I hate it when the world doesn’t acknowledge someone’s story.
I have a disability. At the age of 28 I realised that for the first time, I wasn’t happy with it. 3 months later I realised I had to ‘do’ something about that – it is not something I can get rid of and I wasn’t even sure the feelings were real – I had never heard of a disabled person feeling genuine profound resentment of their body. 6 months later I started therapy and very soon realised that this was a thing. At 29 I know now that this is something that is valid, real, human and something I am allowed to have.
But the world doesn’t see it that way. Disability is complex, but that’s not how it is seen.
If you’re a disabled person, people see you as inspiration on tap. As people who can overcome all barriers and face the world and everything in it. As people facing great odds, but nevertheless achieving. That the only disability, is a bad attitude. People don’t like to think about difficulty, and in adopting this attitude – along with the social model of disability – have effectively removed impairment and bodily difference from the notion of disability.
But if you adapt everything to the nth degree, there will be no way that I can play rugby. There will be no world in which I can ceilidh without having to lie down after one dance. I would still have been a target for bullying, physically and then mentally, I would still have terrible self-image issues, stemming from my body’s nature. And that leaves me wounded, and suddenly realising this is so.
And people hate to hear that. I often feel I am on an absolute hair trigger if disability is raised in my presence now – I feel I’m in a position where I will snap and give someone both genuine authentic barrels. It’s probably impossible to express the true extent of my feeling towards my body it is too complicated – nevertheless it needs me to investigate – for myself.
I find that when one raises this, people have, in well-meaning ways automatically said “but I don’t see you that way”. Sympathy but not empathy. I’m not in a position to know the answer of how to solve this quandry, and in some ways I don’t need to yet. But I need to be allowed to explain some of it. To hold it, work with it and keep it.
I have grown to think of myself as something like humanoid kintsugi. Kintsugi is the Japanese art of repairing pottery with gold lacquer along the lines of the breakage. Thus it appreciates the history and doesn’t shy from the break. I want my disability to be truly acknowledged. I do not want pity as such, I just want that difficulty that it brings physically, mentally, emotionally – to be seen in it’s true nature. It is not the whole picture, and it is not always terrible, but to remove it from my story is insincere, but something that – unwittingly – has happened for most of my life.
The fact is, that this question is taboo, even in disability circles. I am building my own path with this, but having no manual is frightening, exhausting and is costing me so much mental resource.
If someone brings you their story, please acknowledge it, no matter how alien, unusual or counter-intuitive it may seem.
Because it is theirs.
This blog will be part of mine. Nice to meet you.