National Day on Writing: A Disabled Writer’s Perspective.

I found out about the National Day on Writing quite by chance when I was Googling one day and I thought “I want to check this out!”

National Day on Writing, also known as National Journalism Day, is a day to celebrate writing in all its forms. Here’s more about the day.

Many people manage to learn to write, others don’t. Some make a living from writing and others don’t.

People didn’t know if I was going to be able to write. I didn’t have a dominant hand for a long time. Spastic Quadriplegic Cerebral Palsy has made my arms and hands, as well as the rest of my body, stiff and painful. Hydrocephalus would affect my concentration when I got headaches, which I did often. At their worst, they would have me taking lots of time off school, and my teachers would debate as to when I’d catch up on work, as well as constantly telling my parents I should be in a special ed school.

As far as I know, I learned to write when I was five or six, after many many sessions with my assistant and carer, Avis Rance. Avis is sadly no longer with us and hasn’t been for many years.

It soon became apparent that holding a pencil or pen was really tiring for me. My letters were shaky and badly formed because I was trying so hard to see things and had hand tremors. I would feel a whole-body tiredness, as well feel like my arm was about to fall off as it ached so much and I would also have a thumping headache and terrible nausea from the effort of writing. In short, this fatigue would leave me exhausted.

My Occupational Therapist at the time, Maggie Ellis (who is also not with us), did a test where she timed me trying to write. She said she could see how hard it was and asked me how I felt afterwards. I described the feelings mentioned above. She worked with me tirelessly from age 5-17. By the time I was 17, I’d tried rubber pen grips which has a hole in them to put a pen or pencil through to supposedly make gripping more comfortable and a writing slope which was a really bulky wooden slope she’d put on the table and hold paper on top of so I could practice writing in a straight line, but none of those things went well, and at least I tried.

This difficulty with writing has been with me since that day so I know it’s part of how my disabilities affect me, and this is the same fatigue I still get when trying to move anything.

When I started to write, I was still trying to get used to my body and the way it did, or didn’t move.

The number 5 was a problem for me, as I couldn’t put the line at the top well and it would end up looking like an S.

My teacher, Mrs Taylor, was the headmistress (principal) of the school. She was tall, dark-haired, strict and sceptical. She’d been sceptical of me ever since my parents tried to get me into her school, St Nicholas Infant (elementary) School in Wallingford, Oxfordshire, England, first choice as it was near home and they were advised by my doctors to see how I got on in Mainstream school. She thought I was “uneducable”.

I couldn’t trace, I couldn’t draw and writing was hard and exhausting. What solutions did the school have for me? A huge klunky old typewriter that I barely had the strength to press the keys on (that was when my brain sent the message to my eyes to find the right letter). I would spend more time staring at the typewriter rather than actually doing anything, because I couldn’t locate the letters despite my strong glasses because of my difficulties focusing my eyes. I have nystagmus (constant involuntary eye movements) and hemianopia (a type of blindness where half of both of my eyes has complete blindness and the rest has a severely reduced visual field).

I still just stare as a keyboard as I try to find the right key, but nowadays it’s trying to find the key to turn my computer on, as I can do everything else by voice.

Fortunately, Maggie introduced me to an amazing voice recognition software: Dragon Naturally Speaking, which I could use with my voice. Was my body relieved!

From the moment I dictated my first word there, my movement difficulties didn’t matter, my lack of coordination generally, especially hand-eye coordination, my tremors didn’t matter: my voice was the pen.

She told me “just speak normally, don’t speak too loud or too soft.”

The thing is that I have dysarthria, which makes my speech slow and hesitant and I often repeat myself or forget what I’m going to say. My voice will wobble, I will mispronounce words or I will run out of breath.

I trusted her, and nervously dictated my first word. It appeared on the screen. A smile appeared on my face. “I did it!” I said. I had started to drool and I swallowed, trying to get my muscles to control my mouth. The bullies said that I spat when I talked, and I was, and still am, really self-conscious as to that. Excitement and nerves meant I had more muscle spasms.

But I felt really, really proud.

Those are just some of the experiences I had when trying to find the right tools to help me write.

Have they paid off?

Yes! From the first dictated word up to now, I have dictated my university thesis, as well as numerous novels and writing exercises from online courses and challenges, and this blog.

So, do I think writing is important? Yes, I do. No matter how you can do it, with a special pen or with dictation software, if you have an imagination, you can be a writer. I’m glad I found the National Day on Writing, and from now on I’ll always celebrate this day. Writing is a craft and it is an art and it’s one I’m glad I’m so passionate about.

I have many posts related to writing on here.

What will you write today?

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