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

Wow! What a week. Firstly, since my BBC breakfast appearance and more importantly the blog on the DLA consultation. General feedback from the ‘one month before heartbreak’ blogswarm has been positive. It received coverage on the following links, as only a starter and taster:

http://www.guardian.co.uk/commentisfree/2011/jan/18/disabled-protesters-one-month-before-heartbreak
http://www.goodaccessguide.co.uk/news/info.php?refnum=544
http://www.benefitsandwork.co.uk/news/latest-news/1285-protests-against-benefits-cuts
http://www.communitycare.co.uk/blogs/service-user-voice/2011/01/disabled-people-and-service-users-will-be-heard-we-will-be-listened-to-ombh.html#more
http://liberalconspiracy.org/2011/01/17/does-the-broken-of-britain-campaign-need-celebrity-support/

Thanks to Emma (TweetHandle: @funkyfairy22) for providing this information. Also Kaliya (TweetHandle: @Bendygirl) was on Talk Radio Europe speaking about Broken of Britain and the great campaign http://thebrokenofbritain.blogspot.com/2011/01/benefit-claimants-fight-back.html. Lets hope the government have taken note of this and reconsider their policy decisions around DLA next month, and indeed on disability issues generally!

In light of the recent cuts to government spending, we (Martyn Sibley of London and Richard Currie of Manchester) are writing to convey our deep concern at the affects they will have on the disabled people of the UK. We are only 2 of 10 million disabled people in Britain, but our views are by no means unique. This letter forms our contribution to a large online campaign – 1 month before heartbreak. Many people are blogging today to urge your good selves to consider aspects of the Disability Living Allowance and general disability reforms, and how they will truly work in the ‘real world’.

The DLA provides vital financial assistance for the extra costs incurred as a result of being disabled. The consultation is looking at tougher assessment criteria (to reduce the number of claimants) and even withdrawing the vital transport component of the allowance. It ends on 14^th February 2011. Furthermore there are discussions to disband the Independent Living Fund, assisting disabled people to live full, self directed lives. Please don’t break anyone’s heart on Valentines day. Or for that matter, ever!

We would like to start by acknowledging  the social, legal, economic, political and technological improvements of the past 50 years . With the social model of disability being enforced through laws and motions such as the Disability Discrimination Act and the UN convention , disabled people have seen vast improvements in societal inclusion. We both have had happy childhoods, met good friends, accessed our education system to Masters level and have ambitions the same as anyone. We personally strive for full independence using our electric wheelchairs, accessing social care provisions and using DLA for the extra costs we incur as disabled people.

As a positive recognition of the coalition government, we are glad you see the merits of Personalisation. The key here is that it may not be for everyone. With such a varying scale of impairments in the disability world, person centred plans are vital. Where possible, people should direct their own provision of services, giving them the flexibility, choice and control they deserve. When certain tasks and responsibilities are simply too much, this must be recognised and solved innovatively with brokerages and other support services. Really the crux of Personalisation is to improve disabled people’s lives, not to cut costs and corners. Please ensure there is enough money in the coffers. It is difficult to employ a PA to carry out care-work 24/7 under the minimum wage. Furthermore without the foundations of care in our lives how can we work, be financially sustainable, socially engage and be happy and healthy?

Unfortunately, even in 2011, this all has not resulted in full inclusion. Physically there are many buildings, transport links and leisure activities that are not accessible. Attitudinally many people still have cautious and incorrect views on disability. It is widely known bus and taxi drivers get agitated because a wheelchair user requires a ramp. Employers often feel concerned of disabled peoples’ ability to carry out a job, instead of assessing them on actual merit. We already need to improve a lot of things despite the progress made. So why make such regressive policy decisions?

With disabled people finding access to qualifications more difficult, trying to change attitudes and access to jobs in an already very difficult labour market, and having less disposable income because of the many extra costs incurred (more expensive travel methods, purchasing and repairs to necessary equipment, central heating costs, extra rent to provide space for PAs…), why slash DLA?

We know there are people claiming it who should not. We totally agree this should be stopped too. However is it the core reason our country is in debt? No. Is it fair that while stopping the fraudsters, people who really do need DLA are worried if they will keep it, worried how they will be assessed (we for one are not attempting to run on any machine to fall over and prove our disability), and others may not even bother applying when they ought to? No.

