Martyn Sibley

Birthday blog

// September 2nd, 2010 // View Comments // Uncategorized

I thought I had better write a blog tonight before the birthday celebrations kick off this weekend. 27 tomorrow and I have felt both 17 and 37 through parts of the past year, guess it averages out hey. Its been a mega year:

• I was pretty unwell for the first prolonged time of my working life in the winter months
• The car was an absolute nightmare throughout winter too
• I picked myself up with an amazing trip to Mexico – dolphins and scuba diving
• I started a new job at Scope straight after
• I setup my first ever disability event (‘Sunnier Days’ starring Natasha Wood and Sophie Morgan)
• I also carried out some consultancy projects around Personalisation and social media
• Had articles published on these subjects in Disability Now
• Been co-opted on the committee for Tottenham Hotspurs disabled supporters
• Co-ran a workshop on disability tips/hints at the JTSMA conference
• Had some great times with family and friends – clubbing, Bournemouth, Stratford etc
• Flew a bloody plane and recorded a song (coming soon)

More recently I have been both exhausted and unwell. I know now I have to watch how much I do in life at any one time. We all live and learn. I’d still say no regrets as the push I have had the past year means I can continue these great things but only when I have it in the tank. Its definitely been worth it.

The past week my ex girlfriend, but definite life-long friend Lena has been over. I was a little frustrated I had so little energy and the cold was bad that I couldn’t be as sociable as normal. However its been a great week catching up nonetheless. We had a real good chin wag and managed a great evening on the Southbank before cruising around the London sights in the car afterwards to some tunes last night.

Also the past couple of days I have been very aware of my concerns about being ill so early in the year, with winter coming and my ability to carry on normal life if the colds keep coming. The problem is I enter a vicious circle of getting ill, worrying about how bad it will be and if I can work ok, that it doesn’t improve as quick. Having had a chat with work and creating a strategy for a) preventing my getting run down and b) what to do if I am ill, I am feeling so much more positive.

This led onto the first clear thinking I have had on life for a long while. People who know me understand I don’t let my disability stop me, I hate doing things ‘differently’ and I am a sociable and ambitious fellow. Having calmed myself around health and working with the coming colder months, I came to the following conclusion of my priorities:

• First is my health. I plan to take Echinacea, vitamins and most importantly eat better. Also to not overdo anything and listen to my body when it says chill. Looking forward to swimming starting up again after schools holidays.
• Second is my job. I love working at Scope and obviously it provides me with the means to be independent. Now I can relax about health worries and totally enjoy my role.
• Third is social life. While I cant overdo it I reckon I need a night a week and something on the weekend to enjoy. I plan to book some concerts I have spotted (with birthday money), read books more, just chill in a coffee bar sometimes and still manage a good booze up with mates too. Furthermore spurs are in the champions league too J
• Last but not least is extra stuff. I love blogging, supporting disability charities, writing articles, advising the Tottenham Disabled Supporters Association, consulting on social media and personalisation. These will definitely not stop. I am simply going to space out these projects and run them as a marathon and not a sprint (as I maybe have done this summer).

So I will be interested to see how much I stuck to this new insight and plan. Lets have a look at 28, or even New Years Eve. Either way it feels great to see the world from a simpler, workable and happy perspective. I do still feel a little tired and under par but I think it will pass soon.

All that is left is to get to work tomorrow, enjoy my team birthday lunch at Wagamama and then enjoy mine and Shashika’s joint birthday bash in Angel. Looks like well over 50 Scope people are attending. Could get messy. Then I am back to mums Saturday for a potential barbecue and St.Ives massive get together in town. Dad then suggested Sunday pub lunch to see him and get pressies. Then I have Monday off for annual leave and a nice chill, plus to spend some of my bday money. Finally I am off to Wales Tuesday/Wednesday before a meeting with Tottenham Hotspurs for work on Thursday. Happy times.  I will check in again in the meantime I am sure. Cheers, Martyn.

