Disability and British policy: a personal reflection

My partner and I moved to Belgium at the start of 1999. We had a little girl, eighteen months old; and another child on the way. By the time her brother arrived that summer, our daughter was burbling away as two-year-olds do, asking for favourite toys, food and videos (DVDs had not yet come in) and delighting in the new arrival in the family.

And over the next six months, she lost it. The stream of chatter dried up. She stopped looking us in the eye. Creative play seemed to have come to an end. And the normal channels of communication were replaced by stereotypical repetitive movements, just like an autistic child would do.

Autism? Surely not. I had never heard of a case of a child becoming autistic after a period of normal development. But it turns out that such autistic regressions are not at all uncommon, usually around the third year of age. And so our beautiful girl continued to grow physically, while retreating mentally into a world that was not ours and never will be.

Of course, we were devastated; and the first decision we had to make was whether or not to move back to the UK, where at least we would be able to deal with health care professionals and social workers in English. By great good fortune, a close family relative was a retired psychiatrist who had worked with children with learning disabilities in England, and her very strong advice, delivered at an early stage, was that we should stay put in Belgium, where the social and health systems have not been gutted by decades of cuts.

And we did, and it was one of the best decisions we have made. Life with disability, whether your own or that of a close family member, is very tough. But we have always felt that the Belgian state was on our side, ensuring that our children could have a decent quality of life without that impacting my ability to contribute to the economy through my work. I am (thank God) well paid, and end up with a pretty hefty tax bill to the Belgian state. We get much more back in respect of how our daughters are provided for (our youngest, born at the end of 2002, is similarly afflicted, though slightly more able than her sister). Reforms to the system happen all the time, but they tend to be in the direction of making the system more accessible and flexible in response to individual circumstances – as a humane system would want to be. And I am glad that the same support, and more, is available to households less wealthy than ours.

As time has gone on, I’ve watched with horror (and relief for our own situation) as the British benefits system has been more and more thoroughly gutted in the name of penalizing the undeserving poor. Let’s be very clear: the last Labour government started it, with the 2007 Welfare Reform Bill which introduced the Work Capability Assessment, a test which effectively sorted disabled applicants for benefits into the deserving and undeserving poor. The British state is not on your side if you have any kind of difficulty, unless you comply with its humiliating demands to prove that you are worthy of being treated like a human being.

This cruel and ineffective policy was taken further by the Conservative/Liberal Democrat coalition, and subsequently by the Conservatives alone. There seemed to me very little to choose between George Osborne, who tastefully joked about Gordon Brown possibly being autistic, and Iain Duncan Smith, who was consistently on the front lines defending the government policies that he had designed and implemented.

And then at the end of last week, even Tory MPs could not accept the massive cuts in disability allowance that Osborne was proposing as part of the 2016 budget; and Duncan Smith, who (as the New Statesman put it) had spent five years in the Cabinet not resigning over cuts to disabled people’s payments that did happen, finally resigned over that one that won’t happen.

I watched the Andrew Marr interview with Iain Duncan Smith this morning. It was pretty electrifying. Whitehall has suffered a critical setback in its war on the poor and disabled. Ten years of rhetoric from all parties about disability scroungers was corroded into sludge in ten minutes by one of its principal architects. He described the budget as “deeply unfair” and unequivocally opposed the welfare cap. The terms of the UK debate on disability benefits have been changed out of all recognition in the last 48 hours.

I do not warm to Iain Duncan Smith who, if he is sincere now, should never have taken the job in the first place. He says, in effect, that he did not realise that government policy was really to support those who vote Conservative while punishing those who don’t. Either he is lying, or he is telling the truth, and neither alternative reflects well on him.

But the fundamental point is that the parameters of the British debate have been fundamentally reset. Even Tory MPs now know that the game is up, and the continuing cuts to benefits for the poor and disabled cannot be defended as either effective or fair. A lot of ink will be spilt and pixels tinted in the next few days on the impact of his resignation on the EU referendum and the future leadership of the Conservatives. Those are interesting issues, but, please, let’s not forget the people who this was all about – those whose voices have not been heard because they have been too busy trying to survive what successive governments have thrown at them.

  • Brendan Heading

    Thank you for sharing this Nick.

