I would like to suggest that when the coalition government came into power in May 2010, there was a major shift in the way many sick and disabled people have organised themselves to protest against ‘welfare reforms’. Most people will not see any problem with this, regarding this as something quite natural. This is because they may not be aware of the political history of disabled people over the last 40 years, which has dominantly been focused upon the pursuit of our full inclusion into society, trying to move away from a negative portrayal of sick and disabled people as merely objects of welfare.

But the historic inclusion movement has been overshadowed by a new welfare based ‘sick and disabled’ people’s movement, which is fashionably fuelled with its trade union roots, and its left-wing rhetoric. Its message that sick and disabled people are ‘the most vulnerable’ who are dependent on the state under the remit of ‘compassion and fairness’ is easy on the eye and enables unwavering public support.

For myself, watching the inclusion of disabled people being flushed down the political loo has been frustrating to say the least, as I read endless pity stories that makes my blood boil! It is very complex to explain why what most people lap up as ‘the right thing to think’ in terms of ‘not forcing disabled people to work’ is actually a very wrong thing, that is damaging to disabled people’s inclusion within society.

This is why I have just published a paper on the Political Battles between Inclusion and Welfare, and I am presenting it this week at a disability studies conference at Liverpool Hope University. This paper aims to explain the political landscape between inclusion and welfare, hopefully in a more successful way than I have tried with some of my Huffington Post articles, and many of my infamous Twitter rants.

At over 8000 words, the paper is admittedly not light reading but I believe it is an easy read if you have an hour to spare. With over 50 references, I have tried to keep an objective overview of what is happening from the viewpoint of the many players involved. I believe the paper is a good attempt to clarify the issues and viewpoints that separates how disabled people can be seen as needing social protection, and how they can be seen as included equal members of society.

I believe there is the potential to reach a compromised position between welfare and inclusion, recognising that social protection is needed, especially for disabled people who contributions to society does not equate to earning a living wage, while at the same time ensuring disability related payments are not passive, but are instead directed to support the meaningful inclusion of disabled people. It never helps where the left wing media daily reports how immoral it is to consider anyone with any kind of impairment as able to work, unconsciously adding fuel to the legal killing of unwanted disabled people. While the public laps up this pity press, it just makes me angry at how this seen as acceptable.

The political battles between inclusion and welfare are complex and the passion from activists on both side is huge, as it is often regarded as a ‘life or death’ issue. This makes any attempts to negotiate a compromise something can could make achieving world peace look easy, especially since many activists do not even acknowledge there is a debate to be had.

The paper is my attempt to start a discussion in what is the greatest challenge the political direction of disability related social policy has had for a generation, but whether anyone will want to engage is another matter.

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With the prospect of Rob Marris MP’s private members bill bringing the possibility of legislation to legalise ‘Assisted Dying’ back on the table, the question must be asked, does the general public really understand the implications of what this means for everyone involved?

This new law will for the first time make it legal for a specific section of the population of civil society to be killed, understanding it is currently illegal to commit murder or suicide, because society, in the guise of the judicial system, regard them as having a quality of life that no longer warrants a continuation of their life, based on medical labels. This means if the law was implemented properly, a judge will have to decide if someone is better off dead.

More importantly the bill does not give the ‘right to die’, as we all have this right as an event no one can escape from, but rather the ‘right to be killed’, even if that is providing a prescription of lethal medication. Once we have one reason to justify what is in any other context, murder, then we are starting a slippery slope to justify other forms of killings within civil society, outside the realms of war.

Those in favour of this form of civilised killing state the many safeguards proposed to ensure it is only used in the right way, but I think they are naive to how it will work in the real world. I recently attended a research project meeting on ‘Do not Resuscitate’ (DNR) directives and it made me realised how complex they were. When are they implemented? At what stage do you ask a patient if they want one? How long do they last? What happens if a patient changes their mind? And how is this recorded?

From the meeting I reached a personal conclusion that hospitals will have made mistakes in terms of DNRs, some with fatal consequences, especially with all the paperwork involved, and the different ways each hospital will deal with the issue. I suddenly realised that if hospitals had to deal with patients requests to be killed, for a better term, it is going to be a costly mess, full of confusion and misunderstanding, especially when you consider families often demand a say.

