International Day of People With Disability, 03 December 2012: Why I Refused to Claim Disability Living Allowance

On account of having an Autism Spectrum Condition, I had had been told by friends and family that I should consider applying for Disability Living Allowance and Employment Support Allowance. Instead, I had opted for Jobseekers’ Allowance whilst unemployed, a decision which could have cost me an extra £20 – 30 per week on top of the present full JSA rate 0f £71.00. Being an in-work benefit as well as an out-of-work one, DLA and ESA would have tided me over if working a week or month in hand. It would have ensured eligibility for concessionary fares and free off-peak bus travel anywhere in England (good, though I would have lost out considering the number of peak hour journeys I make).

My reasons are twofold. Firstly, from a personal perspective. Secondly, political grounds.

I had considered myself as being too much of An Able Autie to consider claiming. Though I have no problems with boarding public transport, I find extreme late running, overcrowding and Pacer units (especially those more awful than thou Merseytravel PTE ones) most overloading factors in peak hours. Therefore I always take something to do on board, usually write my own poetry, draft future entries for East of the M60, or read The Guardian or Oldham Evening Chronicle. Where would I be without the smartphone for Twittering or random Instagram pictures too? In spite of the above, I do enjoy travelling on public transport as a whole. Though not perfect, it is better than getting my hair off over finding a parking space or being stuck on Audenshaw Road (who doesn’t at this very moment in time?), and the executive functioning required to keep a modest car maintained.

My second reason is down to present company in Westminster and Whitehall. I cannot trust them to pour a pint of Jaipur properly at Stalybridge Station Buffet Bar, let alone organise a proverbial drinking session at the Thornbridge Brewery. By next April, they will replace Disability Living Allowance with Personal Independence Payments, which the Department for Work and Pensions claims ‘better reflect today’s understanding of disability’. Finely put, but, the reference to more constant assessment assumes that the claimant can be tested like a new bus. Again, the rhetoric sounds well but the devil in the detail is more sinister.

It is claimed in their Frequently Asked Questions sheet that ‘[his or her] disability expected to last 12 months or longer’. This gives the impression that people with lifelong conditions and disabilities are buses subject to a VOSA Certificate of Fitness. Whereas an Enviro400 registered this year receives its Certificate of Fitness in 2019, a PIP or ESA claimant is expected to have seven tests should he or she claim disability benefits over the same period.

It fails to take into account that anyone with an Autism Spectrum Condition of varying severity has a lifelong condition. Yes, it is true as per the DWP blurb that his or her condition may vary over time. For example, his or her ASC could be co-morbid with anxiety disorders, other communicative disorders, Schizophrenia, Dyslexia and Diabetes. The regular testing dehumanises and denigrates the whole purpose of our welfare state’s ability to look after the needy.

In a nutshell, the current system is devised to deter potential claimants. Firstly, the arcane nature and testing. Secondly, Britain’s attitudes to disabled people over the last two years.

Labour’s reforms to disability benefits came after an influential report by Lord Freud. It suggested greater private sector involvement (hence A4E, Working Links and Ingeus’ contracts and subcontracts with the Work Programme). Also influential to this was UNUM, a US health insurance company whom had also advised the Conservative MP for St. Albans and then Social Security Minister Peter Lilley. With Lilley came the 07 October 1996 introduction of Jobseekers’ Allowance, which mandated the completion of jobsearch diaries among claimants, and a cut in Contributory JSA entitlement from 12 to 6 months.

Another link was the BioPsychosocial Model which would later influence DLA and ESA assessments. By 2008, assessment for Disability Living Allowance and successors was outsourced to ATOS Origin. Assessment would be done by means of tick-box questionnaires with an ATOS assessor. Two years on, it was clear that they succeeded in reducing the number of DLA claimants.

In the next two years, this would lead to an increase in successful appeals by rejected persons, and well documented reports of people dying shortly after. Assessors lacked medical knowledge much to the ire of claimants and their doctors, but the test was given greater credence over more qualified personnel opinion. This included stories of cancer sufferers being forced into full time work, people with heart conditions shortly dying after being passed as ‘fit for work’. It was clear that the testing battery was an instrument to reduce DLA/PIP/ESA claimants by fair or foul means.

