What Does Disability Mean Anyway?

In 1999 I started a MA in Disability Studies in Sheffield that I gave up after a year because it was bias towards psychoanalysis, something I really could not get my head around. I however gained a lot from the experience and the first lesson I learnt was that within disability, there are two basic but unanswerable questions. These are what is disability? And how many people are disabled?

To the average person these may look easy questions but as soon as you examine them properly, you realise they are impossible to answer. Disability is a socially constructed concept, like many things we assume to be the norm, and what is interesting is how many different definitions of disability exist. If we ignore other countries and just focus on the UK, and even than just on legal definitions of disability, we can still find quite a number. How disability is defined in the equality act is different to that to qualify for DLA/PIP, which is different to qualify for ESA, social care and even educational support. The definitions of disability are contradictory, incompatible and confusing in trying to understand what assistance someone may apply for.

But all these definitions are based on one of two models of disability, which are the medical model and social model, as defined by disabled people themselves. The medical model was born out of the industrial revolution and sees disability as a medical problem, where a person’s “deficiencies” is the focus of attention, that needs curing or removing since a disabled person is an inferior being that has no meaningful place in society. Over a century ago, this way of thinking saw the creation of special schools and residential institutions that are still to some degree with us today. Most people would like to believe we have moved on from the medical model but I am not sure this is actually the case and in fact worry that in recent years, the medical model has been widely adopted by many supposed disability activists.

In the 1970s, a group of disabled people got tired of the negative portrayal of themselves as bundles of medical problems and created another way of looking at disability. They firstly divided the biological side of the issue, impairment, from the social side, disability. So the social model acknowledges biological differences, impairment, as a matter of fact, eg I have cerebral palsy and this is just the way it is. But the model argues that disability is the social barriers that people with impairments face that as physical access, poor attitudes, lack of personal support and so on. It is a model that has been widely adopted by most disability activists, charities and others internationally, and has been central to much social policy since the 1990s.

As someone who has grown up with the social model and for the most part, lived the social model, I have made my own observations and interpretations. Firstly, I think it is becoming increasingly accepted that everyone has impairments in one way or another, and more importantly that not everyone who has some kind of impairment experiences disability, which is social barriers. Impairments need to be managed, as a fact of life, and the personal experiences of impairment, however difficult, may not bring disability. I feel this is a concept people are just starting to acknowledge and trying to understand.

Secondly, I personally regard disability to be a state that changes from minute to minute like the concept of being vulnerable. My core identity is my impairment and I see disability as external to myself. I am only disabled by many specific situations, which can be removed by improved access, improved attitudes, personal support and so on. I am therefore not often disabled at home because my environment is set up for me. When I go somewhere new, they may be more barriers and therefore I would be disabled. On this basis, I see the role of government is to remove these barriers and so reducing the number of people with impairments who experience disability. It is however difficult for many people with impairments to relinquish their disability status.

Finally, I see the social model as removing the barriers that are in the way of disabled people taking up their responsibilities as opposed as being about rights as citizenship is a balance of rights and responsibilities. As this dawns on people now many barriers are been undoubtedly removed over the last 20 years, there are continuous moves by some people to discredit the model, saying it is ‘old hat’ or arguing a range of excuses why it does not include them. This makes me wonder why disabled people fought for the equality they now have when this is not what they really wanted?

Disability is a concept that is far more complex than people would ever imagine and this article has only provided you with a brief insight into the issue that has more questions than answers.

The Barriers to Disabled People’s Happiness

I strongly believe that everyone has the opportunity to achieve happiness if they wish it, including disabled people. By happiness, I mean a natural contentment, a level of inner stability and a positive outlook that enables people to deal with anything that life throws at them. It is not a perfect state of bliss but rather an achievable state of being that we can have if we are willing to make the effort to grasp it.

For people who have been born with impairments, like myself, they do not know what it is like to be any different and so they have a strong self-identity as disabled people and will be on a whole be happy with life, as I am. But the majority of impairments happen during people’s lives and are more likely as we get older. The onset of impairment, whether sudden or gradual, will create a change in a person’s identity and this will result in some form of grieving process that the person may or may not recognise.

