Sunnier Days is the very personal name I have given to the ‘vehicle’ enabling me to make some of my ideas around disability a reality. Those close to me refer to my positive attitude, my love of sunny holidays and because my projects (the blog, work with Hackney council and DisabilityLib) are about improving things – Sunnier Days felt right and was born!

So what is this project about? You may remember last May I decided to find a venue, inspirational speakers and market an event for disabled people. My friends, family and blog readers gave positive feedback, however the guys in the BBC ouch chat rooms were more sceptical. I managed to get a great venue in Shoreditch – London, the BBCs disabled tv presenter Natasha Wood and disabled model Sophie Morgan, and 20 people attended! It was the first time I have ever done something like this. It was challenging, scary, great fun, uplifting and a big learning experience.

The feedback showed that there is an appetite for dissemination of inspiring and informative information to disabled people, their friends/family and professionals. The down side was the costs associated with hiring a venue, putting on catering and transportation to the event. I continued with my blogging, looked at social networking sites and pondered many other ways of providing a platform for debate, sharing and positive change around disability.

More recently the ability to run a seminar online was brought to my attention. Part of my new years’ excitement was around the prospect of running the Sunnier Days events (like last Mays), but straight to someone’s living room.

Having a disability called Spinal Muscular Atrophy I have been a member of the charity for my impairment since birth – www.jtsma.org.uk – (I was also on the board of trustees for 2 years). We have partnered up to launch this idea for their members and my blog followers. ‘Seminar in your slippers’ has been officially launched this week!

To see my cheesy promo video and to download the flyer with full details, please click http://www.jtsma.org.uk/seminar_in_your_slippers.html

Feel free to retweet this, email friends and phone anyone who might find this useful. I hope, even with a couple of tweaks from these 2 seminars, that ‘seminar in your slippers’ can become a great innovative way of delivering informative and inspirational details to the living rooms of the disabled community. Please do sign up, join us on the scheduled dates and provide feedback so we can achieve this!

Exciting times hey

In some ways this is no bad thing either. You can easily google for what the ILF is, their history and for policy documents on independent living. What is more difficult to find is the real way in which recent events affect an individual such as myself. While I am going about my intricately balanced but effective care based life, the seeds of doubt have begun to enter my conscious.

For those who haven’t read my blogs on my care: I require 24/7 care to enable me to hoist, dress, cook, clean and have personal care. My needs were assessed by my local authority who have an obligation to provide the services I require. I am also a member of the ILF who enable more severely disabled people to access additional funding, enabling a more independent life to be upheld. Through these 2 funding channels I commission and pay 3 people to cover my care rota through the year. Having this support ensures I not only eat, drink and wash, I am able to live a fulfilled life; both career wise and socially. Hopefully my blog captures this essence and inspires others to live life to the full too.

So when news arrives the ILF will be finished by 2015 my ears pricked up. I know there have been lots of consultations around government policies and budget spending, so I didn’t jump to conclusions. Then yesterday the fateful letter arrived explaining; they had written in June of potential changes, worked with coalition government on the options, Maria Miller announced the funds closure in 2015, they will be in touch to consult on how they will fill the void in 2011.

It is a good thing that as a service user effected I am meant to play a part in the next steps. However to take away half of my care package means I would ‘suggest’ to them (understatement of the century) something should replace the void. I can only see for the sake of simplicity that the local authority would just be expected to pick up the tab. However knowing getting the amount I currently have was difficult when I moved to London. Then with the recent government cuts for local authorities, is this really the case?

If the void is filled, I dont care in what way, I will be happy and continue life as I do. However having ILF stopped and being potentially moved to another framework is bound to cause teething problems impacting my life.

Should the void not be filled, the dread kicks in. With half the care package I would turn to my PAs and announce a pay cut. The likelyhood of anyone working 3-5 days straight for 24 hours is remote. They are great people and care for me deeper than just a job, but its not economically sustainable for them as people. So, then comes the point of would anyone of the right qualities work for this? No. Could I cope with less hours? As I need help to get to bed, to turn over in the night and to get up, I would need support for those hours. But then I need help in the day to use the loo, make drinks, food, go to work. This all before I might like to visit a friend every now and then… You can see the dilemma. At this stage I may need to move back to Cambridge after quitting my job and selling my flat, rely on friends and families good will, lose my independence and not be even a shade of my current self.

So whether an answer is found or not, there are a lot of worries and concerns I have right now. With 4 years to go I need to win the lottery or get rich quick. However apart from those options its a scary prospect right now.

What do you think to this and various other recent government announcements?

