Meet Naomi Folb – Guest Poster today

I am honored to share Naomi Folb’s words with you today. She speaks with a ‘Dyslexic’s voice’ or perspective.  Who better to share information on dyslexia, than a dyslexic.  Naomi’s words will challenge your thoughts about dyslexia research and how much of a need there is for Dyslexia Awareness, research from a dyslexic’s point of view abroad and here in North America.

Naomi lectures in Empirical Enquiry, Critical Thinking and Applied Research Skills at INTO City University and the University of East Anglia. Alongside this post, she works as the editor-in-chief at RASP, a publishing company for dyslexic writers. She is currently working on a
collaborative research project in conjunction associates at the University of
Roehampton, researching the relationship between dyslexia and creative writing.

Please visit Naomi’s Blog: http://r-a-s-p.co.uk/blog/

Join Naomi on Facebook: https://www.facebook.com/dyslexicwriters  

Follow her on Twitter: @thedyslexicpoet

 

Why are we ‘excluding’ dyslexics from ‘inclusive’ research?

Being dyslexic means I see dyslexia in a different way to most: I see it as a difference rather than a deficit. This was the subject of my PhD, which revealed the ambiguity that “successful” dyslexic adults felt towards their dyslexia. On the one hand there was a sense that they could never really understand it or know what it was because it was ‘beyond words’ and on the other, it was something with which they had in their own ways learnt to understand, and grow affection toward.

Then there was the sense that they were not ‘completely’ dyslexic. That whilst they had the ability to see the whole, problem solve, and understand complex systems they also saw themselves as logical, linear thinkers. It was ‘duality’ that undermined their sense of ‘being dyslexic’ or ‘knowing’ dyslexia.

I had high hopes of writing my PhD up into a book. On completion of my thesis I sent off my book proposal to a number of publishers, one of who advised me they were not interested in books written for a ‘dyslexic audience’, which to me served to reveal the commonplace view that I’d set out to research: that dyslexics are not perceived as professionals.

This deep seated bias towards dyslexics does not appear to dealt with in any of the numerous books on the market, which purport to ‘remediate’, or ‘cure’ the dyslexic of their fearful condition. This might sound melodramatic, but it is not uncommon to hear dyslexia spoken about in the same sentence as ‘warning signs’. It is the ‘warning’ in this phrase that realises the cultural attitude of fear that we have towards difference.

Recently one journalist, Malcolm Gladwell, has attempted to approach dyslexia from a ‘difference’ perspective. His new book The unheard story of David and Goliath deems dyslexia as a ‘desirable difficulty’. Through this oxymoron Gladwell argues that what was once perceived a negative condition or ‘lack’ can actually be regarded as an ‘advantage’. This discussion appears to be on the basis that dyslexics who ‘compensate’ for their ‘inabilities’, ‘lack’, or ‘deficit’ have an edge over those who’ve never had to work hard to achieve. This is what we call ‘the compensation perspective’ – and it is one which is favoured by Logan’s study, on which Gladwell basis much of his hypothesis.

The problems with the compensation perspective have long been discussed by disability theorist, who object to the idea because of the way in which it assumes that the disabled people have an original ‘desire to be ‘normal’. For more on this I recommend Paul Hunt’s (1970) paper ‘A Critical Condition’.

This problem of conceptualisation is not what the non-dyslexic academic Mark Seidenberg assumes to be the shortcoming with Gladwell’s take. He argues that the problem with Gladwell’s theorisation lay in its characterisation, lack of evidence, representativeness of the subjects and plagiarism of the term ‘desirable difficulties’. He laments, that if readers take Gladwell’s conceptualisation of dyslexia seriously, there is a danger that it will breed the belief that dyslexia is something one can/will grow out of and the onus on getting dyslexics diagnosed will be diminished. He further argues this will or could have negative consequences on dyslexics. However, his argument holds the same flaw as Gladwell’s own: it lacks evidence.

I’m not disagreeing with Seidenberg that there is a neurological basis for dyslexia, it’s just that the relationship between psychological phenomena and brain activity is perceived complex rather than self evident. consequently, this approach only tells us that there are differences in neural activity, but it does not say anything about the way in which difference is experienced. Furthermore, I think that Seidenberg’s critique overlooks the possibility in there being differences in the way in which adults and children experience dyslexia, which is indicated by a study examining creativity in dyslexics.

Similar to Seidenberg I’m sceptical about retro-diagnosis. This phenomena within the dyslexia literature of diagnosing historical figures with dyslexia retrospectively, when there is scant and contradictory evidence to support the idea. But rather than making an untestable hypothesis against the likelihood of Gladwell’s participants dyslexia, I think it is more fruitful to look at the current issues that we face with diagnosis.

Firstly with the problems with both the diagnostic assessments currently available (discrepancy and pattern). Second with the lack of evidence that being identified young is in the dyslexics interest. I’m not against early diagnosis, it’s just my own research bought into question the resounding benefits of it, with many dyslexics indicating that their relationship to their diagnosis was far more ambiguous. Perhaps they were exceptions to the rule – just like Seidenberg perceives Gladwell’s subjects. Only he has no evidence to support this hypothesis. It’s the lack of evidence here that troubles me, because it highlights the general lack of research on this area.

In short Seidenberg argues Gladwell’s interpretation of dyslexia is reductive, both in terms of its characteristics and effect. I am not defending Gladwell. His position bothers me 1) because he cherry picks from the literature 2) because of the ‘compensation’ perspective he uses. The idea that you have ‘over achieving’ dyslexics begs the question: at what point does a dyslexic stop achieving and start over achieving?

Yet Gladwell is right to point out that dyslexics perceive their success to come ‘because’ and not ‘despite’ dyslexia. I’m pleased that Gladwell raised this point, even if some of what he says is misleading. But I think Seidenberg’s critique is equally misleading, as none of the studies that he draws has dyslexic adults as their subject. His perspective is very much grounded in knowledge of dyslexia in children in relation to reading. As such he does nothing to unseat the deep seated cultural bias towards dyslexics.

If dyslexics that ‘make it’ continue to be considered exceptions to the rule, is it any wonder dyslexic adults pertain so much ambiguity towards their diagnosis? Being ‘proud’ to be dyslexic does not remediate the lack of good, robust research that seeks to understand dyslexia in adults. We need a cultural shift in which dyslexia experts use research to back up their claims and hypothesis, and recognise that the real lack is in the research – and not the dyslexic.