The grieving process can have up to six stages, which are denial, anger, bargaining, depression, acceptance and celebration. I would like to believe that the proper completion of the grieving process goes a long way to enabling someone to be happy, and this is where I feel we have the problem. The grieving process for anything may take a few days, weeks, months, years or even decades. The way each person comes to terms with having impairments is going to be very different and I am not about to prescribe any rules. However, I will say that the biggest barrier to disabled people’s happiness is often that they are stuck somewhere in the grieving process, often totally unaware of the problem.

I truly enjoy having cerebral palsy, and I know I am not alone, but there are so many people who are not happy with being impaired because they have not reached the acceptance stage of the grieving process. Their dislike of their situation is transferred into a belief all disabled people dislike being disabled and this forms a pity model of disability. If any stages of the grieving process are not properly recognised and supported it can be destructive for themselves and people around them.

The potentially most destructive stage is anger and this is where people’s unhappiness of their situation is thrown into sometimes irrational rage for things which they feel challenges them. This is where we can see the rage against any supposed cuts ‘against disabled people’, as newly impaired people focus their anger on anything or anyone who goes against their maybe unrealised dislike for themselves. I believe this is the central reason why some of my previous articles and comments have caused such a reaction by people clearly still coming to terms with their impairments. They will clearly deny this but as they are often consumed by their unrealised grief, they will not be able to stand back and see what their anger is doing to them and others as it manifests itself into hatred, jealousy, envy and so on.

My frustration is not with the uncontrollable actions of people going through an inescapable process of achieving acceptance at some point in the future, but how the liberal media and the charities exploit disabled people’s irrational anger for their own objectives, without providing them access to proper emotional support to achieve happiness. The rational leaders of campaign groups have used the anger of grieving individuals for centuries, delaying the process in others to have their pawns, ready to believe anyone is their enemy. With the era of social media, these pawns can be pointed towards the people who challenge the views of the leadership, acting like piranhas as they verbally strip individuals to the bone quicker than you can say anything.

Since the media, charities and campaign groups benefit from stopping disabled people finishing their grieving process, we are left with a growing population of very angry people. This is made worse by the fact the NHS, DWP, ATOS, Social Service departments and so on very often have no understanding of the grieving process, let alone be able to recognise and support individuals to come to terms with their impairments. It is not until there is a greater focus on the emotional journey can many people with impairments achieve some kind of happiness. This happiness will also make them stronger to challenge the cuts that may directly affect them in a way they will be currently unable to do, trapped in a world full of red mist.

This article is likely to receive a hostile response because it is difficult to tell people what they are not ready to hear, even if they need to hear it. Personal attacks are a symptom of the problem this article deals with as many disabled people fail to understand happiness has little to do with what they have, or what is external to them, but rather how they feel.

Yes, the Bedroom Tax Is a Mess

The bedroom tax is one of those simple and understandable ideas that looked great on paper, until you start to implement it and realise it is not going to work in the way anyone hoped. The aim was to help match the size of homes within social housing to those who needed them by discouraging people to be living in properties which were too big for them, a simple concept that should have worked.

I think the central problem with this policy is the lack of one bedroom properties for people to move into especially as economically it is much better to build two and three bedroom properties which can be used by families and single people alike, to avoid issues with changing demographics. And for myself, one of the shocking decisions made on the policy was the exemption of pensioners in paying the tax, this relevantly wealthy group are the ones sitting in the bulk of under-occupied properties, who should have been given a range of incentives to downgrade as an alternative to the bedroom tax.

And then we get to the main event, disabled people versus the bedroom tax. With everything else going on, this was at best an oversight on the part of the government, which has turned the whole policy toxic, making it this government’s poll tax. It would be inaccurate to suggest that every person who defines themselves as disabled within social housing require an extra bedroom, but there are never ending examples of why a family that includes disabled adults or children would need one.

For my own situation as someone with cerebral palsy, I live in a three bedroom flat within social housing. The first bedroom is for myself, the second is for my live-in volunteering personal assistant, and the final room is my office, where I am right now as I am typing this. Being self employed, my income is not as I would like it and so I qualify for tax credits and housing benefit. While my volunteer’s room is exempt from the bedroom tax, my office is clearly not. Half of me has accepted that the office is my own choice and that’s an reason business expense, while the other half believes I work from home because I am disabled and why should I be penalised.