When inaccessibility is a good thing

// August 28th, 2010 // View Comments // Uncategorized

As has been mentioned already Chris is leaving employment with me after this shift. Meanwhile my ex girlfriend from Austria came on Thursday. Its a shame I am ill because I would prefer to be full of beans for the 4 austrian girls staying either side of reading festival today and to give a send of to Irelands favourite PA. Lena is staying till Thursday so fingers crossed Im ok for at least one drink before she goes. Since spurs went through the champions league proper and drew Inter I have literally been off work, doing my ‘too much time on my hands’ thinking thing and most importantly stopping the cold hitting my chest. I am getting there…

The reason for the title is that while going through my evening shower routine and chatting to Chris about my birthday next Friday we touched upon my 18th. I had decided, 7 years ago now, that I wanted a tattoo. Yep thats right a real tattoo. I knew it would be one of those ‘cool’ and ‘trendy’ Japanese symbols that all the kids who were ‘down’ were having. So me, my mate Sam and his mum rolled up to the parlour in my old kebab style van. Wendy headed off with sam before unbuckling me to spec it out. Turned out there was a step. As gutted as we were there was hope, there must be others?!

So a day or two later my dear mother drove myself and sam further afield to another tattoo parlour. Guess what!? it was not accessible. Now I can honestly say I am so bloody glad I do not have a godforsaken Japanese symbol saying something like ‘tosser’ on my arm. A mistake most people make? But not I. The inaccessibility deterred my venture and I now have a plain, sexy looking forearm. This shows sometimes the social model remains, but that the physical barriers and forces at work that day, were there for me

Same goes for when I moved to London. I emailed a guy on gumtree, with a flat around the way from my now office. “yes its all ‘accessible’, I am sure” he said. I arrived from 1 1/2 drive away with billy and sam to find steps. not just to the room but also to the front door. amazingly annoying, yet a blessing. the guy was clearly an idiot, the house wasnt great and instead i now have my lovely flat and part own it – as opposed to giving 100% to someone who thinks wheelchairs can fly.

We all know accessibility is good and sometimes its a drag choosing a pub, club or restaurant on this alone. I was invited to one of the austrians mates for dinner last night but wasnt accessible. I was too ill to go but gave a double whammy excuse. So lets keep the movement for access everywhere but take positives, when applicable, to life’s little  anomalies on the way. Imagine how I might look with 100 tattoo’s today!

A poem by me

// August 25th, 2010 // View Comments // Uncategorized

Chilling out with a summer cold.
A blog through a rhyme is to be told.
With no big news or goings on.
Wondering where this year has gone.
With my 27th birthday coming next week.
Starting to get on but i’m no way unique.
One things for sure I need to start slowing down.
But still be young and act the clown.
Most key thing is always ones health.
Far and away better than any form of wealth.
Once I’m better I will return to lifes joys.
For tonight let’s hope spurs beat the young boys! (the football team)

Can’t run yourself like a gas station

// August 23rd, 2010 // View Comments // Uncategorized

Wassup peeps! Been a while hey… I filled you in last week before my political rant video and then explained all about my great day volunteering. Since I have been flummoxed (good word huh) with tiredness. I stayed in Tuesday night, was ill Wednesday from work, went to Runcorn for a work meeting Thursday and stayed in Friday. My mate Jon from uni days and the 2005 Australia trip (see flickr photos for this big deal) well he visited from wednesday till today, but was ill too – what a right pair!

So with some food, films and catch up chats we did venture out to little Jamaica down the road by Saturday. I love how Jon gets me to venture to new places and experience new cultures etc. We then grabbed a curry and stopped at the nice stokey church street bar i frequent, for one. was just what we needed in terms of chilled but got us out the house. yesterday my carer B’s sister started training to replace chris who is off next week. sad times but new times. we had a loverly roast dinner and watched a film before sleep and work today.

so as you can see I havent done much other than be a bit ill, tired and boring. It proves that you cant run your life like a gas station. good advice one of my uni carers gave me. that was when i used to go out 7 nights a week till late late. i am now sensible around work but with some of the projects i was working on and a still hectic social life it did catch up. happy to say feeling a lot better and have cut things down, especially before autumn rolls in. anyway footy on soon so have a good night and speak soon cyber world.

What is it all about?!

// August 17th, 2010 // View Comments // Uncategorized

This is an article I have written for an international medical journal. It also acts as a reminder of why I keep this website flowing. Furthermore being quite sensitive I do like a reminisce! Hope you like it.

Having read the article written by Patrick Moeschen I was inspired to contribute to the social model discussion and how this perspective also enhanced my story. My name is Martyn Sibley, I have type 2 Spinal Muscular Atrophy (SMA), I live in London and I am now 26 years old. Like Patrick, my upbringing was ‘normal’ and very much a can-do approach. Having used a wheelchair since 3 years old, requiring support for transferring from my bed to the chair etc, assistance with personal care, cooking, turning at night and other daily chores this is not always an easy scenario. I went to mainstream school, enjoyed family holidays with my mum, dad and sister (who is unaffected), socialised with friends and overall enjoyed a great childhood.

