Charting the Rich History of Dyslexia Advocacy

A new website from Oxford University sheds light on the organizations and individuals that moved the needle on societal understanding.
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I have been dyslexic my whole life, and a historian for 20 years. Though these two experiences are fundamental to my identity, I had never paused to consider what the history of dyslexia might reveal when studied by experts until I learned about The History of Dyslexia this summer.

The History of Dyslexia, unveiled in July, is a website that aims to make the fruits of about 140 years of dyslexia research available to the public. Although the condition is likely ancient, the site explores the ways our understanding and concern about dyslexia intertwines with the history of modern literacy.

It’s a joint project of an interdisciplinary group of four professors at Oxford University, who specialize in history, psychology, and education policy. So far, their project features a timeline of key events, a collection of oral interviews, and an online archive containing documents, photographs, and oral histories. Over the next few years, the researchers intend to generate a collection of primary and secondary materials that explore the science of the condition, the politics around government response to growing understanding of the condition, and the everyday experiences of people with dyslexia.

The core of the site will be a large archive of written documents and oral histories intended to support scholarly inquiry into the ways that people experienced and understood dyslexia in different historical periods. “We’re interested in [dyslexia’s] development in science, civil society, and policy—from its first diagnosis by physicians in the late 19th century, to its present widespread and hard fought recognition in U.K. education,” the homepage reads.

To learn more about the project, Pacific Standard exchanged emails with Philip Kirby, a researcher with the website and professor at Oxford, a few days after it went live. We discussed the genesis of the website, the associated researchers’ long-term aims, and their findings so far.

How did this project get started?

The project started properly last November, when we were awarded funding by the University of Oxford and Wellcome Trust. But Maggie Snowling—a professor of psychology at Oxford whose work has focused on dyslexia and related issues—had been interested in charting a history of dyslexia for some time. Maggie, with Steve Chinn, an educationalist and founder of a specialist school for children with dyslexia, conducted some of the earliest interviews for the project in 2013.

How did you get involved?

I did a Ph.D. in political geography, then a postdoc at [the University of] Exeter, looking at how children understand war through popular culture. Then I shifted to education at the Sutton Trust, analyzing various policies—mainly around secondary academies, private tuition, and vocational education—with a view to improving the prospects of disadvantaged [or] economically poorer pupils.

And then you joined up here?

The project looked really interesting, charting the history of this specific learning difficulty, which many of us encounter in our everyday lives. My brother is quite dyslexic, as are many of my friends. Most people seem to either know someone with dyslexia, or have dyslexia themselves.

What have you done so far and what comes next?

We’ve been building the U.K. Dyslexia Archive, the first repository of its kind, which contains a range of materials, including major scientific papers and classic books, records from key centers—[for example] the Word Blind Centre—biographies of key figures, and education policy documents.

Alongside these, we’re conducting oral histories with key figures in the field, many of whom are either retired or retiring. These are some of the pioneers of dyslexia research and provision, who worked during the 1960s and onward when dyslexia first began—gradually—to be recognized in the United Kingdom. They include people like Elaine Miles, who undertook some of the earliest work on the condition at Bangor University with her husband, Professor Tim Miles; and Helen Arkell, who founded one of the first dyslexia organizations in the U.K.—the eponymous Helen Arkell Dyslexia Centre. We’ve collected about 20 oral histories so far.

What’s one oral history in particular that’s been especially revealing?

The Baroness Warnock excerpt on the website. She was in charge of a landmark report on special educational needs in 1978, but was pressured by the then-Department for Education—at the time called the Department of Education and Science—not to suggest that there was a special category of learning difficulty called dyslexia.

I’m speculating, but presumably that’s because they didn’t want the enormous and expensive task of helping people with dyslexia. By then there was plenty of evidence suggesting it was a problem.

What have you found about dyslexia’s history so far?

The notion of “disability” changes over time. By definition, dyslexia, insofar as it affects the ability to read and write, could only exist once literacy was a commonplace necessity in society. That’s one of the reasons why we first see mention of the condition—usually [called] “word blindness”—in the late 19th century. Before that, it was much less of a problem. This perspective on disability—how society disables, as it were—is something that disability studies has pioneered.

In the case of dyslexia, it’s also important to chart its history so that we can highlight how particular individuals and organizations were able to achieve widespread recognition for this specific learning difficulty. Their work has often gone unheralded, but they did much to get dyslexia where it is today—widely recognized across society, with rights for persons with dyslexia protected in legislation.

What’s one new finding that’s emerged from the work?

One of the things that’s been really interesting has been the importance of women, who have been crucial across many aspects of dyslexia’s history—as psychologists researching the condition, as specialist teachers working with dyslexic children and as founders [and] leaders of specialist schools and organizations. Many of them were inspired to start working in the field because either they, or more often their children, had dyslexia. Alongside their male colleagues, much of the progress in getting dyslexia recognized has been based on a kind of nexus of emotional engagement and care, which it’s been fascinating to document.

What should people who are dyslexic or closely connected to someone who is dyslexic take away from this project? What’s the link between the history and modern advocacy?

Despite the progress made by the pioneers, it’s important not to think that advocacy work is finished. Recent government retrenchment in the area of special educational needs shows that, even when battles for recognition and provision are won, they’re not necessarily won for all time.

One of the historical strands the project will be tracing is the notion of dyslexia as a “myth,” which has been around for some time and periodically comes to prominence. There are legitimate debates about where to draw definitional lines around “disabilities” like dyslexia, of course, but there’s also a danger that these debates, taken out of context, are used to suggest that they don’t exist, or don’t deserve funding.

A key aim of the project will be to highlight these histories, engaging with policymakers to guard against losing any of the hard-fought gains of the dyslexia pioneers in our history.

This interview has been edited for length and clarity.

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