Making the Impossible Possible

I am not sure where exactly it came from but I always had the drive and determination to achieve anything I set my mind to do, regardless of the limitations and barriers that were in my way. It was not until I was involved in European Human Bridges (EHB), the European disabled and non-disabled youth project I have previously discussed, that I fully realised anything was possible.

EHB was run as an informal organisation of like-minded leaders across Europe, who worked together to bring disabled and non-disabled people together for week to 10 day long seminars, funded by Council of Europe and European Union. An example of our seminars was the one we ran on the black sea coast in Romania in 2002 on the issue of Disability and Sport.

It is important to understand at that time, and still probably now, Romania is not very accessible and the hotel where we were staying had a lot to desire. But the whole ethos of EHB was about overcoming barriers and so our motto was ‘Making the Impossible Possible’, because together and with our combined determination, we seemed to overcome any barriers to achieving a successful seminar, including the many unexpected difficulties that arose.

The motto of ‘Making the Impossible Possible’ has stuck with me and remains central to my own working ethos. I strongly believe if you really want something, it is possible to get it but you have to put in the work and commitment to achieve the impossible and make it possible. This means as a disabled person, while I will always campaign for better and easier access to various opportunities, I can not let that stop me achieving what I want right now.

I need to take responsibility for what I wish to achieve and I can not just sit moaning for opportunities to be made easier because I am not willing to put in any effort to get what I want. If you have a negative outlook in life, of course you are going to fail. People need to be positive to be able to be successful in what they wish to achieve and I understand some people will need specific support to see the brighter side of life at specific times.

I have found some disability activists find it difficult to accept the need for a positive attitude and are wary when the achievements of disabled people are celebrated, especially by the government, calling such things as ‘aspirational porn’, particularly the government’s recent Disability Confident employment campaign. While I can understand people often put disabled people unnecessarily on a pedestal to reinforce the notion of ‘other’ from deep rooted pity, it is important we celebrate what disabled people have achieved and can achieve on an equal basis to non-disabled people, as well as promoting a positive attitude to manage the here and now, as oppose to waiting for a disability utopia that may never arrive in our lifetime.

I am proud of my many achievements, which any of my non-disabled peers could be envious of, because I have made the most of my opportunities provided to me, and many of the opportunities that were supposedly inaccessible to me. I have always done what I wanted, taking responsibility for my actions, because I was determined I was not going to let my impairments or any other difficulty get in my way. I know that I have a level of determination some people genuinely find breath taking, and I think if people can be supported to have just a fraction of my determination, they could make the impossible possible in the way that works for them.

Being aspirational is not something that should be feared or sneered at as some patronising nonsense, but rewarded and celebrated as the foundation of positive change. Everything in the world throughout history has only been achieved because someone was willing to make the impossible possible, broadening our horizons, our expectations and our abilities.

What will you do today to make the impossible possible?

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Being Proud at 40

On Sunday I celebrated my 40th Birthday, and this has given me an opportunity to reflect on my life and what could have been. As someone with cerebral palsy, I have achieved a great deal and certainly far more than what was expected of me, and more than the average person. I always had high goals and while I do not have the amount of money or the mansion I had wanted, I have a voice and a network of friends and colleagues I have worked hard to build that makes me ‘powerful’. I wanted to be the next Bill Gates, but I have become the first Simon Stevens.

While anyone could reflect on their achievements at 40 in this way, I think it is important to understand where I could have been if I had turned 40 in 1974, 40 years ago. I know anyone can argue that without the technology of today, their lives would have been different, my life would have been affected by a profound difference in the way disabled people were treated and managed in that period.

The first question to consider is would I have been alive at 40? With less developed medicine and poor levels of social care, I could have easily died from pneumonia or another type of infection, something people with cerebral palsy can be prone to, long before I reached my 40th birthday. If I had reached it, it would be almost certain that I would be living in some form of residential care, or even a long-stay mental hospital.

With possibly a typewriter as my main method of written communication, where there is no delete button when I frequently accidently press the wrong key, I would certainly not be employable, or have any kind of meaningful voice, not in the way I have now. My drive and determination may have made me the king of my environment, but in terms of the general public, I would have remained a lost soul, just another bundle of potential born at the wrong time.

It is the knowledge of how things were in the past for people similar to myself that drives me forward with an appreciation for the amazing opportunities I have, and I believe this is why I have seized every opportunity I can. My life has not always been easy, and I have made plenty of mistakes, but I have appreciated the fact I have been empowered to make my own mistakes and take responsibility for my own actions, something that is still not afforded to many disabled people by their families and others.

I have witnessed the liberation of myself and other disabled people during my lifetime, a period of change central to disabled people’s history. The new opportunities and improvements to my quality of life over the last 40 years have been absolutely amazing and I very much appreciate what I have. This is why I get frustrated at disabled people, newcomers and old timers, who complain about the situation we have today in terms of transport, accessibility and other issues, without showing their appreciation for what has been achieved.

