Open letter to George Osborne

Dear Mr Osborne,

You have spoken a lot of rhetoric about “people who want to work hard and get on”. It sounds fine. Few people would argue with supporting those who want to work hard and get on. But this language automatically excludes as at best insignificant or at worst worthless one particular category of people.

There are some people who, by reason of severe, usually multiple, disabilities, will never be able to be gainfully employed. My daughter is one example. She is in her early thirties and lives in a residential care home. She has quadriparetic cerebral palsy, a learning disability, autism and partial sight. Please don’t feel sorry for her. She has a very good quality of life.

I read a policy document which your government has published on the subject of disabled people. It was called “Fulfilling Potential”. In many ways it was a laudable document. It had much to say about enabling disabled people to take their rightful place in society, work in fulfilling jobs, pursue excellence in sport and so on. But there was a glaring omission in this document.

There was no mention at all of those people whose contribution to our society will never be an economic one. How are they to fulfil their potential? My daughter is incapable of carrying on any form of employment. She has to be washed and dressed, supervised while eating and drinking, carefully watched to ensure that she does not do anything injurious as she has no sense of danger, and accompanied everywhere she goes. She cannot stand up or even sit unsupported. These are the things she cannot do.

But the things she can do are wonderful. She can tell you the name of any piece of music she hears, with its composer or artist and also what key it’s being played in. She can play on the piano with her right hand any tune she has ever heard even once. She can remember and recall almost anything you might care to ask her about any event in her life. She can express deep affection that is more uplifting to the recipient than you could ever imagine. She can be hilariously funny, with or without words, and she brings immense joy to everyone who has any dealings with her. We recently took her away for a weekend and when we returned her to the care home, the staff said her absence had made them realise how much she influences the atmosphere in the home, that it had been much less fun without her and they had really missed her.

But in your brave new world she is almost a non-person. Her contribution to society is not an economic one. It cannot be measured or quantified. It is, in both senses of the word, an immeasurable one. And for you, that means it does not count. I can assure you she works hard. Every single thing she does requires an exhausting effort. And she wants to get on. She absorbs new information and ideas like a little sponge. She never saw the end of formal education as a reason to stop learning.

When she was a child, everyone thought she was very cute. She sat smiling in her wheelchair with her little pigtails and stole everybody’s heart. So how is it that in Tory Britain she has suddenly gone from cute and adorable disabled child to skiving benefit scrounger in one bound?

If you think I’m exaggerating, here are two verifiable facts: Firstly, she has been fined for fraud for trying to claim free prescriptions. This was extremely surprising to me, as she is entitled to free prescriptions. I was asked to provide proof of her benefit, so I contacted the DWP to obtain this proof. I was told that she is not entitled to free prescriptions, as she is on contributions-related ESA instead of income-related ESA, and only the income-related version of the benefit would entitle her to free prescriptions. I pointed out that she has never paid any National Insurance contributions, and should be on the income-related benefit. I innocently suggested that there had been a clerical error. I was assured that this was no clerical error. It was DWP policy to transfer people onto contributions-related ESA even if they were entitled to the income-related version, as the income-related version would normally give them more money. It was for the disabled person to find this out and challenge it if they wanted to be put on the income-related benefit. The lady offered to send me the forms so that I could apply for the income-related benefit for my daughter. She apologised that the form is “about twenty pages long”. It turned out to be forty-two pages long. She then checked my daughter’s records and told me that I had in fact completed and submitted this form eighteen months ago but it had not been actioned. I asked if they couldn’t simply action it now and was told no, after deciding not to action it they had not kept it and I would have to fill it in again. So now who is committing benefit fraud? Not my daughter. It seems the DWP is fraudulently withholding from her a benefit she is entitled to.

Secondly, every time my daughter has an annual review, or applies to go on an assisted, accessible holiday, I am asked if I want to write “Do not resuscitate” on her medical notes. Three social workers and a nurse have told me that this is an NHS requirement. I have two other daughters who are neurotypical – they are physically able and their intellectual function and social understanding are unimpaired. All three of my daughters are in good health, and all three have a normal life expectancy. So why is one of them being singled out for the suggestion that we should write “do not resuscitate” on her medical notes? She is a cheerful young woman with, as I have already indicated, a great sense of humour and wonderful musical ability, and everyone who works with her falls in love with her. She is a much loved and very valued member of our family. No one would ask my other two daughters to consider refusing resuscitation. I find it offensive that society assumes that disabled young people have such poor quality of life that they should not be given proper care if they become ill. It is the ultimate disability discrimination, giving the message that if someone’s life is different and more limited than average, he or she is disposable.

