Think min.wage is bad- try working for £1.58 an hour…


…no I’m not talking about sweat shops. I’m talking about being a carer in Britain today. We criticize developing countries or big multi-national companies for failing to pay wages which cover the basics- while I’m completely behind that- did you know that all over this country the state knowingly abuses carers? Knowing that carers won’t fail to help their dependents but the state uses them as free or cheap labour. Refusing to pay them an amount that will come close to covering the basics, if it pays them at all, means that quality of life for carers is usually very low. There are so many criteria through which many people working more hours than a full-time job fall through and are not paid at all. My carer, Paul Wilkinson writes about his experience as a carer and a student.

The 2001 census revealed that 1.9 million people provide over 20 hours of unpaid care a week with 1.25 million providing over 50. The 6 million who are paid using the carer’s allowance benefit receive £55.55 a week for providing over 35 hours of care, which works out to disgustingly low amount of £1.58 an hour!

These grim statistics are accompanied by the disturbing revelation that carers themselves are twice as likely to become long term sick or disabled as the average person.

I’m one of the 1.25 million who provide over 50 hours of unpaid care to a loved one. I want to look at the problems faced by carers and the help, or rather of the lack of help, available to them. While I could write endless pages about the plights of the disabled, and rightly so, in this case I want to stick with what I know firsthand. The problems faced by the disabled and carers are, however, interwoven so from reading this I hope you will gain an insight of both sides of the coin.

source: kingston.gov.uk

First things first, it’s important to note that not all disabled people will have carers. Some manage perfectly well without the need of care, or at least get by with relatively little care. Others don’t get the support even if they desperately need it.

A carer has a lot of pressure on them. They are ultimately responsible the well being of their dependent. They are required be on hand literally twenty-four hours a day, seven days a week. Some have to be ready to wake up at any point in the night and then to be completely alert throughout the day because one mistake could set the dependent back months. That’s one of the worst things about disability. It can take someone months, even years, to reach a certain level of health, however only a small mistake to send someone back to the beginning. Due to the lack of provision to support carers, you are essentially never allowed a day off, and definitely not a sick day. I manage to get away for a couple of hours a week but that’s simply not possible for a lot of carers. Insufficient support for the disabled puts a huge burden on carers, and I’m sure a lot of disabled people would agree that sometimes their carers bare the brunt of consequences when systems or other people fail to play the role in help they promised or when the state fails to provide the right care.  This is increasingly becoming a problem for a lot of people because of government cuts. Anyone who works with disabled people knows that often benefits and additional support is cut when clearly that person is in dire need of the support they were getting.

A good example of this is where DLA is cut for people with immobility issues, part of the support they get is specially adapted cars. When the benefit is cut, they lose the car and therefore their independence, meaning that a carer (if there is one) needs to do all of the things the disabled person used to manage to do for themselves. It’s a frustrating cycle.

Many struggle to be able to leave their dependent to go to lectures, so to work, is out of the question. Inevitably, the financial pressure on them can be overwhelming.

If you are a full time student and a carer, whether it is for a parent, sibling, partner or child, the cold reality is that there is no financial help for you. Absolutely nothing. Often when I have made this claim people refuse to believe it. Even professionals (doctors and Support Centre Staff) tell me that it can’t be true. I often get told, for example, that I could just apply for Carers Allowance. It turns out, that in all their wisdom, those running the country decided that you are not entitled to carers allowance whilst in full time education.

This technicality has had massive effects on young people’s lives. For example, imagine an eighteen year old caring for a disabled parent. This 18 year olds household is financially reliant on the Carer’s Allowance, because it is increasingly difficult to live off the government’s support. Despite the popular impression of the ‘comfortable’ life that people have on state benefits, those who are reliant on Disabled Living Allowance, Carer’s Allowance or Incapacity benefit seriously struggle to stay out of poverty. This is something which is getting worse with the disabled being targeted disproportionately in the government’s austerity measures.

Now he or she has ambitions to study at university, however, how can they do so if it will mean losing their allowance and their family falling into poverty? In an impossible situation where the carer is ultimately restricted in a personal and professional capacity. The same restrictions apply to all carers who are trying to find an occupation that could fit with their care responsibilities.

This not only effects the carer, but puts the dependent under a lot of pressure forcing upon them an unnecessarily burden of guilt. Which in turn usually leads a worsening of their symptoms, meaning the carer has to do more, and so the awful cycle goes.

