Being disabled does not have to be boring @calvertexmoor

Within the mainstream, and indeed disability, political arena, it could be imagined that being sick or disabled is a boring negative affair of endless forms and assessments, hate crime, bedroom tax, discrimination at every turn, and general disappointing prospects. This is how the media and the welfare activists like us to be portrayed, but living as a disabled person certainly does not have to be as boring as they paint. I can look back at my 41 years of life with a smug satisfaction that I have made the most of it. I have travelled extensively, enjoyed a wide range of sports and adventurous activities, had the opportunity to work with many organisations and dabble in a wide range of professional arenas from training to comedy, and made friends from around the world, and from all walks of life. And the best part of it all is I do not stop adding new experiences to my vast pool of fond memories. Just this weekend, I spent four days at the Calvert Trust in Exmoor, doing adventurous activities, many I have not previously tried. The Calvert Trust has three centres around England, in the Lake District, Exmoor and Kielder. The centres provide disabled people with a wide range of difficulties, including those with very high needs, the opportunity to try a huge range of adventurous activities. I have previously assumed the centres were slightly too tame for my liking, but welcomed their invite to try them out, and I was happily glad to be proven wrong in this respect. During the weekend, I took part in the Challenge Course, Forest Skills, Climbing crates, the ‘King Swing’, Canoeing and the Zip wire. I am an adrenalin junkie and so the King Swing and Zip wire were my favourite activities, as you can see from the video below, taken by my volunteer PA, who enjoyed the weekend as much as I did.

For me, the weekend was a nice break from the stress of work, and the whinging of activists who seem to use their impairments as weapons of mass misery. The centre had many guests staying at the same time I was there, from all ages and with a range of difficulties, all enjoying themselves as much as I was, without a whisper of negativity. And this is how it should be, seeing difficulties as challenges to overcome as oppose to excuses not to try. What really inspired me was being able to feel and visualise the many happy memories that clearly existed throughout the centre, since it was open in 1996. I can imagine so many young disabled people, with a range of needs, discovering themselves and their real inner ability through the opportunities the centres can provide, not just formally but informally through the intense social interaction any outward bound experience provides. While it was my first time at the centre, it brought back fond memories of many similar experiences I have had when I was younger and emotionally growing. I believe the Calvert Trust, and places like it, can play an important role in supporting people with their emotional journeys. If more sick and disabled people had the opportunity to experience the outward bound culture, even if they were not initially keen, I am sure it could be life changing and a game changer in how they regard themselves and their ability to contribute to society. I left the weekend slightly stronger emotionally than I was, as someone already very strong, and I know these experiences make us all stronger. Being disabled does not have to be a social death sentence, and disabled people can achieve as much as anyone else in their own way, or as much as their imagination will let them. While not every day can be full of excitement, it is important to keep the fire of our spirits burning with passion with periodic bursts of doing something different. And for me, my excitement is not over as next weekend, I am staying at the Bond Hotel in Blackpool, a seaside town I have never visited in the summer.

What Does Independent Living Really Mean for Disabled People?

Labour’s election manifesto talks about disabled people living independently, but only relates it in terms of those who appear capable of working with support, framing the issue in terms of welfare. All the political parties, and indeed the majority of welfare activists, appear to divide disabled people into two main groups, depending on whether they need ‘social care’ or not.

Those who do not need social care are deemed as capable beings, whether they can work or need ‘the security of the welfare state’, that assumes their benefits are all they require to be satisfied with life. Those who are seen as needing social care are for the most part regarded as the property of their families, under the guise of ‘carers’. In this context, the political focus seems to be about pleasing the family, not the individual, who needs protecting as a vulnerable member of society.

The social care agenda is fixated on older people, and looking after people who are regarded as incapable of thinking for themselves. While successive governments in recent years have talked about offering ‘choice and control’, the financial lure of integrating social care into its big brother of health is likely to reverse anything that may have been achieved. While everyone appears to be against 15 minute calls, the alternative could be task-oriented calls that are not only shorter but provides users with less control as the system is swamped with health related goals.

Within the group of disabled people deemed incapable of personhood by needing social care, is the traditional independent living movement. Independent Living has remained for the most part a privilege of the lucky few who by circumstances and opportunity, have had the attitudes needed to secure the funding they have required to break the mould and make a contribution to society when society, including politicians and welfare activists, does not expect them to be anything more than unemployable ‘burdens’ in the name of compassion and fairness.

Many old guard independent living activists have incorrectly focused on the funding of their care and support as the measure of living independently. While care and support, particularly for those with high support needs, is a crucial component, even by the movement’s own understanding, it is just one of 12 needs, and even then, I believe it misses the key component to independent living, and that is attitude. The fated Independent Living Fund may provide funding to high cost support packages, but I doubt if a fraction of its 19000 users are actually enjoying true and meaningful independent living.