Mr Osborne, bad things happen when people are valued only for their economic contribution. People are of intrinsic value in and of themselves. When we lose sight of this we lose something fundamental of what it is to be human. There are some people who will always cost the country money and will never repay it in taxes, national insurance contributions or in any other way. This is why it is so important that we celebrate the other kinds of contribution they make to society. My daughter provides employment for a small army of carers, and makes their work pleasurable and fulfilling for them. She brings real joy into the lives of everyone who comes into contact with her. She is capable of deep love and fierce loyalty. She makes our great country a better place. And your policy towards disabled people considers her at best a burden and at worst a scrounger. Unless we reverse this terrible way of looking at people, Britain will become a very unpleasant place to live. Please find a way of recognising that, as Jean Vanier recently told an audience in the House of Lords, the strong need the weak, and that people like my daughter make Britain a place worth living and show us that money cannot buy the things that really matter in life.

Yours sincerely,

Rosamund Bayes

If you also care about this, please sign my petition here


20 thoughts on “Open letter to George Osborne

  1. This articulates what many people around the country will probably not be aware of. I’m sure your own situation is similar to so many others too and this letter expresses what needs to be heard and understood by all of us.

    Let’s hope Mr Osborne actually gets to read it and I for one will be more than interested to know what his response and the response of his party is. This is also an issue that the (mostly ridiculous) media circus would do well to get hold of and bring to the attention of the public while asking for a response from the other political parties too!

  2. Well said and well written, Ros: thank you. Shared on twitter & facebook and petition signed.

    Long may your daughter live and light up the lives of those around her; and long may you and your family continue find the courage, determination, love and strength you need to fight not only for her but for the many others in similar situations.

  3. Ros, I saw you post this on the ACW Facebook page recently, but have only had time to read this properly today. I am sharing this to Facebook and Twitter, and have signed your petition. Treating people as merely economic units is a cancer in our political life right now. The same carcinogen is seen in policies on school education. God bless your campaign.

  4. Ros (if I may) this moved me to tears. I’m not sure if they were tears of emotion at your love for your daughter (I have a son with a disability, though much milder, and love him to bits), or tears of anger at this profoundly unChristian government we have had for the last five years.

  5. just… loved your writing. It’s clear where your daughter has inherited her lovely personality from. God bless you all xx

  6. So good.
    I’ve shared it everywhere I can think of, and seen others sharing it too. Hope others read this story and take note – it is scary and infuriating what this government is doing.

  7. A footnote to this. My local MP, Sir Gerald Howarth, contacted me about it. Despite the fact that I don’t vote Conservative I will give him his due, he is an excellent constituency MP. I’ve contacted him about local disability issues a number of times over the years either for my own family or on behalf of friends, and he has always been very quick to right injustices. He is contacting the DWP to get them to put my daughter on the correct benefit. Good for him, I will be very grateful if he succeeds, although this still leaves the wider points in my letter to be addressed. The one person who hasn’t responded at all is the addressee, despite my emailing it to him.

  8. In one way the strong need the ‘weak’, but they also need the unique strengths that the ‘weak’ possess. Your daughter sounds as if she has strengths most of us could only dream of.

  9. It is not only disabled people, though agree with you that they are particularly hard hit.

    It is everyone, if only you would work a little bit harder, you would not be so poor.

    Or if we cut your benefits you will work harder. Though for the rich it is if we cut your taxes pay you obscene salaries you will work harder.

    For a window cleaner cleaning the Glossy Towers to Mammon, he would have to work 300 years to earn what the boss in the penthouse suite earns in a week.

    If you wish to see what is important to a society, look to their largest buildings.

    Turn it around, if paid a Living wage, would not have to work so hard, maybe work so many hours, or have two or three, temporary Minimum Wage jobs.

    Go one step further, pay a Basic Income, people can choose to work or not, work in social enterprises, the collaborative sharing economy.

    The policy pursued by the economic illiterate George Osborne does not even make economic sense.

    The poor spend money in the local economy, the rich do not. The rich do not spend their money, they hoard it.

    The Tories love austerity, it is an excuse for Shock Doctrine, slash and burn of public services, library closures, welfare cuts.

    Qualitative Easing showered money on the rich, with a cut to greedy bankers.