14year old young carer helping her mom

14 year old carer helps her mum Image via Wikipedia

For student carers there is also very little educational support available. When a carer is up all night with a dependent, has to take them to medical appointments, or is unable to leave them alone due to ill health; there is no access to, for example, note takers, lecture recordings or similar resources that are made available for people with medical conditions. Ultimately this means the carer’s work suffers significantly without any recognition from authorities that they have any kind of disadvantage.

It isn’t all doom and gloom. In my experience, University staff have been incredibly helpful and supportive. I’ve been given extra support from lecturers, personal tutors and my head of year and have been offered extension on essays and an exam schedule split over the normal exam period and the re-sit period. I cannot speak highly enough of the individual members of staff who have gone out of their way to help. The problem is, is that this is support has been down to the individual’s discretion. With disabled students, law states that universities do all they can to make sure that they are not disadvantaged. Also, for disabled there is Disabled Student’s Allowance which is used to fund support workers that go to lectures on their behalf.  No such thing exists for carers. Ultimately, a carer’s life can focus around the life of the person receiving the care, if that person suffers an unpredictable illness, such as fibromyalgia, then the carer’s life too is unpredictable. Attempting to fit in full-time care around a full-time university course means being incredibly efficient and organized- that’s something I’ve had to learn. When the system or the routine fails because of a ‘bad’ day then things can easily go into disarray, in many cases, carers either fail or prepare properly or even fail to attend assessments. Until there is official recognition for carers, they are always going to be in a precarious position.

I must stress that I do not intend to give an impression of carer’s being more hard done by than disabled students. Disabled students face a massive uphill struggle in university. My comparison is merely to reflect what could be done to help carers level out the disadvantages they face. Also I don’t mean to paint a picture of a carer’s life being miserable. It suits my purposes, however, to focus more on the disadvantages one might face than the aspects which are rewarding.

There is a massive lack of awareness of both the disabled and carers in university and in the wider world.  Something which I hope will be addressed soon in order to give some of the most vulnerable and most gifted persons an equal opportunity to excel in life.

One of things I have seen frustrates Paul the most is that not only is there not a forum to voice your frustrations and affect change, but very few people care. He said to me this morning that he could tweet all day about carer’s allowance and no one would reply or re-tweet but if he wrote about Justin Bieber he’d get tons. Thanks for reading this post- will you help to raise awareness?

Justice will not be served until those who are unaffected are as as outraged those who are – Benjamin Franklin

The state is disabling the disabled


This guest post was written by my boyfriend and carer, Paul. He is only 20 but is my full time carer, I won’t go through the indignities of listing all of the things he has to do for me everyday, but trust me when I say everything, I mean every little thing. I suffer from invisible illnesses so even though many people have told us there is all sorts of help and support available, this simply isn’t true. I get some level of DLA but the real amount of care I need is not recognised by the DWP. The state will not provide the support I need, my parents are ill themselves and not in a position to care for me, and now I am lumped into the category who are thought t be unfairly claiming DLA. I may not look unwell, when my friends see me, it’s hard for them to see any difference in me, but my doctor told the DLA my medical record, how I turned up at her office screaming in pain, and in my pyjamas, but that doesn’t make any difference. The truth behind the cuts to disabled benefits is ugly, and I can’t bear to write about it myself so Paul has written a guest post telling our story in the hope you, the reader, will listen and stand up for all of those too ill to fight for the support they need.

This week the Department of Work and Pensions have announced figures finding that only 7% of incapacity benefits claimants that they have tested are ‘unfit’ to work; 17% could work with the proper support and 39% were moved to Job Seekers Allowance.  Before you sharpen your pitchforks and light the torches I urge you not to take these statistics at face value. These findings are clearly bias at best.

Firstly, consider that the government have committed themselves to cutting the cost of benefits on the state and helping get the sick back to work, giving targets not linked to any research, so for example the government intend to cut say 17 people, they will find a way to cut those 17 people. The government want reduce the Disabled Living Allowance (DLA) bill by 20%, unless they’ve discovered a universal miracle cure for people’s illnesses, it will mean that some of the most vulnerable in society will be placed in an even more precarious position. DLA is not intended for people who are not working, it is given to all disabled people in recognition that they have extra costs and difficulties in their day-to-day life, for example people whose mobility is severely restricted are able to borrow a specially adapted car so that they are able to drive, this obviously helps disabled people into work, it is not free money, it is the support urgently needed. Only those who go through the invasive, degrading and timely system are able to get it. Incapacity claimants receive a higher income than those on Job Seekers and since May 2010 the government has attacked the position of the disabled through cutting. In light of this I find it hard to see how the intentions of the DWP can be viewed as legitimate.

