Over the last few years there has been a lot of media attention of the difficulties currently faced by disabled people and it is easy to forget the achievements in rights, accessibility and attitudes that has occurred within the last 30 years. If we were to look back to that time, around 1984, when I was a ‘handicapped’ kid, we would have seen a very different place for disabled people and I would like to use this article to offer you a flavour of what it was like back then.

I have referred to myself as handicapped because that was the term most widely used at that time formally as well as informally. It was a term I hated and for me portrayed disabled people as ‘damaged goods’, and that very much summed up how society saw disabled people back then. There did not seem to be as many disabled people as now, as we were deemed to be a minority too small to warrant access to society.

As a result of this assumption, it meant physical accessibility of buildings and transport was very limited. I remember often having to wait outside shops in my larger sized buggy because there was no physical access into the shops, and as an active teenager, this was frustrating to say the least. Buses were clearly totally inaccessible and the idea wheelchair users could one day use any buses was out of the question. My home town, Horsham, with a population of 30000, had just ten disabled parking spaces for the whole town centre for what was then ‘orange badge’ users.

I went to an all-boys mainstream school when I was 11, after previously being in special education, and at that time, it was unheard of for someone with my level of impairment, particularly with a speech impairment, to attend a ‘normal school’. The teachers were as shocked as the pupils and I might as well have been an alien for outer space as I was certainly the freak of the school. This was clearly a lonely position and I often felt I was the only disabled person within a mile, five miles or even ten miles radius.

I think the biggest difference between now and 30 years ago was the stigma that existed for anyone who was seen as disabled. There were very little benefits to being disabled and there were outweighed by society’s pity and fear of disabled people, which was huge. While today, many people with hidden impairments appear to be jealous of those of us with visible impairments because they think we have it easier and our grass is greener, I would very much doubt this would have been the same back then, and those with invisible impairments would have had no desire to declare themselves to be disabled. There was in fact a clearer divide between disability and illness, and it is only in more recent times specific groups, like those with mental health issues, have defined themselves to be disabled.

The difference from the handicapped kid I was in 1984, and the disabled adult I am now in 2014, is enormous and I have witnessed my own liberation as improvements in technology, attitudes and the environment has increased my opportunities far beyond I could have ever imagined. The true liberation of all disabled people is within our grasp if we play our cards correctly, and that means making the most of the opportunities this era brings us, as opposed to just whinging about how difficult things are, and so failing to recognise the achievements over the last 30 years. The newcomers to disability need to recognise how things used to be for disabled people, not so they stop campaigning for better things, but so they can realised their part in a much bigger struggle.

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Employment and Support Allowance (ESA) is designed to support people who are regarded as unfit for work, and is assessed currently by ATOS using the Work Capacity Assessment (WCA). It is important to note that as someone with cerebral palsy who works, I have never claimed ESA or gone through the WCA, but I feel I have suffered in terms of my portrayal as a citizen due to the fierce opposition to WCA by many welfare campaigners.

The WCA has been regarded by many campaigners as being ‘not fit for purpose’, leading to a divisive and confrontational approach by many claimants, and I fear this has made the situation worse than it could have been. The campaigners have cited the fact that 38% of ESA appeals have been overturned as evidence that the WCA is not working and has to be changed. I would like to step back for one moment and add some logic to the equation.

I think it is firstly important to understand Appeals are a part of the process and that people do not need to seek any form of judicial hearing to be proven unfit for work. It is also important to understand that determining whether someone is unfit for work, using the benchmark set by the government, is a very complex thing to get right as it is like getting individually shaped objects into a single square hole. To make matters more complex, these shaped objects are continuously changing shape, meaning while they may fit on one day, they may not fit on another.

ATOS is simply required to take measurements of function and put them in a report for DWP to decide upon. I am sure ATOS is far from perfect as is the same with any organisation being asked to achieve the impossible and turn people into numbers, but I believe it is only half the story and if people wish to properly review the system, than they also need to review the appeals system and ensure that is also fair and just, which includes ensuring disabled people are not unfairly written off as unable to work.

