View More

My personal routine has remained stable throughout my blogging career. I work Monday-Friday, spend summer weekends partying, winter months dreaming and annual leave days abroad in the sun. This weekend has seen a catch up with fellow baby milk boys Srin and Vik, with me trying to motivate myself back into my extra curricular activities. In contemplating where these projects are presently at, I have realised my disability awareness and ideas for solutions have evolved massively. It’s around one year since I put my neck out and arranged a meet up for my blog readers. Last May Natasha Wood, Sophie Morgan, a Shoreditch venue and 20 delegates converged for a good day of informing, inspiring and setting us all on a sunny adventure. Subsequently my work with Hackney council on Personal budgets (self directed care) and the consultancy with Disability Lib around online campaigning (for disabled people’s organisations) saw a slightly professional demeanour to my antics. There was the launch of www.disabilityhorizons.com with Srinivas Madipalli, which received brilliant reviews on everyday disabled people doing amazing things. My partnership with the Jennifer Trust for Spinal Muscular Atrophy (JTSMA) around online seminar provision  delivered live seminars on managing care with live Q&A facilities. Finally the ongoing feedback from my amazing blog readers brings us up to speed on a year of trying, sometimes failing, learning and improving.

So where would I say I am now?

Well, Sunnier Days (the vehicle for these projects) has a new member. Off the back of the success with disability horizons, my good pal Srin is formally co working with me on the future of Sunnier Days’ disability provision. We have been working hard on the next edition of the mag and will launch this in the next week or so.

The online seminars are being consulted with the members of the JTSMA for improvements. Meanwhile Hackney council are working with Sunnier Days on a pilot project to provide online seminars to their disabled service users. Very exciting! If you have any feedback or questions on our online seminars please do get in contact – martyn@martynsibley.com.

I am personally writing an article for Disability Now today, which is around the current political economy effects on disabled people. It explores individualism and collectivism as approaches to political change. It is stretching my thoughts on a complex matter, but again is assisting me in understanding the issues to create/offer some solutions. There is no such word as can’t my mum tells me and its now my mantra along with ‘inform, inspire, change’.

With articles, magazines and seminars I think you would agree there has been a lot happening. Who knows what will occur in the next year, but I know it will be challenging, enjoyable and invigorating. As I am writing this post, Srin has emailed the best and most profound quote for my DN article. At the same time I have received an article from a school friend Fran Williamson who is a Paralympics swimming champion. The article is for the magazine but I learnt more about a good friend too. This whole adventure highlights so many issues and struggles, but it also highlights so many amazing people, doing amazing things and told in their own amazing words. It’s very satisfying seeing this all develop and evolve.

The summer series launch

I finish this quite pensive, thought provoking blog with the launch of my summer series. I will of course update you on the daily perspective aspects of work trips, parties, holidays and other antics. However having flirted with so many subject matters relating to disability, I will be writing an article, from personal experiences, around a range of subjects – education, wheelchairs, childhood, university, learning to drive, travelling locally, travelling the world, working and anything else that comes to me in the meantime. I hope you enjoy them, find them informative, inspiring and they evoke some form of change in you. I know they do in me.

Until the first edition – please continue your feedback, continue your support and lets make disability positive, solutions based and progressive! O h yea and that app is still in production but coming soon… 🙂

View More

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.