Do carers really know best?

I dislike the term ‘carer’ for a number of reasons as well as the whole carer rhetoric, although I am quite aware that this is an sensitive subject for most people.  Throughout my life, the term ‘carer’ has been used to undermine my intelligence as someone most people regard as needing someone to look after their affairs, which is not the case at all.

The typical image of an informal carer is the spouse of someone with dementia who is portrayed as isolated and alone, as their partner is portrayed as lacking the ability to make decisions or contribute to the family. This picture may indeed be accurate in some cases but as the awareness and identification of carers has increased, so has the range of situations.

But what is worrying is that in many cases, individuals and professionals are automatically identifying family members as ‘carers’ even when there is not actually a caring role being performed. This means spouses, parents and siblings of sick and dysabled people are automatically being labelled as carers . Even young brothers and sisters of dysabled children are being labelled as young carers simply because they are related.

So what is the problem with this? Well, amongst the rights carers have is an unwritten right to make decisions, often very important ones, on behalf and for the individuals they look after, even when they have no legal right to do so. More and more  health, social care and other public services are simply taking the carer role at face value and relying on what the carer wants unchallenged, because it is easier.

When you add the fact the public seess carers as unsung heros who save the government money, a message cleverly crafted by the carers movement, I hope you can see there is a problem here. Your parents, partners and siblings can be wrong and can even hate you, but call them carers and everyone things they are wonderful and know best.

This is why I am on a mission to decare our nation and reclaim families as families. What I mean by this is  that the carer rhetoric has destroyed families, where power dimensions have been perverted. What we need to do is to focus on  family cohesion, ensuring a family can remain a interdependent unit.

A part of this is acknowledging not everything family members do for each other, like cooking a meal, can be regarded as an act of care, but rather an act of interdependency. Informal carers often spend far less time performing what social services would see as care tasks than they assume they do. Being a couple or family generally involves housework and other tasks.

Another issue is understanding those who are perceived as being ‘cared for’ often have a lot to contribute to the family, and it is important to recognise and support this interdependency, where people can be seen as caring for each other in different ways.

If we carry on supporting the carer rhetoric than we are legitimating a level of subtle abuse of choice and control. Family members who play a significant role of a sick or dysabled person’s lifes, whether as a child or adult, have to be equally trusted and distrusted as paid care workers, this is simply what I have always asked. People suggest that my healthy distrust is somehow personal,, it is not, it is a commitment to proper safeguarding of those more prone to vulnerable situations.

Do carers really know best? No, they are simply humans like the rest of us

Blaming WCA for suicides is cruel and unforgivable

It has almost become a fact that the Work Capacity Assessment is linked to suicides and other deaths. A recent piece of academic research claimed that in total, the assessment has claimed 590 suicihdes. However, I would like to suggest the truth is very different.

In exploring the recent research, the National figure of 590 came from just 6 suicides within the sample size. These 6 were guessed to be WCA related because that was the number in the sample above the national average. When you understand left wing disabled activists were consulted in the design of the research, you can understand why the assumptions and conclusions were made.

Can WCA be linked to stress and therefore suicides? Absolutely, but it can also be linked to 100s of other reasons from work to family pressures. Those left behind from suicide victims can spend years trying to understand why they did it without finding answers. The ‘automatic’ link with WCA is symbolic to the bigotry and assumptions that fear the inclusion of dysabled people, which is institutional. This has to be taken into consideration when a coroner rules a suicide is WCA related, an easy answer for a grieving family to accept.

When activists like John Pring of Disability News Service spearheads hostile awareness raising in blaming WCA for suicides, my question to them is what is their end game? I am sure each claimant will find the test stressful for very different reasons. This means any kind of redesigning the test will be as useful as rearranging deck chairs on the sinking Titanic since it will never please everyone!

This leaves 2 options. The first is the one I woukd prefer and that is stress embracement. There are difficult things we all have to do in life and it is about being supported to do them. This could include advocacy, coaching people and supporting people to have a positive attitude, moving them from being a passive victim and towards being an active partner in services.

The second option is the one I fear John Pring and others are heading towards, which is stress evasion. This means that their solution to the alleged suicides is to automatically not assess people who appear stressed, presumingly automatically ruling them indefinitely unfit for work and therefore society.

It is a crowd pleasing idea but the long term consequences are deeply worrying. If stress suddenly becomes more than an issue or illness, as it is now, into something we have a human right not to experience, where will it end? Mortgage applications? Exams? Blood tests? Weddings?

There are only 2 ways we are currently guaranteed someone will not experience stress. The first is to put them in a drug-induced coma, and the second is to end their lives since living is by default stressful. If we now link this back into  the  institutional bigotry and assumptions that exist in terms of dysabled people, we can see how John Pring’s campaign can be used to argue for exclusion and eugenics, making it a very dangerous game to be playing.

No one should be using anyone’s suicide for cheap political point scoring, and I find those who do cruel and immoral. No suicide can be blamed on one factor and we can not ask DWP to take over from the NHS in terms of assessing and treating mental distress, as John Pring and others are demanding.

We need to support people to embrace and overcome stress, not avoid it, as the only way forward.

WCA May Have Failed But What Activists Want Is Worse

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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via IFTTT

WCA may have failed but what activists want is worse

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.