Disability, chronic sickness and work – a reality check

With the London Paralympics dominating the news and the media finally waking up to the horror of the Work Capability Assessment (in the recent Dispatches and Panorama documentaries), the topic of disability has been discussed more this summer than at any time in the recent past. Much of the discussion has demonstrated the degree of misunderstanding and disagreement that exists between the media, the Government, the Paralympic organisers, private companies, charities and disabled people themselves. In fact, the general public could be forgiven for being completely confused by mixed messages, lack of clarity and multiple disagreements; I know I would be if I were not a reasonably well-informed disabled person. Even identifying and pulling out the different strands and views from the information ‘noise’ is difficult, hence this attempt to tease out some of the messages and suggest why many are profoundly unhelpful to disabled people in the UK today.

Broadly, there are several distinct groups putting their own spin on the conversation for their own purposes: the Government, whose approach is governed by the financial and ideological aims of their welfare policies; the Paralympic organisers, rightly focused on what elite disabled athletes can achieve; sections of the media with an axe to grind regarding benefit fraud; other sections of the media wanting to expose the injustices faced by disabled people under both this and the previous Government’s policies; charities whose approach is based on the social model of disability and the principles developed by the disability movement; charities who are desperate to help disabled and sick people worst affected by our welfare and social care systems; and disabled people themselves, who are suffering from the myths and untruths behind much of the debate. Some of these approaches are more helpful than others, but the multiplicity of messages  serves to ensure that the needs of disabled and sick people are sidelined and misunderstood.

Behind many of the more unhelpful views are some basic misunderstandings of the nature of disability and chronic sickness in 21^st century western societies. If we can address these misunderstandings, we can perhaps work towards promoting attitudes and policies which better support and enable disabled people.

One of the most important issues to be clarified is the difference between disability (or, to use a social model definition, ‘impairment’) that is the result of chronic sickness, and disability (impairment) that is not. A person whose impairment is due to a chronic condition such as severe arthritis, Parkinson’s disease or lung disease is chronically sick. But a person whose impairment is due, for example, to amputation or a spinal cord injury is usually not sick. Whilst in reality people don’t fall neatly into categories, this is nevertheless a crucial distinction; the needs of disabled people who are not chronically sick are, in general, very different from the needs of those who are. It is especially important to recognise that the needs and abilities of many disabled people reflect the fact that they are chronically sick.

The other issue that needs to be clarified is the social model of disability, which was developed by disabled people themselves and proposes that the barriers to disabled people’s wellbeing and participation are mainly external – that disabled people are not primarily disadvantaged by their impairments but by the failure of society to accommodate their needs. Recent history has shown that there is a great deal of merit in this approach; an accessible built environment, inclusive policies and a more accepting society have enabled disabled people to achieve much more in the last 30 years than before. But the social model is a useful model, nothing more. Used correctly it can be, and has been, very enabling, but it has its limitations. It can be problematic to apply the social model to the experience of disabled people who are chronically sick; there are severe limitations to the extent to which the removal of barriers can ‘level the playing field’ for people who experience chronic pain, fatigue, diarrhoea, vomiting and other symptoms of illness. As someone who is disabled by a chronic illness, but whose past experience was more akin to that of someone disabled but not chronically sick, I believe in the social model, but I would argue it’s really important to understand its limitations and the ways in which it can even be used against us by policymakers. 

Current Government rhetoric and policy both use and abuse the social model. Take Personal Independence Payment, which is set to replace Disability Living Allowance from 2013. The proposed descriptors for the mobility component (available at http://www.dwp.gov.uk/consultations/2012/pip.shtml) make totally unrealistic assumptions about the extent to which application of the social model of disability has increased the accessibility of transport provision and the built environment. The mobility descriptors assume that accessible public transport is a flat, 50-metre distance from the home of every person with a mobility impairment, whilst the reality is that, particularly outside London and other major cities, public transport is not uniformly accessible and is not easily reached by anyone, disabled or not. In addition, the failure of the proposed daily living descriptors to recognise the cost of expensive items such as specialist mattresses, beds and chairs, to help manage pain and other symptoms, demonstrates the devastating limits of a benefit based solely on a narrow and inadequate social model approach.

