The Fear of Disability Keeps People Safe

As a child I remember all those public service adverts aimed at children to keep us safe, and in particularly the Green Cross code. The message of the Green Cross code was simply, cross the road safely or you may be killed or become injured, or even worse, end up disabled. Those were not the words used but they were the sentiment because whether we understand it or not, the fear of disability is used to keep people safe. I would go further and argue that the fear of sickness and disability is used to control how people behave in terms of the risks they are willing to take, adding the limits to what society finds acceptable.

This fear of disability in its widest definition worked fine until the 1970s, but now we have an era where disabled people, including myself, want to be fully included into society, and are trying to challenge the prejudices towards us. While on one level we have achieved a better understanding of disability and people have accepted the principles of disabled people having rights and independent living, it is often just skin deep and has not changed the deep rooted prejudices towards disabled people.

Many people’s reactions to the welfare reforms have shown their prejudices towards disabled people, and indeed many welfare activists have consciously used the fear of disability has an argument to keep benefits as they are by arguing disability could happen to anyone at anytime, and no one would like that. The problem with this argument is how can society include people into mainstream society that are the representation of their own fears? This means that while disabled people have won the right to be discussed in the way they find acceptable, it does not mean they have won the deep rooted changes in attitudes required for an inclusive society.

The reality is that whether I like it to not, there does need to be a level of self-interest in personal survival and an unwillingness to deliberately risk sickness or disability to avoid the breakdown of society as we understand it. This however needs to be within a mature understanding of the duality of sickness and disability as being accepted by society but still something to avoid if possible. This is why out of all the liberation movements, like gender, race and sexuality, disability has been the most complex to achieve, because of its undesirability.

While we may be unable to remove the fear of disability, it is important we understand it exists out there and within ourselves, and start to have the ability to discuss our true feelings in a mature and constructive manner, so as a society we can reach a new understanding of sickness and disability through honesty and openness as opposed to politically correct sound bites and a degree of pity and patronising behaviour that masks people’s fears.

I try to improve the situation myself by being as open, honest and approachable as I can in an effort to breakdown barriers and let people ‘get close up’ to a ‘real live disabled person’. I have always been happy to talk in detail about my situation and answer any questions people have, however direct or personal they may be, because I believe it is better people have the opportunity to dispel the myths they have about disabled people. I do not expect every disabled person to do the same and indeed I have chosen to do it myself so other disabled people can have the privacy I never really had anyway. This is also why I put a lot about myself on my website, not because I think I am more important than anyone else, but to give people a better insight into who I am so they may understand disability better.

The fear of disability is something we have to accept because it does keep people safe, but by being more honest and open about its existence, we can rise above it and improve the way society can embrace the inclusion of disabled people as fully contributing citizens.

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What Is Wrong With 15 Minutes?

With an ageing population, Social care is becoming a bigger issue that is only starting to be understood in the public domain, although there is still much confusion about the specifics. This is not helped by the many charities and organisations who are muddling the waters with their own version of what social care is or should be, with the desire of increasing their stake and ‘profit’ within the sector.

One issue many charities has latched on to as a ‘vote winner’ is the idea that it is very obvious that 15 minutes calls are universally wrong and inexcusable. But is this really the case? Like always, I would like to unpick this shortcut statement and reveal things are not as simple as those complaining wish you to believe.

A 15 minute call means a care worker is sent to someone’s home to work with them for 15 minutes. Those complaining want the public to imagine that this 15 minute call is what is called a ‘get up’ call, helping someone to wash, get dress and have breakfast, and of course you can not do this in 15 minutes. But it is important to note that 15 minute calls represents a small proportion of the length of calls offered to people and a longer call is more likely, especially for ‘get up’ calls.

The nature of social care is that everyone’s needs are unique and while it is easy to paint a picture where a 15 minute call is unsuitable, there are many examples where a 15 minute call works well, such as if someone just needs help undressing before bed.

For some people, it is important to them to be as physically independent as they can and so they welcome short calls just for that little bit of help. Forcing them by law, which some charities have demanded, to have more care then they need may be very disempowering and disruptive to the way they wish to live. Why would anyone what complete strangers in their home for more time than is necessary and it is quite insulting for these charities to think any different.

One of the biggest concerns being suggested by those who oppose 15 minute calls is that care workers do not have time to ‘chat’ with their users. This is on an assumption that disabled and older people are always socially isolated and completely dependent on these strangers for their contact with the outside world, like the internet does not exist. This concern is often not from those who require care and support, but families who see the role of care workers is to do the social interaction that they should be doing themselves, as well as providing the physical care needed.