In spite of the repercussions, both parties directly and indirectly perpetuated the same ‘dole scum’ associated lies among disabled persons, despite having a fraud rate 1/30th of The Work Programme’s 3.5% ‘successful outcomes’. This led to the rise of grassroots movements against the previous and current governments’ proposals. ‘Malingerer’ and ‘layabout’ – terms often used to denigrate unemployed citizens, would be targeted at disabled persons. During their first budget, it seemed as if the Tory-led coalition government’s policies on disability came from another source besides the biopsychosocial model:

Three fictitious situation comedy characters: Lou and Andy in Little Britain, and the tactless hypnotist in Phoenix Nights known as Clinton Baptiste.

The first episode of Little Britain sees Lou and Andy at a diving pool. Whilst Lou is talking to a lifeguard, Andy leaves his wheelchair, walking to the high diving board, diving, then swimming to the steps without a care in the world.

In the third episode of Phoenix Nights, Clinton Baptiste upsets the audience much to the ire of Brian Potter. Not withstanding the fact that Brian Potter is seen in a wheelchair, he replied to the question “Can you read minds?” by saying “You Can Walk”.

So, what has the current assessment model got in common with three fictitious characters? They pander to the popular perception of disabled people in the eyes of less enlightened citizens who believe everything they read or hear in the Tory-sycophantic press. In sitcom form, we know Clinton Baptiste has the compassion of a brick, whereas Andy Pipkin places the element of doubt among some sections of vox populi that some disabled persons are shirkers.

This further explains why I’ve refused to claim a concessionary pass, let alone DLA, PIP or ESA. Sometimes saying you’re on these benefits can be used against you by less enlightened types. The increase of electronic systems for travel and – in future years – receipt of state benefits – may place greater surveillance on claimants. In future years, it could be used for monitoring job-seeking activities, or the purchase of luxury items like cinema tickets or alcohol. This allows scope for The Mother of All Divide and Conquer Fests and Postmodern Feudalism. An eWorkhouse State.

For instance:

Person A: I’ve been diagnosed with an Autism Spectrum Condition since I was a toddler, unable to speak for two years. My family suggested putting in for DLA which I did.

Person B: But you don’t look autistic to me. You are talking, you seem quite normal…

Person C: Scrounger, scrounger…

Person C (like some of our present overlords) is oblivious to the fact that disability benefits are also an in-work benefit as well as an out-of-work one. Less sympathetic people consider it as a cop-out from work – exacerbated by a previous Conservative government’s attempt to massage the unemployment figures by transferring some sections of the long term unemployed onto Sickness Benefit.

Person B is ignorant of the varying degrees of autism and possibly associates autism with Leo Kanner’s Classic Autism. As I know myself, and from seeing other people on the autism spectrum, there are varying degrees.

It is worth noting that a lot of people on autism spectrum would like to work, but the employment rate of people with ASCs is a miserly 15%. Some employers have yet to wake up to the idea that people on the autism spectrum could be model employees, and it requires a degree of education and support for employee and employer alike. Today, some of the support networks are being cut off due to funding cuts and the closure of Remploy’s factories. Thankfully, Remploy are still helping fellow auties and other disabled persons into work through different approaches (and I can testify having been a successful beneficiary myself).

Is There Anybody Out There…?

Recently I applied for a position as a public speaker, and was told that I was ‘too clever’ for the role. I had benefited from an excellent (though sadly closed special school) which enabled me to go about my day-to-day living as normal as possible. So much so that I had been £50 worse off per week by refusing to claim DLA and free off-peak bus travel (also for similar reasons to my application for Learning Difficulties Ambassador as well as the present political climate). My reason for non-claiming isn’t borne from an Ayn Randian state of self sufficiency – I believe in a properly funded and fair social welfare system where people live instead of exist.

