Regardless of what anyone says, language is very important and getting the right words in the right order can make all the difference in the world. And this is why when I received two similar letters in the same envelope from my energy company informing me of a ‘notice to terminate’ both my gas and electricity, I was initially slightly flabbergasted considering the relevantly small amounts involved and the fact this was the first ‘red letter’.

As an self employed person, cash flow is the bane of my life and so while I acknowledge I did not have enough money in the account when they tried to take the money, I was not quite expecting the letters I received. Both letters asked me to pay immediately but considering the letters for dated a week before I was reading them, I kind of wondered if technically it was already too late and some bad people were already on their way to cut off my gas and electricity in the middle of winter! I was already seeing the headlines and I could milk the fact I have cerebral palsy to the local media to cause a great deal of bad publicity for the company.

Now let me make it clear, I understood that in reality they were not actually going to cut off my gas and electricity at that very moment, and the letter was designed to shock me into paying my bill as the first stage of a long series of letters and phone calls. However, if I am being threatened, I do very much expect the threats to be legally accurate. The letters were not ‘notices of termination’ but ‘notices of the intention to terminate’. The former is telling me they have already decided to terminate the services and there is really no point paying them since they have already made up their mind, the later informs me of their intentions if specific actions on my part is not carried out, eg paying them.

I have often played this game of David and Goliath with many organisations because their size does not necessarily make them right. But you may be wondering why I think getting a few words wrong is a big deal? Well, people who are struggling financially are more likely to be emotionally vulnerable and therefore if they read a letter that makes them believe that their gas and electricity is going to be cut off, almost immediately, then this could be seen as the last straw, pushing them over the edge towards significant emotional distress and even suicide.

I am not saying companies should not pursue people when they owe them money but they need to understand the balance between carrot and stick, and take extra consideration to ensure their communication is accurate and unambiguous, especially when it could be understood people experiencing emotional vulnerability may be more likely to just read the headline and ignore the small print, or become overly obsessed with every small point in the letter, so it also has to be relevant and sensitive to the broad range of readers.

This is a central reason I wanted to work with ATOS Healthcare, as I was observing that their weakness could have been the way they were communicating with claimants. If their letters have been pushing people already experiencing emotional distress to suicide, then surely someone needed to have a look at these letters to see how they can be improved. I strongly believe it is indeed the smallest improvements that could sometimes make the biggest difference. And while stating my reasons to wish to work with ATOS on several occasions, I remain bemused to some people’s anti-social reaction to my desire to make things better for everyone.

As I said in the beginning, language is very important and as we can see, getting it right can in some cases be a matter of life or death. And while I understand big companies need to chase people who do not pay their bills, they need to be accurate in the way they communicate with customers.

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By ‘Disability Charities’ I am referring to the big impairment specific charities that has dominated the scene for over half a century like Scope, Leonard Cheshire, MENCAP, RNIB and Action on Hearing. These monolithic organisations, primarily run by non-disabled people, have dominated the disability agenda and due to their income and assets, are much larger than organisations that claim to be user-led, like Disability Rights UK. However, the big question to ask is do these organisations actually help anyone other than themselves?

To answer this, it is important to explain their history. Many of these charities were set up by parents who were concerned at the lack of services at that time for disabled children and adults, and hence they invested in what were ‘cutting edge’ services like special schools and residential care facilities, which soon became the norm and are now out of date. As any organisation grows, it is very easy as staff come and go for the original goals to be lost and replaced with the single goal of survival, meaning the charities have now become dependent on the dependency of disabled people using their services.

The charities have also needed to adapt to the fact disabled people can now represent themselves and do not like being devalued. This means that the patronising advertising used right up to the late 1980s, proudly portraying disabled people as objects of pity in the way we still see on TV with African children or foreign donkeys, had to stop and be replaced with ‘campaigning’. While the idea of these charities actually campaigning for what disabled people wanted was revolutionary at the time, the concept is now overused and it is now clear to see that campaigning is merely a marketing tool for charities to portray themselves as the authentic voice of whoever they claim to support, portraying their service users as ‘vulnerable’.

