The Work Capacity Assessment (WCA) for Employment and Support Allowance (ESA) has been controversial to many people, and there has been plenty of calls for it to be scrapped. I am therefore somewhat bemused by the mute response to the government’s commitment to do just that in the spending review.

Despite what many believe I have said, I have never said WCA was a good thing, especially in the long term. However, what I have said is that I opposed the assumptions activists and others have made about who should be automatically labelled unfit for work based on meaningless labels.

There is a line in many people’s heads between dysabled people who are fit for society as meaningful citizens, and those unfit for society who should simply be paid to sit at home and do nothing in the name of their human rights. While no one would dare say it to my face, I know if most activists saw me in the street and did not know who I was, they would put me in the later category solely based on my appearance.

No activist is willing to formally say which label based impairments they will put in the later category but my guess is by the time they stopped feeling sorry for everyone, very few dysabled people would be considered able to work. And once you been labelled unfit for work, and therefore society, by your so-called peers, there is no coming back.

In a shrinking economy no amount of socialism banter will fix, leaving the majority of dysabled people on benefits doing nothing at the increasing expense of taxpayers, the compassion argument will soon go sour. If community engagement and participation is off the table, as left wing activists demand, decisions will be made about resources and they will not be pretty. We could see a return to Victorian style 1000 bed institutions to keep the cost down, warehousing the growing numbers of socially unwanted. Worse still, we could see a ‘humane’ eugenics programme being given public support, to let those who clearly live unbearable lives go, like myself. Assisted suicide is stage one to this outcome.

When most people talk about reforming WCA, they mean writing off more dysabled people as unfit for work. No replacement to the test would work because the problem is not the test, but dysabled people’s and the public’s attitudes towards dysabled people’s ability to make a meaningful contribution.

Asking dysabled people to write the test as a piece of democracy, as ‘we are the experts’, would be a nightmare. The people going through the WCA system, something I have not done, are new to their impairments and often have a negative attitude towards themselves which they want to test to validate. Since the test is not and can not be designed to do this, the conflict of expectations is the source of stress, anger, distressed, depression and so on.

The NHS is still very negative about what patients can achieve, creating a negative mindset in dysabled people and a belief they have a right to be regarded as unfit for work regardless of the facts to please the emotions of themselves and their families. Rather than helping people understand their emotional journey, left wing activists have abused their vulnerability as claimants for their own anti-cuts agendas.

It is a mess not because of how WCA is designed, but how it has ignited public bigotry towards dysabled people, masked as compassion and a fight for human rights. Too many activists deep down do not want us to work, and simply find reasons to justify their stance, blaming everyone but themselves. Many of them would desire a system where you can simply get your GP to sign you off as indefinitely unfit, with no way back from being excluded from society. But like many Jed supporters, they think money also grows on trees!

Before the government designs a new test, something I will get involved in, it needs to understand the deep rooted bigotry that the reactions to WCA has uncovered since this stops many sick and dysabled people from being included in society.

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The terms used to describe dysabled people have radically changed over the last 200 years as many terms are corrupted, with many terms ending up being now used as derogatory insults.

The term disability replaced handicapped as the main term in the early 1980s, and it has lasted well, where Disabled people is a wholly accepted term. But over the last 5 years, I feel the term has lost its meaning and now used too widely to described too many people.

This corruption has been entirely political, ‘being disabled’ is now instantly linked with welfare, poverty and cuts by the media’s endless onslaught. The lines between illness, sickness, impairment and disability has been blurred so much that a touch of stress means you can refer to yourself and be referred to as a disabled person, with few people even blinking!

Disability means a lack of ability and many newcomers to impairment equate that to ‘I can’t’. ‘But I am disabled’ is now a brick wall people can put it to excuse their unwillingness to even try to do anything they do not wish to do. Political correctness has turned any attempt to challenge people’s notions of their ability into a breach of their human rights, or even a hate crime.

A few months ago I decided I had to move myself away from this madness and use a new term. Many terms like ‘differently able’ and ‘physically challenged’ have come and gone, mainly because they tried to ignore the issues. I have chosen Dysability, a term I briefly used in the 1990s. Back then, I was younger, inexperienced and lacked authority, so I dropped it. I have now revived it with a greater understanding of what it means.