Real independent living is not something that can be bought, but it is something that can be taught. It is not just about raising the expectations of disabled individuals, but also the expectations of their families, friends and the professionals that work with them. Too many disabled people are denied the taste of independent living simply because of the attitudes of those around them, regardless of their wealth or how many hours a week care and support they receive.

Independent Living is not about where you live or if you employ your own support staff, nor are there any socially recognised norms that shows someone is living independently. Instead, true and meaningful independent living is about a belief any person has that they are able to take control and responsibility in their lives in the same way as their peers, including the same restrictions, and interact with society as an equal citizen. It can be about being determined to achieve the impossible, or simply plodding along happily, the possibilities are only limited by our imaginations.

It is time politicians, activists, disabled people, families and others revisited their understanding of independent living, to see how it can be achieved for a 21st century society. Keeping independent living framed as just a funding issue is not helping anyone, especially as the priorities of social care are changing once again, away from choice and control. Instead, independent living is central to how all sick and disabled people are woven into the fabric of every aspect of society, and it needs a new generation of independent living activists and leaders to take it forward.

from Simon Stevens

Does Peer Support Always Help Disabled People?

When we have a problem, any problem, it is good to talk with people who are having or have had the same problem so we can share experiences and learn from each other. This is often referred to as ‘peer support’ and for a long time in many situations, it has been formalised and funded accordingly. This has included local groups set up by disability organisations on issues like employing personal assistants, parenting and so on.

I have tended to avoid these quite sterile face to face peer support groups because even with a good facilitator, I know that my confidence and knowledge means I am most likely to be giving as oppose to taking at these meetings. And often because I am perceived to be super-independent, it is assumed I do not need support myself, which I clearly do, even if it is at a different level or in another context. With all this said, over the years I have provided peer support online to many friends who seem to see me as a better source of help than any funded helpline, especially on a Sunday! My friends, not always the same friends, have also supported me, especially when I have been emotionally fragile, which until six years ago I had not understood to be a part of having mild bipolar.

I believe the key to successful peer support is a good facilitator, having someone either professional or experienced, who is able to leave their own baggage at the door and support other members of the group to duly work through their issues and come out the other side whole. People in despair do not think straight and so if a group of people in despair are left to their own devices, they can feed upon each other’s despair, building a paranoid understanding of the situation, which is not helpful to anyone.

I feel the internet, social media and particularly Twitter has enabled a new kind of unfacilitated informal peer support to develop and grow, which is potentially dangerous and harmful. Twitter is a marvellous tool that enables us to connect to people in new ways, based on their opinions rather than location or social status. While this can help us to broaden our minds, it can at the same time make us very insulated as we surround our mental and emotional space with people that only share our specific view of the world.

While this is very natural and in most situations, very helpful in feeling we belong somewhere, if people in distress or despair build a social framework around them that prolongs their negative emotions and stops them from moving forward, than it is not helping them at all. The journey of any change, especially unplanned change, such as the onset of illness and impairment, will have its emotional highs and lows. We are in control of how to respond to them and so we can choose to make a career out of a particular low point if we choose, even if we are unaware of this at the time.

The aim of properly facilitated peer support is to support people to move pass the low points, as well as celebrating the high ones. But if peer support is only used to wallow in self-pity, especially where there is a political agenda attached to this feeling, than it is helping no one in the long term. It is ironic that while many people with addiction issues are big advocates for peer support, with the numerous ‘something anonymous’ programs, an endless need for self-defeating peer support can be an addiction in itself.

It is never easy to tell people what they are not ready to hear, despite how obvious it may appear to us, and this is often my greatest frustration as I see people using blogs and Twitter to unknowingly emotionally harm themselves and others. And to a degree, I am not worried about their actions specifically, but rather those around them who should know a bit better in not feeding their appetite for distress and despair. Unfortunately, and the saddest part of it all, is the distress and despair of disabled people is now woven into modern politics and how this election is being fought on all sides.

from Simon Stevens


Inclusion Comes From Within

I first came across the ‘Disability Movement’ when I went to university in 1992. As someone who had gone to a mainstream school and was at an age where I was trying to understand who I was as a disabled person, I looked to the movement for guidance and support. I was very disappointed to the response since they appeared to have a self-loathing for themselves and bitterness towards non-disabled people that never sat well with my positive nature and approach to life.

The next 23 years has seen very little change and I have continually battled against the disability movement and their hostility. While they talk about independent living and inclusion, their behaviour suggests they prefer self-segregation and self-indulgent misery. Their collective argument to everything is more money and that society must be ready to ‘properly’ include disabled people before they are willing to take part fully within society. But of course transport is never accessible enough, employers never have the right attitude and hate crime is always rising.