Arriving at the Best Western hotel, which Srin booked while we were in San Fran, we hit the same initial problem. Yep, the shower was not a roll in. On asking at reception there was nothing they could do and blamed hotels.com for the mistake. This was a moment I am well used to and Srin agreed that with 4 days left, bed baths would suffice. Srin complained after the trip and hotels.com apologised and gave him a voucher. He suggested we use this for a weekend travel next summer, maybe to Amsterdam.

Having the usual teething problems and mass unpacking session, we were struck by something new – sun and warmth. Having been so ill before the trip and with winter in full swing back here, it was a must have for me. Overall I was apprehensive (and it came to be true) that LA was more about areas with history, than something more specific or tangible. This history was also more around entertainment, movies and TV than politics etc. However we were all tired and well travelled so I think sitting on the beach, looking at the cool views of the coast and cruising through Hollywood/Bevery Hills/Sunset Boulevard etc was perfect. Checkout some of the pictures http://www.flickr.com/photos/martyn_sibley/sets/72157625513550662/.

The first full day we hit Malibu beach and Santa Monica Boulevard. The home of Baywatch and lyrics of Sheryl Crow, we were really living the dream. The Sunday we took a short drive up the amazing Pacific route 1 (which goes through San Fran and up to Canada). The views here were stunningly beautiful and we sat with our lunch feeling so inspired by the drive. Afterward we drove down Hollywood boulevard, but didn’t do the walk of fame because the xmas lights were being switched on in front of crowds of people. Having asked one cool copper where, we hit Hollywoods viewing platform at the Griffiths Observatory. This is where on the video I got carried away and did a cheesy martynsibley.com plug.

Monday we found Rodeo drive, Beverly Hills, Bel Air and Sunset Boulevard. We did a piece on the video for the Fresh Prince of Bel Air. I wanted a cocktail on Sunset Boulevard and knew it hit Malibu beach from a couple of days earlier. Having drove for 30 minutes around 4.45pm towards a beautiful sunset, not a bar was in sight. We found out the lively part was eastwards (the other direction) on Sunset Boulevard which was gutting. The good news was we reached the beach on our last night for this picturesque sunset and poignant moment for the trip.

We then headed toward Manhattan Beach, near to our hotel, for the last evening. One of my best times in LA was this area. One of the nights, we all had our favourite meal in an Italian/Greek restaurant there. We also found a truly American bar with sports memorabilia and a pool table. The people there were welcoming and it reminded me of a West Coast ‘cheers’ bar. I asked if Tina’s Margherita could be powered up with a little more alcohol. I thought the bar tender was mortally offended, but as I was chatting to Ted and Pete (my 60 year old mates I made through booze) the bar tender came around. Next thing he’s pouring extra shots and telling us we were cool UK/Austrian peeps. This night was also when I taught Srin he could play pool, checkout the photos of the grudge match. Tina and I vs Srin and Hugh. We drew 1-1.

Now the other almost spiritual part of the trip related to my teenage years. Please do not laugh but I was a bit of a wannabe gangster when I was 12 or so. The first album I bought was Warren G, Regulate and had to place my thumb over the ‘parental advisory’ label. Needless to say, loving my west coast rap such as Dre, Snoop etc, we had to visit Compton, Inglewood and Long Beach. We found KDAY 935 radio station for the pilgrimage to Compton on route to Manhattan Beach. Srin couldn’t believe I knew every lyric. My hairs on my arms stood up and I was buzzing. Sad but true. I was really living the dream at that point. “Westside!!!”.

On the last day I grabbed some souvenir presents for people back home, lapped up the last rays of sun, and felt a little nostalgic. I also turned my attention back to the UK and how to apply some learnings on the trip when home. At the airport we were delayed by 2 hours because of the snow back home. Security was a bit crazy, having to get touched all over and be swabbed for explosive traces, but hey its 2010 right. Tired and going through the mental preparation for flying – will they lift me ok, will my chair be ok, will my bum last the journey etc. Jack Black then comes through the doors. We all had to double take the situation.

Jack Black was amazing! I spoke to his wife, while the others chatted about movies with him. She was really cool too. Then I seized the moment and asked if I could be cheeky by filming him for my blog. He said sure and asked what it was for. I explained it was for disability and he launched into 4 takes as per the end of the trips video. I have since cut the smoothest version which is here http://martynsibley.com/jack-black-singing-martynsibley-com. Amazing. He took my card and said he will look me up on Facebook, fingers crossed. I grinned the whole flight home.