Furthermore, if you are to disband the Independent Living Fund, supporting 21,000 disabled people with their care needs, consider this. If local councils struggle to financially support 50% of our care now, how will they fill the void left from the ILF, when their overall budgets are being slashed as we write this?

The point is with so much positivity to celebrate, but with so much more to improve, why make decisions that will entrench disabled people back into poverty and exclusion? We say:

• Invest in disabled people with Personalisation social care, but for the right reasons. Listen to the challenges disabled people face, work with us to find solutions and be willing to fund this properly. In the long run, the spending and investment will lead to disabled people with better education, better skills for the workplace, better chance of being given employment (encourage remote working to become the norm when appropriate) and the means to live happy and fulfilled lives
• Acknowledge that DLA assists with the huge additional costs of being disabled – care and mobility. Stop anyone from claiming falsely, but in a way that doesn’t scare monger disabled people and doesn’t portray an image of lazy, slacking scroungers. Work with disabled people on the assessment methods and don’t break our hearts!
• Keep the ILF. Or at least find a plan to fill its void. One that will be effective. Do not cause unnecessary stress to those who rightly use it and will always require social care funding

Feel free to send any responses, thoughts or questions to martynsibley@hotmail.com and lets work together. The deficit can be cut and disabled people can be supported to live inclusively. They are not mutually exclusive occurrences.

Kindest regards.

Martyn and Richard

http://martynsibley.com/

http://thebrokenofbritain.blogspot.com/2011/01/more-one-month-before-heartbreak.html

And the BBC article……….

http://www.bbc.co.uk/news/uk-12176854

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?

I love going to the US. Everything always seems so straightforward and simple when it comes to all things “disability related”.  I have been to the US many times before and I find people over there just seem to “get it” when it comes to disability. By this I mean staff at airports know exactly what to do, finding wheelchair accessible cars or taxis is easy, hotel staff know exactly what a wheelchair accessible room is and wheelchair access is the routine norm rather than the exception, and I could go on with many more examples.

Orlando was great. It’s a place that brings out the kid in me that never quite grew up (and probably never will). I loved the beautiful weather, the pristine beaches, the ample quantity of food portions and the unashamed cheesiness of the enormous theme parks. I was even able to go on some of the rides in the theme parks (albeit the less cool and scary rides!), which were adapted to allow a wheelchair to drive right onto the ride.

The only little hiccup was on the first day, when I realised that a UK wheelchair charger requiring 220V supply does not work in the US where voltage supply is 110V. Even though I had been to the US before, previously I had always rented powered wheelchairs and hoists locally. This time however, I brought my own ‘Molift Smart’ portable hoist and Ottobock ‘A200’ collapsible powered wheelchair.  However, this being America, there existed a solution, and we found an electrical store which sold a step up transformer. Problem solved! Panic over! Holiday resumed!

Going to a country where accessibility is the norm rather than exception is a great experience. I did wonder why this was though. Some tell me that this is due to the pervasive and onerous nature of the Americans with Disabilities Act (as I write this post, I am yet to have read  the Act in any detail so can’t really say whether I agree with this or not), others tell me Americans in general are more willing to stand up (excuse the pun) for their rights and hence service providers have to ensure that any service they provide to a person who happens to have a disability is up to scratch. I am not sure what the answer is, and if there is an answer, it is probably due to a multitude of reasons. But what is interesting and somewhat ironic, is that in a country where state intervention and legislation with respect to social issues, which may place further obligations on the citizen or on a business are generally frowned upon (see Obama’s struggle with healthcare policy for a good example of such recalcitrance), the US in my opinion is far more accommodating for the disabled traveller than pretty much any part of “social” Europe. See my previous blog post on a trip to Brussels for a good comparison.

By writing this article, I have probably inflicted upon myself the bloggers equivalent of the “commentator’s curse” whereby next time I travel to the US it will be an utter wheelchair inaccessible disaster! Let’s hope not though as I am planning to go to California in November!!

The next leg of my travels is a two week cruise around the Mediterranean stopping off at various places in Spain and Italy, and no doubt will have some thoughts to share when I get back.

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.

This commitment is even more inspiring given that Anna, who has cerebral palsy, needs a powered wheelchair to provide her with independent mobility.  Her previous power chair, provided through local contacts would break down frequently, often leaving her stuck for several hours until her parents could arrange to pick her up. In March, Priority, working with Newlife funded a new powered wheelchair that will provide Anna with the independence she needs to get on with her life.

