When I wrote the post, I was angry at being met with such hostility and frustrated that they’d wasted an opportunity to increase understanding, so my tone was scathing. This was a few days before I enabled comments on my blog, and I wasn’t expecting any response to the post. I just wanted to share my experience and explain why refusing to communicate undermines the point of an awareness-raising exercise.
I was absolutely delighted when several people with dyscalculia got in touch with me to explain more about this learning disability. Alexa Raisbeck emailed me to explain that the reason questions are hard to answer is that there are still no clear answers on what dyscalculia really is. She explained:
The current view is that damage to the interparatial sulcus in the brain causes dyscalculia - this means that numbers have no meaning, there is no feeling for the 'threeness' of three if you like. The same applies for time and distance; gauging these things is incredibly difficult with someone with dyscalculia - this can manifest as something quite simple such as having difficulty crossing the road as you are unable to gauge the traffic or being consistently late or early for appointments as you cannot gauge how long your journey takes.
Alexa thanks the Dyscalculia Forum for helping her realise that her problems had a name, in a world where hardly anybody had heard of dyscalculia.
The doubt and unacceptance of my problems during this time were something I had to face, along with the sniggering of cashiers when I was unable to calculate the correct change to give them in a shop. My inability to balance my bank accounts also had got me into bad debt and still the world told me I did not have a problem.
If I had not found the forum I am not sure that I would be currently undertaking research with UCL on the subject, helping distribute tests for another high profile academic to help with the standardization of an adult diagnostic method, helping people who come to the forum help on how to obtain an assessment, lobbying my MP, putting on an art exhibition in London to raise the profile of neurodiversity, going to trade union events to help raise the profile amongst employers and amongst other things.
I’ve briefly blogged about the art exhibition, which takes place next week.
Another person living with dyscalculia contacted me to say she loved my blog post but wanted to defend the Dyscalculia Forum. Kathryn Hopson from Australia reminded me that the people on the forum are doing their outreach work in their spare time, on a voluntary basis, while trying to deal with everything else that life throws at them.
Kathryn is a gifted musician who walked away from a promising career as an opera singer because she couldn’t read music. She was unofficially tested for dyscalculia by a professor at Queensland University and believes she is “the first and only mature-aged lady to ever be tested in Australia”. The same professor helped her publish her book about living with dyscalculia: How to yodel standing on your head in a toilet: It's as easy as living in a world without numbers.
Kathryn is now a teaching assistant and wrote the book in the hope that it would help some teachers to identify dyscalculic pupils. One mother who read it wrote to her saying that the book has improved her relationship with her dyscalculic daughter.
In her spare time, Kathryn frequents the Dyscalculia Forum, introducing herself to new people and offering support.
I was touched that two people with dyscalculia had taken the trouble to email me and share their stories, especially since my original blog post was so harshly worded. They prompted me to start hosting comments on my blog, and the first comment I got was from a third dyscalculic person, again a member of the forum who wanted to give me more information about dyscalculia.
My scathing words were about the Dyscalculia Forum as an organisation and its aggressive, counterproductive behaviour on Twitter. But the people who contacted me have reminded me that sometimes our view of an organisation is partial, based on an individual’s choices rather than on organisational choices. (My post about customer service makes the point that it’s usually the other way round, but that’s by the by.)
The Dyscalculia Forum is more than the people who were rude to me on one day back in March. It’s also made up of amazing people like Alexa, Kathryn and Addy, who are trying to support other people with dyscalculia while living with the condition themselves. I want to thank them for getting in touch with me, for being friendly and helpful and keen to explain. It would have been easy to respond to my criticism with aggression, but all three of them chose not to. Thank you.
Edited shortly after posting to add this note: Alexa has been in touch asking me to make it clear that her involvement in research at UCL is as a research subject. She is not conducting the research herself.