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Welcome to a new chapter of my life! It is hardly a shocker to hear as I have been banging on about this for a few weeks. However, today is officially Independence Day! The 4th of July 2011 is the day I begin working full time on changing the world for disabled people and their families. It is also the day I begin life without a regular salary. Let me just talk you through how I am feeling, my plans for this new era and how I need you guys to work with me.

My last day at Scope felt quite emotional. Whilst the decision is right for me now, 5 years is a long time to have a routine, meet amazing people and be part of a great organisation. My manager did a lovely speech, I awkwardly managed a few words, I had a card signed by everyone, some cool presents (concert vouchers, kindle voucher, Alan Sugars book, road tripping USA guide and a globe), and then we ate cake. Straight afterwards I had a meeting for the magazine www.disabilityhorizons.com (more on this great progress another time), attended Arcade Fire in concert Thursday (video coming soon) and my leaving drinks were Friday.

All in all it was a tiring, nostalgic, nice and weary week. Now I am getting my mind over the sad elements, and focused on the future. This future is to work full time on new media projects to shake things up positively for disabled people!

My plans work in 2 areas:

  • to empower disabled people (especially the younger generation) to be more aspirational, and with the right information to achieve their goals.
  • meanwhile, I want to show society that disabled people can and do achieve if we all assist in removing the many everyday barriers in the way.

Online conversations – I will spend more time online engaging and understanding disability issues. By learning from disabled people around the world what their hopes/dreams are and the reasons they may not pursue them, I will create solutions to overcome this. Furthermore with my co-editor Srin we plan to achieve online learning and support through www.disabilityhorizons.com by allowing others to write and share their own experiences too.

The following explanation of my new website pages will assist you in seeing this more clearly.

Blog – where I will continue to share my life experiences and pass on useful information.

About – for a new visitor to understand me, my life, why I want to support other disabled people, my media work and my ‘SunnierDays’ projects.

Philosophy – in every article, video, seminar and project I have a philosophy underpinning it. The 3 parts are to understand your limits, know your goals and the barriers stopping you reaching them, and then grabbing life!

The tribe – I am not wanting, aiming or able to improve life for disabled people alone. It takes lots of individuals to better themselves, to support each other, demand positive change and collectively work towards an improved world for all. Subscribe to the blog and join the tribe, its going to be a cool journey 🙂

Online learning – to read about and sign up for the latest Apps, seminars and future projects please head here.

Give me a shout – to feedback your thoughts, ideas and questions click here. In a multimedia world there are a few channels to contact me on. I can also be booked here for speaking engagements.

The second part of my plans are with ‘SunnierDays’, which is my social enterprise.

Aim one is to pay the mortgage and eat some food next month. However I hope SunnierDays can work with society to remove the barriers blocking some disabled people from living the dream.

To begin with I am packaging up my professional and personal experiences into a series of seminars. With one hour on a range of relevant topics, the seminars are delivered online and free to you (backed by companies, charities or Local Authorities). They are accessible in so many ways (with no need for transport, zero expenditure and beamed into your home). Then, using real life examples and useful tips around education, employment, travel and independent living, the attendee leaves with specified learning outcomes.

Having honed certain skills to find innovative solutions for disabled people through new media, I am keen to share this knowledge. I will achieve this by working with:

  • Organisations setup for disabled people – I will work for a specific period of time to understand an organisation and their service users’ vision, aims and challenges. I will then recommend new media projects that can make a bigger impact for their service users. From growing memberships, increasing the number of ‘active’ service users, creating an online community and upskilling staff, I will leave the organisation with inspiring and useful changes.
  • Everyday organisations – whether in leisure, travel, entertainment and so forth, every business has a disabled customer base. Partnership work will find solutions for a better customer experience with improved customer services. An example would be the use of an i-pad to show a disabled customer a video tour of an area in a museum they cannot otherwise access.