Fast forward on and I managed to gain good school and college results. Having been so integrated and encouraged at school is the reason the following was possible. Firstly I got into university and took my first steps (so to speak) towards independent living. With a team of 4 carers in a city called Coventry (in the midlands, UK) my life took a massive leap. I met many amazing people from around the world, broadened my horizons and learnt the art of drinking while staying up very late. I met many beautiful girls and enjoyed 2 long term relationships. Furthermore I gained a 2:1 in Economics followed by a Masters degree in Marketing. I managed to learn to drive in these years and took a trip of a lifetime to Australia via Singapore which was extraordinary.

Having laid these foundations for myself I left university, worked for one year at a national disability charity called Scope from my little home town, before realising I needed more. I managed to secure a similar job but in their headquarters in London. The plans took shape and not before long I was moving into my 2 bedroom flat, with a personally employed team of carers and the world at my fingertips. Soon after I received promotion into the fundraising team. This allowed me to use my degree subjects in a job that was so worthy and supportive of disabled people. Prior to this I had dreamed of London but with the dog-eat-dog lifestyle of the ‘City’, money and pressure. I soon realised I needed job fulfilment, not just the big pay cheque and I realised my body wouldn’t sustain such hours long term.

Around this point I was introduced to the social model of disability by Scope. It has been liberating to not see my disability as the problem, but instead a blip in the structure of society. By seeing 3 types of barriers; physical, attitudinal and organisational things fall into place. When a building has steps I am disabled, when there are ramps I am not. When people assume I am less intelligent because I use a wheelchair I am disabled, when they get to know me I am not. When employers assume my physical limitations mean I cannot work I am disabled, when they choose the best person for the job I am not.

I then carried out some talks to the youth group of the Jennifer Trust for Spinal Muscular Atrophy (JTSMA – charity for people with my disability). The buzz I got from lighting a fire in these kids showing despite their disability anything and everything was possible – I was living proof. I decided I wanted to do this to a larger audience and setup a blog. This was when www.martynsibley.com was born! Through daily updates on my activities and more political articles, the use of photos, videos, Twitter and Facebook I now reach nearly 1000 people. Some are disabled looking for inspiration, information or just someone to relate to. Others are not disabled and hopefully having their attitude of disability realigned with reality, or possibly to just look at the crazy life I lead.

Recently I have delivered workshops on practical tips and advice on disability, flown a plane, recorded a song and agreed to appear in the fashion show www.disabledandsexy.co.uk for the JTSMA. The sky really is the limit as long as I am working, sharing my experiences and always smiling. Whatever happens I believe the world for disabled people has sunnier days ahead.

Scope Inclusion – my volunteering day

// August 16th, 2010 // View Comments // Uncategorized

Happy Mondays! Just chillin here watching dragons den, bloody love it. wanted to say man how tired i looked in the political video yesterday and man man how annoying were the end moments??!! got interrupted so many times but wanted it done before i had to head. learnt the lesson of not rushing next time and aiming to not look so serious when talking bout serious things. that mood needed lightening right? anyway im glad i expelled those views as had been on my mind.

some of you may have saw the twitpic of me in the studio, you guys are in for a real treat soon. other than my 6 hour stint in the studio, i stayed at mums and drove back to london this am. was bit tired on arrival at work, but no time to relax as it was my volunteering day. some of you may remember i assisted with a Scope pitch to Islington council for a new Inclusion service in London. my dressing and acting as a teenager (only on the day of course) helped win the bid. so last week Scope Inclusion North London began.

It supports kids from Islington who are disabled, but leaning towards autism, challenging behaviour and learning disability. I was a little worried if any of the children would be unaware of my being weaker and accidentally knocking me. there were half a dozen or so at the club from 11 till 4. once it all started the day just flew. i worked with the loveliest guy ever who had sooo much energy. we hit it off chatting about everything under the sun. then after lunch i was queuing the latest r n b tunes on youtube while he sang and danced. he went for 2 and a half hours straight without rest! it was really cool chillin with this guy and knowing while he was at Scope Inclusion, his family were able to do some other things before he arrived home to be just as energetic for them too. whether rihanna, beyonce or lady gaga we jokingly argued over who was fittest and which one of us would marry them. we even nailed the fist to fist action (form of handshake between good mates) showing none of these rich and famous stars would get in the way of our new found friendship.