I think the real problem is not so much the bedroom tax, but the poor implementation and execution of Discretionary Housing Payments. Despite David Cameron, DWP guidelines, my local council guidelines and many managers in my council all confirming that there has been funding made available with a specific priority to helping disabled people with the bedroom tax, the reality is this is simply not the case.

I believed that since the payment was discretionary, it would be reflective of individual need and I imagined a points style system where my level of income over personal expenditure would score some points, and my impairment related need for an extra bedroom would also score some points, along with a whole range of other factors. Since I assumed my need would score higher than my income, I did not write down every last penny I could think of.

It was only after a confusing meeting with my council that we finally understood each other and I realised they were simply interesting in whether I was penniless before they would enquire about my actual need for an extra bedroom. I had previously been confused to why the application form had not been asking me about my disability or my need for a bedroom. Because I was self-employed they were wanting to know everything about everything which they were making value judgements upon despite claiming they were not. In the end, I decided for my own sanity, it was easier to simply pay the tax!

While the recent court case on disabled people and the bedroom tax suggested people should put their faith in Discretionary Housing Payments, I do not feel it is working. I also believe the additional administrative costs associated to the bedroom tax is wiping out any benefits that the government could attribute to it.

In summary, the bedroom tax is in a mess and it is very clear to see. I am however not sure what the solutions are. The issue of disability needs to be taken out of the equation and I would suggest as a quick solutions would be to exempt people receiving the care component of DLA/PIP, as well as mandating all councils to take actual physical need into account in terms of Discretionary Housing Payments. As the election gets closer, it will be interesting see if this government will flinches on what is a very unpopular policy.

Mainstream Education Is So Important for Disabled Children

For over a century the majority of disabled children have been educated in special schools, excluded from their non-disabled peers. It is only in the last 30 years that this has started to change as more disabled children have been increasingly been given the right to a mainstream education as this form of apartheid is slowly exposed and removed.

I think before going further, it is important to understand my own education journey as someone with cerebral palsy. I was born in 1974 and my first school was the children’s ward of the local mental hospital before it became its own school for the ‘mentally handicapped’, opened and named after the Queen. They quickly realised I was rather intelligent and I was briefly integrated into my local village school at 5, with mixed success. After spending a few years at a mainstream school with a ‘physically handicapped unit’, I was fully integrated at 11 at my local all boys mainstream school, where I received a proper education although I was constantly bullied. Then I attended the local mainstream sixth form college doing my A-Levels before doing my degree at Coventry University.

I strongly believe in mainstream education because of the right of non-disabled and disabled children to be educated together. I can quickly tell those disabled adults who have attended mainstream schools, as opposed to special schools, simply by their posture. Mainstream schools provide disabled children with the same expectations to succeed as their peers, the social skills needed to compete in an non-disabled world which special schools fail to do, and toughens disabled children up for the real world, not to say anyone deserves to be bullied.

My belief in mainstream education does not mean I do not believe in special education because I do strongly believe that everyone should get the specific education they need. I believe the criticisms against mainstream education by parents and others is because many children are integrated into their schools rather than included. Integration is when the child is required to simply fit in with the school and no consideration of their needs are taken into account. This is not proper inclusion, where the school reasonably adapts its policies, practices and teaching methods to accommodate the specific needs of the child. There is always going to be some middle ground where the child must learnt how to adapt to the school in the same way they will need to adapt to other situations throughout their life to succeed.

My concern with the government is that they have turned the issue into a matter of parental choice, where parents of disabled children should have the right to choose a special or mainstream school, arguing they wish to end the ‘bias towards inclusion’. This standpoint assumes in this instance as opposed to any other, parents are suitably experienced to make decisions that would determine whether or not their child will have any opportunity to be properly included into society.

It is my belief that currently the special schools ‘market’ is dominated by third sector providers where the aim of the school is to simply prepare children for adult day services that are also dominated by the third sector. If a child is inappropriately labelled as having learning difficulties at an early age and then denied a proper education because of that label, they will become adults where it will be hard to determine whether they have learning difficulties because of an impairment or from the fact they have not received a proper education.

