When I met a fellow dyspraxic, little did I know that she would soon become a great friend, as well as the joint founder of a partnership with (hopefully) a loud voice, but both of those things have become true. Barbara Neill and I met in 2011, and cemented our friendship over a shared sense of humour, a frustration at the injustice in society over disability, and a passion for good vegetarian and vegan food. Oh, and the fact that we’re both dyspraxics, writers, and creative thinkers.
Let me back-track a moment. The World Health Organisation estimates that dyspraxia affects 6% of the population to varying degrees; other estimates put that number anywhere between 10% and 20% – and still another puts it at 10% of the UK population.
At the moment, we don’t know why it’s four times more likely to occur in males than females. Barbara and I wonder if it’s because the condition is more noticeable in males, because they’re more likely to be sporty or active. This isn’t a given, of course; I’m not sporty in the slightest, and I have female friends who have played rugby at league level. We don’t understand all the science behind it, and it’s entirely that the scientists don’t yet either.
Currently, dyspraxia is being identified and picked up mostly between the ages of 7 and 10 because of the slowly-increasing awareness of the condition amongst professionals and parents. I was born in 1981, and that awareness didn’t exist in that era. People of my generation, and Barbara’s as well, didn’t have these labels available to them.
We don’t know how to deal with dyspraxia – and by “we”, I mean everyone, dyspraxic and neuro-typical alike. Many dyspraxics don’t know how to effectively manage their condition; we’re taught that we’re “special” or “different”, and that’s how many neuro-typical people treat us. People end up believing the publicity. I did, for a while – that I was different somehow – but refuse to any more. Neither does Barbara. We’re individuals.
When we were at our respective schools, we’d not heard of dyspraxia; we weren’t labelled with a “condition”. We just dealt with our issues as they came up, even when it was rough. We were never patronised for a condition that no-one knew we had. A common theme we’re seeing now is that dyspraxics are often being treated more like “special” cases. There are so many coping strategies put in place that we’re missing the bigger picture; dyspraxics and neuro-typicals need to collaborate; society needs to be adaptive to change and accept differences, and dyspraxics must speak up and fight in situations where awareness is limited, but learn as well about ways to adapt.
We’re at risk of breeding a victim culture, and that’s not on. The last thing I would have wanted to hear when I was a child was something along the lines of, “Oh dear, you’re dyspraxic. There, there, don’t worry; you can’t do that task or this job. We’ll excuse you from it.” I don’t want to be treated like that, and I have experienced it occasionally; you can see the look in people’s eyes as they ratchet their expectations severely downwards after they learn you have dyspraxia.
What if you’re told that repeatedly? What if you’re told often enough that you will never be able to hold a pencil or a pen like a neuro-typical person, and so you’ll always need to use a special pen grip that you’ll need to carry round with you? What about being told that you’ll never be able to use a standard knife and fork, and so will have to always carry a special set whenever you go out anywhere for dinner?
I refuse to be treated like that. I don’t want to be singled out as special, unless I’ve earned it somehow, and I certainly haven’t done that – I’m no Shakespeare or Michaelangelo or Stephen King and, although I’ve had books published, I’m no writer of classics. I’m normal, I’m average … I’m human, and I will not allow myself to be treated like a “special” (in all the insulting, demeaning, revolting senses of the word) person. I can use a normal knife and fork, thank you very much, and I can even ride a bike – so sod off if you want to congratulate me on doing something unique or out of the ordinary. I just want a normal life, and I want others to see that normal is diverse.
It frightens me to think that, the earlier dyspraxia diagnoses happen these days, the more opportunities there are to create an industry based on making people different, and not in a good way. Let me be clear; I see two interpretations of the word different. There’s the derogatory – “Ugh, he’s different to the rest of us, he needs specialist equipment to be able to live” – and then there’s the complementary – “We’re all different, and we should celebrate that.” I’m different, Barbara’s different,we’re all different, and we should value those differences. Instead of trying to put people into little boxes, and believing that invisible disabilities such as dyspraxia always need to be kept separate but equal through “adaptive technologies”, we should be looking at a societal change that accepts neuro-diversity as normal.
We’re only going to get that change, however, if we help each other raise aspirations. We need to allow individuals to see that their ambitions are undoubtedly more refined than they could possibly imagine; instead of pushing a disabled person down into a box labelled “dyspraxic”, why aren’t we saying, “What do you want to do? How can we help you get there?” Why are a disabled person’s dreams and ambitions not as recognised and valid as a non-disabled person’s?
That’s the reason Barbara and I set up The Two Dyspraxics in 2011 in the first place. We weren’t willing to sit back and allow this attitude to continue; we wanted to help, encourage, and foster people’s ambitions. We wanted to share our stories and discuss coping strategies that, A) actually worked and, B) allowed us to do what we want to do.
We’ve set up a Youtube channel, with “talking head” recordings on anything and everything that affects real life, and how we deal with issues. We’re also on Facebook (actually, we’re on Facebook twice, but that’s another story), and we’re very passionate; we also have a lot of ambition. We’re keen to deliver Dyspraxia Awareness courses as well as a multitude of other ideas – advocacy, literature on the subject, and more – as we go.
We set T2D up for another reason as well. We want to be a positive group for change and awareness-raising. There are groups we’ve encountered which don’t, sadly, seem to get it. It’s very depressing when you realise you’re being talked down to by a group that’s been set up ostensibly to help you; oftentimes, it’s because it’s got a skewed focus (it wants to raise money to continue its existence, and that becomes a cyclical method of existence) or it ends up being run by non-experts. In this instance, non-experts means people who don’t actually have the condition; experts by experience. I’m an expert by experience; I’m certainly not a scientist or a doctor or a psychologist, and the knowledge they have is vast and awe-inspiring, but I’ve got knowledge that a neuro-typical person doesn’t have. I have dyspraxia, and I live with it every day. Expertise is more than scientific studies and letters after your name; it’s knowing what the condition means to you on a personal level, and what it means to live with it every day.
My passion for this subject is matched by Barbara’s,a shared and belief in standing up and raising these issues, no matter how uncomfortable they might be. We thoroughly enjoy being The Two Dyspraxics; there’s a streak of rebelliousness and humour that runs through us which, I hope, comes through in our discussions; the fact that there’s a Youtube channel dedicated entirely to our outtakes is surely testament to that.
We want to put dyspraxia front and centre, and show just what dyspraxics can do – which is everything and anything that a neurotypical person can do.