Dyslexia, Openness, and Creating Change

You might have noticed that I am VERY open about being dyslexic...I have a website, YouTube Channel, Facebook page, and twitter account, which are about dyslexia. I've edited a book full of the work of dyslexic authors, including a poem by Sally Gardner, and I regularly review audiobooks for The Codpast, a dyslexic-centric podcast. I'm leaving some pretty big internet footprints, including on LinkedIn, so it's tied to my professional life, as well.

I wasn't always this open about it, and willing to let the world know that dyslexia is a part of who I am. There is still a lot of stigma and misunderstanding about dyslexia, concerns about what peers, or employers might think. In my teens I was really worried about other students finding out I was dyslexic and saying insensitive things about it. I wanted to be like everyone else, and to just blend in.

Gradually, I began to feel more confident in myself, and I wanted to find out more about how my dyslexia affected me, and what I could do to help myself deal with my difficulties. I read my first dyslexia assessment, and looked up information online, I bought books recommended by the educational psychologist I had seen. I was really shocked to find despite increased awareness about dyslexia that large numbers of dyslexic people were still ending up in the prison system, it wasn't a mandatory part of teacher training, and if you didn't have a parent who was informed enough to fight for your right to an education, you were unlikely to get any support at all.

There are huge injustices related to dyslexia, and what are relatively minor difficulties and differences. That these remain is due to a lack of willingness to make relatively minor changes to the education system, and to an unwillingness within society to fully come to terms with what dyslexia means for real people, because it challenges preconceptions about the nature of intelligence.

Me, as a little girl in my school uniform.
I used to be embarrassed by my front teeth,
so I used to try to hide them when I smiled.

People acted like they couldn't see us, and issues affecting us and our families were not priorities. I wanted to be seen, listened to. I didn't want any other child to have the negative school experiences I did growing up. When I was very little I used to wonder why with so many influential and successful dyslexics children like me were still not being properly supported, suffering emotionally, as well as not being properly educated. I used to wonder why those celebrities weren't doing more, weren't screaming about what a travesty it was on the television, or doing anything visible to me to change things. I decided if I ever got any sort of influence or did well I was going to do whatever I could to make things better. I wanted to be part of the solution.

Getting older, I realised it was unlikely I'd ever be a big house hold name, and I can't say it's something I aspire to, but I could still take steps towards making things better for others like myself, and for future generations. I became a member of the BDA, although none of the information I received seemed geared towards me (a 17 year old dyslexic), but mainly for parents of little kids, or professionals working in the industry, I wanted to support what they were doing. I volunteered to support kids with special needs as a mentor at my school, and later I began trying to support people via the being dyslexic forums, where I am now a moderator. I did this in my free time all through University.

The lack of provision or conversation about dyslexic teenagers and adults troubled me. I came up with the idea for some sort of online magazine for teens, or students. Over time this idea developed into Dysbooks, as I realised there was also support missing regarding helping dyslexic people enjoy literature, yet a glut of organisations and individuals selling support with acquiring literacy - No one was following through to the next stage, as if once we could read, that was the end of the story. There was very little celebrating achievements with literature, and little supporting parents, or teacher regarding the best books for them, or for dyslexic kids. Being a dyslexic bookworm with an English degree, and working at the time as a Bookseller, I felt I was well placed to produce much needed information, and to highlight great information or projects by others in one place.

I decided in my daily life, while I wasn't going to pin a badge to my chest and declare it to everyone I met, I was not going to keep dyslexia my dirty little secret, or cover up the work I was doing trying to help dyslexic people, as if it was shameful, or should reflect on me badly. If I didn't want it to feel shameful, and for people to know what dyslexia and dyslexics were really like, then I decided it would take lots of ordinary dyslexic people like me, as well as celebrities, being brave enough to come out as dyslexic. To be totally open and unapologetic about who we are, and to expect to be treated with respect, and equality.

It is very much a personal choice to disclose, and I fully respect other people's decision regarding disclosure.  However, this is why I have made this choice, this is why I don't pretend to be something I am not, I don't stay quite, or cover my tracks in case potential employers or others find out. It might not always be easy while ignorance and negative sentiment still exists, but it's not going to change unless people like me do something about it, and demand that change.

I am open about my dyslexia so other people can be. I want to create the change I believe in.

Old Currents and the Dark Waters I know too Well

I don't even recall how long ago it was I filmed the first Dysbooks Youtube reviews, around November I think. I could look it up using the blog but I don't really want to know. I feel like I should be releasing stuff far more often, but there's something so daunting about making it public, ME public.