I have always had a more individualistic view of inclusion. By this, I mean I believe only I can decide if I wish to be included into society. I always had a naivety to what I could and could not do, and I can honestly say that I have always found a way of doing anything that I put my mind to doing. I look back at some of the amazing and often crazy things I did in my life, the traveling and other adventures that are too numerous and interesting to explain here, and I am personally proud that I made the most of my life and I have no regrets.

I do not ask or expect many people to follow in my footsteps, hoping most people can avoid some of the mistakes I have made, but I do want others to have a greater belief in themselves. Inclusion is not about money, although that helps, but rather personal attitude and expectations. People can have all the support in the world and still be excluded from society, because if they do not have the desire to be included within society, it will never happen.

My biggest problem with the current range of welfare benefits and other support for disabled people as that as a whole, they are passive. This means they are simply paid unconditionally with no desire to actively develop the wellbeing and inclusion of disabled people. Money will help people who already have a desire to be included within society, but it does not actively enable or empower disabled people to desire inclusion. This goes for the sainted Independent Living Fund as much as any other pot of money because it only enables existing desires whether that be independent living or simply being looked after by ‘mum’.

If society and politicians are serious about the true and meaningful inclusion of disabled people, and I am yet to be convinced, then we need a whole range of policies within health, employment, education and social care that is focused of delivering people’s own understanding of themselves and what they are capable of doing, enlightening the fighting spirit that I believe exists within everyone. I believe it is also important to recognise when ‘can not’ is actually the personal choice of ‘will not’, which is not always a bad thing as everyone has their own story that can not be necessarily judged by others.

So the key to inclusion is not more money or less social barriers, but a self-belief in one’s self. I feel fortunate that I seemed to have been born with that self belief, or perhaps not allowed others to take it from me, and that in reality I have always included myself within society, whether it was ready or not. But I have never been concerned for myself, but the many disabled people who do not have that self-belief.

from Simon Stevens


Do People Really Have a Right Not to Experience Stress?

I believe we live in a time, within the UK especially, where we enjoy a quantity and quality of life opportunities and experiences that are greater as a whole than in any time in history when we take into account a whole range of factors. Technology alone has continuously changed and improved our lives at increasingly greater speed, endlessly providing us with opportunities and experiences our previous generations would find unimaginable. Socially, we have more rights as individuals and society has as a whole a greater acceptance of the diversity of mankind.

But I would like to suggest that there is one right some people appear to be demanding that will always be impossible to achieve without curbing the freedoms we enjoy, and that is the right not to experience stress. What I mean is I believe that some people assume it is the responsibility of the government and other bodies to eliminate factors in people’s lives that cause them stress, where stress can be seen as the emotional and often physical effects of difficult situations.

The third certainty in life, behind death and taxes, is that things are going to go wrong and probably when you least expect it. And when one thing goes wrong, it is likely to cause a domino effect for a whole raft of other things to go wrong. If someone is in a car accident on the way to an airport to go on holiday, they are going to miss the flight and the holiday, although their priority has to be their health. Depending on how serious the accident is, their life could be turned upside down with bills not paid, appointments missed and so on.

Eventually you would hope they will get things sorted and their travel insurance will reimburse them for the holiday, unpaid bills will be settled and normality will resume even if it has changed. But this may take time and I believe there is probably very little anyone can do to avoid the stress caused by unexpected accidents. Airlines and tour operators can not spend all day checking if their passengers are in car accidents to be ready to refund them before the ambulance arrives or delay the plane indefinitely. Service providers expecting to be paid can not read our minds if our circumstances mean we can not communicate with them, especially when they are not exactly a priority.

But when I read some of the articles about how DWP is failing welfare claimants, the media seems to be demanding that they work miracles. If someone is required to attend a meeting and for some unforeseen reason they can not attend nor communicate with DWP for a specific period, in the name of fairness to the rules they will be sanctioned, because by not communicating so far, they have acted in the same way as someone just refusing to attend. It is hoped that it will all come right in the wash when people have recovered and can appeal, but their immediate health must always be a priority.

The onset of sickness and impairment are always going to be stressful by their very nature as immediate priorities means less immediately important things will get lost or forgotten. The state and others can not pander to a ‘what if’ culture that will result in everyone being put in drugged induced comas as the best method of avoiding any kind of risk. This is certainly not how I wish to live my life.

I believe humankind has strived because of having to deal with stress and hardship, in a way many of us can never imagine, not despite of it. We have advanced because people were willing to take risks and suffer the consequences. A world without stress is a world without freedom, and it would be very wrong to try to eliminate stress as a goal for society.

from Simon Stevens