Special schools are ‘sold’ to parents based on promises and exploiting the parents’ fears of how their disabled child will cope in the real world. Like everything, special education has been ruled by fashion and trends over the years, rather than anything else. The policy of free schools, allowing parents and others to set up their own special schools on any ideology they choose, is a further step into this consumerism ‘fad’ culture where the parents wants come before the needs of the child.

The segregation of disabled children from mainstream education for over a century has caused immense damage to the fabric of society that can only be mended when all disabled children are fully included into mainstream education as standard policy, not just as a right but as a norm. At the same time, the education system must be responsive of the individual needs of children, disabled or not. Proper inclusion into mainstream schools must be the only ‘choice’ desired by everyone, for the benefit of everyone.

Changing the Conversation on Disability

The politics of disability used to be about achieving equality and inclusion as contributing citizens but in 2010 the welfare reforms changed everything. The charities, supported by a whole host of new generation sick and disabled activists have ripped up the equality agenda and replaced it with a list of demands that see disabled people as naturally inferior beings unable to work, who need benefits, pity and cold hard cash to be swept under the carpet rather than included in society.

The current disability conversation is destructive and hostile, and for any future (Labour) government to get an handle on this hysteria over benefits, WCA and ATOS by disabled people and the charities exploiting the situation, they must change the conversation. Firstly, they must eliminate the notion of being unfit for work, which has enabled the pity seekers to get massive attention. I would therefore propose that they scrap WCA, which I have believed for some time without pressure from anyone else.

My suggestion is not because it has failed to define who is notionally fit or unfit, but because it is an unworkable notion as everyone has human potential and can with the right support at some point make some level of meaningful contribution, which is not saying everyone can work 9 to 5. The process has also failed miserably in recognising and supporting the emotional journey of coming to terms of newly acquired impairments and preparing to make a contribution to society.

At the same time, I would scrap DLA, PIP, Direct Payments, Personal Budgets, Access to Work and others monies paid to disabled people and/or carers, and replace them with one single outcome focused need led individual payment covering everything a disabled person requires in terms of additional costs, assuming the use of Universal Credits for household income. I strongly believe disabled people should get exactly what they need when they need it to become contributing citizens.

To implement this properly, it needs to be assessed in a new way and therefore while I intend to work with ATOS to improve the immediate situation, I would scrap the big assessments contracts given to ATOS and others. I would replace them with locally commissioned small specialist interdisciplinary teams, which are matched to people’s specific needs at given times. These teams will be more responsive and will use discussion rather then formal assessment to meet people’s specific individual needs.

This new system would not be interested in medical labels and will take people at face value, looking instead at what is their exact additional needs at that time because of their impairments based on their outcomes, what they intend to do, in terms of work, education, raising a family or fulfil other important roles. The pressure to prove difficulty will be removed and it is then about explaining precisely what they need because of their difficulties.

I feel if these suggestions were properly implemented that it would quickly move the conversation on disability back to equality and inclusion, where the role of the state is to enable and empower individuals to reach their full potential. It will support so many sick and disabled people currently trapped in the grieving process of coming to terms with their situation, and enable them to complete their emotional journey in a less stressful relationship with the state. By meeting exact individual need when it is needed, it will avoid label based compensation where a fixed amount creates winners and losers. Since many sick people may have no additional needs to what is provided already to them, it puts the onus on them to prove what exactly they need which they would then easily receive.

I feel this is how the next Labour government will go, simply to diffuse the situation, as well as moving away from a dependency culture and allow disabled people to be regarded as equal citizens with the same rights and responsibilities as anyone else. I feel it will be very hard for charities and activists to argue against this way of thinking without revealing their true intentions of keeping disabled people dependent. The conversation of disability must change and I feel my ideas represent a good first stab in trying to do this.

Is a Proper Debate on Welfare Reform Possible?

For many disabled people working in the field as consultants and activists including myself, the welfare reforms have dominated the agenda since 2010 pushing so many other issues, like grassroot sport and quality of wheelchair services, to the sidelines. But the big question and frustration is in terms of disability, is it really possible to have a proper debate on the issues around the welfare reforms? I fear the answer is certainly not and I now have some direct and personal evidence that demonstrates this.