  • sadie

    There is much talk of equality/disability rights. It looks good on paper but in reality there are no such rights, not in this part of the so called civilized world.

  • AndyB

    Well done, Nicholas.

    I’m lucky – I have high functioning Autism, but the support is there through the Disability Employment Service and the WorkAble scheme.

    On the other hand, I have friends deeply affected by cuts to benefits and changes in entitlements, and NHS provision made inadequate by increasing bureaucracy (notably in GB, where how much money has been wasted on the internal market, PPP etc?)

    So it’s my friends now. It’ll be my family soon enough, and there’s every chance it’ll be me some day.

  • leoinlisbon

    Nicholas Whyte writes about the UK’s social and health systems being ‘gutted by decades of cuts’. He refers to the British benefits system being ‘more and more thoroughly gutted in the name of penalizing the undeserving poor.’
    According to the Office for National Statistics, the cost of ‘Incapacity, Disability and Injury Benefits’ for 2014-15 was £41 billion.
    (Unemployment benefits cost £3 billion.)
    Can anyone supply the equivalent figures for 10, 20 and 30 years ago ?

  • murdockp

    Of course people in the above situation and other comparable situations deserve more, a lot more.

    But its the the fraud, particularly in NI that is the issue here, people in their motability cars with not a thin wrong with them, using grandmas blue badge to go to town.

    20% of the population of West Belfast and similar stats for the likes of Newry, suggest the system is being bled dry by fraud.

    As usual it is the fraudsters that are spoiling the position for those in real need.

  • Nicholas Whyte

    It’s a fair question, and I don’t have full answers. In the first passage you cite, I refer only to the situation as I saw it in 2000. The second I think is an adequate reflection of government rhetoric about benefits scroungers, though I will be happy to be corrected.

    It’s interesting that the “Incapacity, Disability and Injury Benefits” cost had indeed snowballed to £41 billion in 2014-15, an increase of £7 billion over the last five years and £10 billion on a decade earlier (it says here). Yet very clearly, this increased expenditure was failing to reach those most in need. I don’t have an answer for that, just a rhetorical question:

    Who had been running it since 2010, overseeing an ineffective increase in spending of £7 billion?

    Iain Duncan Smith.

  • Vinaigrette Girl

    This (https://fullfact.org/economy/welfare-budget/) might be of interest as another starting point for discussion.

    Fraud is a drop in the bucket when it comes to disability benefits, and is not far off the amount still in the system which is, technically, due to people who leave it unclaimed.

  • Pasty

    For some reason those opposed to the Benefit Cuts have yet to raise the related issues that effect everyone in the country. One of those main issues is that the Administration of the Benefits under the Conservatives includes face to face assessment by a Health Care Worker, (that’s a Doctor, Nurse or Physio). These Professionals are then not able to work in the hospitals and provide treatment to patients and subsequently the waiting lists grow. At the same time Doctors (GP’s and Hospital Consultants) of the people claiming the Benefits who see them many times and have a deeper understanding of how their aliment effects them have their assessments questioned by a Health Care Worker who see’s the benefit claimant for 15 mins or so. So you could have a Physio legally saying through the dismissal of a claim that a hospital consultant who will have provided a detailed report on the Patient for DWP that they wrong in their medical conclusion. The monetary cost of paying Health Care Workers to question the consultants is not just in paying these people but the then failure in having them work in the hospitals were the waiting lists are growing and then having to attend review tribunals to defend their assessment over the consultants reports on the patients.
    The whole system is designed to provide share holders of the companies providing the Health Care Workers with large dividends whilst cutting the benefits from people who need the additional money.

  • Surveyor

    Suggestion and facts are quite different. Can you provide concrete figures for all this ‘rampant fraud’?

  • mac tire

    I’ve no doubt fraud exists within the disability system – it exists within every system. But you state it’s ‘being bled dry’ without one scrap of evidence for this. I’d say that welfare fraudsters should be clamped down upon (though that has been happening more and more since the Tories took power – with extra tests, examinations etc).

    However, murdockp, you fall into the same trap as many Britons who believe 24 per cent of all benefits were claimed fraudulently, 34 times greater than the official 0.7 per cent estimate.


    Large companies like Tesco and Asda get corporate welfare payments in that their low paid workers require their wages topped up.

