A rather worrying consensus seems to be forming between some prominent social model of disability advocates and social security campaigners. In a recent article, the godfather/midwife of the social model of disability, Mike Oliver complained that disability had become re-conflated with ‘illness’ and that the two must be separated. At the same time, social security campaigners have begun to call for a distinction to be drawn between ‘sickness’ and disability, in order to create space for distinctive and separate public policy response to sickness.
Oliver’s beef with talking about ‘illness’ is that ‘illness’ suggests the need for treatment, not strategies for social inclusion and equality and that this trend threatens the influence of the social model of disability on public policy. He reasserts Vic Finkelstein’s view that there should be three separate government departments ‘one for health dealing with illness; one for welfare dealing with the limitations of our impairments; and an environment department dealing with the removal of disabling barriers.’ In saying so Oliver appears to reveal that his real goal is not only separating disability from illness, but separating illness from impairment.
Some social security campaigners’ beef about ‘disability’ is that it suggests strategies for social inclusion and equality which place unfair expectations on people who are sick. They wish to safeguard people who are ‘sick’ from being unreasonably obliged to assume the social and economic roles that they believe disability rights campaigners pursue as a matter of equality. They consider these to form part of the government’s case to impose greater levels of conditionality on those receive out of work disability benefits and to reduce benefit payments. Their strategy is to emphasise the impact of sickness itself and draw attention to instances in which they believe people with sickness or chronic conditions have been unfairly judged fit to work.
The tension between the framing of social model advocacy and social security advocacy was illustrated very powerfully to me in a recent indignant headline in a Scottish newspaper: ‘Double Amputee Fit to Work says Atos’. The headline clearly invited readers to be shocked that somebody with such an impairment could be expected of all things to work. It appeared within a year of the world watching a double amputee compete in the Olympic games. While Olympians are unfair benchmarks for pretty much everyone, it was hoped that the Paralympic games would showcase the ‘capabilities and contributions’ of disabled people and help influence attitudes. Furthermore, one does not have to be an ardent disability rights activist to recognise the unfairness involved had the headline read ‘Double Amputee turned down for office job.’
One side is saying disabled people should have equal opportunities to work; the other is suggesting that some disabled people lack the intrinsic capacities to do so and should be protected from having to work. And as we can see from the example above, we are not talking about entirely separate groups or circumstances.
The definition of disability as a ‘protected characteristic’ in the Equality Act 2010, developed and refined via the Disability Discrimination Acts of 1995 and 2005 is extremely broad and includes any physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on a persons’ ability to perform normal daily activities. It can be said fairly confidently that pretty much everyone who was on IB and who has transferred to ESA or who receives DLA/PIP is protected from discrimination by the Act, including people with long term health conditions, progressive health conditions such as HIV, fluctuating conditions such as mental health problems or Multiple Sclerosis and illness such as cancer. Many more people – up to 12 million in total by the government’s own estimate – are protected by the Act at any one time in respect of disability discrimination (in addition to protection from discrimination on other grounds such as age, gender, race or sexual orientation). The Act makes discrimination against people meeting its definition of disability unlawful in pretty much all areas of life – employment, education, access to goods and services, public functions, transport and includes the failure to make reasonable adjustments within its definition of discrimination. Further, the Act requires all public bodies, including central government, to have due regard to eliminating discrimination, promoting equality of opportunity and fostering good relations.
Research by the DWP in the early 2000’s found that of those protected by the Disability Discrimination Act, 52% did not self-identify as disabled. At the Disability Rights Commission our response was not to count those people out but to find out how they did self-define and how we could communicate effectively with them regarding their rights. The audience research found that people recognised relationships between their conditions and being treated unfairly, but that their identities would never likely be forged around being a ‘disabled person.’ Our research also found that many small employers already employed people with rights under the DDA, but that they did not recognise them as disabled people. This led the DRC to refer in all of its communications to ‘disabled people and people with long term health conditions’, as well as referencing specific impairments and conditions such as diabetes (as in this film ‘the appointment’), HIV/AIDS or cancer. One of the last major initiatives of the DRC was to highlight the employment discrimination being faced by women with breast cancer.
Kaliya Franklin helpfully explained to me how significant numbers of new ESA claimants may be sick, but won’t be defined as disabled for the purposes of the Equality Act (because their illness is not and does not become long-term) or in receipt of DLA/PIP. So here we do have an identifiable group that is ‘sick’ rather than ‘disabled’ for who particular policy responses need to be put in place, either via the welfare state, changing rules regarding statutory sick pay or through private insurance.
