Sorry for Existing

I wrote an email to a luminary in the science of reading yesterday. He’s a big shot – he’s led school systems and government panels on reading and advised more than one president. He’s got lots of letters after his name. He writes a blog where he reviews the literature and discusses what it means for teachers of reading. I find his analysis really interesting and useful, and I’ll keep reading it. His blogs make it clear he responds to correspondence and comments, so I sent him a note.

In my note I described my interest in seeing dyslexia as a public health issue, and my frustration that – unlike childhood diagnoses like lead poisoning, scoliosis, or anxiety – there is no clear standard of care for parents and providers to refer to. There is a vague “Orton-Gillingham” or “Structured Literacy” recommendation, but then parents are thrown to the wolves. I mentioned my career change from public health and that I am dyslexic and the mom of a person with dyslexia. I asked for any guidance he might have on clarifying a standard of care and communicating it to parents.

He responded overnight. He must work late, and it was thoughtful and kind of him to respond. In his kindness, though, he displayed WTF-level obtuseness (obtusity? Is that a word?) about life with dyslexia.

Here is what he responded:

 “I do know that at least in some schools teachers feel harassed by parents trying to get their kids classified as learning disabled in the hopes of gaining some kind of government payments. I must admit I’ve never really understood how any of that works, or whether those teachers’ claims have any validity. In any event, I lack expertise in those elements of the process. Good luck.”

And this, folks, is why dyslexia is traumatic. A kind, illustrious expert in the science of reading – someone guiding and influencing teachers today, is so incurious about dyslexia that he doesn’t know how families access services. He also has the lack of insight to tell a dyslexic person their needs are a burden to teachers. Oh, illustrious doctor – we know we are a burden. We know it from the moment we step foot in a classroom, and we never forget it. Our shame burns a hole deep into our psyches that never quite heals.

To the good doctor: there are no “government payments” for being dyslexic. There are only desperate parents who have three options: press (harass) the school to provide the services their kid needs, pay thousands of dollars a year for private tutoring, or let their kid fail to learn to read well enough to succeed in school. Them’s the options. Pick one.

This may be the first time in my life that I’ve craved expertise beyond my own and found…nothing. No mentor, no instructor, no guide. I have a mountain to learn when it comes to how the brain learns to read, and how to translate that into best practice for instruction. Happily I’ve got fabulous teachers and mentors for that. But for this intersection of public health, reading, school systems, and the hellscape that is health insurance? Nothing.

I’m all alone and mad as hell.