Monday, 3 September 2012

Why the positives will always champion the negatives

Director, Ana, talks us through the positives and downfalls of her dyscalculia syndrome and explains why she feels it's more fascinating to see what a brain can do, and not what it cannot.

 The TOTKO journey has always been a personal one, as well as a business one, for me.  

I started the organisation off the back of my own experiences of discrimination in the work place and in recruitment agencies and took it upon myself to turn my bad experience in to something good.  

Despite being multifaceted, the main thing that defines TOTKO for me has always been the people within it.  It is and always must be about peer based support.  Nobody knows more about dyslexia than another dyslexic person.  Nobody knows more about autism than another autistic person.  Nobody knows more about dyspraxia than... Yeah, we'll you're getting the idea now.

 It had to be all about people with these learning disabilities, difficulties, differences, whatever it is you like to call them, helping others similar to them.  This meant meeting a lot of people and getting them on board from the start.  It meant enabling them to tell their stories through video and written word.  The researcher in me was fascinated by studying how their brains worked and I found myself marvelling at the way an autistic mind could see the world so different from an non autistic mind.  I wanted to test out the theories that learning disabled minds were in fact quicker than non learning disabled minds.  And recently, as I have been coordinating the creation of our disability fact sheets, I have found myself dissecting a brain that is all too familiar to me.  My own.

 The disability fact sheets are in their simplest terms, introductions to the various conditions we represent.  If your son is diagnosed dyslexic and you are overwhelmed with information.  We've got a fact sheet for you.  If you are 29 and just found out you have ADHD and have no idea what's going on. We have a fact sheet for you.  And yes, you guessed it, they are all written by people with the corresponding conditions.  Who else would we let write them!?

So when it came to writing a fact sheet on dyscalculia syndrome (my own personal stomping ground) it seemed only natural I would put pen to paper.

 Dissecting  and explaining my own brain was bizarre.  I've always had this natural curiosity in to what makes my brain different.  I've always wanted to answer the questions that nobody else would ever tell me answers to.  Like, why is it when I hear words, I don't hear syllables, I hear vibrations?  It's like I feel the words as little vibrations in my tongue, little clicks and the sound of my mouth moving.  It wouldn't be so important if not for every other person I've met with dyscalculia can do the same.  How!?  How are we all doing this and others cannot?

 And why is it when I meet with my marketer, Steph, another lovely dyscalculate mind, that we can solve problems together almost telepathically?  Are our brains really that similar that we need not talk about the issue we are solving, as we will inevitably reach the same answer and inevitably always agree.  Perhaps, this is why we work so well together.  We are quite literally, on the same wave length.

 But writing the dyscalculia fact sheet, obviously I had to write about how my dyscalculia affects me in bad ways.  So I wrote about the maths, obviously thats a big one.  5 becomes 9, and 4 becomes 6.  I will never get roman numerals.  And I'd rather use an abacus than a calculator.  It's as much to do with the concept of a number as it is reading or recognising a number.  If you say a number to me and I ask you to explain, saying it louder isn't going to solve the problem.  Why?  Because I'm not deaf.  I'm dyscalculate and you saying 22 over and over again does nothing for me.  Show me it in tally marks.  Show me 22 dots and let me count them.  Slowly...  Better yet, you write it down, say its 22, I will believe you, and we will call it a day..

Then there's the secondary stuff that people don't realise about me.  Like how appalling my balance is.  Learning to ride a bike is one of my biggest achievements!  If I stand still for long enough, I start to wobble.  I've never been good at sports.  I don't know left from right.  I got lost on a school orienteering trip once.  I can't work the washing machine because it's got too many dials and numbers on it.  I am hopeless with counting money (relax, TOTKO has an accountant!).  And yes, I really do struggle with counting to 100.  I miss numbers out, swap them around.  I do everything but insert letters from the alphabet.  It really is that hard for me.

But do you know what was even more fascinating to write about?  All the things a dyscalculate brain can do.  Like the relationship with words, and the scarily quick problem solving skills.  Seriously.  Please, someone hook me up to some sort of brain reading neurological device.  I have this overwhelming urge to know what is going on, because I'm telling you there's more to my dyscalculate brain than it's inability to count.  Dyslcalculate brains do things non-dyscalculate brains do not.  And if you don't believe me, maybe you should come sit in on a meeting with Steph and I, because I'm telling you its like something out of the Twilight Zone.  

This isn't just me anymore. It's everyone I have the honour of meeting with dyscalculia.  I meet them and have to stop myself staring at them in awe, because straight away I realise they are just like me, and then moments later, I want to see just how like me they are.  I want to ask if they feel the vibrations of words too!  

Peer based support is number one top dog here at TOTKO, but championing the positive over the negatives of disability has got to be a close second.  Who cares what people can't do if they can solve problems in seconds?  We should be empowering people with learning disabilties to take these compensatory skills and run with them.  Run as far as they want.  Become authors.  Doctors.  Artists.  Teachers.  Scientists.  Not trying to fix them and make them just like everyone  else.  We arent like everyone else.  Why on earth would anyone ever want to fix us?  We're not broken.  We simply think different.

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