Beyond my new found profession, I have a few personal goals to share on Independence Day. These include:

  • Finding a good work routine – to work sensible hours and find some cool cafes with wireless internet
  • Networking – I hope to meet other workshifters (remote workers) in London and when travelling
  • Productive working – even with an additional 35 hours in my life now, working for myself will never be a 9-5. However I hope to get my energy levels up and more quality time back with friends
  • Exercise – now I have flexible working hours I plan to do more physio, regular swimming and other beneficial exercise
  • Campaigns – beginning with twit polls, we are going to tackle the big issues that bother you. To get your creative juices flowing, how about one day where we take photos of inaccessible locations, hashtag the twitpics and collate a website of the shots? We could call it #nochairsgo?
  • Travel – you all know my love for travel! Once the business is running, I hope to travel, work from my laptop and meet interesting people. I would love to interview disabled people around the world for my blog or a tv documentary. To show my difficulties in accessing South America, Asia and Africa, set against the lack of everyday provision for disabled people who live there would be amazingly insightful.

Watch this space guys! I hope you feel energised and ready to change the world! I am off to blog for the Institute of Fundraising National Convention. What a cool start to a new chapter…

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During my time as Hackney council’s Personalisation ambassador I delivered talks about my social care package. It was to show disabled people, professionals and local councillors in the borough the merits and difficulties of Direct Payments and Personal Budgets. I laid out the assessment process, defining your needs, creating outcomes, using the money and other resources to reach those outcomes and all other information in-between.

A particular part of the story I felt important to tell was around well-being. On reviewing my outcomes last spring I decided upon 1) maintaining the level of care I had to continue living a fulfilled life 2) to find an outlet for exercise, as since the age of 18 this provision falls off a cliff for disabled people 3) to go on an ‘adventure holiday’! I have written an article for Disability Now on social care and you may want to attend an online seminar around this matter soon. I have also blogged about the trip to California. However part 2 is to be explored here.

I had always loved swimming as a child. In Florida, aged 4, I took of my arm bands for the first time. My swimming technique was certainly different. I was very buoyant, in a vertical position, no leg movement and a kind of bobbing up and down with arms propelling me forwards. I swam for the British Heart Foundation, when Norma Major (the then Prime Ministers wife) helped me out of the pool for Anglia tv cameras. Yes it had a glint of brave disabled boy, but it was an achievement too. I raised a good amount of money and won a trophy for my efforts too. Also my mum is a swimming teacher and so my love of water comes from her.

Please see this old photo for a giggle http://www.flickr.com/photos/martyn_sibley/4177058416/in/set-72157622856332857

As touched upon, physio, swimming and general assistance with physical health drops off the metaphorical cliff. I used to swim at school with ample assistance in getting changed etc. As well as provision dipping, I also had major surgery aged 15 for a scoliosis (curvature) of my spine. This meant being in hospital for a month, after having 2 titanium rods and multiple screws on my spine. Not pleasant! Being laid up and careful for so long, I lost the ability to swim.

Fast forward 11 years and I mentioned swimming to my social worker, as per number 2 above. I expected access to a pool to be minimal, far away, costly and basically impossible to do around my office job. In just asking, I found out there was a pool around the corner from my flat that ran a disability swimming hour after work on a Tuesday. Amazing! Better still, there were people to assist my PA, hoists to left me, a bed to change on, and the floor of the pool raised up. ‘What’ you ask? Yes, the floor on one half of the pool raises up, the water flows through it and you wheel onto it in a shower chair. Then as the floor lowers down again, you are in the water and the chair is removed.

The first time I got in my PA had to support me the whole time. I was flipping and flopping around with no balance. Then I managed to gain some balance with a spaghetti float. However this meant my hands weren’t free. Then we used these armbands that looked ridiculous but kept me afloat, I could move my arms and not drown. For some weeks I bobbed around this way.

In Cyprus and a few other Hackney swimming sessions I took the armbands off but couldn’t quite balance or stay afloat. Finally a couple of weeks ago a golden moment occurred. I managed to float, balance and move slightly without any assistance. Every current took effort to fight against and every breath threatened to remove my buoyancy. Nonetheless I carried on regardless and swam around for a good few minutes.

I was absolutely shattered afterwards. My body hadn’t moved independently in years. Muscles that hadn’t been stimulated were asked to do their bit. The realisation and achievement of the situation came later. I had actually swum unaided for the first time in over 10 years since my operation! If I hadn’t just asked my social worker what I thought to be impossible, it wouldn’t have happened. I would urge you to do the same. Whether swimming, exercise related or other, just look into something you want to do but think it to be too hard – I bet you’ll be surprised, happy and proud of the outcome further down the line. I definitely was!

