A Triumph? Of Sorts....

It would seem that the government are finally willing to step down over plans to remove mobility payments for adults in residential care.

Expect fanfares and trumpets in the next few days. Expect to hear that this is a government who “listens,” who does the right thing. A government who cares for the most vulnerable.

A cynic, however, might point out that a government who even considers taking this most basic freedom away from some of the most profoundly disabled is badly out of touch with the needs of disabled people. Suggesting that disabled people should be kept housebound and unable to access society is so very disgusting that one would hope they would see that it was impossible. After all, I don’t reward my children for not kicking puppies.

If one were even more cynical, one might conclude that this measure, which was only ever set to save a paltry 160 million per year, was only included in the bill in the first place to be dropped in a warm glow of benevolence.

One might conclude that it was a measure so outrageous, so cruel, that it was always designed to draw attention away from  other element of the Welfare Reform Bill that were even more cruel, but much, much harder to explain to a wider public.

Such cynicism might lead us to conclude that Time Limiting Contributory ESA, which affects 700 thousand people and saves the government up to 5 billion over the term of the parliament is a much greater prize and that by giving ground over a miniscule 160 million, critics will be silenced.

The benefit cap, which is predicted to make up to 200,000 people homeless, the plans to cut housing benefit for some of the most vulnerable, cuts to childcare and child benefit – all of these measures save the government much, much more money.

So, when the Daily Mail and the DWP start gushing with paternalistic largesse, when they jubilantly proclaim their disabled-friendly credentials, let’s be glad. But let’s not, for one moment allow them to claim that they listened. 

Welfare Reform; The Human Cost

I wrote a piece for the Guardian today http://www.guardian.co.uk/commentisfree/2011/jun/21/losing-benefits-for-seriously-ill?commentpage=last#end-of-comments pointing out that whilst 7,000 cancer patients will indeed be affected by time limiting ESA, a further 700,000 people with long term or serious illnesses or disabilities will also lose their benefits.

It was posted late last night, and when I woke up, it had already had 160 comments!

One commenter in particular asked lots of questions which I tried to answer with facts, but ended up saying that he had "lost all respect for my argument when I pointed out that my husband earns £19k a year. He claims.

"I have to say that since Suey2y has revealed upthread that her household has an annual income of £ 19K AND SHE STILL WANTS BENEFITS ON TOP OF THAT, then she is the selfish one..... Frankly, she is rich, not poor"


I wrote this for him. And every man or woman like him up and down the country. I didn't write it in anger - I know lots of people feel the way he does. I certainly didn't write it for sympathy because I hate the bloody stuff. I wrote it because he makes the most important point of all : Can we afford to pay people like me?


This is my response :

"I really don't mind laying my life bare for you. It's an important point

19k is what my husband earns. He pays tax and NI on it. He pays VAT, just like you.

After tax, he takes home £1,280 per month.

We live in Sussex and our rent and council tax are £1025 per month
Our heating bills are £90 per month.
That leaves £165 per month to:

- Feed and clothe a family of four, buy cleaning products and loo roll,
- Keep a car on the road (without which I would be totally housebound).
- We consider a telephone line a necessity too in case I need an ambulance or emergency doctor.
- My hospital is 130 miles away, costing £60 in petrol every month for a round trip.
- We have to pay for my prescriptions which is another £42 per month. I have to eat special foods or I will die - not out of a whim or desire - and they are expensive.
- I have to pay 13.45 a week in childcare which is recompensed through tax credits.
- I get £135 per month in child benefit which I pay to the school for the meal some families get for free because I can't make them sandwiches in the morning. What is left goes in a fund to pay for their school uniforms and trips. They are not sick and suffer enough because Mummy is. It is their money.

Because my husband works, we get none of those things for free and no help with them. We don't want it. My husband has continued to work for 10 years when I could have claimed DLA and he could have claimed Carers Allowance and the state would have paid my rent and council tax.

The state would also have paid for my children's meals at school and free milk every day. Then there would have been the free prescriptions and help with travel costs to get to and from hospital. Crisis loans when I'm stuck in hospital for months at a time and my husband has to visit with the children. We would have got Income support too. And full child tax credits. There's probably more, but we just weren't interested.

My husband always said "If I stop working, we lose everything don't we? What does it say to the kids? We'll never get out of it." And we carried on, getting by as best we could.

We don't take holidays, we never go out we had to sell our house we loved so much to avoid spiralling debt, and still I am not complaining. We did it gladly, for ourselves and for our pride. (Oh, and I have the most fantastic husband & children in the world, so have little to complain about)

ESA meant we survived. Just. In poverty and because of the goodwill of a strong, supportive, achingly generous family and friend network.

It also meant I had some value in my own right. After studying for a degree, working hard through terrible illness for 10 years and raising two children, it acknowledged that I had some value in society of my own. Time Limiting ESA will mean that I am worth nothing. I must rely 100% on the charity of my husband.

My real heartbreak is that my condition is doing this to my family. We can't change it, there is no miracle cure (nor for those other 700,000 either remember) and I would give anything in the world to earn a wage. To use my considerable brain to get us out of this grinding, endless poverty trap, but my useless body won't let me. The 700,000 of us ARE reliant on the "goodwill of the state" and I'm fairly sure we wish with all our hearts it wasn't the case. "

**As ever please click on "Twitter" and "Facebook" buttons below to help me tell as many people as possible, thanks.