But with the exception of this group our Equality law and the assumptions and aspirations that it embodies extend the principle of non-discrimination and equality of opportunity to the vast majority of people with either impairments or long-term health conditions. Equally, we regard the United Nations Convention on the Rights of Persons with Disabilities as relevant to the same broad constituency of experience and when implementing rights to independent living, to an adequate standard of living and social protection, to health or to work for example we must think about this breadth of experience. The Convention itself exhorts us to do so when it requires States in preamble to recognise ‘the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support.’
Oliver’s motivation to resist the conflation of disability and illness is based upon a sound concern. The medical profession is neither typically oriented or inclined towards looking beyond treating conditions and if it dominated disabled people’s lives as it did in the past would seriously erode people’s freedoms and opportunities.
Yet at the same time I believe his answer is misconceived. First many disabled people have on-going physical or mental health conditions and treatment and management is as instrumental to their being able to live independently as barrier removal or access to practical or financial support. In such situations, illness cannot be separated from impairment or disability – illness is part of impairment. Second, parts of the health service have shown themselves capable of respecting rights and promoting autonomy and participation. The piloting of personal budgets for people with long-term health conditions is a good example. Surely in keeping with the ambition of the social model of disability we should be seeking to change the way the health service functions and behaves so that it is consistent with the protection and promotion of disabled people’s human rights?
When it comes to social security campaigners, their motivation is also understandable. When opportunities are so theoretical, and already-meagre livelihoods are in peril, it is entirely rational to resist reforms which further erode financial security. Some impairments or health conditions have such a profound effect on ‘a persons ability to perform normal day to day activities’ that it may temporarily or permanently be unreasonable to expect a person to perform those activities, including full time or any paid employment. The degree of unreasonableness is exacerbated by the fact that such ‘expectations’ may lead to a reduction in benefits and the person being the object of conditionality and sanctions (with little evidence of improved job prospects as a consequence). The central focus of most welfare reforms over the past decade and a half has been to continually redefine the group that should not be obliged to work while increasing levels of conditionality and reducing rates of benefit payments for the rest. The process by which these re-definitions are implemented – presently the so-called ‘Work Capability Assessment’ – takes account only of the persons functional capacity to perform work activities, not of their actual opportunities to do so. In this context disabled people are required under threat of sanction to make moves towards work without reference to the labour market disadvantage they are likely to face. The very design of this system encourages people to avoid exhibiting traits such as individual agency and potential for to do so places entitlement at risk. As I have mentioned in other posts, this problem is not confined to the UK. A recent report of the US National Disability Council noted how “public policy remains entrenched in the1960s-era all-or-nothing approach to serving people with disabilities, in which a person must demonstrate inability to be productive to be deemed eligible for critically important supports.”
Hence it is arguable that as a consequence social security campaigners appear to feel to have little option but to assert that some conditions de facto prevent people from working in order to protect their benefit income. This is why under a previous regime people registered blind were automatically determined to be unfit for work – something which sounds absurd today.
But just as Oliver’s answer is one of avoidance rather than challenge, so in my view is that of social security campaigners. As a consequence, in order to protect people from unreasonable obligations, campaigners are perpetuating negative stereotypes regarding the capabilities and contributions of people with long term health conditions, including suggesting – like Oliver – that to be ‘sick’ is something else entirely. Those stereotypes become headlines like the one above which are indignantly banded around Twitter. Parts of the left hoover up such stories to deploy as further evidence of the heartlessness of the Coalition Government. The whole vision of disabled people as equal citizens plays no part in this debate – disabled people are reduced again to objects of charity or welfare, however much disabled people themselves are involved in these campaigns. When Scope produced their ‘one year on from the Paralympics things are awful’ poll this morning, the finger of blame pointed at the rhetoric of the government. Yet I recall even during the Paralympics some campaigners and charities crying foul about the messages it was generating about disabled people’s potential because it threatened the narrative being used at the time to challenge welfare reform. This suggests that the most valued attitudes are not positive expectations or respect for equal rights, but benevolence and charity. And yet DPAC start their week of action employing the old disability rights slogan ‘piss on pity’?
Creating a false dichotomy between illness/sickness on the one hand and disability on the other, whether to protect the social model or social security is in no-one’s interest. It ignores the reality of many people’s lives, will lead to division and weaken the case both for equal participation and for an adequate standard of living for disabled people and people with long term health conditions.
The UNCRPD provides for the first time a framework to allow us to create a unified approach and unifying message. We should use it. People must resist the temptation to begin promoting ‘equal rights for those who can; social (in)security for those who cannot.’