Just a few weeks ago I wrote a blog for Huff Post on some urban myths that exists in my opinion in terms of welfare reforms inviting people to properly explain them to me with some evidence, something I am still waiting for. At the same time and coincidentally I wrote an article on another website where I explained carefully and thoroughly why I was currently exploring working ‘with’ ATOS, someone I am 110% not employed by despite the urban myth that has now been created about me. Putting the two articles together and I would have got less flak if I have declared myself a Nazi!

I knew my articles would be controversial but I have received more abusive and hateful comments in two weeks than I could have imagined possible on Huff, on Twitter, on Facebook and on countless socialist and anti-ATOS websites. The comments have not been discussion points but hate filled personal attacks and trolling. I have been called everything under the sun and I had every aspect of my life judged on lies and myths. And if I defend myself I am have been met with more abuse and told to stop playing the victim of what is clearly the disability hate crime they so easily complain about when they feel it happens to them.

One Facebook ‘like’ of the urban myth article started yesterday afternoon has received so far 116 comments, mostly insulting who I am as a person rather than what I said. And I know this article will result in further abuse by people who will not realise the fact they are digging in own graves by their continued abuse of myself but simply see the word ATOS and simply see red mist. So just for them – ATOS ATOS ATOS ATOS!

I can now reach the conclusion that because of a minority of hostile sick and disabled people who have very sadly trapped themselves into being the victim in a government conspiracy they have created, too many commentators, politicians and activists are too scared to say what they really think as they do not wish to experience the same level of abuse I have and I am not at all surprised. I was bullied constantly at mainstream big school for many years and this has made me very thick skinned so I really do not care I am so hated.

Some poor unsuspecting people make comments on the issues not realising the trouble it will cause for them. An example of this is Dr Phil Peverly who recently said in an article that he believes if Stephen Hawkings can work than why can’t most of the people he sees at his GP surgery who are sick and claiming to be unable to work. Like myself, he would had received a better reaction if he also declared himself a Nazi, which is a joke by the way, neither of us are Nazis before people start attacking us for being Nazis! As well as lots of abusing comments, what I find more concerning and unacceptable is that two extremist groups have published his work’s physical address. In this age of social media, I really worry the only reason to do that is to incite someone to visit him with the intention of a physical altercation!

While we have some interesting TV programmes like Channel 4’s “Benefits Britain 1949”, which could be useful starting points to discuss the current and potential future reforms, they are dismissed as ‘poverty porn’ and government propaganda (despite it being a Labour government in 1949) by people who actually believe we live in George Orwell’s 1984!

I once again have to conclude most people who understand the situation and the fear induced hatred that exists on the subject just do not know how to stand up and be counted. It is only a few brave souls or perhaps crazy idiots like myself who are prepared to properly stand up and fight to be heard. I am outraged that as a disabled person all my life, for four decades, I have had my own issues stolen from me by a bunch of sick and disabled people who will verbally abuse anyone who refuses to support their paranoid socialist victimhood ideology that berates me for working, for being positive and even for smiling.

It is therefore not at all possible to have any sensible debate on the welfare reform and I fear for many disabled people, free speech and the right to have your own political views are a thing of the past as mob rule certainly wins.

What is a Personal Assistant?

For many years disabled people, like myself, who have needed care and support have employed personal assistants (PA), using monies from the government, instead of using care agencies. While disabled people once had to fight hard to employ a PA, in recent years the government has recognised the benefits they bring as they have encouraged them as the norm for many people. But as the number of personal assistants supposedly rises, it is important to properly define what a PA is, something so far the government has refused to do.

Before going any further I wish to make it clear that I am not judging the individual relationship any service user has with someone who supports them that is working for them, merely whether we have accurately call the person providing the support a PA. It is also helpful to understand what the term carer means which is a confusing term with many meanings. A carer could be an informal carer, a family member or friend who is unpaid. The term also refers to a paid care worker who works from someone other than the user(s). And finally, simply to confuse matters, it could refer to a personal assistant and many people prefer or insist on using this term to describe their personal assistants. I admit that to simplify matters in some situations, I just say carer to ensure people know what I mean.