    And let’s not stop there – welfare is the easy buzzword. I say we do it across the board. Now, wouldn’t it be nice if the same effort and will was there to weed out the tax avoiders/evaders, for example?

    A lazy post, murdockp.

  • T.E.Lawrence

    Brillant Article Nicholas !

  • Greenflag 2

    “wouldn’t it be nice if the same effort and will was there to weed out the tax avoiders/evaders, for example?”

    What and upset Mr Cameron’s friends and supporters in the City of London ? The Conservative’s 20 seat majority suddenly looks shaky .It’s not clear if IDS is laying political foundations for the post Cameron Tory leadership but even if he is -he has opened a can of worms /

    The terms ‘deserving ” and “undeserving poor ” go back to the Victorian era .Would anybody describe the shareholders /owners /top executives of Tesco or Asda or the banksters in the City as the undeserving rich of British society ?

    Excellent post by Nicholas Whyte -an eye opener.

  • murdockp

    We how about this press article for starters

    I don’t recall too many people from west Belfast signing up to join the British Army serving in Afghanistan so assume that missing body limbs is not the reason for the high figures, it must be something else.

    My post only made reference to NI for this reason, In the UK they actually enforce fraud and I stand by the abuse comment I made. I had this very conversation with a leading NI car retailer in the last month who said it was scandalous who they sold motability cars to in recent years as they had no evidence of disability in many cases, but they made a lot of money, so who cares when every on is a winner and Westminster are paying for it. This comment alone is statistically relevant I feel.

    Come to Newry and see the abuse for yourself, my statistics are based on counting cars / occupants in my own town and counting twenty / thirty cars parked in my main high street, both sides of the street all with blue badges daily and no one with disabled needs in sight. I see business men with them in Range Rover sport vehicles. I see people in sports gear with them coming from gyms, I rarely see genuine entitlement.

    Note that point of my post is it ensure genuine disabled people receive more funding, I see clamping down on fraud as an import part of this process. I am not being Osborne on this one.

    I had an electic car and my car counting started when the disabled drivers started parking in EV charge points, that’s when I started to notice that the EV parking space abusers (or accompanying passengers) where not disabled.

  • leoinlisbon

    As you admit, the figures show your claim that the services have been ‘gutted’ is nonsense. You still insist on blaming the Tories.
    There are some people – particularly online – who will lap up any and every anti-Tory diatribe. I find it tiresome.
    I write this as somebody whose experience in dealing with autism in my family predates yours by some twenty years.

  • mac tire

    Your British Army point is silly – and even if it had merit would you tell those soldiers with PTSD to get off their lazy arses?

    “In the UK they actually enforce fraud…”

    Since the north is deemed part of the UK you’ll find they enforce it here too.

    “I had this very conversation with a leading NI car retailer in the last month…”

    I remember you mentioned this before (not sure how long ago it was but you seem to talk to leading car dealers about this alot). I’m sure said car dealer was so incensed that he chases these people away, rather than take their business. He does, doesn’t he?

    “Come to Newry and see the abuse for yourself…”

    Er, I live there!

    “my statistics are based on counting cars / occupants in my own town and counting twenty / thirty cars parked in my main high street, both sides of the street all with blue badges daily and no one with disabled needs in sight.”

    Do all these people come from Newry? How do you know? Does disability have to be in sight to qualify? You’ll be asking them for medical evidence next.

    Oh, and it is well for you who can spend their days counting cars and badges.

    I have shown you official stats which state that fraud is a minuscule percentage of the welfare budget. You ignored that and use your own ‘observations’ as evidence of fraud instead.

    You’ve yet again ignored the other, more costly, cheats that exist.

  • Nicholas Whyte

    I think I made it pretty clear that all parties are to blame; the Tories just happen to have had a massive internal row on the subject this week, so it is at least topical.

    I understand your frustration, but I don’t particularly see why you want to take it out on me rather than the real culprits.

  • leoinlisbon

    I am not frustrated and do not want to take it out on you, as you phrase it.
    I am critical of what you have written.
    In your last comment, you refer to the ‘real culprits.’
    I strongly disagree with this way of thinking; that there is somebody to blame.
    The similarity between this and the criticisms you make of the Tories should be obvious.