Enable us, Don't Disable Us

When I write about the cuts facing sick and disabled people, it's easy for that to become background noise in a society battling austerity on every front.

The Mum losing childcare, the school losing funding, the library closing, the young person who can't afford a home or a degree, the hospital shutting wards - we all know that cuts are hurting and will only hurt more over the next few years.

So why do I think that the onslaught facing sick and disabled people is so serious? Why, of all the battles, do I choose to fight this one?

Disability rights movements have fought for decades to change the way we see disability. Just 30 years ago, many sick and disabled people were locked away in institutions, excluded entirely from society. There is no doubt that we were considered second class citizens incapable of looking after our own needs. Work was a distant dream; living independently, taking part in society in any meaningful way was impossible.

With Care in the Community and the slow, painful birth of the Disability Discrimination Act (DDA), society changed the way it looked at disability. The whole emphasis shifted towards community living, personal funding and making the country a more welcoming and accessible place.

DLA (Disability Living Allowance) was introduced by the Conservatives under Margaret Thatcher to acknowledge that disability involved extra costs - accessible transport, higher utility bills, specialist aids, modified homes - and was supposed to replace and reduce the eye watering costs of institutional care, putting a little control directly into the hands of those who's lives were affected by disability.

Schemes like Access to Work provided funding to make workplaces more accessible, social care packages meant that many more people could live at home, community mental health teams helped to break down the stigma and exclusion faced by those with mental illness The Independent Living Fund helped just 21,000 of the most severely disabled people to also continue to live in their own homes whilst, in theory, the DDA meant that our rights to equality, access, dignity and employment were enshrined in law. By the mid noughties, with general employment rates high, politicians felt that sick or disabled people had all the help and support they may need to live independent lives with dignity.

As is so often the case though, the DDA sometimes proved a blunt tool. Is it discrimination for an employer to choose a non-disabled person for a job over one with a disability? You bet, but it's very hard to prove. Did every workplace and shop and public space become magically accessible? Sadly no. Did everyone get the care they needed in the community? Did healthcare become so efficient that we never had to wait for treatment? Of course not.

Nonetheless, the shift was broadly in the right direction and here's the really important bit - it saved the country billions. Every pound spent on enabling sick or disabled people to live independently, saved at least as much as it cost. Institutions closed and residents who previously cost society thousands of pounds a month were supported in the community and with modest disability benefits.

Every mobility scooter or wheelchair meant that someone previously unable to engage with society could do so, saving care costs and reducing isolation and exclusion. Every ramp or special aid funded through Access to Work meant that someone could get a job who otherwise may never have contributed financially to society. Every care package reduced the need for lengthy NHS in patient stays or residential care.

Decent disability funding is not about somehow giving people "stuff" they haven't "earned". It saves the government money. Even if we don't wish to make a moral argument for disability policy that aims to include as many people in society as possible, even if we ignore that that aim is enshrined in international human rights law, we can make a financial argument.

If a disabled person is no longer entitled to personal care, the simple fact is they cannot wash or eat. They certainly won't be getting a job or taking part in society any time soon. Cutting care further disables and excludes us.

If we can no longer access the mobility aids that allow us to get out and about, we will need more home visits and more help with shopping or appointments. Most things that we could do for ourselves then need to be done by others, costing thousands more in the long run and acting as yet another barrier to work.

If we lose benefits altogether as DLA is reduced by 20% and ESA by up to 93%, we become more dependent on others. As sick and disabled people face greater poverty and hardship, other areas of the benefit system simply find themselves taking the strain as people fall through the cracks.

But the truly sinister thing is that if you cut ALL of these things at once and combine this with the cuts faced by everyone else - cuts to childcare, to housing, to pensions, higher VAT, higher inflation - we risk turning the clock back to a time when sick or disabled people simply "disappeared." Every cut will further disable us, further exclude us and ultimately push us back into institutions. If the institutions no longer exist what then? We suffer behind four walls, trapped, excluded and invisible.

A political class who saved billions by putting our own care into our own hands have forgotten that it ever saved money in the first place. If they now take away the much lower amounts designed to enable us, they leave us with nothing. Work becomes less likely, not more likely. Friendships and relationships face more pressure, not less. Integration and enablement become unimportant. We turn the clock back to a time when out of sight meant out of mind.

The bottom line is that enabling sick or disabled people costs money. Does that mean we can't afford to do it any more? Is that REALLY what we want?  Are we really not going to consider the implications of leaving people in filth and poverty and despair, simply because they were born or became less able? Are we going to abandon the aims of a Disability Discrimination Act that hoped to create a level playing field? Are we going to drift back toward a time when sick and disabled people didn't count, when dignity relied on benevolence and philanthropy?