I am back in the office and tomorrow. the lad wanted me to return so i explained i couldnt but would drop in sometime and say hi. i finally wanted to pick up on the staff at the inclusion service. they are so skilled and professional, it was a great sight to see. However challenging the kids were, the staff were never phased. Its just great these children can interact with others their age, partake in varied and interesting activities, and allow their family a few hours to do other things. Safe in the knowledge everyone was happy and having a good time. great stuff and please keep this amazing service going. im going to work extra hard to assist the funding needed for these services in my fundraising role. night for now!

Video – Interesting take on recent Politics

// August 15th, 2010 // View Comments // Uncategorized

Political Rant from Martyn Sibley on Vimeo.

The power of Twitter

// August 15th, 2010 // View Comments // Uncategorized

I have been a busy boy on Twitter this week. I have been chatting to some very interesting and inspirational people. I have also seen some cool videos and links. The amazing thing is after retweeting (sharing) these finds on Twitter I was contacted by 3 people on email from America no less. They all wanted to say how cool this site is and to share something the blog readers would find useful. So I have simply pasted the main bits for your viewing pleasure and wanted to point out the power of Twitter enabling interactions like this is amazing.

1.

Thank you for the retweet ( http://www.twitvid.com/RPS54 ) of our dancing wheels project at University of South Florida (from my mom’s /our family’s Twitter account http://twitter.com/His_Sonshine. ) I went to your website and found your e-mail.  I have not yet viewed all of it but saw your video with the plane! … that is so cool… you really were flying!!! Everything you have accomplished is really inspiring… you are most impressive with your “high spirited” attitude!

Our project site is the Rolling Dance Chair Project …. http://rdc.arts.usf.edu …. There is a 3 minute CNN video which summarizes everything the best:
http://rdc.arts.usf.edu/videos.htm

Or to find the CNN & other videos more simply or share at the TwitVid account http://www.twitvid.com/videos/his_sonshine CNN - http://www.twitvid.com/KBXD1 .  The project was originally inspired from my dad who became disabled in the 1980′s when two 18 year-old boys crossed the center line hitting him head on.  He was in a coma for two months, never expected to survive… He did, however, but with severe complications and in a wheelchair.

2.

My name is Shane McKenna and I am the Public Relations Advisor for My Optional Health Solutions. I am contacting you today to share with you a new online resource that authors of the new book “After the Diagnosis: The Journey Beyond” are celebrating the launch of.  Authors Sylvia McGrath, Trish Robichaud, and Jeff Cadwell have created a no-cost publication aimed at distributing fr$ee online resources to persons living with a chronic illness or disability.

The publication has been creatively named the “Freebie Thingy Program” because the authors want subscribers to not only benefit from the amazing fr$ee resources that they’ve scoured the Internet to find, but they also hope to put smiles on people’s faces when they see the silly program name in their inboxes.  By featuring information about this new publication on your blog site, you will be spreading the word about a new empowering program for people living with chronic illness or disability.  I am sure your readership will thank you for it.  Again, the publication subscription is absolutely fr$ee.

http://www.freebiethingy.com/

Shane McKenna
Public Relations Advisor
shane@myoptimalhealthsolutions.com

3.

My name is Janelle Tam and I am part of the Impact Entrepreneurship Group’s Public Relations team. I’m writing to you about a new program we launched called I Am My Ambition that exposes behind the scenes stories of individuals who have successfully started companies, social enterprises, or reached a high level of achievement in their field.

I Am My Ambition is a campaign that supports:

·Overcoming a series of enormous barriers to become successful

·Devoting yourself to making people’s lives better

·Realizing that although chance does play a role in life, ultimately each person is the master of their own destiny

We all have our own personal hurdles that we have to overcome, if we want to launch our own companies at some point in our lives, and by showing how other individuals have overcome them, we can take idols off of a pedestal and let young people relate the stories to their own struggles and inspire them to start doing what they want, now. We can inspire ambition.