Dysability basically means a difficulty in ability, and I believe this is more in line with the social model. Impairments are the biological differences we have that are mostly perceived to negatively affect our function. We have difficulties in being fully contributing citizens because of the way society is constructed in terms of the built environment, attitudes, and so far not fully understood, how we do things.

The thing with difficulties is they can normally be overcome in one way or another through changes, adaptations and/or support. Therefore the term Dysability is not only a new term to describe people, but a new positive but realistic term for people to define themselves, as capable people with difficulties. I believe this different mindset compared to that of disability will have major consequences to how people see their relationship with society, from victim to interdependent partner.

I am not going to make this into a campaign. I am using this term as I know what it means. If others want to embrace the term, that is great, I only want people to use the term if they understand what it means to them. We will then have to watch this space to see if and how the usage of the term will grow.

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As people celebrate 20 years since the Disability Discrimination Act was enacted, it is worth briefly reminding ourselves that it was not the act anyone campaigned for or wanted. Instead, it was a compromised act proposed by the then Conservative government to divide the disability movement and to stop a more substantial Disability Rights private members bill from being passed. I know because I was there, a fresh 21 year cp campaigner with a lot to learn.

To understand what really happened, it is important to understand there were a large succession of private members’ bills over the years before 1995 focused on Disability Rights. The last two of these were the Roger Berry bill, and the Harry Barnes. Harry had particularly added a cause in his bill to make polling stations accessible, something we still do not have.

The Harry Barnes bill was actually going through parliament at the same time as the Disability Discrimination Act, making life exciting and confusion. All the lobbying by dysabled people and organisations were focused on the private members bill, not the Disability Discrimination Act. I attended some of the lobbies at parliament, where fresh face Tony Blair was a speaker, although I never got involved in changing myself to buses.

The original act was flimsy and complex to explain with many loopholes. When Labour came to power in 1997, they set up the Disability Rights Taskforce, which saw many amendments to the act including the formation of the Disability Rights Commission, who used a picture of myself on their first leaflet, unfortunately without my permission! Today, the act is now a part of the Equality Act, monitored by the Human Rights and Equality Commission.

Things have changed a lot in the last 20 years in terms of environmental accessibility and attitudes towards dysabled people, but we are still a long way from the true and meaningfil inclusion of all dysabled people. For myself, I feel disability organisations have wasted the opportunities the last 20 years have provided and that the last 5 years have shown how hollow their belief system is as they have quickly reverted back to a medical model welfare agenda.

Dysability and Disability is more complex than it has ever been in the UK, where the next step in our liberation is not about making laws, but learning to help ourselves and push our own boundaries as well as those of others.

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As the House of Commons vote on the First Reading of Rob Marris’ Assisted Dying bill comes near, I feel it is time for another article on what is a very important topic for me. While the bill is aimed at those at the end of their lives, there is a long term consequence for those of us born impaired, who could have their lives threaten before they have even started in the name of eugenics.

I want to remind people of just ten of many myths that are being used by supporters of assisted suicide to convince the public and MPs that they have the moral high ground. These myths can be easily dispelled by facts and it is the truth that helps us expose the issue for what it is.

1. It is just about terminal illness, not disabled people

Many supporters are highly critical of disabled people like myself implying Assisted dying is about us, insisting it is just for people with terminal illnesses. In reality, the lines between impairment, sickness, illness and disability are quite blurred, and I fear the bill is just stage one of what supporters really want.

2. Terminal illness is easy to define and diagnose

It is not possible to accurately diagnose how long someone with a terminal illness has to live. Too often, people have been given 6 months to live, when they actually live years or decades. I was given a few days to live when I was born, 41 years ago!

3. The proposed bill would have helped Tony Nicklinson

Tony did not have a terminal illness but a progressive condition, and his desire to end his life would not be possible if the bill became law, suggesting future legislation would be proposed when it became publicly acceptable.

4. The proposed bill will stop the ‘need’ for Dignitas

Dignitas in Switzerland has far broader criteria on the people they will help to die, with little safeguards as a private service. Further legislation and public debate would be required to enable this level of compassionate murder to happen in the UK.