So getting to the heart of the matter, I would define a personal assistant as someone independent directly employed by a person who is capable of directing them and requires care and/or support tasks to be performed. Let us break this down to ensure we understand this definition. The person has to be employed rather than self-employed, which has been a bone of contention between myself and the government who believes it does not matter how people are employed. But HMRC guidelines clearly state you can not direct someone who is self-employed, only specify what you want doing not how you want it to be done. Many people think the difference between being employed and self-employed is simply who pays the tax but the reality is its significantly affects the control and responsibilities each party has and therefore the relationship, making the difference between a PA and a care worker.

I would also argue that for a person to employ a personal assistant, they must be able to direct them on a day to day basis themselves. A true personal assistant simply follows the instructions of the user and is only responsible for the quality of their work, not specifically the welfare of their employer. Rather, a employer is responsible for the welfare of the staff they employ and direct. If someone is unable to direct than they may employ someone with assistance or have someone employ a person on their behalf, but the person employed is likely to be directed by someone else, or required to follow a specific support plan, aligning themselves to being care/support workers rather than PAs.

I also believe a true personal assistant has to be independent from the employer to avoid any conflicts of interest. It has become increasingly fashionable for people to employ family members as personal assistants. While it is not my business so long as it is working for them, when we are talking in terms of accuracy, I have to question whether they can be defined as a personal assistant. The government is now putting money into developing the PA workforce and the question to be asked is whether that family member would continue to work as a personal assistant after the user no longer requires them? The answer is probably not! I am really unsure how well you can truly direct a family member, especially immediate family, as there must be a whole range of potential conflicts of interest occurring. I would certainly not like my family involved in my care and support.

In terms of what a personal assistant does on a day to day basis, this is a very individual thing depending on the needs and wants of each user and the outcomes agreed by the funding bodies paying. I do not feel you can specify this in any way nor create standards and mandatory training as the government has been trying unsuccessfully to do. The relationship between personal assistants and those they support is so individual and is more like a marriage (and a divorce!) rather than an employer/employee relationship.

So these are my thoughts of what a personal assistants is and I hope this article can maybe begin a proper debate on the subject so everyone can properly understand the issues involved.

Why Can’t Disabled People Be Positive?

My all-time favourite song and my personal theme tune is Proud by Heather Small, because it sums up how I feel about my life and who I am as someone with cerebral palsy. I believe the media along with the disability charities and many activists has polarised the lives of disabled people, where we are either heroic paralympians or more likely, and as they wish us to be portrayed, miserable benefit claimants living a life comparable to being in a Victorian work house. But disabled people are three dimensional characters who have plenty to offer society, plenty of wonderful experiences to enjoy, and can lead amazing lives in a way that is just normal.

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A perfect example of something positive I have every reason to feel proud about is I’m Spazticus, which broadcasted the first episode of its second series last night, and starred myself as well as a whole diversity of disabled actors. This cutting edge and controversial prank show is one of the few positive but not patronising representations of disabled people on TV to date as its shows we can be funny on many levels.
The show is a combination of hard work and irrelevant cheek that shows we do not always need to be the victims of the story, puppets for others but we can also be the puppet masters, pulling the strings of the poor unsuspecting public. I’m Spazticus does not show the exception but the norm people have forgotten in this era of welfare reforms.
But disabled people do not always need to be this extreme to be positive. One of my greatest personal achievements has been Wheelies, the world’s first virtual disability themed nightclub I founded seven years ago that is still running using the 3d virtual environment called Secondlife. The club has never been for disabled people but simply disability themed becoming a virtual place for people to come and relax, listen and dance via their avatars to music, live DJs and artists.

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What so many people found revolutionary was that my avatar used a wheelchair, the very first to do so, despite the fact I could be anyone I wanted to be. I wanted to be me as someone with cerebral palsy and this has continued to capture the excitement of the media and academia ever since I started. The idea someone would choose to appear disabled when they did not need to has helped people understand the positive side of disability especially as the number of virtual wheelchair users around the world have grown.
But these are two examples on being positive at work, where it is ‘easy’ to put on a brave smile, but surely I have no time for fun? Well, I am not when of these many ‘disabled people’ who sit on their beanbags all day on their laptops writing blogs or tweeting how life is terrible! My life is in fact great and I have a great social life. My passion is water sports and I love doing anything that involves wearing a wetsuit and getting wet!

