, self-doubt and guilt – we keep quiet.
In doing this, we stick to the rules of the societal game. We keep playing because we don’t want to upset people, we don’t want to be seen as a pariah, or maybe more dangerously in today’s world – to question ideas around body positivity – an increasingly crowded piece of moral high ground that people seem to want to fight over… We stay quiet because we don’t want to hurt ourselves by bringing up something so painful, and we don’t want to hurt our loved ones who have often given everything of themselves in order that we might have as normal a life as possible. It’s very hard to turn round to a parent or carer who truly does see past the disability, and say that for you it actually is an issue and maybe even a problem.
For these and other reasons, the silence continues. But a situation where there is no sense of validation or understanding or acceptance of these feelings will eventually implode. Even if it’s behind closed doors, in hushed voices or in secret facebook groups, untold stories – of disability and everything else – need to be heard.
In answering the correspondence of a few days ago, questioning how I deal with it when it all gets too much, I realised again, that although I’ve come a long way since I first started wrestling with my own disability issues – I am not finished. It is not something I’ve solved, and indeed I may never fully resolve the issue of how I feel about a body that I cannot get rid of and have to learn to live with. But I know that I have come a long way. And that has come from sharing my story. In the same way that I gained my best insights into my own mental distress and suicidality from explaining my journey, opening up about how I feel about disability has provided me with a huge amount of liberation. It’s not been universally accepted by any means, but I have been truly heard in enough spaces and by enough people to realise that THESE FEELINGS ARE REAL AND I’M NOT CRAZY.
I realised in responding to the message a few days ago, that I have very few concrete strategies for dealing with these feelings when they become overwhelming. When despair, grief, hopelessness and rage get a grip on me, I’m not the sort of person who has many physical coping strategies that I can immediately do. But I realised that the reason that I am able to navigate my way through those dark places more easily now, is because I feel validated when I am open about them.
Too often, society looks to deal with difficult emotions by ‘fixing’. And too often this plays out as a form of repression and denial. I feel that more often than not, difficult feelings deserve to be heard. And when we can explore them openly, we can see them for all that they are. And then decide for ourselves – what to do about it.