5. Assisted Suicide should be a choice

Suicide in the average population is legally and morally regarded as something which should be prevented, to the point someone can be sectioned and forcibly provided treatment if they try to commit suicide. Why does the debate change when we discuss people with physical impairments and health issues? The idea of a choice free from outside pressures is ridiculous.

6. Assisted Suicide is an act of compassion

In some countries, Assisted Suicide involves being provided 100 lethal tablets, which must be opened and swallowed without outside assistance, taking hours or days, similar to the actions of a drug mule. Not only is this method inaccessible to many candidates, but is this really a compassionate way to die?

7. People only oppose assisted suicide for religious reasons

I am an atheist and for me, this has nothing to do with religion. This is about the equality of treatment, respect and opportunity. If you want assisted dying, lets scrap services like the Samaritans, and ensure everyone who wants to die for any old reason is supported to do so.

8. Assisted Suicide will stop unnecessary suffering

There is a lot of suffering in the world due to poverty, abusive families, war, social background and so on. Why do we only consider killing people when their supposed suffering, as judged by others, is related to their health? Should the service be provided to people suffering debt or unemployment?

9. The general public want assisted suicide

I think what the general public really wants, including myself, is for people to have a pain-free death whenever possible. This involves providing good quality end of life care as a legal right, not assisted suicide, and the public is being misinformed on this.

10. Many Disabled People are better off dead

No one is going to admit this is what they think, but this is what is at the heart of the matter. Illness and Disability has been socially constructed as a form of abnormality to assist the norm to believe they are healthy and invincible to the vulnerabilities we all experience. Support for assisted suicide comes from people’s own fears of becoming abnormal.

Fundamentally, the bill is an emotional reaction to the deep rooted prejudice people have to those who are sick or impaired. Supporters do not want you to understand the facts as they feel they can simply pull your heart strings to get their own way.

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On my wall I have the back of one of my business cards signed by Tony Blair (in Blue) and the late Tony Benn (in red). I got their autographs at a lobby for Roger Berry’s Disability Rights Private Members Bill in 1994, which failed but it was the start of a whole raft of legislation improving the civil Rights for disabled people.

The mid-1990s were an exciting time for a young disabled person as I was, and Labour was making a lot of great promises to improve the inclusion of disabled people, which they actually delivered during their 13 years in office. Even in the 2010 General Election, it was clear to see Labour was the natural friends of disabled people, but then things started to change.

Five years on and the Labour Party is a very different beast in every respect. After failing to win the last general election with a poor facsimile of Tony Blair, like a wounded animal, it now appears to be going into a long period of rage against the general public as it turns left for inspiration, ignoring the fact we all went right. I fear whether or not Jeremy Corbyn wins the leadership race, the damage has already been done as Labour’s credibility is diminished.

And what does this mean for disabled people? Well it seems Labour has abandoned most of us. It narrowly sees disability as a welfare/employment issue for those who see themselves as sick and not disabled, except when they want to be disabled to get benefits. Those of us who require support and assistance are ‘helped’ under the label of ‘helping unpaid carers’, basically leaving us at the whims of our families, who have the real choice and control. And any kind of meaningful independent living and inclusion remains only accessible to those who shout the loudest, like myself.

The party’s message seems to pander to those who perceive themselves as unfit for work as a right, with negative and destructive language that should have been stamped out years ago as I am labelled as ‘the most vulnerable’. And in the background, we have Labour’s covert support for Assisted Dying, with both Shadow ministers dealing with disabled people showing their public support to allow us to ‘choose to die’.

In recent months I have encountered the left’s attitude to the meaningful inclusion of disabled people, which has to include employment in its widest meaning. I have been told that my values of inclusion are in fact neo-liberal slavery and as Kate Green MP put it bluntly ‘work for disabled people is a punishment’. So what do they expect me to do with my life? The problem is they don’t want me to do anything. This is the rhetoric of Corbynism and the greatest threat to many disabled people for a century.

