You probably didn’t realise it, but today is International Dyscalculia Day. You may not be sure what dyscalculia is; well, that’s the whole point of having a day about it. Dyscalculia Day is a grassroots effort organised by ordinary dyscalculia sufferers to raise awareness of this learning disability.
You see, according to the Dyscalculia Forum, 4-6% of the population are dyscalculic, but most people have never heard of it, which means that most dyscalculic people aren’t getting the support they need. So it’s a great idea to organise an awareness-raising day, asking people to spread the word on Twitter and Facebook.
The Dyscalculia Forum has been active all day on Twitter, spreading the word that this is a real learning disability. They also have a page of downloadable avatars and signature banners. So far, so good.
But awareness-raising is about more than shouting the name of your issue and asking other people to shout about it too. Real awareness-raising is about explaining what your issue actually is and showing people affected where to get support.
The Dyscalculia Forum has a page of dyscalculia symptoms (which they say are taken from dyscalculia.org). When I saw people tweeting about Dyscalculia Day, I took a look at the list to find out more and was astonished to find that I could tick at least seven items on an 11-item list. Could I have this mysterious learning disability that I only found out about today? Thank goodness for awareness-raising social media happenings!
Then reality kicked in. The “symptoms” on the list included
poor athletic coordination, difficulty keeping up with rapidly changing physical directions like in aerobic, dance, and exercise classes
Inability to grasp and remember math concepts, rules, formulas, sequence (order of operations), and basic addition, subtraction, multiplication and division facts.
This list of “symptoms” could apply to an awful lot of people. Does that mean they’re all undiagonised dyscalculics? I tweeted: “Almost everyone I know could tick most of this list. Is it really a learning disability?"
The Dyscalculia Forum responded: “It is! Medically approved and everything, by WHO and DSM-IV.” Right, I said, but how can it be a learning disability when the majority of people have it? They corrected me, pointing out that it’s only 3.6%-6.5% of the population.
At this point I was getting confused. Were these “symptoms” (which included persistent lateness and inability to do sums) really so rare? I asked my Twitter friends if any of them could look through the list of “symptoms” and NOT tick six or more.Then I explained to the Dyscalculia Forum that their list of symptoms made it look like a very common problem.
They replied here, here and here: “Symptoms list are [sic] great for getting the hypocondriac [sic] out in everyone. You know you're dyscalculic when you're an adult who has trouble reading a clock, or you're directly terrified of handling money, or spend 10 times the energy on what other people don't even think about. A symptoms list is not a "diagnostic kit" - it's an indicator of maybe getting tested properly.”
In other words, the symptoms list is designed to make as many people as possible wonder if they might be dyscalculic, in order to encourage as many people as possible to get tested. I don’t have too much of a quarrel with that, although a) if such a strategy is very successful it wastes a lot of people’s time and b) if they really wanted it to take off they should have put “tiredness and bloating” in there too.
But if you are one of the many, many people who can tick lots of items on that list, what happens next? The symptoms page has no advice on what to do, not even a suggestion that you get tested (which might not occur to you if you think the list of symptoms is the test). I searched the site thinking I would find a page called something like “What to do if you think you have dyscalculia”, but drew a complete blank. So I made a couple of suggestions to the Dyscalculia Forum on Twitter. "I wonder if the symptoms list could be made more reflective of what dyscalculia really is/feels like? “The list [of symptoms] will make maybe 80-90% of people think "I might have it" and then there's no info about what to do next!”
I don’t know quite what I was expecting here, but it was probably something along the lines of “Thanks for your feedback”. I certainly wasn’t expecting what I got. The Dyscalculia Forum immediately blocked me on Twitter, ending all discussion. For non-Twitter types, I should explain that blocking is the online equivalent of slamming a door in someone’s face.
I was pretty cheesed off at this. What’s the point of carrying out an awareness-raising exercise if you refuse to engage with people who show interest? The point was supposedly to let people know what dyscalculia is and encourage them to “get tested” - but the Dyscalculia Forum failed on both counts, then threw its toys out of the pram when I pointed this out politely. My friends on Twitter saw what was happening and spoke out in my defence.
“Tweets like that is excactly [sic] why @dyscalculic blocked you. You have no idea what dyscalculia is. Don't ask what it is when all you're going to do is ignore what is said and draw your own conclusions. It's passive agressive [sic], and a waste of time.”
You know what I think is a waste of time? Spending an entire day trying to “raise awareness” of something you refuse to explain. But I still wasn’t after a fight. I just asked Mette which tweet of mine she was talking about. She didn’t answer. And I’m passive-aggressive?
It’s true that I have only a vague idea of what dyscalculia is. That’s why I was asking. It’s also true that I wanted information in order to draw my own conclusions. But it’s completely untrue that I would ever ignore what people said to me in answer to my own question.
My own experience of working (paid and unpaid) for non-profits makes me inclined to sympathy for the Dyscalculia Forum. As an overstretched worker, you end up shelving a lot of brilliant plans because there isn’t the time or money to take them on, then people criticise your work and you think “Don’t you realise this is the best we could manage with the resources available?” But I’ve always used that criticism as an opportunity to explain and educate.“Thanks for your suggestion, but we’re a small community newspaper and we don’t have any full-time staff...” “Sorry to hear that, but we’re not responsible for collecting your rubbish. You can ring the council on...”
It’s hard not to feel defensive, but insulting people who make suggestions or ask questions is counterproductive behaviour on an awareness-raising exercise.
Oh, and I still have no idea what dyscalculia is. I now know that it’s colloquially known as “math dyslexia” and described as a difficulty with learning maths, but I also know that saying you think you might have it because you’re bad at maths is “the most annoying statement” you can make. I also know you should “go out and get tested” but the Dyscalculia Centre’s page about testing warns that testing is expensive and may not help you. (The Dyscalculia Forum, as I mentioned before, doesn’t have a page about testing at all.) Yes, I’m sure there are other resources out there, but I don’t really feel like searching for them after today’s internet slapdowns.
The Dyscalculia Forum’s social network activity has introduced many people to a new word, but I doubt very much whether it’s helped anyone understand the concept or reached out to any undiagnosed sufferers. An opportunity to increase understanding and dispel myths has been completely wasted.