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In the latest instalment of my summer series, I am discussing how to attend summer festivals when considering additional needs, such as my own.

During another difficult winter I decided I may not go one better than flying a plane this summer (although leaving my day job to start a business feels like a sky dive right now). Instead I decided I hadn’t been to any concerts and festivals in a while, and would book a few up. Having been to many arena concerts I was keen to be outside for the novel experience of the summer festival atmosphere. 5 or so years ago I did attend ‘t in the park’ in Scotland. After two 8 hour drives and one hour commutes from the site to the hotel each morning and night, it was a tad tiring. Despite wanting to try camping soon (tents, I imagine, are tricky with a wheelchair – any tips guys?), I decided to keep the festivals local and use my flat. I know, how sensible is this?!

I have just recovered from attending the London Feis in Finsbury park with Bob Dylan headlining. Check out the video! Yesterday I saw the Kings of Leon (amazing!), Friday I am seeing The Killers, Kaiser chiefs and James, and next Thursday is Mumford & Sons with Arcade Fire (all in Hyde park). Finally I am going to Lovebox in mid July with the Wombats and Snoop Dogg headlining my days. So how does it work when you have a disability?

In many respects it is the same process as attending without a disability. However as you go along there are additional considerations and actions:

Booking the tickets – Firstly decide the concert you wish to attend. Go to the relevant website to check specific details on bookings for disabled people. Either select a ‘disabled plus PA’ ticket, or book just one standard ticket. If you have bought one standard ticket, you then need to contact the agency to request the PAs ticket too. PAs should always go free, even if it is just your friend. You will need to ‘prove’ your disability, however, which I do by emailing them a scanned copy of my DLA letter. With care, accessing work and a social life, I am now good at articulating the fact I am truly disabled, and not using this wheelchair as an accessory or because I am lazy.

If you are booking camping then follow the instructions for disabled people on the website. As I said I haven’t ventured here, yet.

Planning – This is obvious stuff. Beforehand, consider everything from going to the loo, staying warm and dry, or hydrated and not sunburnt, taking food and alcohol, etc, by packing the relevant items. This is for your disability and your general needs. A ‘cape’ is a good idea to cover a wheelchair from a soaking, as I found in the video blog.

Attending the festival – So you have been sent your 2 tickets, chosen your PA/friend, packed the essentials, now its time to go for it. On arrival spec out where the toilets are, how accessible they are, where the wheelchair viewing platform is and then begin drinking. At London Feis there weren’t any screens and the bands were miles away, but I had the best time. I caught up with my former lover and now friend from Austria (that description was to see the horror on her face, lol). We met loads of cool people there, including a disabled couple and their PAs. We all had lots to drink, put the worlds to rights, and enjoyed the bands, albeit from a distance!

After the festival – Every festival is different. The music, the weather, the people. I do guarantee you that no matter what happens, you will remember every festival for the rest of your life. Although if anyone can piece together 22.00 – 23.00 on Sunday night that would be helpful for me.

Let me know of your experiences and if you have any additional questions on attending a festival! martyn@martynsibley.com

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Richard is one my best mates. We attended Coventry university together. Had many hilarious and intellectual conversations throughout. Rich is a political genius and I wanted him to write this piece around the recent media coverage of disabled people. I hope you find it interesting, helpful and wanting to question the status quo. Thanks for writing this, bud!

In this article I hope to show the reasons why Shipley MP Philip Davis felt able to make such a disablist statement and how the debate around welfare reform and barriers to employment has taken a wrong turn, before turning to what could be done to improve the situation.

The recent comments by Mr.Davis that those with learning disabilities should be paid less than the minimum wage to encourage employer’s to give those with impairments jobs, has rightly been condemned by activists, charities and by all shades of political opinion. Apart from the comments being deeply offensive, it is my understanding that to pay someone less than the minimum wage is illegal and dare I say it a flagrant degradation of their human rights.

However, I believe the current political climate make such comments acceptable and is further evidence that we are a long way from ridding our society of disablist attitudes. Nothing exemplifies this more than the current debate surrounding welfare reform and barriers to employment.

The harsh rhetoric employed by the media and parroted by politicians of all stripes in a desperate attempt to be seen as tough on welfare , put forward the argument that, whilst protecting those who are most in need, they are going to be tough on those who are fit to work. This  is unhelpful and wrongheaded as the recent debacle over the last government fitness to work test highlights.