The middle class in their Bupa Hospitals may be able to pay for their killings, and ensure it comes with strawberries and a glass of champagne. However, for the average person, ‘assisted dying’ is going to be a bureaucratic minefield. Once the NHS is asked to implement killings, shortcuts and mistakes are more than likely. And as families already seen to have a lot of say in some treatment plans, it will not be long before killings become a family decision, not just the patients. And will overworked underpaid NHS staff have the time for the lengthy consultation processes proposed? Or will they just sign off on what the ‘carers’ say the patient wants?

It is a fear disabled people like myself have, because we have witnessed how health and social care systems have and continue to fail people. There have been a few times in my life where I have needed enormous determination and sheer stubbornness not to end up on a conveyor belt to emotional nothingness, with nothing left in me but to be the victim as others had chosen for me. If ‘assisted dying’ ends up on the table, and the welfare rhetoric of the left wing continues to desire the exclusion of disabled people, it would be so easy to use ‘fairness and compassion’ to reach a point where the final solution becomes the right solution.

This is why Rob Marris has become public enemy number one for many disabled people, as we sharpen our knifes and polish our guns, metaphorically of course, in readiness for the battle ahead, as we literally battle for our lives.

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Anyone who knows me understands that I am very confident with appearing different, whether that involves wearing bibs, a helmet, nappies or a harness on my wheelchair. These are all devices that assist me and help me have a comfortable lifestyle. More importantly, these are items I have chosen to use as I have the confidence to stick two fingers at the peer pressure to conform.

But this was not always my story. At 18, I went to University, living away from home, a very different person, far more ‘normal and conformed’ than I am now. No bibs, nappies, or helmets were in my everyday life as I was as mainstream as my peers, as much as I could. As someone who mostly walked at that time, the extent to my difference was to use a normal spoon, instead of knife and fork, at meal times, and velcro shoes! This was not a conscious decision but just the way it was, as no one offered me any other ways to live.

As I went into my 20s, I realised slowly I did not have the energy levels to complete on the same level, and I had to look after myself, as I got cold easily, and I was then prone to chest infections, because I did not know how to manage them. I slowly picked up ideas like wearing a swimming hat when I went swimming, even in the splash pool. For a man, even something as simple as using a swimming hat in some swimming environments can push the boundaries of social conformity and peer pressure, and it can take great courage to break the norms, however harmless it is. With confidence you realise no one really cared anyway, and those who do look at you funny are not worth your time. The confidence I was building enabled me to try verruca socks, which I now use all the time for swimming to stop athlete’s foot.

I was very active in canoeing in my 20s and I wore a wetsuit and booties because it gave me confidence not to fall in, even if I did not get wet. A wetsuit also was good to avoid bruising when I was man handled in and out of the canoe. However, despite the many good reasons to use one, I still have to fight the many good willed instructors insisting I do not need one, as disabled people do not need to get wet! But I actually always wanted to get wet!

So over the years I slowly tried a wide range of disabled equipment to find the stuff that has now become a part of my everyday living. It is about slowly building up my confidence to not care what I feared other people may think, and now there is very little I would not consider wearing in public if the need arises. I still have my funny rules on my own set of norms like I won’t wear a bib walking around in public, although at home I wear it all day, even for important meetings. I would wear an apron with sleeves before a meeting to keep ultra clean, but never during lunch at a meeting, wear I would wear a normal bib.

I am sure everyone has their own rules of what clothing is for what purpose that is unique to them. Daring to be Different, is not about breaking the rules like an anarchist so much, but the ability to be an unique individual who is comfortable and proud of how they live, regardless of what anyone else may thing. Many people with high support needs will benefit from using a wide range of equipment that may been odd, and even babyish, to some, but would actually provide them with a better quality of life in terms of health, comfort, effectiveness and enjoyment. It can also take courage to break social norms and dare to do things differently.

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As the closure of the Independent Living Fund fast approaches, I remain frustrated at how those who are still campaigning for it to stay open are portraying the situation. They like to paint the image of poor and defenseless users, who were protected by the fund, now being swallowed up by the big bad councils and their social workers with pound signs in their eyes, as they come to deliberately make life difficult for their users.