It's different with writing, longer stuff or on twitter. I'm still an unseen thing behind the screen. Being filmed is different, being seen and having people hear my voice...although I suppose people can hear me via The Codpast audiobook reviews I do...I'm working on building up some more now, choosing which books to use together. I always try to find a good contrast and make sure it's not the same thing all the time, though I'm sure my tastes will come through anyway. I don't think that's necessarily a bad thing.

But that's not why the YouTube reviews are only just starting to go up (I've only uploaded one of the two so far, as of me writing this, the one I thought I sounded best in as it was recorded second, after I got used to the camera). It's because when I first played back the edited versions (thank you Laura, you're amazing) the sound was entirely out of sink with the footage. It was fine for Laura, who did the filming, but the computer I tried to play it on, no matter how I tried to view the content, didn't work. We couldn't understand why it wasn't working.

Laura eventually burnt me a DVD, it still didn't work, so she suggested she upload them to YouTube for me to see if that made a difference. I don't know quite why, but I gave it a go myself, and the uploaded version worked perfectly. The only thing I had to worry about was when and what order to release them in, and the feeling of vulnerability that went with deciding I was going to do it.

I sent links to a few people I trusted, first, and showed my boyfriend. Despite telling me 'I don't do feedback,' he said on the first review, one of The Bullet-Catcher's Daughter by Rod Duncan, I made way too many pauses, and sometimes looked like I was reading off the back of the book. I bristled at this initially, because I already felt worried about these details. Really, I was after reassurance, I wanted him to say it was just great, and he loved it. I thought about it before saying anything, because  I knew my reaction was learnt defensiveness. I've spent so long having to been my own cheerleader and refusing to let any criticism settle, because I had to in order to keep my sense of worth.

I think when you are trying to create something, honesty is a lot more helpful than the praise given because of your relationship to others. I knew he was right, even if the pauses and my general air of discomfort was to do with how aware I was that I was being filmed, that people would be watching me back. Having my own criticisms confirmed means I know I'm judging things fairly, not with too harsh or too generous an eye. I tend to swing between these two states with my creations, from blind love to seeing flaws that might not be noticeable to anyone else, obsessing over the placement of commas, constantly erasing and re-drawing lines. I was able to say thank you and to put what he said into context, even as the words stung and vibrated through me. I  knew I was just going to have to learn to deal with it, and I am getting better at it. After that initial reaction to argue back, in my head or out loud, I can take it in calmly, sifting through peoples words, holding them up against the facts and my own instincts...it's not like I'm great with compliments either, there's always a sense of mistrust. I'm still learning to take them at face value, and to just say thank you.

 Besides, other people said plenty of positive things, I made my comparisons, and saw many of those good qualities in the reviews, too. It's hard, but I think I have to listen when I ask these things, or why bother? I just...have to try and find the balance myself, keep hold of the stuff that's helpful and try to disregard the stuff that isn't. - Oh, if it were that easy, and inside I was less raw. Part of me still craves that recognition I never got as a kid, and is scared of being found wanting, as much as I try to tell myself I don't need applause. That I am enough in myself, and as long as I know this, other people's views don't matter. It's human to want to belong, to be wanted, to be seen, that's the trouble. I craved it even when I used to pull away from others by choice, scared of being rejected once again. Comforting myself by say I was amazing, I was better, and those 'norms' just didn't appreciate my gifts...Yeah, to do that I'd have to give them a chance to get to know me. I could always feel the fear of mediocrity pulling at me underneath, a strong, inky, current tugging at my chest,

I spent so much time worrying about actually being 'watched' by the unforgiving camera that I struggled to say what I wanted to, at least as fluently as I'd have liked.
 Every pause felt like an eternity. 

While it's leaves a weird feeling in the pit of my stomach, to release something so imperfect into the world, I'm going to do it anyway. Sometimes you have to take those sort of risks and put yourself out there, and just try and learn from it for next time...even if next time it's a different medium. There's always an opportunity to apply knowledge from one area of life to another...More than that, I don't want to be so scared of my imperfections, or those in what I create, that I never end up putting anything out there...I keep telling myself 'at least you gave it a go, a lot of people wouldn't even do that, and it's your first try. Who get's anything perfect on the first try, who gets things perfect ever? This is an opportunity to learn, and grow, and really, you are meant to be doing this to help people...It's not really about you. It's about doing your best to give people information they are looking for, or didn't know they needed, a chance to connect to something you love so desperately.'

90 people have viewed the first uploaded YouTube video. I was aiming for 50, so that's good, right? I've got emails about it and what I am doing, messages elsewhere on the internet trail I've been rolling out behind me, even as I wonder if it's really such a great idea. Facts to hold onto, when the tide changes, and doubt rolls in.

Sarah's first Youtube Review is of Books About Dyslexia for Parents.