With the internet and social media, the level of campaigning by these charities has gone into overload, especially in terms of the welfare reforms, which has enabled them to switch the agenda from politically correct notions of equality and inclusion that challenges the deep rooted prejudices towards disabled people, to the more comfortable notions of welfare and dependency that reinforces the prejudices and keeps disabled people disempowered and dependent.

What is interesting now is that the charity’s competitors are no longer just other charities, but are now disabled people themselves, who have a greater voice as individuals and organisations. Social media has given campaigning tools to the masses and enables anyone to have a voice without money playing the deciding factor, as anyone with access to the internet can now tell the world what they want to say directly and without interference.

This means disabled people are no longer dependent on the charities, who could now be seen as the Black slave traders of our time. The services they run are now mostly funded by government and are undesirable relics of the past. However much they try to reinvent themselves as modern and necessary, the reality is the charities still see disabled people as people who need them because they are incapable of ever really being equal and included in society. This mindset simply stems from their need to survive for the benefit of their staff and no one else.

I must therefore wonder if these charities now really help anyone but themselves and they are simply now asset rich dinosaurs who serve no purpose other than damaging the liberation of disabled people by their dependency on dependency. The question must also be asked if as the issue of disability becomes more complex, can any organisation be the voice of disabled people, especially when it is impossible to determine who disabled people really are or what disability really means.

I believe we are entering the age of the individual, where so many people like myself can have a strong voice as an individual in a cyberspace of voices. This means the power dynamics between individuals and the state, particularly disabled people and the state, is changing, even if it is not fully understood, and this is perhaps going to be the final nail in the coffin for disability charities, who are gradually losing control of those they have needed to survive.

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While the welfare reforms has brought a large amount of attention to the supposed plight of disabled people, I fear it is often ignoring the bigger picture, and ignoring the experience of disabled people living in the UK, in comparison to other countries. I would like to propose that even if we take the cuts at face value, that Britain is the best country for disabled people as a whole.

In making this conclusion, I have considered many factors including the rights disabled people have in terms of anti-discrimination legislation, the array and amount of financial and other benefits provided to disabled people, the percentage of buildings and public transport that is accessible to disabled people, the general attitudes of the public in terms of how they see disabled people, the efforts made to include disabled children in mainstream schools and the array of health and social care services provided to disabled people including independent living and direct payments.

While someone may argue that America is a better country because it was the first to enact anti-discrimination legislation, the reality is America fails disabled people in so many other ways including the fact it has no coherent social care system, meaning from state to state, the experiences of disabled people can vary enormously. There are of course pockets of good practise in countries all over the world, but when it comes to a total experience, Britain leads the way.

I would argue Britain has particularly led the way in the development of disability social theory and policy, from a medical model approach to a social model approach, where the focus is not the deficiencies of the person but the social barriers they face. I believe living in the UK at this time, when so much has improved for disabled people over the last 40 years, has provided me with a true level of independence and self-autonomy over my life as someone with a significant impairment, particularly with speech difficulties, that would not be possible in any other country.

It is so easy to berate this country for not being as people would like it to be, and I agree it is not a perfect country, and we can and should always constructively campaign to improve things. But we must also recognise what we have in comparison to other countries, where true poverty and exclusion often exists, and be thankful for what we have in the UK. I challenge anyone who moans about the welfare reforms and how disabled people are supposedly mistreated by the state to find a better country to live in, because I am not sure there is one for disabled people.

I think it is also easy to romanticise how accessible cities are and how ‘friendly’ people are in other countries from the perspective of a tourist, but it is no way to constructively and critically make a comparison between places since people often compare somewhere they live and know inside out, with somewhere they just spent a few days visiting as a tourist. During last week’s Tube Strike, I was fed up of hearing disabled Londoners sneering at how the Tube is always inaccessible to them, especially since many of us living outside London would love the transport services available to them.