The new wheelchair is slimmer and better fitted to Anna. “It’s letting me do what I want to do and now I can chase the children at school!”

This September Anna is due to start her degree course in teacher training at Canterbury University and is very excited about going. However her local authority has still not confirmed that they will fund the carer that she obviously needs to be away from home and live independently. As her Mother says “the fraught experience of trying to establish how Anna can access support at university has served to show huge gaps between what the government promotes and how that is delivered at any local level.” Despite this Anna is confident that things will work out, but seems calmly resigned to the fact that there will always be a struggle when it comes to accessing the correct support that she needs.

This reaction comes from many frustrating experiences. At 4 years old, when applying for a wheelchair from the local authority, her mother was told “but she’s terribly young, does she really need one?”. Later, after an application for a wheelchair had been with the local authority for 18 months, they were told it had been ‘lost’.

More recently, when deciding which university to attend, Anna came away from one feeling that she just wasn’t welcome. They told me the course was “very stressful, obviously trying to put me off”. Canterbury however seems to be different, with good facilities to support Anna’s needs. But this simply highlights the different levels of service provision around the UK.

Anna’s mother expects this to continue: “Children’s services, despite all their own weaknesses, do at least have the impetus of statutory requirements (children have to go to school, must be cared for etc). Once you come under the ‘Transition’ team it seems you become a whole different ‘problem”.

The new wheelchair is allowing Anna to look to the future. Her Mother is delighted:

“Your donation, via Newlife, has made a real difference to us and the wheelchair makes it possible, in the vital, practical sense, for Anna to achieve her ambitions.”

It also meant that Anna could to go to this summer’s Glastonbury festival, where she saw many of her favourite bands, including Stevie Wonder. Fortunately the good weather meant there was little of the infamous Glastonbury mud to get stuck in!

Hannah already has a tricycle which she received in 2003 and which she absolutely loves but she has now outgrown it and it is also extremely worn on several parts such as the knee supports. Following a major operation in 2005 a trike is more important than ever to Hannah because she now has one leg shorter than the other and a trike not only allows her to exercise and keep fit, but also helps to straighten her leg which twists frequently.

Hannah’s Mum explained that a new tricycle was vital so that she could share outdoors activity with her daughter and because of the physiotherapy benefits.  She also mentioned that her daughter sleeps better when she has been on her trike and is less restless.  Perhaps most importantly, a trike provide happiness and fun and this she summed up by saying: ‘it brings a smile as wide as the ocean to her face.’

Priority , working with Whizz-Kidz was able to fund the trike, which Hannah received August 2009 and she absolutely loves it as you can see from the smile on her face.  The pictures below were taken in December 2009 and show Hannah on her beloved red trike.  Speaking of the difference, the equipment had made, Hannah’s Mum said:

“Hannah is very severely disabled and the bike provides one of the only ways for her to get exercise. It is also a great way for her to meet other children – kids who would be put off by her big wheelchair will come up to her when she is on her bike and ask questions or just admire it.”

Since his accident, Max has learned that, to achieve full inclusion of disabled people in society, 2 barriers need to be overcome: firstly, physical, and secondly, the barriers in peoples’ minds. This has led Max to become involved with many disability-related organisations, in an attempt to overcome real obstacles and prejudices.

Max’s fitness regime (using a reclining exercise cycle) led him to the idea of the Everything Is Possible In Life Cycle – a 714 mile-long campaign, riding a recumbent trike, from Aberdeen to London. He has been training since 2002 – most recently near his London home, on a specially adapted 3-wheeler to get used to cycling with traffic.

Max sees this as an opportunity to change how disabled people are perceived, and to begin to shift the attitudinal obstacles that he comes across daily, by communicating his positive can-do message to the public. So, he will be encouraging the public to ride a leg of the journey with him to demonstrate perception-changing in action.

Max Burt says “People with disabilities are usually perceived as having the common experience of being ‘less able’. This is perhaps the only reason why such diverse people are lumped together into one group called ’the disabled’. After all, what does a blind person have in common with a wheelchair user?

I hope that my journey, as well as highlighting the positive common experience that disabled people share in overcoming obstacles, will also celebrate the often ingenious abilities that disabled people have, and demonstrate that everything is possible. Now, I want to get this message across to as many people along my route as I can”.