On landing in snow and 0 degrees after being awake 24 hours was hard. To add to this the car broke, again. Srins dad kindly dropped us off at the Long Stay car park to save my hands getting the ‘claw’ from the cold. We threw the bags in after he headed, I hit the button and… nothing! I was pretty close to panic with no sleep, the cold and my health. Fortunately the customer service office provided warmth and an eventual jump start. I slept so well that night and realised all is well that ends well. I may at some stage look more broadly at the US vs UK for disability, but for now this ends the personal accounts of this trip, an absolutely great one too J

I know people follow my blogs because there is some fun stuff and inspirational pieces from time to time, but I have appreciated others would like more detailed information. For example in the holiday video I shot how I am lifted from the plane to my wheelchair. The trip also highlighted the many extra things I have to plan and think about. Therefore my new beginning starts with the coverage of the California and Vegas road trip by giving hints and tips on how I manage travel with my disability. Clearly sometimes a blog is self expressive or detail is not required, but where possible, and beyond the travel vibe, I will breakdown the information in a clearer format. The fun and inspiration will continue too of course.

Regarding the 12 day trip with Tina, Srin and Hugh here is the link to the video http://martynsibley.com/video-california-and-vegas-road-trip. It lasts 9 minutes but is crammed with amazing shots of San Francisco, Vegas and Los Angeles. Allow it to buffer first for a smooth watch. I am then going to write 3 blogs over the next week:

1)      Planning the trip and San Francisco

2)      Las Vegas and how I lost it all

3)      Los Angeles and snowy flat car batteries

Another reason for a new beginning is the endorsement for my website www.martynsibley.com by a very famous actor. Checkout the end of the holiday video blog for when I met Jack Black at LAX airport. Absolute legend of a guy and the skit is perfect! Thank you Jack.

At 12.30 the chancellor took to the floor and began. The next feeling I felt was confusion. The onslaught of self justifying comments and numbers almost made my head implode. I managed to stick with it and draw out some of the main points. It seemed from my need for broader decisions that local councils will see large cuts, employment is preferable over people on benefits, a green Britain is a hot agenda item, social care and personal budgets are not being cut, childrens tax credits are being withdrawn from higher income families and many other points were made.

To home in and analyse some areas close to me would be around social care. The announcement of not cutting any budgets and backing the personalisation agenda is good. The problem is this issue is not just on money but strategy. While the money is vital the government still need to look at where and how they spend it. Furthermore the right support is needed to maximise the benefits of the personalisation agenda. I hope this is seen through as a policy as much as a budget decision.

The general points of getting people into work also concerned me. How a person is assessed is a landmine, especially with individuals who have fluctuations in their impairment. Furthermore even if a disabled person is attempting to find work, they along with many employers only see barriers in the way. It is fine to aim for those well enough to work to do so, but it comes back to education and awareness to the public on facilitating disabled peoples inclusion. Lastly, how about those who really cannot work, despite the fact they may want to, but their disability prevents them. How must they feel about their government today insinuating many negative connotations on them?

The decision around anyone on benefits receiving no more than the average household. This sounds ‘fair’ but what about the fact that being disabled costs more. I need to buy expensive electric wheelchairs every 5 years, if I go on holiday I require an accessible vehicle which costs more and I have to buy more antibiotics in the winter with my chest infections. So if I did not work, earned the ‘average households’ income in benefits, but needed the above – is this fair?

A last fleeting thought was around transport changes and a greener Britain. I couldn’t see any real initiatives to improve the infrastructure for wheelchair users, more details may be needed. However with this green agenda, which I fully support, there is a flaw. Disabled people often cannot access public transport. I can only use 1 in 3 tube stops in my home city of London. So in not using public transport I have a carbon footprint (wheelprint if you like) higher than the average person. So all in all being a disabled person could make me feel a drain on public funds and like a polluting maniac.

Fortunately I know I am none of the above. I am also aware I am looking at the examples to highlight where the decisions today were wrong. The fact is the deficit does need reducing eventually and the decisions could have been worse. A governments worse constraint is that of being in power as they cannot please everyone. The reason I have sensationalised some of the above is  because it is easy to agree with their comments on stopping benefit cheats. The problem is how to stop them without mistakes and adding stress to those who genuinely do need support. There is 2 sides to every coin and I am trying to communicate the other side to Mr O.

I believe with a little investment in myself and other disabled people the future is less expensive and better for the economy. As a supported, happy and understood person I thrive. As an unsupported, unhappy and misunderstood person I am less healthy in body and mind. This costs more to the public purse. When governments realise investment in disabled people, job creation and infrastructure pays off in their own arenas, the deficit will be a problem solved in the longer run anyway, but with less pain on those who least deserve it.