    Sacred Economics
    Co-ops – sharing – commons
    The Emperor’s New Clothes
    In the cafe where you can pay what you want, what would you choose?
    Rise in foodbanks

  10. You are correct Gerald Howarth will raise issues on your behalf, that is his job, but to describe him as an excellent constituency MP is ridiculous.

    It is irrelevant whether or not you voted for him

    Look to Caroline Lucas, who actively works with the grass roots in Brighton.

    You also need to look where Gerald Howarth gets his money from: Bahrain, Japanese tobacco industry, pay day loan companies.

    Gerald Howarth: Who is he acting for?

    • I’m no fan of the Conservative Party or its MPs, but I will say this for Sir Gerald: he has a very genuine concern for his disabled constituents. I have written to him a number of times on my own family’s behalf and many times I have drafted letters for friends with disability issues and every time he has shown a passionate zeal for righting injustices for disabled people. This stands in stark contrast to his predecessor who couldn’t give a toss when I wrote to him. He told me that he has personal experience within his own family and hates to see disabled people unjustly treated. I know disability is not the only important issue in the constituency but it’s sadly rare to find anyone who takes it seriously or genuinely cares about it and Sir Gerald does.

      • Maybe you have hit a soft spot.

        I found Julian Critchley was better.

        We met a couple of time in the House of Commons, and got on ok,

        But remember when Julian Critchley was MP, public attitudes to disabled was a lot different to today.

        If Gerald Howard so passionate, why did he not oppose and vote against Bedroom Tax (disabled are worst hit), and removal of special funding for disabled?

        The evil ConDem government have carried out war against the poor and disabled to benefit their rich friends.

        Gerald Howarth failed his constituents Big Time on The Tumbledown Dick. He and three ward councillors (all Tories, two members of the planning committee, one the chairman), stitched up a dirty little behind closed doors deal with McDonald’s to destroy the pub, a c 1720s coaching inn, for a Drive-Thru McDonald’s . One of the councillors has been gloating ever sense, and Gerald Howarth had the gall to distribute a leaflet claiming he had Saved The Tumbledown Dick.

        The attitude of the local council, the Rotten Borough of Rushmoor, towards disabled is appalling. I have yet to get them to deal with on pavement parking forcing people into the road and A-boards blocking the footways.

        Then there is dysfunctional Stagecoach, who are running clapped-out fit-for-the scrapyard double decker buses with no disabled or buggy access on the No 1 bus route.

        But keep up the good work, and encourage others to do the same.

  11. Sadly my experience of Julia Critchley was that he was rude and uncaring. Needlessly, because many didn’t behave like that to disabled people even back then. He was just following Maggie Thatcher’s lead. She cut hospital waiting lists, but omitted to tell the world that she’d paid for it by axing things like community physiotherapy for children with cerebral palsy, meaning that kids like my daughter underwent traumatic, frightening and painful operations that could have been avoided with proper physio. I’m afraid the Tories have an ideological dislike of anyone who can’t earn their own living, and of course that includes the most severely disabled people. That’s why those disabled people in the greatest need have been hit 9 times, yes, that’s 9 times, more than average by the benefit cuts. People should be in no doubt – the Tories will launch an even fiercer attack on severely disabled people if they are the majority government. They plan to extend benefit sanctions to those in the lowest-paid jobs. I totally agree with you about the Tumbledown Dick – I had wondered which of our councillors were in McDonalds’ pocket, to fly in the face of the popular will as they did. And as soon as I get the time, I intend to submit a Freedom of Information request to know how much additional revenue has been raised since November by removing free parking from the most severely disabled Blue Badge holders. I’m guessing that a paltry amount will have been raised by charging my daughter 10% of her disposable weekly income to park for church on a Sunday morning. And I wonder how many Blue Badge holders have, like me, stopped using the council car parks in favour of parking for free on the yellow lines.

  12. Gosh, this is a well written, powerful, and incredibly important article.

    Sharing now.

    You paint a lovely picture of your daughter, and Yes, she deserves to live, to be happy, and to be appreciated for who she is! My own daughter is disabled, and will always need support to survive, I was appalled to read that you’re asked to fill in do not resuscitate forms!

    Thank you so much for pointing me in the direction of this important awareness piece. And for taking the time to write it.

    All the est to you and yours, Kimmie

  13. Pingback: An odd feeling, walking away from the polling station singing… | Phil's Boring Blog

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