Of course the current situation for disabled people is not perfect, and I have made it my life’s work to play my part in improving matters in any way I can. But if we forget to celebrate our achievements and the sheer wonders that now exist for many disabled people, then we can not move forward, remaining stuck in our own resentment.

I enter my 40s in a far more stable and happy situation than when I entered my 30s. I remain proud of what I have achieved, who I am and most importantly, where I am heading. I have overcome my difficulties with drive and determination, and with a commitment to assist other disabled people to achieve their ambitions and take advantage of the many opportunities available to them in the way I have.

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All Same All Unique

During the 1990s Council of Europe organised an anti-racism campaign called “All Equal All Different” as a part of their human rights education remit. They repeated the campaign a decade later but widen it to include all equality issues, including disability, and I am proud to have been involved in the campaign on behalf of European Human Bridges (EHB), a youth project running week long seminars across Europe for a number of years for disabled and non-disabled young people.

Within EHB, we had come up with our own version of the term “All Equal All Different”, which was as you may have guessed “All Same All Unique”. It is important to understand that my involvement within EHB was extremely important to my personal development as a younger disabled person and a lot of the values generated by the project remain central to my current values and therefore my way of working. So I see “All Same All Unique” as one of my core values, that is we are all the same and yet all unique in our own wonderful ways.

I do not regard this as just one of those feel good statements that bears no relevance to the real world, but a central idea to creating an fully inclusive society. I just had to stop myself saying ‘an equal society’ because while I believe in many of the components of equality, specific kinds of equality can lead to conformity and therefore stifle uniqueness. Like a lot of things in life, true equality is a contradiction because we are all different and can not be treated the same in some respects since we are unique, although we are all the same in our uniqueness. We all have different parts to play in the big movie of life, whether that may be the cleaner or the chief executive, which the bigger picture values equally.

For social policy, and particularly the daytime activities of disabled people, including paid employment, it is about balancing the fairness of opportunity and treatment with the understanding of people’s individual and unique abilities, strengths, difficulties and weaknesses. Supporting unique individuals can not be a numbers game and this is why ESA and other benefits are flawed, as well as increasingly toxic as the demand for equality of opportunity grows.

But balancing a desire for flexibility and personalisation from unique individuals with the need for fairness and transparency requested by society is probably going to be one of the hardest tasks to achieve because when you take away the numbers, you are left with subjective opinion from individuals, assessors, policy makers and opponents. While everyone can be provided the same opportunities at a specific time in our lives, only individuals themselves can choose to take up these opportunities, and this will have an impact on the support they may or may not need in the future.

Does society support those who have not made the most of the opportunities provided to them and/or struggling? Or reward those who are achieving to go further? The fairness of support will always be a headache to achieve because of the fact we all deserve to be treated the same, but we all are unique in our journeys.

I know I have more care and support than many people with my level of impairment, although I work and I am driven to make a bigger contribution to society because that is who I am, rather than anything I have chosen. This does not make me special because I just follow my journey. While I always received the level of support I needed, it used to be because ‘independent living’ was in fashion that year or because people feared me when it came to the bad times. It took years for my social services to understand my outcomes and why I needed the support I did since it did not fit into their idea of what disabled people needed. Because of the work of one very good social worker, who remains a good friend and colleague, who was prepared to go into the Lion’s Den and understand my uniqueness, I now have a support plan that is about me, and anyone reading it is now reassured as to my needs.

I think “All Same All Unique” is a great phrase to convey the complex nature of equality to a wider audience and it is relevant to all aspects of society and situations.

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Daydreaming of ‘Support England’

I have always been a daydreamer since I was a child, thinking up big ideas to how I would improve a specific company, or part of the government, in great detail. I think it may be a part of my mild bipolar, a way to focus my thoughts, as well as solving the bigger problems in life. One of these big ideas I currently have is ‘Support England’, which is my solution for the future of social care, as well as disability related benefits. I thought in the month another Simon Stevens has started his post as the chief executive of NHS England, it would be apt if I shared this idea with my Huff readers.

The central idea is to take the money from all the disability related benefits and social care, too many to list here, and put it into one single pot that people can access via one locally commissioned assessment based on individual outcomes and needs. The idea is nothing new and Labour has shown its interest in the idea for a potential manifesto commitment, but I am unsure if anyone has figured out how to implement it, and this is why I am currently preparing a detailed report on how it could work and this is where Support England comes into play.

I will not bore you with the finer details, especially as I am still working it out, but basically Support England will be the governing body for funding, setting the guidelines and standards, supported by a network of local bodies like “Support Coventry” who will commission assessments from local specialist teams, who will simply do assessments that are funded by the local body. Support England would solely focus on funding issues, and will have a sister organisation, “Assist England” that will focus on the commissioning and regulation of social care, transforming the care and support agenda to a support and assistance agenda, focused on outcomes.

