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Category: Being dyslexic

Belonging in a dyslexic neurominority

I wrote a few months back about having my identity as a dyslexic debated in the Guardian. Pretty soon after that the Telegraph joined in the dyslexia denalism party. I don’t care to name the writer, but you can see what I said to them on Twitter, and how they replied about the idea of speaking with actual dyslexic people about dyslexia.

As someone with a science background and who has met real academics, it is really bizarre to me that journalists continue to confuse the messy science of dyslexia and academics having arguments as “news” worth writing about.

For the people in the back: anyone writing to deny the existence of dyslexia harms dyslexic people. Writing of this kind takes from us the ability to understand ourselves as dyslexic, and to be understood by others as dyslexic.

The truth about dyslexia is that it isn’t really about reading. This is I suspect a surprise to just about everyone except those of us who are actually dyslexic, and our close family and friends. Our big secret is that it’s actually a great deal more than that.

And the joy of this is that the way we think can connect us as dyslexic people.

Ann 🦉

On the complex presentation of dyslexia and iron deficiency anaemia

Greetings folks. Long time no blog post due to losing spoons to whatever it is I’m allergic to that is causing migraines. I strongly suspect fungal spores. Anyhow, my brain fog has been a little bit worse than usual and work has been busy, so I’ve been away for a bit.

I really wanted to write about the brain fog some folks with long covid are experiencing, but when I started writing today I realised there was a shorter story I wanted to tell first, which is what happened to me during the time I became iron deficient and developed anaemia.

The TL;DR summary is that is was the most disabled I have ever felt in my life as a dyslexic.

By the time I saw my GP and she told me my full blood count was “a bit on the low side”, I had been anaemic and undiagnosed for several months and I was very worried about my ability to do my job due to the compounding effects of fatigue and being dyslexic.

There had been an entire afternoon at work where I had sat in a daze and really managed to mangle a text I was editing, inserting errors that I just didn’t notice. My normal dyslexic experience is that I have a pretty good idea of the errors I’m likely to make when editing even if I don’t see them at the time, so it was very scary to me that my problems could get so much worse and that I couldn’t perceive this fully. This was also towards the start of my first job outside of academia and although I had an understanding manager I believe I was extremely lucky to have already passed my probation period when this incident occurred.

So yeah, while I might have only been “a bit” anaemic, I felt extremely unwell. I think my doctor partially understood this, because she did sign me off work for two weeks. I slept for almost four days straight and started taking iron tablets. I did not feel completely better until not only my haemoglobin but also my ferritin (a protein that stores iron) levels were back within a normal range, and this took several months.

To conclude today: this is my brief story of what I’m going to call medical under-understanding by a doctor regarding the interaction between fatigue and neurological symptoms and their real-world consequences. They are entangled.

I’m not quite good enough at medical lingo to be fully sure if the title of the blog works like I’m intending, which is to comment that given the prevalence of both dyslexia and iron deficiency anaemia I suspect they often occur together. Because of this, I hope that what I’ve written here gives some idea as to why being anaemic was much scarier for me as a dyslexic than I think my doctor realized. I had a much greater possibility of worse health outcomes because of the compounding interactions.

Tomorrow, I’m hoping to write my blog on brain fog and long covid. If it’s not tomorrow, it will be over the Christmas holidays.

Ann 🦉

Small demons

My dyslexia demons are small but persistent. They are not mighty because of their size but because of their number. They are agile in the truest sense, never missing an opportunity.

They are the spelling errors and the typos that I cannot see in my writing. They are suddenly needing to know right from left. They are needing to type “yes” and “no” into tiny little boxes on a website in an order that matters.

They are the anxious thoughts of all of these small things happening many times over.

I had a bad day this week. I was completely defeated by my demons. I think the worst thing was that they were the kind that exist only in my head but insist they will become real. Believe me, it was awful.

Mostly, though, I have good days. My demons are still there but they’re just pesky and I can corral them a bunch of soot sprites. You wouldn’t notice them unless you knew what you were looking for.

Things I have spilled, tripped into, and fallen off, a list

Age 5. The actual brick wall of my school, while playing the game “witchy witchy”. I receive a head injury but the school’s first aider, my Dad, judges his child to essentially be fine following this lunchtime incident as there is not much bleeding. A family trip to the hospital ensues that evening upon my Mum’s instistence. The doctors roll me up in a blanket and pour hydrogen peroxide into the wound on my forehead to bubble out all of the little bits of brick that got stuck in there.

Age 11. The just-out-of the microwave tinned tomato soup, which hit the dining room’s cream painted woodchip wallpaper leaving a very slight stain for years to come despite my Mum’s best efforts.

Age 12. The stage at my junior woodwind band’s Christmas concert. Teachers concernedly rush to ask if my clarinet is ok. Both me and it are ok, and people are very kind to me after the concert.

Age 15+. Tea and coffee, on carpets and floors everywhere. (Beige is the only acceptable flooring colour.)

Age 18+. Pints of beer, and wonky pub tables upon which those pints of beer precariously rest within my prescence.

Age 19. My bike, three times within the first term I start riding it around Oxford. I start to always wear gloves when riding.

Age 26. The badly chosen walk down the surprisingly steep actual ski slope overlooking Lake Bohinj while holidaying in Slovenia. My friend notes on this hellish trip that I routinely trip over my own feet on flat pavements. I concur.

Age 30. The barbell set-up for deadlifting, and pretty much everything else at shin height in the gym. Shin bruises just become a thing, despite my best efforts at good technique.

Age 31. The (glass!) light fittings that dangle from the ceiling in the hallway and bathroom of my boyfriend’s flat.