While requiring care workers to chat with users looks good on paper, with those care workers with poor communication skills, this would end up with the government forced to issue a list of questions which care workers would be required to ask in a random order to tick the box, making the whole situation meaningless. And I am sure most users just want care workers to focus on the job at hand. Would you want shop assistants to be required to asked you how you were feeling and make a comment on the weather before they can serve you? Probably not but this is what some charities want care workers to do!

The reason it is easy to be against 15 minutes calls is it is in no ones interest to disagree especially if you want to look politically correct. Users are always going to say they need more help, and care workers will always say they can do a better job with more time. The care agencies always want more work and social workers, who makes these decisions, are always going to blame funding because they do not want to look like the bad guys. Because no one is going to properly and independently assess whether specific 15 minutes calls are working or not, the facts of the situation are not known.

And even if the government banned 15 minute calls, demonstrating you can have personalised support but only in the way we say you can, who is going to pay for it? The obvious target will be those with higher support packages, like myself, who seem not to matter so long as we no longer have 15 minute calls! People’s lives should not be dictated by peer pressure and political correctness but guaranteed if these charities get 15 minute calls banned, they will pick a new and probably stranger issue to campaign about, with as little evidence and thought as this one!

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Being Politicians, Not Protestors

I would like to propose that there are two main styles of campaigning, which are protesting and being political, with a small p. Protesting is about throwing metaphorical, and sometimes actual, stones at the windows of whoever they have an issue with. Protestors can say and do what they want, as long as it is legal, well most of the time, as they have no room for compromise with their hostile words. Most importantly protestors mostly complain against something happening without any regard to the consequences of what would happen if their ‘demands’ were met and no idea of what to put in place as a replacement to whatever they are against.

In contrast, I would argue being politicians is about working with the people you have concern with to achieve a positive outcome for the benefit of everyone involved. It is about rolling your sleeves up and getting your hands dirty by having constructive discussions with the people you may ideologically detest for the benefit of your cause and the people you are trying to help. It may take months or years of negotiations and convincing the right people to achieve anything, but by not being hostile to those you need assistance from, you are far more likely to achieve something than protesting.

Regular readers may find it easy to correctly guess that I would prefer being a politician rather than a protestor, especially as I have plenty of experience. While I am far too honest and outspoken to ever become an MP, even if society was ready to elect someone with a speech impairment who dribbles, I have been very fortunate to have been at political receptions at the Commons, Lords, Number 11, and of course Number 10, as well as many other venues, on a variety of topics and issues. These are not the events where you can blindly shout demands, but rather the name of the game is networking, collecting colleagues who may become allies and indeed friends, who are then prepared to listen to your concerns.

Playing politics is not easy and requires a lot of work and patience, but I feel it is the only way to be properly heard without putting people’s backs up. While you may not be able to change the big ideas, you may change the finer detail and this can often make the most difference. It is not about being defeatist but truly understanding how life really works and what is really possible, away from the grand ideology often peddled by protestors.

I believe the problem with the current ‘sick and disabled’ movement, which is different to the older and more established disability movement, is that it has been formed as a protesting movement that as not really successfully moved into politics. They may argue they have the support of some MPs, but the support is for their protests against the government, rather than having the support of MPs who really want to make a difference on the issue.

This movement, who inaccurately claims to be the voice of all sick and disabled people, remains a protesting group making wild and hostile accusations about ATOS/DWP killing people, which simply discredits their ability to make any real difference to disabled people. While they claim they have been proven right again and again as they twist every available statistic to suit their accusations, what have they actually achieved? Nothing but increasing the distress of those they claim to care about by increasing fears, stress and confusion with their knee-jerk hostile reactions to anything the government says or does.

Until this movement is prepared to put down the placards and the hostile confrontational speeches, and tell the government as well as the public what positive changes they want and how they believe they can be creditably delivered, it will never get the opportunity to truly make a real difference to any sick or disabled person.

In the meantime, it is left to disabled people like myself, as well as the traditional disabled people led organisations, to keep playing politics to try to find positive solutions to current issues faced by sick and disabled people, within the hostile and harmful environment created by sick and disabled protestors.

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If #wowpetition wants to be taken serious

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So the Wowpetition has got its signatures and it had its ‘debate’, where all the MPs said the right words in the hope of winning votes, but what has it achieved? Nothing so far, because what has been happening with ATOS has nothing to do to their ‘campaigning’ but more to do with wider issues. And why have they have not yet achieved anything? I would argue that the reason for this is that they are being protestors, not politicians and while they remain outside the political system throwing stones at the windows, they will achieve nothing but anger, frustration and bitterness.