There is an assumption that being on benefits is an easy life, and that people are happy to be in receipt of welfare. They argue the current benefit system discourages people from finding work.  This does not tally with my own experience of being in receipt of benefits.  It has long been noted that dependence on the welfare system traps individuals in what has been commonly termed the ‘poverty trap: once caught in the trap of welfare you  are more likely to fall into debt  in order to meet living costs and suffer from a physical or mental illness’. To those who adhere to the view that being on benefits is an easy life,  I would point out who would logically choose to live in poverty with social stigma of being a ‘scrounger’ and constant demonization by the media?

There is also a wide spread myth  that benefits are easy to get and the criteria for gaining them is soft, for someone who is eligible for benefits I can state  that this is not the case as anyone who has had to tackle the labyrinth that is the DLA form can testify .

There is also a view that there is no sanction against cheating the system. Again this is not the case. If the DWP suspect you of wrongdoing you have to prove that you are not guilty during that period whilst all money is stopped until the matter is resolved and if found guilty you must pay all money back. In the most severe of cases one could go to prison.

In an effort to reduce the cost of the welfare state there is an attempt by the coalition government supported by labour’s vote on the welfare reform bill to toughen already stringent rules on claiming benefits. There is a danger that such a move could hark back to Victorian times of the poor house and  adopting harsher measures which will create divisive policies that give credence to  the idea of deserving and the undeserving poor.

Amongst the social and political elite one idea of how to fix our ‘broken’ welfare system is gaining momentum as evidenced by a speech given by Ed Milliand  on welfare reform in which he argued that for an individual to be in receipt of state support they must contribute to society. Personally I have nothing against the idea of active and participatory citizenship.  However I am deeply concerned that the barrier’s facing those with an  impairment or   disability in gaining employment or making a contribution to society are not fully recognised, leading to unhelpful comments such as those of Philip Davies becoming the norm and feeding into policy making process. This would set back the cause of disability equality decades. It is widely known that if you are disabled you are less likely than a non-disabled person to find a job. This I believe is due in inflexible practices and employer’s concerns surrounding the associated costs of employing a disabled person. Here are a few of my own thoughts on how to resolve these problems:

  • All members of parliament should attend mandatory disability awareness training with emphasis on understanding  the social model of disability to ensure better understanding of the issues facing disabled people.
  • Educating the public on why people receive welfare thus enabling society to have a more measured debate around welfare reform.
  • Recognise the cultural diversity that disabled people bring to the country eg. Social media, the arts, etc.
  • Widening the definition of employment and work to give proper standing voluntary work
  • P.A’s for care work to be given proper recognition.
  • Companies must be made aware of the full range of help available to them in employing disabled people and how it benefits their company – access to work
  • A greater flexibility in employment practices and welfare to work schemes

What do you guys think to this vitally important topic?

Richard Currie
richard.currie81@gmail.com

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Definition: The occurrence and development of events by chance in a happy or beneficial way

My interpretation: If you want something – do it. Despite the risks amazing things will occur

I have just spent an amazing weekend with my good friends from ‘Misfit Inc’ (http://thelacproject.com/) – AJ and Melissa Leon. Almost 2 years ago to the day an amazing act of serendipity occurred. Todays blog post is the story of an American couple, an English guy and the power of good acts.

Having struggled through my transition from university to home and then to London, my attentions had changed focus. I had spent nearly 2 years fighting for care funding, managing a care team, navigating around a big city with unfriendly infrastructure and finally breathing a sigh of relief. The one area I was not totally content was my life’s purpose having reached my dream of living in London. Sitting at a fundraising conference I happened upon a guy from New York talking about social media and changing the world. The feeling was and is unexplainable, but something lit me up. I carried on through the day and attended the other sessions feeling inspired.

That evening I sent an email to this guy from over the pond explaining I had been blown away by his talk and how much it resonated with me. I mentioned that I wanted to change the world for disabled people, but that working in a large organisation had its restrictions in revolutionising positive change. Yes, I can be inpatient. Later that week I was at the JTSMA conference in Stratford-upon-avon and received a reply. AJ and Melissa (his company partner and wife) floated the idea of meeting in a Starbucks to chat more. Could I dare to dream that my utopia goals could be a reality?