Jeff Adams, Paralympic champion and founder of Marvel Wheelchairs, is an example of the type of individual we seek to interview. Climbing up the 1776 steps of the CN Tower is a formidable challenge in itself, but doing so in a wheelchair seems almost impossible. But not for Jeff Adams, who did so in 2002, raising $170,000 in the process. In addition to being a three-time Olympian, five-time Paralympian, and six-time World Champion with three Paralympic Gold medals to his name, Jeff Adams is also a journalist, motivational speaker, and founder of Marvel Wheelchairs. Beginning with his childhood battle with cancer that resulted in his spinal damage, to the heat of the race on the Paralympic track, to the later challenges of unwarranted controversy and entrepreneurship, Jeff has faced a slew of seemingly insurmountable challenges. However, he never gave up, and Jeff’s many successes were achieved the same way he climbed the CN tower, one step at a time. The personal story of Jeff Adams can be found at http://www.youtube.com/watch?v=6ZwBxqL58kM, and all our other interviews can be watched through YouTube (http://www.youtube.com/user/ImpactEntrepreneur) or where we are starting to build our community via Facebook (http://facebook.com/iammyambition ).

I’ve been reading your blog and really enjoy how you share about your exciting experiences (such as flying for the first time!), and promote pushing the boundaries being disabled may set. Because of that, we thought that you might enjoy the video and consider sharing it with your readers.

You can also check out the videos by visiting http://myambition.ca/ or stay tuned to updates via our http://twitter.com/iammyambition. Please contact us if you would like more information about our campaign. We’d be happy to help!

Thanks,

Janelle Tam

External Relations, I Am My Ambition

Impact Entrepreneurship Group

janelle.tam@impact.org | www.impact.org

Stevey G and BA Baracus

// August 12th, 2010 // View Comments // Uncategorized

Hey peeps, decided to jump on to keep things ticking, clear couple of bits up and say hi! Since the amazing plane experience I got my lie in Sunday before bashing out the toolkit. Its all about how to e-campaign with an accompanying training format that I will do in November a couple of evenings. Its for Dislib who capacity build small disabled peoples orgs with the tools needed for sustainable campaigns.

I probably have to put my hands up and say the past few months have been busy and its caught up. However my feeling absolutely shattered is also down to some weird contracted insomnia. for the past 2 weeks sleeping before 1 has been a rareity. since tuesday night it has eased and improved. so due to hitting this wall monday and tuesday was lower key. then last night was the match. hope u saw my twitpic of the ground? the game wasnt great but Gerrard did us proud. i went with bhav, tom and david from work. was so cool driving over to the ground chatting away, grabbing some food and enjoying the game. after we were stuck for over an hour in the car park. one guy grabbed his crutch, got out the car and started on the poor unassuming car park attendants with frustration. luckily it passed over.

after another long but good day at work today i went to the cinema with clare from work. we watched the a-team! soooo cooooooooool. took me back to being 5 and having an a team style van when i went to florida with my now step brothers et al. really enjoyed the film, the roar of the cinema and chillin with clare.

so tomorrow i am working before driving back to mums for a weekend of food, sleep and tlc. feel a bit horribly tired but think with a weekend at the home i grew up i can shake the busy london stresses i have gained recently from working and playing hard. planning to ease up now before winter months roll in and i hope to have more balance of winter months with work and play ie. not being ill. may start working from home sometimes to help not burn out.

In terms of house keeping I wanted to say thanks for the recent emails, tweets and disqus comments, great to have 2 way dialogue. as u have seen i have become a little vocal on recent govt decisions. i hope to spend the weekend catching up on some emails and writing a more formal article on all this condem nonsense. till then enjoy your weekends and keep smiling the way i always do – even when a little run down

Up, up and away

// August 8th, 2010 // View Comments // Uncategorized

Quick blog here as the video shows all. Make sure the HD button is off when having trouble with slow download speeds…

Beyond the video I just want to say how I am still in awe of yesterday. To have been so well looked after, secured into the plane and have my needs understood with the controls – the day was smooth as. Raymond and Fiona are the nicest guys ever and their love for flying oozed out.

http://www.disabledflying.org.uk/index.php please go to their site, have a look around, if your interested in flying give me or them a shout and if you can spare any cash, a donation is welcome. They provide subsidised flights to disabled people so this amazing experience is affordable. send any rich trusts and companies their way too. Beyond the simplicity of enjoyment on the day, the experience shows life is for trying new things, anything is possible, and afterwards you are willing to view things more confidently.

I do not know yet if I will pursue an adapted plane to gain my pilots license (after lessons) as this is very expensive (maybe when i make my millions). however i will return for other flights and i can honestly say my mood is on top of the world. to have been so high, to see the amazing landscape and control that little plane, there was nothing on earth that mattered. maybe its escapism or maybe its a new dimension – who cares! all i know is i really can do anything and will now look to try new things when not working hard to pay for these privileges of life