 

They assumed they are the first disabled people to ever confront the government but we were hear 20 years ago for civil rights, and disabled people won be being politicians and we have a whole array of disabled people, including myself, to work with government, whoever in power, to make things happened. And I am annoyed that because I am heavy criticised for playing politics, with the real possibility of achieving change, which is why I tried to work with ATOS, rather than being a bitter and twisted protestor.

 

If Wowpetition is serious about using the energy they are created successfully, then they need to move from being protestors to politicians, so they are work with the government as adults, not children. This means they must let go of the sneering and finger pointing, and focus on the changes they desire.

 

To start this, I urge them, and the many other groups who wish to be taken serious, to immediately issue a public statement condemning any threats that MAY have been made against ATOS and any other staff as an act of providing them with the moral high ground. I have been bemused by the fact the Wowpetition have dared called ATOS liars on the very serious matter since it does not assist their creditability and is a defensive stance they may cause them problems in the future when they want to talk to the government.

 

I also personally urge them to take the accusations that ‘ATOS kills’, solely based in statistical manipulation and implications, as opposed to hard provable evidence. While such accusations may be fine is you wish to remain an extreme minority of ‘left wing’ anti-everything protestors,if they wish to really make a difference in real terms, and not just enjoy being anti-change, they are accepted that their counterparts in government are human beings who also trying to do their best, even if it is not as people with it to be,

 

The wow petition can ignore my advice but if they do, they will just be remembered as a protest group which got a debate in parliament who were too hostile to achieved anything and failed to act with maturity.

 

If you like what I say, have a look at my site at www.simonstevens.com or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email simon@simonstevens.com  

 

I Do Not Want a Fair Society

There are three words that fill me with dread in the context of disability; these are fairness, compassion and dignity. While many people may see nothing wrong with these terms, I have seen how they can be used to disempower disabled people. If you need to talk about ‘promoting dignity’ in terms of disability services, then you are implying there is something naturally indignant about the service, even though dignity is in the eye of the beholder, and often families and professionals, rather than those who use the service, set the concept of dignity.

I fear compassion is often a polite term for pity and I much more prefer the term empathy. People often complain that I lack compassion because I refuse to see a difficult situation at face value as I try to dig deeper and find out what is really going on. Often people do not need others pitying them and their situation, but rather straight forward honest advice even it is painful to hear. Life is often difficult and painful but to improve your situation requires hard work as opposed to self-pity.

And then we have fairness, a passive term that means ‘good enough’. A lot of people talk about wanting a fair society but do they know what that really means? The story of Animal Farm is the story of building a fair society and we can see how successful that was in the end! My problem with the idea of a fair society is that it is built upon current value judgements. By this I mean is the public assumes disabled people are naturally ‘less able’ then this is going to be ingrained into a fair society by ‘looking after’ fairly those who are seen as unable to work. This means disabled people will simply be looked after as passive citizens in a manner those who control the concept of fairness judge, and therefore a fair society has no interest in the full inclusion of disabled people as active citizens.

This is why I want an ‘inclusive’ society, one that actively promotes the meaningful participation of all its citizens. While a notion of fairness may be instilled into the values of such a society, the core aim would be to actively ensure the meaningful inclusion of its citizens by re-evaluating all of its social structures and policies. This is about citizens not being forced into a society that is unable to meet their needs, but at the same time, this is about them taking personal responsibility for reaching their unique potential. It is about active values underpinned with concrete actions, not a passive belief in fairness that leads to compromise and disappointment.

Achieving a fully inclusive society will never be easy and would require everyone to make positive changes that may be hard and painful in the beginning because it would ask everyone to think differently. It may mean making changes to how we work, learn and play together, how we look after our physical and emotional health, and more importantly how we value each other. It is not just about bringing disabled people and others into the circle, requiring them to make the necessary changes to fit into society, but rather widening the circle so that everyone is included without having to compromise who they are.

The problem I fear we face is that the political debate on managing welfare is still stuck on the extend to its fairness as no one seems to be talking about inclusion, in terms of disabled people, or the wider concept of social mobility. While the class system is more complex that it used to be, we have not achieved John Major’s desire for a classless society. And many disabled people have taken the welfare reforms has an attack rather than an opportunity, playing the victim fighting for their ‘fair share’ of benefits as less able citizens, as opposed to keeping focused on their inclusion into society as fully contributing citizens.

So when you bang that drum for a ‘fair society’, maybe for a second ask yourself if that is really what you want? Or do we deserve something much better where we can all win and not just pretend to win? An inclusive society?

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