*************

Today is the 1st September. In a few days, the welfare reform bill faces it's 2nd reading in the House of Lords. There are lots of good articles appearing today as we all come back to the battle for a life of dignity and respect before it's too late. I will add links here as the day goes on, but please do join us in tweeting, sharing and linking articles wherever you can. On twitter, please use the hashtag #septembercomeback and let's show our politicians that we will not - cannot - accept a society that goes back to excluding us. 

Let's create a social media storm. Let's refuse to be "disappeared".

http://www.leftfootforward.org/2011/09/papworth-trust-survey-disabled-people-fears/#comments

http://thepotterblogger.blogspot.com/2011/09/sick-way-britain-treats-her-sick-and.html

http://inde-woman.blogspot.com/2011/08/box-ticking-exercise.html

DAnewsflash On 22 Oct disabled ppl to protest in cities across UK saying: stop the cuts. http://www.hardesthit.org.uk/


http://www.disabledgo.com/blog/2011/09/government-sends-threatening-access-to-work-letters/

http://stream.aljazeera.com/story/uk-health-contractor-accuses-online-critics-libel

http://www.guardian.co.uk/society/joepublic/2011/sep/01/cuts-targeting-disabled-people

http://www.leftfootforward.org/2011/09/how-the-disabled-took-all-the-jobs/

http://www.guardian.co.uk/commentisfree/2011/sep/01/welfare-reform-bill

http://carons-musings.blogspot.com/2011/09/signal-boost-george-potter-on-sick-way.html

**Due to great success, the #septembercomeback will now run all week :)

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. 

Ed Miliband and the "Cheats" and "Shirkers"

Quotes from http://www.guardian.co.uk/politics/2011/jun/11/ed-miliband-labour-leadership-problem


"Ed Miliband will tomorrow attempt to stem growing doubts about his leadership with an assault on Britain's "take what you can" culture which is open to exploitation by benefit cheats and unscrupulous bankers."


Oh dear lord, really? Him too? *Heavy, heavy sigh*


"Labour strategists are worried that Miliband will be further criticised for lacking hard ideas on how to cut the welfare bill when the party votes against the coalition's changes in the Commons this week. To counter such concerns Miliband will use tomorrow's speech to claim that in government his party would pursue a more radical reform of the welfare state than the coalition."


We've got alternatives Ed. We've been trying to tell you about them for years. At least it seems Labour will vote against the Welfare Reform Bill next week. 


"Rather than seeking mere cuts, he will say that Labour would look to restore the link between people's contribution and their eligibility for assistance from the welfare state."


What about those who were born sick or disabled or became so after just a  few years of working? I'm not sure the words "We will protect the most vulnerable" will carry much weight any more.....


"It is not just financial contributions we are talking about but contributions to the society they live in"


That sounds a little more promising.....


"The hardest truth is that too many people feel we became the party of those at the top and bottom who were not showing responsibility and shirking this duty: from bankers who caused the global financial crisis to some of those on benefit who were abusing the system because they could work – but didn't."


I wonder if the people who "feel" that have any facts to back up their "feelings"? Will language like that do anything to knock down the "scrounger wall" built up around sick or disabled people by the current government, the previous government or the media? Sounds worryingly like a consensus that will build it even higher to me. 

"A 'take what you can' culture which began in the 1980s was allowed to continue, unchecked, under the last government."

Ouch!!! That kick hurt!

Careful, careful, Ed. Please be very, very careful what you say and how you say it. Millions of sick and disabled people will be listening to every word. Will you throw us in the pot with the scroungers? Or will you admit that ESA was wrong, is wrong and is killing people? Will you defend DLA? Will you use the same line as Liam Byrne, that :

"We should be forcing more unemployed people into work, not forcing more sick and disabled people into poverty" ?

Or will you abandon us? And our families? And our friends and our carers? 

But forget my special interest for a moment. At a time when the global financial system has gambled away trillions of our money, am I happy to see a Labour Party that concludes that "scroungers" must be made to pay? Am I happy with a speech that splits the "deserving poor" from the "undeserving"? Is that the only policy my party can put forward? In a country being torn apart, Labour has decided it's all because of "benefit cheats?"

I'm sure the Daily Mail will be thrilled. Labour voters? Not so much. Compassionate voters with an inch of integrity? Not so much. Intelligent voters? God I hope not. 

I'll wait to see the speech tomorrow. Perhaps the Guardian have put a spin all of their own on it but I don't like what I read so far....


A little reminder before tomorrow Ed :

http://sarahevanslabour.blogspot.com/2011/06/lobby-your-mp-to-vote-no-to-vicious.html#comment-form

Research http://www.l-r-c.org.uk/files/WRB2R_briefing_%20Mar11.pdf