A few days later we met, chatted and dreamed. I said to AJ recently how I was unsure of dreaming as it sounded ‘unreal’, but that actually it’s fine if your dreams come true. They both have made this a reality for me. In that coffee shop www.martynsibley.com was sketched out, I learnt about Twitter, video blogs and so on.

2 years on as I wind down from my amazing 5 years at Scope, having learnt so much and met so many great people at the charity, I look back and see the serendipity. It is in:

  • Working for Scope straight out of uni and learning so much there
  • Being at that conference
  • AJ and Melissa managing to make the conference from the US
  • My sending that email
  • Writing over 200 blogs and videos about how I rock out everyday and overcome any barriers to do with disability or other – now I have 1600 amazing people following me on Twitter and Facebook
  • The emails and comments I receive from many disabled people and their families around the world
  • Launching www.disabilityhorizons.com with Srin, finding the talented writers, cool articles and new experiences
  • The experiences I had travelling to Mexico and California
  • The consultancy I have done for Hackney council, DisLib and so forth
  • The media tart I have become and love being – on BBC breakfast, the Hardest Hit march video, writing for Disability Now, the Times and I will stop there 😉
  • Mentioning my wish to do more exercise to my social worker a year ago. Then being told of an accessible pool nearby and improving my swimming over the past year. Having swam from 4-16 years old my spinal surgery stopped my ability to swim. Last night I swam for the first time unaided in 11 years!

I could go on, but you get the point. By working out what I want to do, understanding the barriers in my way, knocking them down one by one and trying; things do work out. I never planned to be starting my own social enterprise for disabled people, but it only happened because I never settled for something and then serendipity did the rest!

After a weekend of being yet further inspired, tooled up and drunk with the guys,  I am good to dream bigger and better. The next months will be tough not having a regular income, but I back myself and the world to make it happen. I am planning to enjoy my last weeks at Scope, attending Bob Dylan, Kings of Leon and Mumford & Sons concerts, before going solo. On Monday 4th July watch out for my Independence Day blog where I will share the big projects we are going to embark on together and change the world for disabled people everywhere.

Get your rest in, enjoy my blogs of the concerts and start dreaming yourself. Serendipity is waiting for you too, you just got to give it a chance.

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I haven’t time to either write, let alone ‘think up’ one of my big, thought provoking and world changing blogs today I am afraid. However having not written for a while I wanted to check in, say hi and bring you up to speed on the ever crazier world that is my life lately. Sorry, I hate people too who say “its just crazy”, but it bloody is.

Essentially I am plugging away on my final projects at Scope, gearing up for starting my business and developing insomnia. I think this is due to so many things going around my head. Understandable. I hope come July when I am concentrating on Sunnier Days, I can wind down on an evening and weekend, allowing some good sleep.

This said, I am feeling very buzzy, confident and excited about the coming change. I will dearly miss Scope after so long, but this is something I want to do and the time is right. Better to take a crazier risk at 27 without a wife and kids hey. For those wondering what I am actually doing – I am going to be focussing on delivering solutions for disabled people across all parts of life (equipment, care, education, work, travel and so on). Using new media and my personal experience you will see lots of cool new initiatives over the coming months. June is about working out my exact offerings, my costs (to still have a home and food) and to begin marketing. From July I will then have time to begin working with other organisations on improving life for disabled people. So many ideas, so little time!

I will continue writing my blogs and summer series articles. You just may have to bear me with this month. Since my last update, I was interviewed on bbc ouch for their podcast. It was around social media and disabled people. They billed me as the panellist out to make a million online. Would be nice but not likely. I explained how it is a social enterprise enabling my ideas to run sustainably, but not a venture to enable riches. I have also been approached by a production company following my relationships blog. I cannot say too much, I will not be ‘looking for love’ on tv, but watch this space on this one.

I did manage some work drinks and my friend Toby’s 30th birthday party at the weekend. All before a film fest Sunday and Monday, whilst I regained some energy before this week. With the accountant, bank manager, Local Authority and Access to Work caught up with the past evenings, I can relax until my strategy weekend with AJ and Melissa. This is always invigorating in terms of refreshing the website, magazine, direction and dreams for the coming months. The unknown is scary but intriguing. I hope you are prepared to follow the next steps of Sunnier Days, they are going to be huge! Catch ya soon guys…