Those on the ideologically utopia left of the party are pushing those of us looking forward towards the Tories. If we are abused as we were Tory by the left, we will end up believing them. Disabled people are only now welcome in the Labour party if they support their destructive exclusion rhetoric, where moral superiority overrides any open debate. Anyone in the Labour Party who believes everyone has a contribution to make to society without exception is now routinely burnt at the social media stake, since they will only tolerate people who pity disabled people, seeing social warehousing in the name of dignity and compassion as the only solution that can be offered.

Labour is no longer my natural friend, and it needs to work hard to deserve my friendship again. While many left wing ‘disabled’ activists (most of which were not active before 2010) will still argue Labour is the party for all disabled people, I believe the silent majority of disabled people will feel abandoned by them.

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I read the Chief Inspector of Social Care’s, Andrea Sutcliffe, recent article in the Guardian with disappointment and concern at her arguments, as well as the wider debates within social care. Social Care has been politically reduced into simply being about warehousing older people, as loved ones simply waiting to die, with no contribution left to offer society.

The fact younger people like myself have remained caught up in this stereotyping makes it even worse. I had to reflect on my own assumptions as I realised that the aspiration to make a meaningful contribution to family, community and society remains the same at any age, even if people’s individual goals are very different. There is a terrible myth that the onset of chronic illness or impairment gives a guaranteed spot on a conveyor-belt to dependency and meaningless, which does not have to be the case.

If we explore the endless claims that there is a funding crisis within social care, it depends what you want from social care. If you want anyone who appears to be dependent on others in any way to be left doing nothing in a care home for the rest of their lives, all in the name of dignity and compassion, then this is no longer going to be affordable again. I am glad this is the case as it seems a lack of money has been the central motivation for the many innovations within social care to enable and empower individuals.

Direct payments, paying money directly to users to manage their own support, has been the greatest advancement in social care over the last 20 years. It however seems that too many resources have been used by professionals to reduce the power of direct payments, so they can retain their power and their jobs. The greatest criticism I have about the current discussions within social care is there are still incredibly low expectations of the quality of life, in terms of opportunities and experiences, of service users generally. So long as I am alive, reasonably healthy, eating, sleeping, able to get dress, and feel safe in my own home, the job is ticked as done.

I would like to suggest the current warehousing outcomes of social care is neither good for users nor cost efficient. By providing proper support to enable and empower users of all ages to maximise their full potential, however that looks, can only bring benefits to their families, communities and the wider society. While funding will always be an issue, it is the quality and attitudes of the support provided that will make the real difference.

When we stop trying to look after people like children, and start supporting them as adults, is when we can start to feel proud of social care. But to achieve this, we need to overcome a number of things. These include the difficulties many social care staff have in letting go of the power they wield within a system of passivity. We also need to change the public’s obsession with perceiving all service users as vulnerable beings who deserve their pity due to their own fears about frailty.

Both Politicians and civil servants like Andrea appear to be mostly unable to see social care as a tool to enable and empower people. They prefer to portray social care as an act of charity upon the weak and vulnerable, which a civilised society has a responsibility to simply take on the chin. But this attitude is helping no one except those who are dependent on this disempowering warehousing for their livelihoods.

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After two white papers from twp successive governments, the Care Act was hailed as a major victory as the next generation of social care for adults. The jewel in the crown of the act was the care cap, limiting the amount any one person would pay for social care within their lifetime. It was the brainchild of Andrew Dilnot, the current chair of UK Statistics Authority, who appeared to have little direct experience of social care, and the cap was perceived to be the end of the so-called social care funding crisis.

The cap was supposed to be implemented in April 2016, although after consultation with the Local Government Association, the government has decided to delay the implementation until April 2020, with many people including myself speculating that the cap will probably be scrapped all together. I am very pleased about this for a number of reasons.

Firstly, like the bedroom tax, it is one of those simple ideas that is actually more complex and costly to implement. In order to calculate the amount of care someone has spent before reaching the cap these ‘self-funders’, who currently have no dealings with local authorities, would be required to be assessed by social workers as if they were existing users, to establish a virtual budget that goes towards what they are seem to have spent. This means that self-funders will not just be able to present bills to social services when they feel they reached the cap, but will only receive the costs they are eligible for, which may be very different.