Yes there are aspects of life and careers that require absolute knowledge. For example, a neuro surgeon would rarely be required to have a good bedside manner with their patient on the operating table. I for one however, will never be a surgeon, nor do I wish to be. It would involve to much responsibility for one such as myself who couldn’t handle the pressure.

Correct me if I’m wrong, but I don’t think I’m alone with this stance. Ironically it appears to me upon reflection that most of the so called prestigious and powerful roles require more EQ than IQ.

Being no stranger to IQ tests, I know what they consist of. But I’ve come to the conclusion that my EQ is far more valuable than any mathematical garbled crap that I can solve on a spreadsheet. The reality of life is that people must relate to others.

For a disabled person to do so, they may have to open themselves up more than most. Having done so, I have found it has yielded much more than I ever gave. I have befriended countless people from all echelons of life and the common aspect of these friendships is that we are both open with each other. Looking back, it sounds stupid now but I used to be embarrassed about eating in restaurants because I was afraid of making a mess. But I was too proud to ask for my friends to help. Interestingly enough, even my closest friends wouldn’t offer to help for fear of insulting me.

As one gets older and wiser, I have tended to realise that honesty and openness are far greater tools than spreadsheets and pie charts. Being friendly, direct and truthful are the cornerstones of any successful life and career. Pussy footing around situations where both parties are unclear on what they should do, in any aspect of life will cause awkwardness and tension. My approach of being open and direct is not restricted to those I already have a connection with. Instead I use it uniformly and this had meant I have connected with many interesting and unique people.

This does not mean you will always stand eye to eye with someone but you will know where you both stand (pardon the pun). I can only offer my advice based on experience and suggest what’s worked for me. So let me leave you with this. Do you remember the teacher who helped you through your GCSE maths due to their brilliance, or do you remember the good friend who helped you through a trying time in your teenage years? Both are valuable, undoubtedly but I know which one has imprinted them self on me much more.

Who has had a greater influence on you?

Success.  A word that can mean so much, it can instil power within people, instil security, financial or otherwise and it can also ironically be quite the opposite. Being a disabled man and having been born disabled, I don’t think I have the linear view of success that most people do. Having a sports car or a private jet does not embody success to me. But, my brother has recently had a baby boy who is now 9 months old. For me, there could be no more successful man or woman (sorry for the lack of mention Emma) than these two. However, success like many intangible things is often more visible to those external to it, than to those who have actually achieved it.

To use my own life as an example of this, I have worked as a trader at one of the biggest and if I may say so myself, the best investment banks in the world. I managed risk on a daily basis and worked within several teams. For many this would be successful in its very nature, whether able bodied or disabled. For me however, it was a function of where I wanted to get to and was not the climax of a successful endeavour.

People have written endless books and articles about career defining moments, whether they be of a sporting nature like David Beckham’s goal against Greece or a business venture such as Bill Gates setting up Microsoft. I find it curious that these events often occur when people are between the ages of 30 and 40. So if this is a person defining age, what is next for me? The answer, to be honest, is that I don’t know. Having left the city, I do hope to set up my own company. Whether I can achieve this, only time will tell. Moving forward with Priority is also vital work that I need to continue to do. And this work is somewhat reliant on my success. So we enter what could be either a vicious or virtuous circle.

So what is success and why do we strive for it? Is it for others, is it for yourself? Or is it for the family of emotions that go with the accomplishment of achieving something? On this matter, I can only speak for myself. For me the act of doing and giving is more verifying than the act of receiving and I have become very aware that one must be careful of what one wishes for. So in my next ten years on this planet, I will set my goals as high as they’ve ever been, aiming to achieve what may seem impossible to many. I ask you the reader to contemplate what would make you happy?

So as a parting shot, I think the reader should bare these thoughts in mind:

That one should be proud of what one has done and one should never stop believing that a person can do more.

I have always said that I would love the readers to engage with my blogs more. My awareness of all things disability related is limited, as is my opinion. I would love to add more news from you guys and hear and reference some of your views too. I am just trying to give a platform for everyone to chat around these issues.

So having laid out a semi plea for some two way activity. My news is less news related or political. Will be interesting how ed milliband settles into the opposition leader role. Disability wise we await the CSR roll out soon and hope there is some mercy.