The fine details of how the transfer of the funding to local authorities is very different to the wild claims being made. Under the Care Act, users will have greater rights with local authorities, then they ever had with the Independent Living Fund. This is of course no guarantee that any user will keep the same level of support in the same way, but there is a component in the negotiation that campaigners have appeared to have forgotten, and that is the active participation of users themselves in saying what they need.

Social care should not be something that is passive, and sometimes users need to remind social workers of their responsibilities, as well as leading an active discussion on what they need in a manner their council can understand. Service users can not always have the knowledge and skills for the game of chess that sometimes needs to be played to get social workers and councils to understand the importance of ‘less basic’ and so what they may consider ‘less important’ needs.

This is why advocacy is very important and why I am proud to be the project manager of ILF Assist on behalf of Ethos Disability. This is a free advice and advocacy service specifically designed to support ILF Users with the transfer of their support to local authorities. The service makes no promises but it does offers users the knowledge and skills to be active partners in the assessment process, as opposed to being passive recipients.

The service is born out of my own belief that you can not wait for others to do what you can do for yourself, and if no one else was appearing to help users on the ground, I was going to take my own advice, and do something myself, without waiting for someone to pay me, as this service remains unfunded. While many campaigners may still genuinely believe that they can successfully force the government to keep the fund open, even at this late stage, I am more interested in supporting users to navigate their way through the transfer, and it is going to be understanding how to use the small print that is likely to make the biggest difference.

There is absolutely no reason for any user of social care, whether they were an ILF user or not, to be a passive recipient. I fully understand not everyone has the determination and knowledge to ‘kick ass’ but it is about building a support system that empowers more people to be active participants in their assistance and support. In any form of consumerism, informed consumers can prevent organisations from taking advantage of them, by knowing more about the rules than the organisations themselves. There is therefore no reason this can not happen within social care as all users become active partners in the services they receive.

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When people talk about getting and supporting sick and disabled people into paid work, there is an image of simply kicking people into any old traditional full-time job, regardless of whether they are qualified or emotionally/physically capable of doing the work. I am often harshly criticised for ‘believing everyone should work’ but I am actually saying I believe everyone has a contribution to make to society in their own way. How society values that contribution and what people are willing to pay for it is another matter, and I have always believed in state support for those who can not earn a living wage unassisted.

I have also always recognised that the emotional and physical journey towards paid employment can be a long one for a whole range of reasons. There can be many environmental and attitudinal barriers, including people’s own perceptions of what they are capable of. Reaching their full potential, and providing them the confidence to use it, can a matter of slowly and carefully wrapping the layers of their current situation, which may be prohibiting them from being ready to think about any kind of employment.

I see a lot of so-called employment support as simply filling in CVs and arranging job interviews. I also fear there is too much creating jobs for disabled people, that are not really meaningful, so everyone can look good and feel good about themselves as boxes are ticked. I believe that if people are properly enabled and empowered to be ready for work, they will be motivated to find the right job for themselves, and any support required should follow them.

If I was asked, or challenged, to support someone into work, as opposed to just talking about it, the first thing I would do is not talk about work. Instead, I would asked them what their hobbies and interests are. Their changing circumstances may mean they have lost touch with their recreational activities, or feel they are no longer able to physically take part in their passions. The reality is that if you name the activity, I can show you one or more organisations supporting disabled people to do it.

It does not have to be an outrageous activity like bungee jumping, and could be as simple as stamp collecting. I believe the reconnection with activities people enjoy doing can boost confidence and social skills, and be the starting point for a discussion on what they are able to do, and what kind of activities they may be interested in. This can lead people to explore education and training opportunities, that can in term lead them to consider work experience and paid employment.

I believe if we are doing work we enjoy, it does not feel like work, and we are motivated to push ourselves and our capabilities. Getting a job should not be the end goal, but rather being happy. I would like to suggest that human happiness normally involves doing something we enjoy, even if we need to do other stuff we do not like in order to do the fun stuff. In this context, I am proposing that leisure activities and having fun could be the can opener to locking people’s potential.

While employment is often solely seen in terms of being paid, it is also and more importantly about what we do to contribute to society. If we enjoy our work than it could be seen that it was something we were destined to do. We should not let the fact many people are unhappy with their employment, simply focusing on getting paid, to be a reason to deny sick and disabled people their opportunity to find their unique contribution to society, and therefore their happiness.

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