The single payment/budget will only be available to people with a longer term need, but there will be a greater focus on ‘free’ discharge, rehabilitation and enablement services to ensure people get what they need when they need it so they can effectively reach their maximum potential, or reach a point of stability in the loosest sense of the word. At this point, there will have one main assessment from a named and contactable person who will actively coordinate their application.

Most importantly the assessment will not be interested in people’s medical history, but instead focus on individual’s specific outcomes, their impairment specific difficulties in meeting their outcomes, and what they specifically need to achieve their outcomes. The way the funding is provided will be as flexible and as clear as possible, designed around what works for individuals, but will be for a fixed but flexibly decided period of time, where reviews and reassessments take place before the current funding finishes.

If my idea were to happen, it would be one of the biggest changes ever to happen to social care and the welfare state, requiring everyone involved to work and think differently. Paid work will always be one of the things that is likely to be discussed at assessments, understanding there may be a long journey of personal development and other support needs before some people reached this goal, if at all. But people’s emotional development will be a big part of any assessment, something that has been lacking in the ESA and DLA/PIP assessments.

I strongly believe there will be huge long term benefits for the inclusion and equality of sick, disabled and older people. By moving away from label based benefits that a award arbitrary figures that have no bearing on individual need, and reducing the number of assessment some individuals are subjected to, any government can ensure best value that dramatically improves the life opportunities people have.

It will not be easy but I do believe Support England is the way forward and I think it is only a matter of time before my idea becomes a reality to some degree.

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There Is a Big Different Between Charity and Begging

While I have concerns at how some charities are run, I do recognise the about of good many charities have provided individuals, in a matter that is open, accountable and legal, as formally constituted organisations. Even if a specific project is not linked to a charity number, it is often in their best interests to be open and transparent about their activities, especially it is now so easy to look on Google and find out everything you can on them, good or bad.

Many disabled people require specialist equipment, technology or other assistance in one way or another, and it is not almost possible to get this from NHS services, Access to Work or other government schemes, and so they need to apply to charities for assistance. There are plenty of charities willing to help in ways people may not even expect, and the hardest problem is often finding out about the charities. I have been collecting information about organisations and charities for over 20 years and I am still finding established charities every day to add to my collection.

One thing that most disabled people however realise is a definite no no, in the ethics of being disabled, is directly begging to the public for money to purchase personal items. We all use our ‘disability’ in one way or another, such as jumping the queue in a bank, in the same way women sometimes used their gender. My attitude is the small benefits I have to being disabled, will never outweigh the disadvantages within my lifetime, so let karma do its work. But begging to your peers for things everyone could benefit from, like laptops and tablets, is taking the biscuit.

While I can totally understand homeless people asking people for change, and I saw a lot of disabled people begging when I visited New York, but they did it with some dignity like it was a proper job, in a country that does not have the same welfare system as the UK. I can also understand families and friends of disabled children, who wish to fundraise locally to purchase an essential piece of equipment the state is refusing to provide, because it is often very clear and open to what its for, and accountable to that community.

But when disabled adults are ‘crowd funding’ because they want the latest top of the raise tablet for their own personal benefit, then I think it is crossing the line for a number of reasons. Firstly, if they are on ‘out-of-work’ benefits, then they need to declare the money they raise as income to DWP and HMRC, otherwise they could be regarded as committing benefit and/or tax fraud, especially if we are talking a few hundred pounds raised in a few days. Secondly, if they receive ESA for being unfit for work, the fact they are able to fundraise may demonstrate that they can in fact work, again triggering alarm bells with DWP.

Finally, we can not become a nation where it is acceptable for anyone to crowd fund whatever they want, especially when people are supposedly unfit for work, or indeed unwilling to work, but expect those who work to directly fund their lifestyle through donations, as well as indirectly through taxation to pay for their benefits. If all crowd funding websites become is a ‘x-factor’ of sob stories as people directly compete for heart strings without the accountability of charities, then it will become a mess that will remove the incentive for anyone to work as people become increasingly dependent on socially acceptable begging.

I know that I have recently tried ‘crowd funding’ to fund my virtual disability themed nightclub ‘Wheelies’ although I am self-employed and while this project is not linked to any registered charity, its’ public benefit is well established and documented. The club does not make money and comes out of my own pocket, so I believe it is appropriate to seek funding. I also recently put a donate button on the top of my website, on every page, with the thinking that I have written a lot of useful materials that I make freely available on my site, and if people wish to make a small contribution to my running costs, they should have the option.

But I would never dream to trying to fund my next tablet by begging my peers to pay for it, assuming I was someone special, and I feel it is certainly crossing the line of decency. If I did feel I needed help funding my technology, then I would look at approaching charities, who can judge my eligibility accordingly.

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