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I am no paralympian and I do these activities simply because I enjoy them and they are fun. At the end of August I am going on a week long disabled windsurfing camp in Belgium, as the only Englishman there and it will be my second time at the camp. I windsurf sitting down using a specially adapted board and it is great fun. It will also be great to be around a group of disabled people who are clearly doing something positive, for a week at least, and who probably never heard of welfare reforms or ATOS, let alone hate them! This is certainly a real and deserved break for me.
I believe and demonstrate wherever and whenever I can disabled people can be positive. We can achieve great things, which others may or may not call work. We can make contributions to our communities as citizens, to our families as parents or siblings, and to society as whole people with diverse skills and abilities many already demonstrate every day as just normal events.
In this context, I have started a campaign called ‘Yes we can’ (www.simonstevens.com/yes)that aims to show disabled people can work in one way or another, although may not always been ready to work, and deserve the chance to have a positive life. Being positive is not about pretending everything is perfect and smiling all day, it is about the right attitude to approach whatever barriers you face in a way so that you can overcome them, not just give up and play the victim!

‘Atos Declares Coma Patients Fit’ and Other Disability Related Welfare Urban Myths

Since the start of the welfare reforms in 2010, I have noticed a number of urban myths being created which I would like to unpick for a moment. I say urban myths as the examples I will give are shortcut statements that appear to have no origin or have any meaningful evidence to support them. Rather than just being ‘old wives tales’, these myths have quite damaging consequences, bringing unnecessary fear and anxiety to the situation.

As my headline suggests, the first urban myth is a belief that Atos, the company who assesses people for ESA, has declared one or more coma patients as being fit for work. I think we are being led to believe some health professional from ATOS has visited a person in a coma, took one look at them, and said yep, they are fit for work! I mean really?

Since there is no evidence of this happening, I think what will be very more likely to be the case is that someone who is already receiving ESA and needs an assessment has received a letter which they clearly are unable to reply to. Since Atos and DWP can not mind read, they would have no choice but to reject their application because of a failure to communicate. It would be hoped when they wake up from their coma, it could be sorted out with a phone call. It must be noted at the same time, they may have their mobile phone cut off for non-payment and many other things going wrong that they were clearly unable to deal with.

The next urban myth, which has been at the cornerstone of the attacks on Atos on extremist groups like ‘Disabled people against cuts’ and ‘Black Triangle’, is that Atos kills 40 people a week, or whatever it is currently. This myth is based on real statistics in terms of the number of people receiving or applying for ESA who have died in a certain timescale for WHATEVER reason. These would be like finding out many people who eat baked beans last year also died and then summarising that baked beans killed them.

If Atos was killing people, there would be arrests, trials and public investigations as this mass corporate killer was uncovered. But this is simply not the case and in reality, it has been a ploy to change the conversation away from the fact of what ESA is about and the social responsibility to work.

The next urban myth is one I find deeply frustrating because it is the whole basis of the victimhood culture that has engulfed disabled people. The myth is that the welfare reforms and the discussions surrounding them has caused a rise in the ‘hate crime’ towards disabled people. This is really hard to unpick as its is based on so many misunderstandings and prejudices. It is clear to me it is not the Government nor the right wing media that ensures the language of benefit scroungers has been kept in the public minds but those who claim to be campaigning on behalf of disabled people, because it suits their agenda of victimhood and tries to close the debate of welfare reforms with emotive guilt tripping.

While hate crime does of course exists, I do not think it is as widespread as many wish us to believe. I have tried without success to get to the bottom of individuals’ claims that they been victims of hate crime. While people want us to believe faultless disabled people are being openly abused in the high street and other public places by complete strangers, I think the reality that this is more about anti-social behaviour in the traditional places where the offenders will pick on the first thing they see, in this case disability, and that some ‘victims’ have chip on their shoulders believing they can be rude to others without consequences. I also feel the hate crime mentality provides unhelpful attention to bullies, glorifying their actions.