Also age 31. My boyfriend :'( It’s ok. We talk about this a lot and have strategies for how to deal with road crossing, spiky bushes over hanging the pavement, and bodies of water close to where we’re walking. (I walk on the side of the water.)

Age 33. Tea and coffee on the carpet and floor of my boyfriend’s flat.

Upon having my identity as a dyslexic “debated” in the Grauniad

My name’s Ann, and I’m a 33 year old dyslexic woman. Because of COVID-19, I’ve decided to be a 33 year old dyslexic woman on the Internet writing things much more often. This past week the Guardian published a long read article by writer Sirin Kale called “The battle over dyslexia“, and I have some things to say about it as it pertains to me, an adult dyslexic person.

To summarise, the general gist of Kale’s article is that there’s a scientific battle raging as to whether dyslexia is even a thing. Her argument hinges on disagreements between notable academic educational psychologists, specifically on their having differing views on how to solve the complex problem of how local authorities provide support for children struggling to read within the social and political context of the UK. I’m not a parent and I’m not involved in the world of SEND, so this blog isn’t about addressing the specifics of this argument. However, before I write more, I want to sincerely extend my compassion to the parents of all children struggling to read and access education, dyslexic or not. Our education system shouldn’t be failing anyone, but fighting about dyslexia isn’t how we solve this problem and Nancy Doyle has already responded about this on LinkedIn.

What I do want to address in this blog is the whole “dyslexia, is it even a thing?” being published in a publication of the standing of the Guardian, and having the argument underpinning this assertion be based solely on how dyslexia manifests in childhood. Questioning whether dyslexia is really a thing at all is a major take-home of Kale’s article, and I think this is clear from many of the responses on social media. As such, I think Kale’s writing is actively harmful to dyslexic people of all ages and all backgrounds because in questioning dyslexia she is taking from us the ability to describe ourselves to other people and be understood. She is, in particular, taking from adult dyslexics the ability to be understood as a dyslexic adult. This is an injustice to us as knowers of our own lived dyslexic experience.

To the best of my knowledge, the only actual dyslexic Kale spoke to in the year she took to carefully research and write her article was Lord Addington who is quoted as saying:

“If you’re telling me that dyslexia doesn’t really exist, I’m afraid my everyday experience of life says you’re wrong.”

Lord Addington, quoted in Kale’s article

I’ve never met Lord Addington, and given that I’m not a hereditary peer I have a pretty different background and life experiences, but I for sure feel him on the lived experience of being dyslexic.

Being dyslexic isn’t all of me, but it is in every part of me and it affects all of my lived experiences. It is literally all about the way I am able to think. It is intimately connected with my relationship with my family because it’s exceedingly likely that I inherited it. It has had a role in absolutely everything I’ve ever done, from my childhood right up to being 33 years old today.

And so you might see why I don’t appreciate having my identity “debated” in a national newspaper. Quite aside from badly misrepresenting current science, it’s just not cool to write an article for a whole year about dyslexia and largely fail to talk to adult dyslexic people about their lived experiences of being dyslexic. Lord Addington is only really quoted in his professional capacity as a politician and advocate, and his lived experiences aren’t explored; as far as I’m able to tell, everyone else quoted is a professional working in education or a parent of a dyslexic child. Kale needed to hear the voices of many more actually dyslexic adults to learn about the dyslexic experience, which extends far beyond that of learning to read.

Almost every adult dyslexic to whom I’ve spoken openly about the marginalizing effects of dyslexia has a story about the time they failed in school and a story about the time they failed in a job. These stories are, for better or worse, part of the culture of being an adult dyslexic. My own stories of failing in education and in paid work are, frankly, not low stakes tales; and this is despite my very significant race, class, and educational privilege. Like Kale, I’m a graduate of the University of Oxford, and I’m lucky to have many positive stories about achieving educational and career success, but not every dyslexic has these. My own difficulties did not stop when I learned to read, they happen every day and especially every time I learn something new. They’re happening as I write this and organise my thoughts. I sure hope that the next person at my work I need to explain my dyslexic struggles to hasn’t read Kale’s article, because if they have I think they’re much less likely to be sympathetic to me.

Kale’s article misses all the truly good and joyful parts of the dyslexic experience too. The other part of dyslexic culture is in fact just culture in general and especially visual culture and technology, because without dyslexic thinking connecting the seemingly unconnected there isn’t progress. We might not be the super greatest at the reading or the short term remembering but we’re here for a very good evolutionary reason. On the scale of human history reading happened incredibly recently, and differently thinking neurodiverse brains are a human survival tactic. I could reel off a great long list of famously successful dyslexics here, but perhaps a more grounded testament to this is that Kale’s article ended-up on the front page of Hackernews (a notable or notorious depending on who you ask tech news aggregator) and has 74 comments at the time of writing. This is a pretty high level of engagement, and speaks to so many folks working in tech and start-ups because they’re dyslexic. We have a pretty unenviable collection of wicked problems to solve in the next ten years or so if Earth is to remain habitable, and we need everyone to be able to contribute to solving these problems. We won’t solve them without the contributions of dyslexic people.

So, to conclude. The year is 2020. Writing about a group of marginalized people without having really spoken to or listened to those people shows you’re not reading the room, and your writing is likely to do real harm to those people. The science of dyslexia is not in the state it was 44 years ago in 1976. Dyslexic people are real, dyslexic children become dyslexic adults, and our lived experiences as adults go far beyond our experiences of learning to read. Our stories deserve to be heard and understood.

Ann 🦉

This blog is dedicated to anyone who has ever had their identity questioned or erased by writers in the Guardian, I hear you and I see you 💖.

Featured image of a squid swimming slowly via the Creative Commons.