Dyslexia: health, literacy and libraries

Session 11 (MC/MLA Update):  Margery Katz, MA, JD; Julie A. Gocey, MD

I had the honor of attending this thought-provoking session on Sunday afternoon.  Dr. Gocey started things off by having everyone stand and then asking us to sit down as we responded “yes” to whether we knew an immediate family member affected by dyslexia, a classmate or friend, and finally anyone in our lives.  I was in the middle group, and of course, by the 3rd question, everyone was sitting down.

Some facts:

  • Dyslexia is a term for an unexpected difficulty learning to read (and relatedly, write and spell).
  • ~1 in 5 people have some level of dyslexia (from mild to severe).
  • MRIs show that people affected by dyslexia are unable to use certain key areas of the brain, but they also show neurobiological changes and improvements that can happen with educational treatment.
  • NICHD definition: deficit in phonological component of language, unexpected in relation to other cognitive abilities.
  • What dyslexia is not: reading backwards, a symptom of lower IQ, a life sentence of lower achievement.
  • Untreated dyslexia, however, can result in: poor reading comprehension, poor reading experiences, less vocabulary, and less background knowledge (that would normally be picked up from reading).
  • What is needed to help treat dyslexia is evidence-based reading instruction; often referred to as multi-sensory structured reading instruction.

Dr. Gocey and Margery Katz called on us to all work together, to support early detection, promote adult screening, provide equal access, and to coordinate support from clinics, hospitals, schools, and libraries.  They mentioned that physicians are not routinely trained to identify dyslexia, and that screening is not standardized.  In fact, the lack of access to (as well as insurance coverage for) testing is itself a barrier.  Two bills related to these issues were brought up to the state legislature, and while they both died, there was the positive fact that they got some coverage and conversations did start around the topic.

The results they presented on a librarian survey were perhaps not surprising, although one may have hoped otherwise: just like the general public, librarians show a disconnect in their knowledge of dyslexia.  In addition, most library resources dedicated to disabilities focus on “brick & mortar” problems like building ramps and providing resources for the blind.  This is certainly not a bad thing, but libraries and librarians are missing a big piece of the problem when they don’t address, in addition, reading disabilities (which is, perhaps, ironic).

I went to this session to learn more about a topic I knew little about, and I was not disappointed.  In fact, there was so much information, I wasn’t able to keep up in my notes!  Fortunately for both me and you, the wonderful slides have been posted.  Check them out for lots of links to great resources!

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