A final urban myth that is personal to me, is about the Independent Living Fund, that funds social care for disabled people with high support needs, who are closing in 2015, and its monies is being transferred to local authorities to administer with the monies they already manage. The extremist groups would like the public to believe this will result in users ending up in residential care (where they are likely of course to be abused) without any evidence that this will be the case. I regard the lies being told here very unhelpful and unfair, as either they are very ignorant of the social care system, or they wish to deliberately cause unnecessary distress to inflame the situation simply for their own agenda, using people’s fears in a way I find immoral.

What I find worrying about all these urban myths is how the public accept than as fact without asking, like I do, for hard evidence. And in this context, I ask people commenting to just not ‘huff’ how wrong I am but to provide me with hard provable logical evidence that some of these myths are in fact true.

Is Solidarity an Excuse for Disabled People Not to Work?

As someone who was born with cerebral palsy, I discovered the old ‘disability movement’ when I went to University at 18 in 1992. I quickly saw this unelected and unaccountable body as a way for a minority to dictate to the majority. I quickly understood the Solidarity others find so precious was actually quite oppressive. The needs, voice and rights of so many disabled people have been excluded, especially those with severe impairments and learning difficulties. But the movement’s actions won us civil rights, if nothing else, that we have all benefited from. I however always seen myself as an individual who has a right to think for myself and escaped from the self segregated oppression demanded from me by the movement.

The old movement has been all but dead for a number of years as its generation of activists have been institutionalised into the system they supposedly once fought against. But in 2010, the welfare reforms created a new ‘sick and disabled’ movement where we were now called to stand together to fight against ‘cuts’ that are yet to materialise in any meaningful way, and help sick people to, well, have the right not to work. This movement is very interesting as for the most part it does against everything the old movement was asking for. Inclusion and liberation has been replaced by exclusion and victimhood. I know it is hard to see but let me explain.

I fundamentally believe everyone should get what they personally need to be active and equal citizens able to fulfil their social responsibilities, which could include paid work. In this context someone with a mild form of diabetes will need less resources to support them than someone which severe cerebral palsy. Further, as the built environment, attitudes and policies improves some people with impairments, and we all have some kind of impairment, will become less disabled on a minute by minute basis, and some will no longer be disabled, compared to 20 or 30 years ago.

But this is not good news for sick people or those with minor impairments, because it is likely the current system of benefits means they get more than what they really need. I have tried to find out what some sick people really need and told to mind my own business as they avoid my questions and so leading me to conclude they do not need much. They need solidarity and a collective identity because they need to piggyback on the public perceptions of disabled people to cash in on the higher average need of disability. Since disability is so hard to define, it is so easy for people to cash in to what they see as people receiving benefits, cars and so on. But they do not want the real prejudices and discrimination that comes from being disabled, being outraged at what is normal for us.

The main trick of many sick people who do not wish to work is to imply they face the discrimination of the so-called average disabled person in terms of inaccessible transport, employer’s attitudes (apparently) and cost of living when they do not actually personally face these barriers. Since the identity of sick people is often created by medical professionals and many have not come to terms with their conditions, they will believe impairment is a negative thing and transfer that onto other disabled people, making sick people a big problem to the positive inclusion of traditional disabled people.

The situation is made worse as many sick people are mollycoddled by health professionals telling them what they can not do and so they are then not ready to face the hard nosed world of DWP and Atos, who are simply interested in whether they are fit for work rather than their emotional journey to work. This is where they need to piggyback on the collective identity of disabled people, pointing at people with cerebral palsy and others saying ‘I am like them and they can’t work’.

And this is where I am a problem for so many sick and disabled people, because I do work in my own way as a disability consultant. And while they may not see it, I am ‘sick’ from a nerve virus four years ago as well as having mild bipolar. So I show there are no excuses, especially when they are unwilling to explain how they are personally and specifically unable to do ANY kind of work, despite blogging 20 hours a week that they can not work!

So I say it is time to end the illusion of solidarity of disabled people and let us be the unique and wonderful individuals we are, who can all work in our own ways, rather than being chained together wallowing in the doom and gloom of self-segregation.

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