To help relax the minds of my readers, I’ll just be telling you a little bit more about one person today. That person is me.
Why will I do this? Well, receiving first-hand evidence from others that I’m not the only person with an invisible disability has helped me in the past. If you’re another disabled person, I can’t immediately come by, shake your hand, and talk to you too. However, I can tell you a true story of how a disabled writer called Joe Stevenson was born and bred.
As you read it today, I only hope positive feelings find their way to forward.
Born with a flaw called epilepsy
Although I wasn’t diagnosed until the age of five, it’s been predicted that I was born with epilepsy in 1989. As toddler, adults used to think I was a bit of a daydreamer more than anything. But absence seizures were to blame, and medication made it stop. After that, small doses of carbamazepine continued to keep my condition pretty calm and nearly seizure free for about 11 years.
Education was welcoming for quite some time
Although I don’t remember loving every second of primary school, it was good enough. After that, secondary school was even better; a lot of new friends were made. A great sense of confidence was gathered at that time. I guess the truth is that I’m really not picky; I tend to get along with anyone. However, one thing I can’t claim is to have made a best friend during that time period.
Although I messed around in lessons a little, no major trouble took place and I never had to deal with detention. I got the gist of my GCSEs and made my way through into further education easily enough. However, the subjects I then studied didn’t take me anywhere closer to where I needed to go.
And why was this? My epilepsy got a lot worse. Although I still had friends that could have stuck closer if nearby, it wasn’t so easy to keep connected. After being very disappointed with my first-year results in sixth form, I went to a new college.
Back then, I was a pretty good guitarist and loved music more than anything. At City College Manchester I studied a BTEC ND course in music technology. It kept me happy enough; academically, it went very well. But I didn’t make any new friends I still remember today. By then, I’d lost a lot of confidence and self-esteem and also obtained depression and anxiety. Many new issues can arise with more seizures and medication side-effects occurring at the same time.
Although others will say otherwise, I consider memory problems to be the biggest issue caused by my epilepsy. I deal with both short- and long-term memory loss. It means I’m crap at quizzes, and not remembering people’s names and details often stopped me from socialising. It’s also why I wasn’t so smooth when writing The Epileptic Man. I forgot rules relating to English grammar and needed to get in tune with a bit of training too.
Moving through university wasn’t easy. Once again, I academically enjoyed the course, but lost a lot of high school friends. Although I’ve reunited with some, others understandably jumped into their careers and wandered into unknown areas in the UK. I can’t deny I’ve made some slightly strange mistakes too. I don’t feel totally to blame but was excluded from former friendships due to unusual behaviour. My epilepsy made it happen.
Although my family kept me climbing towards the degree I got in 2012, I can’t help but feel I missed out on a lot of opportunities. Disabled students didn’t have access to support during my time at university. Between the ages of 17 and 25, I went through a long spell of mild/moderate depression. It was a tricky time in my life.
I bounced back
In my mid-twenties, I finally managed to overcome my depression. Beforehand, I saw counsellors, took antidepressants and tried out cognitive behavioural therapy too. But, at that point, the NHS didn’t do me any favours.
So, I decided to do a bit of research. I went online and found the answer when I came across a book on Amazon. It’s called ‘Mindfulness for Health’ and was written by Dr Danny Penman and Vidyamala Burch. It provides a variety of daily mindfulness meditation exercises. They each last 10-15 minutes and change from week to week. As time continued, I stayed committed, and my depression finally faded away.
Less depressed but still disabled
I waited for two and a half years for my first paid job. When I found it through Reed Specialist Recruitment, I worked for two and a half years with Lloyds Banking Group. I appreciate their efforts; they made a few adjustments and kept me safe when seizures occurred. But the job was only temporary. They’re an equal opportunities employer, but I was let go when they no longer needed as many staff in June 2017.
After that, I searched for similar administration work after gaining quite a bit of experience. Ever since then though, discrimination has clearly taken place after searching for so long to find a job that I wanted for a while.
Unlike at LBG, amendments haven’t been granted in work since. No extra time to memorise tasks; no time adjustments were made upon request. In February this year, I had a contract with a similar role I was doing at Lloyds. However, with no adjustments made, I was simply sacked for being too slow after three and a half weeks.
Writing is what I want and need to do
I could have sued the company, but with more stress likely to spread, I decided it wasn’t worth the hassle. I decided to forget about working elsewhere. I’ve always been ambitious, and administration work was just going to be my backup.
I’d been blogging about epilepsy and disability ever since I left LBG, but my writing skills were not professional. However, over the past eight months, I’d say a significant amount of progress has been made with what I write.
A must have book for writers is ‘The Elements of Style’, and it helped me pick up much better writing abilities in due time. After that, I took on a level three online course in copywriting. Some people might skim read it to quickly claim their new qualification, but I was looking to learn. To stick it in my head, I memorised every word that was written by typing it out; around 36,000 in total.
In July, the idea for a new young adult’s novel also got the go ahead. People like the sound of it; one thing I can tell you is that disabled people make up plenty of characters – including the protagonist. As well as that, in August I went to Arvon Foundation to do a YA adult writing course at Lumb Bank. I’m sure that’s set up more skills that’ll lead to a better book in the future.
After finishing the course, I spent most of my time in September writing articles to be included on my website. These have been about new disability services and issues for disabled people. Popular music also got involved, with music reviews and interviews included. However, I’ve put a lot of what happened at university behind me now, and the subject of disability will always remain in my head.
And the blog was born
People liked what I’d write on my portfolio website, and I needed a platform too. It was time to start a blog.
And now you know that the words written will be coming from a disabled person. I know there are many barriers to be aware of – more than I’ve had to deal with. However, I’ll do what I can to deal with important matters that appear from all angles of the social model of disability.
So, right now, I’m only asking for a chance. A chance to explain to others what ideas are currently clogging up my mind! And, even if you don’t like them, there’s no need to fret. You’ll have your right to say what you see from my suggestions after I make them as well.
If that happens, I promise you, I’m no MP; I won’t ignore what you have to say.