While the tube needs to be more accessible, the moral argument was won 20 years ago, and it is only the age of the London Underground, and the enormity and cost of rebuilding this complex system that as made achieving a fully accessible network a slow process. Cities with younger underground systems, designed for a different era, are of course going to be more accessible, especially recently built ones.

We must never accept the status quo and always campaign for better things, but at the same time, we should be proud of Britain as I do believe it is overall the best country to live in if you are a disabled person.

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The term ‘disability’ is something I have grown up with all my life but I was 17 before I understood what it meant at that time, in terms of being a part of an oppressed minority. But the term has changed over the last 20 years and I fear it has now become meaningless, a political term that is over-used and under-valued.

Those who understand the social model should know the disability refers to the socially constructed barriers faced by people with impairments. If and when these barriers are removed, people are no longer disabled and this could be a minute by minute state of being. When we can accept everyone experiences impairment in one way or another, we can understand not everyone who is impaired is disabled, in fact a minority of people with impairments are actually disabled and this is reducing as environmental and attitudinal barriers are removed.

The problem is that the majority of people refer to their impairments as disabilities and now used the fact they see themselves as disabled as a weapon of mass annoyance. Those of us who have experienced the prejudices of real disability, not just impairment, want to get away from being disabled and have full equality and inclusion. But we have a generation of newly impaired people who do not experience disability and simply see being disabled as a benefit since they see the financial benefits and perks, rather than the prejudices that go with true disability.

I hear people on Twitter every day say they are disabled, like it is an excuse for the fact they have decided not to make any effort to work, or to complain about everything and anything just to be miserable. Many of these people do indeed have impairments and are experiencing physical as well as emotional difficulties in the same way as anyone experiences ill health or change, but very few of them understand or experience the prejudice of disability. Yet because of the public’s deep, dark and hidden prejudices towards disabled people, they are happy to permit anyone sorry enough to want to be labelled disabled to have the second class existence afforded to those who truly experience prejudice.

Labels have a huge impact on people’s lives, more than anything else, and being referred to as disabled, even if you just have an impairment, significantly limits your opportunities and experiences, as you are sadly regarded as an inferior being who has very little hope in having equality in the true sense of the meaning. I fear too many children are labelled as disabled, particularly learning difficulties, and often out of some kind of fashion, and this label pushes them onto a conveyor belt of special schools and adult day care, where having the wrong label has denied them a proper education and reduced their quality of lives because of society’s low expectations of disabled people.

The reality is saying “I’m disabled” is now meaningless as it provides no information on a person’s ability or difficulties, and in fact I fear can no longer be trusted as too many people mistake any kind and level of impairment as a disability, and I fear is often to provoke unwarranted sympathy on what should be a statement of fact. I always say I have cerebral palsy and more than happy to describe my difficulties so people can get a true picture of who I am, something I believe a lot of ‘disabled’ people wish to avoid.

Matters have been made worse when the so-called anti-cuts campaigners have taken the term disability to a whole new level as being synonymous with poverty, magnifying the prejudices towards disabled people for their own horrendous political agenda. They would like the general public to believe anyone who claims to be disabled is penniless, needs a spare bedroom whatever and therefore suffers from the bedroom tax, definitely unemployable, and now uses food banks on a weekly basis to top up their income despite the fact this is not how they work. And on top of this negative portrayal, Carers UK just this week released a report and statistical manipulation to say carers will lose £1bn in cuts, on an assumption carers have total control of disabled people and more importantly, their money, and seem to suggest even those pretending to be ‘disabled’ to get DLA/PIP need full time carers (35 hours a week!) so they can get Carers Allowance.

My identity as a ‘disabled person’ is being eroded by those who have decided to abuse the term for political gain, showing the true prejudices they have for disabled people. They claim to be on the side of disabled people, often claiming to be disabled themselves, but they are very quickly destroying what people who really experience the prejudice of disability have fought for over the last 50 years, our true inclusion into society as full equal contributing citizens.

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