As a carer, I have witnessed the application of disabled benefits and medical testing first hand. I can assure you that the process is far from neutral. The application itself is ripe with questions designed to ‘trip up’ claimants. The most scandalous part, however, is with the medical tester. They are committed under exaggerating the level of an applicant’s illness. They will look at a claimant looking to prove they are fit to work. In my experience, part of the reason why my girlfriend was refused was because she smiled, we were astonished to see that in her report. Even more incredible was that the examiner noted that she seemed very awake and alert even though she was actually sleeping in the waiting room when she was called. Additionally, few people are approved for DLA because of one disability or illness- it is well known that several disabilities are needed to get approved.  As a result a large number of applications will go to appeal, even when it is obvious that they are certainly too ill to work, and 39% will be overturned. The testing is thorough and always pitted against you. The system works on the assumption that you are lying unless you can prove otherwise, even letters from doctors are ignored a lot of the time. The DWP no longer carry out tests at patient’s home, as recognised by a recent parliamentary paper, it is incredibly difficult for a lot of very ill people to even get to the medical examination and often has a negative impact on their health. For Kate, she was pushed incredibly far beyond what her body could cope with at her medical examination in October, and she has never fully recovered, her medication dosage had to be doubled. The idea that 93% of those who had gone through the process, and managed to be approved, would be fit to work and had fooled the DWP is absurd.

The figure for 36% dropping out of the process also needs to be seen in context. Do not interpret this as 36% of claimants dropped out because they don’t have a legitimate claim. A large number of applicants will be suffering from mental health problems meaning they won’t have the capacity to complete see the application through. Unassisted the process can be overwhelming for those unable to work. Social services are very over-stretched so it is not always possible for to get a social worker. I heard of one case where a man whose mind had been classified as that of a three year old  lost his DLA payments, how is sufficient care going to be provided? And who will support the disabled who are no longer able to be independent without the aids they are lent?

For the 17% that could work with sufficient support. What level of support would this require? And where is this support going to come from? If it is employers responsibility to provide the facilities then where is the encouragement to hire someone with such extensive needs? DLA was created to provide this support. And with rising levels of unemployment who will employ a disabled person who will need lots of support, at the cost of the employer?

If these figures tell us anything, it shows us the intentions of the government and the DWP to cut the cost, no matter what the consequences are. Empty statistics such as those published this week are all about justifying the cuts to the public because they know that those on these benefits are not well enough to make their voices heard. Will you stand up for them?

“I’m not a token woman”


Nick Clegg, speaking at the Lib Dem conference this week, told the party that there needed to be more ethnic minority, disabled and female members. He said, “We have some exceptional women in Parliament…but we don’t have enough.” Previously, the party has been against positive discrimination but Clegg now proposes a list of Lib Dem  ministers with 50% of places for female, 20% of places for ethnic minorities and 10% of places for the disabled. This came after the Hansard Society condemned the lack of women in the Coalition, revealing that only 32 out of 184 cabinet committee seats. When this issue was discussed at the Lib Dem 2002 conference, female MPs wore t-shirts with the slogan, “I am not a token woman”, to make a strong point. The idea came from Jo Swinson, who still opposes all-women short lists. Who is right? Does Clegg really want to have better representation in his party and do his part to remove glass ceilings, or is this simply a way for his party to gain popularity again?

Until recently, I had a firm opinion on this topic, all-women short lists are not the way to improve equality, but no I ask myself, how much has society really advanced since equal opportunities and anti-discrimination found its way into law? Little, if Parliament is anything to go by. True that females have become MPs, we have even had a female PM and, from the politicians I have spoken to, treatment of female MPs in the House has improved, but that is not to say that there is no more ground to make.True equality is impossible, but isn’t it about time for institutions, like Parliamentary committees, to be forced into giving equal opportunities?

“We have got fewer women around the Cabinet table than we have had in years- we are going backwards in numbers.” – Ruth Fox, the director of the Hansard’s Society’s Parliament and Government Programme

Opponents will say that discrimination of any kind is immoral, no one should get a job because of their sex, the colour of their skin or because of their disability. And perhaps they are right, all-women short lists may not be the way to solve the issue, Swinson has a point, work needs to be done in order to ensure there are actually women to go onto the short-list. It seems to me though, unless an alternative is found, all-women short lists is a step in the right direction. Perhaps it will encourage women into politics and at least that means that if/when women actually get to that stage then they won’t have a stumbling block.One thing is for certain though, non-intervention has not worked and, at least in politics, the glass ceiling remains.

What do you think?