I doubt as if I’m the only one who has decided against claiming disability benefits. In fact, I would safely say that there are a fair few of us out there. Some of them may have Asperger’s Syndrome or Semantic Pragmatic Disorder like myself, or they might have an undiagnosed Autism Spectrum Condition.

The problem is, the machinations of the system and the lack of general awareness of hidden impairments isn’t helping people like myself gain the necessary support. Its subtleties stymie the use of a ‘one size fits all’ approach, which is cheaper than the tailored approach we require.

On the day we should have been celebrating difference, our overlords have ‘celebrated’ this year’s International Day of People with Disability by forcing those less able to work into work, for free, into any job their provider sees fit to place them (expletives deleted).

Generally, we seem to be going backwards in the UK in terms of our attitudes to disability. Before long, Scope might revert to their original name and hope there’s no outcry. Chances are, there probably wont be among some people.

As for hidden impairments like mine, they will probably be hidden for longer. We must do everything in our power to make sure people with more subtle autism spectrum conditions, dyslexia, dyspraxia, etc are properly catered for.

S.V., 03 December 2012.

5 thoughts on “Hidden Impairments and (Stubbornly Refusing to Claim) DLA

  1. not only do i use Remploy branch but also routes to work which help you and even go in and train you on the job i should know this back in 1997 i tryed sunlight at Mossley for 2 days liked it but they did not have any vancinacs due to me having Learing diffcults i get lower rate DLA


    1. Hi Michael,

      I have yet to have the joy of ‘Routes to Work’ but doubt as if I will having been employed for a month now. So far, I am enjoying my current paid position just outside Oldham. Perhaps I was foolhardy enough to have refrained from applying several years ago, but the amount of advice I’ve had after leaving school (last six months excepted) was diabolical. Therefore I’ve had to do a lot of things myself and am surprised at how far I’ve come on in the last ten years.




  2. I suffer from both a mild form Epilepsy and Dysphraxia and I’ve applied for quite a number of jobs this year all of which I haven’t got, I’ve also gone through another work program which although helped me gain my confidence back in looking for a job it unfournatly hasn’t helped me to secure employment, and I’m sure the reasoning is due to the fact I put both my disabilties down on the application form which it tells me to do.

    Those people that have got to know me over the years actually know that despite enjoying riding round every week on public transport I do enjoy work and when I am working I am actually a busy worker and once shown can be left to my own devices, I just which someone would give me a chance


    1. Andrew ask you job centre to refer you to the Remploy Branch in Oldham they work on finding you the right job and i am there and the jobs they get though are there before the job centre gets them i have all ready had an interview and then did a 2 week work trail i use to work in the Remploy factory


    2. Hi Andrew,

      This sounds very much like my situation prior to last month, except for one thing: I never considered filling in the ‘Do You Have a Disability’ type box on application forms till recently. I never disclosed my ASC till 2011, and most of that came about through greater awareness gained in the last ten years. I refrained from putting ‘Semantic Pragmatic Disorder’ or ‘Autism Spectrum Disorder’ on application forms for fear of discrimination by potential employers.

      I had been on two Work Choice programmes in the last year: one was a disaster – six months unpaid work and no job at the end. I hated the uncertainty and the fact I was doing a job which should have been a paid one. My second one was much more successful, leading me to my present job.

      I would say the toughness of our present labour market, a hardening of attitudes towards neurodiverse types and ignorance among some people is stymieing most disabled persons’ chances of sustainable employment. The closure of Remploy’s factories hasn’t helped either. In spite of the rhetoric towards integrated workplaces (by means of awareness and the Disability Discrimination Act), some employers may have cold feet towards employing disabled persons. Hence the need for solid support mechanisms which are being whittled away in the midst of a possible triple dip recession!

      I wish you the very best of luck in finding a new position. As you would know yourself (and speaking from past experience), this year has been pretty tough – possibly the toughest year I’ve ever known compared with previous spells of unemployment which I’ve faced.

      Kind regards,



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