The Appeal will be the applicants’ second stab at obtaining the benefit and therefore they will be more prepared, provide more evidence and probably be more confident with endless advice from the ‘WCA survivors’ twitter community. This alone is likely to mean that there is a greater chance for the decision to be favourable to them, especially since appeals have more time to consider all the evidence. Since the law is often about who has best argued their case rather than who is right, Appeals give a huge advantage to those who those just going through the WCA assessment.

So far I have highlighted the apparent positives of the Appeals process, but I would like to also highlight one fundamental component of the Appeals system that I feel has caused many decisions to be wrongly overturned, and that is the Judges. If my interaction with welfare campaigners has taught me anything in the last few years, it is that the prejudices towards sick and disabled people, often by sick and disabled people themselves, is as strong as it has ever been as it is still wrapped up with politically correct notions of fairness and understanding. While people have supposed respect for disabled people, it is often on the basis that sick and disabled people are of course inferior beings who will never be equal to non-disabled people. It is a situation that previously plagued issues of race and gender, and therefore despite those who think otherwise, it is only a matter of time before it is understood sick and disabled people are equal. But right now, this moral and social argument has still not gained universal acceptance and therefore there is currently massive institutional prejudice towards sick and disabled people in all areas of society.

Therefore it has to be understood that Judges, often from a very fortunate background, may be making decisions on someone’s employability as people who are institutionally prejudiced in a manner they will not even realise. This is made worst by the fact non-disabled people often find it hard to confront sick and disabled people about their abilities, for fear of upsetting people they regard as vulnerable, and so some judges may be shying away from making the right decision.

Finally, I think many welfare campaigners ignore the psychological damage being unnecessarily labelled ‘unfit’ for work, and therefore to a large degree society, has on a person, dooming them to a life overly dependent on the state as a burden to society, as opposed to a fully contributing citizen. In this context, the fact 38% of WCA decisions are overturned may be an area of concern for the very opposite reasons people are claiming.

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I have spent many days of my life, since the age of 16, sitting around committee room tables, engaging with others on what could be regarded as an equal basis, often coming up with all the good ideas or saying what everyone else was thinking but too frightened to say. The only problem with this idyllic picture of that while everyone else around the table was getting paid five or six figured salaries to be there as professionals, I was being paid nothing other than my travel expenses as a service user.

When I was younger I assumed everyone on these committees had the same wish as myself to improve the lives of disabled people, or whoever we were discussing, and then I realised it was just a job to many of them and more upsetting, some were sucking up my ideas and solutions to their problems, simply so they could do what they were supposedly paid for, solely with the aim of getting a better job in the not near distant future. I then understood the whole true inequality of the situation.

If I was paid what I was really worth, in relation to my peers as well as my expertise and experience, I would be on a six figure salary and living very comfortably indeed. But as an self-employed disability issues trouble shooter, prepared to tackle the issues no one else can, I have found it very difficult to be taken seriously, yet alone be paid. At almost aged 40, I now have the creditability of an experienced consultant, but simply because I am disabled, people expect me to work for free. Everyone loves what I do and happy to pat me on the back, but still find it odd I am expecting to be paid for my work, just like anyone else. I have of course been paid for work I have done, but it remains a time consuming exercise to find people willing to pay me, filled with too many false promises.

The problem is many charities, including one supposedly led by disabled people, have done well in portraying disabled people as unable to work, unless it is ‘supported employment’, which is being underpaid because it is seen as therapy, or volunteering. So many disabled people think they can volunteer but do not understand this means they can therefore get paid for working. At the same time, councils and other bodies have realised they can used the political correct notion of user involvement to basically get disabled people, who clearly have nothing better to do all day, to do their job for them as volunteers.

There is a place for volunteering as a stepping stone into paid employment, but when it is used by organisations simply to save money, then there is a problem. The government is also making things worse with the idea we need more volunteers (just to save money) with the appalling idea of Big Society, providing organisations with another excuse not to pay disabled people for the work they do, demonstrating an inexcusable inequality, which has yet to be recognised.