The initial estimates were that over 1 million virtual assessments across England would be needed within the first year of the cap! Not only will this pull social workers time away from service users in immediate need, but they will be required to confront a new type of virtual service user. Because these users, and their powerful families, will not be in crisis, and will have access to lawyers, if not be lawyers themselves, they will have the time, money and patience to demand every penny they can from social services, virtually, as they will not be interested in needs, risks or outcomes. I would foresee council’s legal departments being tied up for decades debating whether toilet rolls are a legitimate care cost.

Not only would the cap be extremely costly to implement, but I fundamentally disagree with the consumerism of social care it would bring. The reality is technology and policies like Personal budgets, and Personal Health Budgets, means there is no reason why anyone can not stay in their own home unless they require intensive nursing care. This means that care homes are now a lifestyle choice for middle class families, making the cap a tax break only they will benefit from, taking an estimated £6bn out of the social care budget in the next 4 years if the cap had been implemented! And remember this is what the charities fighting to end the crisis in social care funding have been asking for!

I feel that like health, education, and other services, social services should be about delivering the best possible outcomes for an individual, in a manner that is cost effective. This means investing in responsive services that enables and empowers people to be as socially independent as possible, taking the amount of money someone receives out of the equation. Personal Budgets and direct payments are an important part of this, but only to provide people with the support they need when they need it.

I knew from my own understanding that the care cap was going to be a disaster for some time, and it would have meant I may have been left without my support being review for years at a time, not always a bad thing, as social workers became overstretched. I am therefore glad the government has had the foresight to halt the cap before any damage was done, as it is now time to go back to the drawing board.

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I have been watching Humans on Channel 4, and the potential impact the idea of consumer focused ‘synthetics’, with great interest. If we ignore the storyline, I am really interested on how they would improve, or perhaps harm, the lives of disabled people, especially those of us who employ personal assistants to support us to live independently.

A synthetic would be the first viable alternative to employing personal assistants, and it is indeed an attractive offer. The greatest challenge to employing personal assistants is the interpersonal skills required to manage their emotional responses to this very intimate type of work, which is as much like a marriage as it is a working relationship. Having a synthetic, who can not get upset, bored or annoyed, is a very tempting quality to have, and I would be very interested in road testing one out.

It would need to be the right kind of synthetic, I would prefer a sexy Sam, yes the male one, as opposed to a strict Hilda. And here is where reality creeps in. Assuming I can not afford to purchase Sam as someone on a low income, and I am asking the state to give me one instead of the funding to employ a personal assistant, what criteria and restrictions will be placed on the synthetic? Government ministers would not miss the opportunity to have the ultimate machine to help them in their battle to avoid unnecessary hospital admissions, obesity, diabetes and so on.

Would having synthetics make it too easy for local councils to doll them out like sweets to everyone, regardless of the level of assistance that is required? Could this make people lazy and more dependent than they were before having a synthetic? Will a synthetic follow the orders of it users or will users find themselves slaves to their synthetics, telling them how they should live? Knowing how national and local government works, I think the latter is more likely on the NHS and social care models, where true independent living is only afforded to those who can afford their own synthetics.

I always said I would not consider a support dog, instead of a personal assistant, until they can cook my breakfast and drive my car, when I had one. A synthetic would, on paper, be able to do what my current personal assistants can do, and probably more, but I think after the novelty has worn off, I would be left with a gap in terms of meeting my emotional needs.

Do I really want someone or something that would simply agree with what I say, because they are programmed to, as oppose to having any emotional investment in the subject matter? Will I miss having a real person supporting me, who is able to read and understand my emotions in the context of their own? Would having something I can swear, scream and shout at all day, without any reaction or come back, somehow make me become a crueller person as interpersonal skills become less relevant?

The Humans series is a simple but fascinating story that really challenges the notion of personhood as it has explored the issues and impact in depth, including the impact on social care. I am unsure if synthetics will be the future as it is not as cost effective as progressing other technologies. I know technology has and will always have an important role in the liberation of disabled people, as I have experienced first hand myself, but I think we will never know how, like we will discover with the progression of wearables, like my Apple Watch.

If I was offered a synthetic tomorrow, I am unsure the geek inside me could refuse.

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