In the main, it is arguable that the Government’s welfare policies appear to be designed for people who are disabled but are not chronically sick. Whilst the old Incapacity Benefit was designed for people who were sick, its successor, Employment and Support Allowance, with its emphasis on supporting people to do some work, makes completely unrealistic assumptions about the employability, in real-life jobs, of someone who is chronically sick. I have yet to hear of an employer who is unfazed by the prospect of employing someone who never knows whether they will be well enough to work on any given day, is in so much pain that they are unable to concentrate due to the effects of strong painkillers, who needs to lie down for most of the day or who experiences sudden incontinence due to bowel disease or sudden unconsciousness due to uncontrolled epilepsy or narcolepsy. For a realistic example of this kind of difficulty, see Sue Marsh’s account of her attempts to undertake paid employment: http://diaryofabenefitscrounger.blogspot.co.uk/2011/04/my-working-life.html

The flawed reasoning behind Employment and Support Allowance makes the assumption that there are very few claimants unable to work due to chronic sickness; of the entire claimant count, only 12-13% are expected to be too severely disabled or sick ever to be able to work (and therefore put into the Support Group to be given long term support). The reality is that when very sick people are assessed as fit for work, as all the evidence shows they are, JobCentre Plus staff are at a loss to identify any work, or preparation for work, they could do - or any employer willing to take them on. Hounding someone who’s chronically sick towards a non-existent job is a waste of public money and puts unacceptable pressure on a person whose condition may well be exacerbated by stress. This topic is brilliantly explored by Kaliya Franklin, writing for The Independent’s blog section on 31 July: Benefits and targets: Sickness and disability are not the same. 

I would suggest a much better way of approaching the possibility of work for those disabled people who are chronically sick is to look much more closely at the nature of work itself, to see whether it is possible to develop work opportunities in a way which can accommodate people who, with the best will in the world, will never be able to ‘go to work’ in the traditional sense. Some politicians have argued that if disabled and chronically sick people can use the internet to campaign on welfare issues, they can surely work. Theoretically, this is a valid point, but only if work were available that did not require people to leave their homes and did not involve deadlines, which are impossible to meet when you have no way of knowing when you will be well enough to work and when you won’t be, and for how long. 

Those who are chronically sick and have a reasonable standard of education could do extremely valuable work, not least in helping the Government and business to identify workable policies that really do help disabled people rather than push them into poverty and despair. But the signs that the Government is willing to take this on board are discouraging; in its consultation on the future of the Disabled Persons Transport Advisory Committee, the Government makes clear that one of its main objections to the current arrangement is that it costs too much for disabled people to be paid for their time and expertise. This is a profoundly unhelpful message from a Government that purports to want disabled people to use their abilities to earn rather than live on benefits. Alternatively, if they cannot find suitable paid work, many disabled and chronically sick people are keen to do voluntary work if their health does not preclude it. However, this is no reason to bully them into paid work they cannot do or to deprive them of sufficient benefit income to live with a basic level of dignity and independence.

So yes, we can use the social model, but let’s not be under any illusions about the nature of the changes needed to enable those who are disabled and chronically sick to participate fully, including in paid work if that’s realistic. Most disabled and chronically sick people want to work, but because they’re sick, they can’t ‘go to work’ in the traditional sense. It’s time for the Government to listen, really listen, if they’re serious about supporting and enabling all those who are disabled and chronically sick to participate as fully as they can in paid work or, alternatively, in volunteering or caring for their family. The Paralympics do indeed show how extremely talented disabled people can participate fully, although I’d hazard a guess that most Paralympians are disabled but not chronically sick. Even so, Paralympians have achieved what they have with the help of disability living allowance and other state support. If help from the state is good enough for them, it’s good enough for us ‘normal’ disabled people, whether our impairments are due to chronic sickness or not.

Jane Young