Growing up with a disability

Other than writing this blog for your lovely selves I am leaving my additional projects alone this weekend. Since xmas I planned to think how an online seminar would work, market it to an audience, present the sessions myself and evaluate the feedback. It took a lot of effort but I achieved this and am proud to say all went well. I need a couple of weeks to get my energy back, look at what worked and what needs improving, and then go again. I hope these online seminars will revolutionalise disability information dissemination and help to inspire the next generation that everything is possible when you have a disability, through my personal experiences.

After my winter sun 2 weeks ago I presented the first seminar last Wednesday, created the helpful blogs from Tenerife on disability provision there, had a school reunion singstar night, saw my friend billys new flat, met with Srin about a new online disability magazine (more to come), created martynsibley.com manifesto and online resources page, prepared the slides for seminar 2, met 2 uni friends, saw the Kings speech, presented seminar 2 and oh yeah – worked full time for Scope, which has been busy. Hence I need to switch off from the world this weekend!

With my blog and seminars it has involved a lot of internal thinking; how I thought and coped with disability through different life stages, how I approach new challenges, identifying information that is crucial to achieve a goal, remembering people and organisations who assist, and generally anything that is useful for you, my amazing blog readers, to know about.

You will have picked up my onion like personality 😉 – happy go lucky, silly humour, practical/pragmatic, ambitious, sensitive to other people and when allowed time to think I am very nostalgic. The real spark for this blog topic was when one of the parents of a disabled child attending the seminar mentioned afterwards their daughter falling over in her callipers (leg splints) and having problems with the school over this. My reaction was of how she could solve the issues at school but also humorous memories of my own. I offered my thoughts on the situation and felt very upset to hear of the difficulties. I also wanted to make the lady smile and shared the story of when I was 15, free standing in my callipers behind the sofa watching tv having had my first alcho pop. You know the ‘only fools and horses’ episode when Del Boy says “play it cool” while going to lean on the bar, and falls through the gap where the waiter had opened part of the bar to get out? Well that was me! Mum said one minute I was there stood up, and the next I had disappeared behind the sofa. The lady said it made them smile, which was nice, and I hope they have now sorted the issues at her childs’ school.

Having recently collated so many experiences from childhood, it led to a conversation in the week with 2 other wheelchair users on being disabled as a child. Its a weird one at that age knowing you are different, but making your way through life as anyone else would, and accepting when your limits are a factor within a situation. The stories we shared were generally humorous, as I think hindsight can enable that, some were of injury and generally how we balanced the line between inclusion, practical limitations and knowing your additional needs.

One other common theme was the mischief I was involved in. Growing up in a village, my friends and I played games like knock and run, move the mini car round the corner, rude notices in the village message board and egg throwing at Halloween. Not proud but we were kids J the funniest moments were when we would be caught, my mates would scram on bikes and I was left at a lower wheelchair speed to either try n run away, or make out I was not part of this crew. This may sound sad, but the adults knew and were great, equally this involvement in high jinx and the chance to learn about consequences and mistakes was a good thing.

Therefore I would say that a disabled child must have their needs seen to and know where their limits are. Equally they shouldn’t be too wrapped in cotton wool, be allowed to be naughty, make mistakes, be taught right from wrong and enjoy the thrill of mischief as anyone else. I know my mates were punished the same way as I was from the egg incident. Thats true equality!

I am off to my fellow SMAer Tobys house now for some wine and a catch up. Spurs v Wolves tomorrow, so watching that. Most of all I am chilling J Hope you all have a great weekend. If you have any thoughts on my seminars, ideas for topics you would like me to share or comments on this blog please use the comment facility or email martyn@martynsibley.com.

Receive Updates

No spam guarantee.