I strongly believe everyone should be properly paid for the work they do, even if it is on an ad-hoc basis, rather than a full-time paid job. How can we help disabled people value themselves when their contributions are not being valued? Why should I have the stresses of no money in the bank when I have helped and continue to help so many organisations and individuals better themselves? It is frustrating because while some organisations are acknowledging they need to pay service users for their time on committees, it is a small token of the amount of what they should be paid. The premise of co-production and partnership working being advocated in health and social care is still very primitive and meaningless if service users are not being adequately paid for their experience and expertise.

With all this said, I acknowledge that my style of working makes me controversial, since you can only say what customers need to hear a few times before it is time to find new work, means I will never have a stable income in the long-term, but it would be so nice if I could get paid more easily for the work I am willing to offer people. But until it is no longer just assumed disabled people will simply volunteer their time, I will have to continue to battle the point that disabled people should not work for free.

from Simon Stevens http://www.huffingtonpost.co.uk/simon-stevens/disabled-people-should-no_b_4594198.html

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Despite having a speech impairment, I had always made sure I had a voice one way or another, and indeed I have become quite outspoken, saying all the things others want to say but often can’t! I was always the one around the committee table prepared to say what everyone was thinking and take the consequences for what I said. Blogging for the Huffington Post has been the ultimate definition of having a voice, and I remind people it is a voice, not ‘the voice’ in terms of disability.

Since I have been writing for the Huff, I realised that the concept of free speech is no longer as respected at I believed it once was. As I wrote my first few articles, I accepted there would be people who disagreed with what I said but I have assumed they would comment in a constructive way. I was however not prepared for the strength of hostility I was met with, not just on Huff’s website but throughout the whole of cyberspace on blogs and social networks. Little of the responses had anything to do with what I had written but more to do with insulting my personhood because I had a different viewpoint to themselves based on a mythical version of myself. Is it really necessary to refer to me as Iain Duncan Smith’s Love child because I believe in the human potential of all disabled people?

I believe ‘free speech’ is not just the act of allowing someone to say what they believe, so long as it is in a manner that is not personally abusive, but also the way to have the active respected and challenged in a manner that is not abusive. My experience is that kind of free speech is going, if not gone, has trolling and other forms of cyber bullying has become the norm, especially in what is considered activism. To add insult to injury, anything general I said which people did not agree with was referred to as ‘hate speech’! Over the last six months I have been called everything under the sun and indeed over the sun, in public forums in a manner I still find shocking. It did take me a while to acclimatise to my new battleground, narrowly missing a nervous breakdown, and I am now able to mostly ignore the unprovoked spontaneous insults on Twitter, even when they persisted throughout Christmas.

I believe that the difficulties of free speech have changed. In the past the only people who had a big voice were those who worked in the news industry, who effectively controlled what the general public saw of the world to a large degree. It was a slow industry that was a monopoly of information and so if someone told an untruth about someone, it would likely to have a big impact, and take days, week or months to be corrected. Now news organisations are considered as a bundle of personalities with specific viewpoints and hang-ups, within a fast pace information system that now includes social networks. More importantly, traditional news organisations are competing against blogs, and other voices of individuals, who can now portray themselves to the world on their own terms. This means that untruths may have less impact and are more easily corrected or given less weight to.

I believe the new difficulties of free speech is cyber-bullying and specifically the anonymity of those who attack free speech with insults. I personally do not mind the insults, so long as I would very much like to know exactly who is insulting me so I can contextualise what their point is. With Twitter names like ‘Death By Tory’, who has the profile picture of an X-rayed skull, I have no idea who I am talking to and sometimes Twitter feels like an IRA Christmas Party. I feel that to have the right to free speech within the public domain like Twitter, you must be open about who you are to some degree even if that is you’re your name and hometown. Ideally I believe all social media accounts should consist of one real profile picture, even if it was not the one used as their current one.

In court cases, I have the right to face my accuser, and that principle should been extended to public free speech in general. I am not including whistle-blowers and those who report information to a third party for investigation and independent verification, but the purity of making a comment publicly. I believe this would further enshrine the nature of free speech for everyone, as well as reducing the often cowardly acts of cyber-bullying, and is the way forward for free speech.

from Simon Stevens http://www.huffingtonpost.co.uk/simon-stevens/is-the-concept-of-free-sp_b_4553592.html

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