My past days started with a talk I gave for local councillors in Hackney on the roll out of Personalisation from my personal experience. Very interesting stuff. Then I returned home to 3 German friends – Rico, his girlfriend Chrissi and his friend Michael. We chilled Wednesday night. I worked Thursday/Friday as saving holiday for November and hopefully a big trip. Thursday I collected Grimsby Rich, my big dog, from Euston (thats gangster speak, not me saying I have dog at a train station). We returned home to Bratwurst sausages and the full german works J

Friday we honoured Ricos love of Nandos, followed by a drink in Stokey and some singstar. We all KO’d early as we were so shattered. After my needed lie in Saturday morning i felt great. My good friend Matt or @smegfirk as twitter peeps know him as came down to my flat with his PA. Video available here of the following events http://www.youtube.com/watch?v=PJdLYmFwjxE

I will not repeat the video but can say the hanging out with good friends, singing on singstar and the clubbing did me so much good. Since i squared it with myself about relaxing and not overdoing things, I have got myself back up to speed. The weekend showed i do need to chill after working but that a good night out is good for the soul sometimes too. I can say how later myself and Rich managed to annoy two bus drivers by requiring the ramp, and terminating the first bus hence annoying a lot of passengers. Basically the ramp would not go back inside the bus so we all had to get off at 3am and wait for the next one. Oooops.

I Had a massive chill and a massive roast dinner after the germans left yesterday with rich and myself catching up ‘uni style’ with tea and music tv. He went home today. Work was good today and I am all set for swimming tomorrow. Hope you all had a great weekend too. Will check back in soon peeps!

The afternoon was spent with Srin and the Vikster on the Southbank. The Thames festival was in full swing, the sun was out and we managed to chill out while catching up. It came to me how interesting the dynamics of being disabled is, the friends you have (disabled and not) as well as the bigger picture of the disabled community. For me personally I did not have so many disabled friends until I was around 11. I believe I have mentioned already I benefited from seeing I was not the only person in the world the way I was. Then at uni I lived with other disabled people and met one of my best mates in the world – Grimsby Rich. We get on in so many ways and part of it undoubtedly is having an empathy some of my other mates just could not. Rich and I are also great mates without our disabilities, as we just click.

Kicking it with Srin and Vik opened up some thoughts around disability, how we approach this and some of our personality traits. Us 3 all have SMA and so in theory are very similar. Sure, physically there are similarities but we have different personalities, jobs, sense of humour and even views on our SMA. The following part of the blog is not of our conversation but some thoughts and observations I have had since. Really our chat was quite brief and mainly how we approach care. We then moved onto eating our Nandos, but it planted the seed of thought that has grown into this blog.

Its actually obvious to say disabled people will have different occupations, interests, personalities etc. Another point that is obvious (but fair to mention alongside this) is how different impairments make disability a very varied thing. Someone in a wheelchair to being deaf, dyslexic, having ME and so forth will have massive differences in the effects to them as a person. The point of where all this grabbed my thoughts is around solutions to disability or indeed government decisions around social care and benefits. Clearly generalisations have to be made, but when people have ‘normal’ but varied traits (loud, quiet, shy, outgoing, thoughtful, practical, etc)  - a one size fits all approach is hard. Support for a wheelchair user being a builder is a different matter to a dyslexic teacher, yet both should be possible. Furthermore someone who is blind needs a totally different care package and financial support to someone with ME.

Clearly my area of experience and ‘strength’ is from a wheelchair users perspective. Having ‘generalised’ in some of my blogs I was right to learn of other impairments and know my blogging limitations on disability. However I do feel sometimes the disabled community can accidentally knock the points a person makes on a specific impairment, to enhance the profile of another part of the community. For me, to enable the government and other key decision makers to make the right solutions, the disabled community has to find its own common ground.

In acknowledging different impairments, acknowledging different perspectives, observations, viewpoints, opinions, approaches and other human traits would be a good start. Then to find the overarching objectives and similarities is the next step. There would be no need for shouting to represent a particular impairment, no need to push the agenda of a shy disabled person over an extravert, or indeed advocating for a ‘poorer’ fraction of the community over a ‘wealthier’ part (to generalise). This answer would allow for all impairments, all personalities, incomes and types of lifestyles to live fully. Only then will the government be hearing one loud, inescapable lobbying power. Until then I worry the smaller voices representing different parts of a massively disparate group of people will counter act itself rather than achieve the overall point – the right policies for each and every disabled individual!

I do not know of this overarching solution and stress these are just my personal thoughts over the past months. I would love to hear if you as a reader think this approach is flawed, could be tweaked more or you agree with its sentiments. The gold at the end of the rainbow is not coming tomorrow, but I believe to consider the disabled community in this way enables a more holistic way of reaching it sooner.

Thats enough heavy stuff for Monday night! Off to watch the Inbetweeners now