Over the past 24 hours I’ve had some interesting, if not rather heated, discussions on Twitter regarding specific question of ‘sickness’ and ‘disability’ and the degree to which each gives rise to a need for different policy responses and/or demands a different ‘narrative’. I thought I’d try to articulate my views without the strictures of 140 characters and invite people to comment and engage in a discussion via this blog or elsewhere if people so wish. I’d also like to start by thanking people for taking the time to debate the issue with me through which I have both learnt a great deal and been able to develop my position and to apologise for what in retrospect was an unfair and overly hasty dismissal of the document from Pats Petition (more of which below). As a member of Labour’s Poverty and Disability Taskforce I also wanted to write this to give people assurance about where I am coming from. So here goes:
1. Disabled people and people with long term health conditions can face an income penalty because of labour market disadvantage or because the effects of their impairment or condition make sustainable employment temporarily, periodically or permanently unattainable, or because of a combination of both. This – along with other factors such as prior socioeconomic disadvantage, discrimination associated with age, gender, ethnicity, or where somebody lives can lead to poverty and because that poverty may be endured over a long period, to material deprivation.
2. Disabled people and people with long term health conditions can face a cost of living penalty because their impairment or health condition gives rise to costs which others do not face. This places them further at risk of poverty and this poverty is not recognised in official measures. This costs of living penalty is a barrier to participation, including in employment.
3. The job of public policy is to address both the income penalty and the costs of living penalty. It needs to do so through optimising opportunities for people to secure sustainable paid employment, through financial transfers via the tax and benefit system to address the income penalty, through measures to make people more financially resilient and through action to both minimise and contribute towards extra costs.
4. People who cannot raise an adequate income via sustainable employment need an adequate income to live on – one which ensures their well-being, prevents material deprivation and promotes financial resilience. They should also benefit from policy to address extra costs arising from their impairment or health condition.
5. Some people have health conditions which give rise to fatigue, pain, vomiting, confusion, breathing difficulties, dizziness and distress for example. Together these – what we might call ‘states of being’ – are described by some as ‘sickness’. It has been suggested that people who experience such ‘states of being’ should be described as ‘sick people’ in order to differentiate them from ‘disabled people.’ The rationale for this separation is to draw attention to their situation – which it is argued is under or mis-recognised by existing policy and practice – to ensure that they are not the object of unreasonable expectations which it is argued the modern disability rights agenda can give rise to and in particular to ensure that they are not subject to conditionality and that they receive additional payments via Employment and Support Allowance.
6. We must in my view ensure that policy recognises the ‘states of being’ referred to as sickness and their impact. We must ensure that people who experience them are not the object of unreasonable expectations which threaten or undermine their health and well-being and that they are provided with an adequate income and whatever other support they require to achieve well-being and to participate.
7. But I don’t believe we should or even can distinguish between ‘sick people’ and ‘disabled people’ as some suggest. Many people would fall into both camps as Jenny Morris explains here. People who become sick also experience discrimination and socially constructed barriers whether in the labour market or in accessing goods and services. The fact that they may not actively be pursuing employment at a particular moment does not mean the question of employer discrimination or labour market disadvantage is rendered irrelevant. Many people’s health conditions mean they can and would like to work sometimes and not others. We should be seeking to open up opportunities for everyone who wants to work and we need to better understand and address the barriers people who experience sickness may face. People who are sick should not face discrimination and should enjoy the same rights accorded to other disabled people. Saying that and pursuing it is quite different from obliging everyone to work.
8. On reflection I was far too hasty to dismiss the document from Pats Petition for which I have apologised above. They also want to overcome the avoidable tension between promoting opportunities on the one hand and subjecting people to unreasonable expectations on the other. A more sophisticated system will underwrite risk-taking and all forms of contribution, not penalise people for trying out work or for working when they can. Belonging to the ‘support group’ should not demand that people enter a state of ‘suspended animation’, just as belonging to the WRAG group should not render someone the object of pointless, unproductive yet extremely damaging sanctions regimes or failing ’employment support’. And we must as they say look beyond the ‘push’ factors and address the ‘pull’ factors in the labour market itself.
9. Just as we need to avoid generating unreasonable expectations though, we also must avoid perpetuating negative stereotypes. This is why – even though there was much to commend in the document I recoiled at ‘Jobs are acquired through open competition: it is like asking disabled athletes to compete in the mainstream Olympics’ When employment support providers are ‘parking’ disabled people and going for the ‘low hanging fruit’ instead and when employer discrimination is often rooted in low expectations, statements like this – designed to protect people – also serve to feed prejudices and provide excuses and justification for disabled people’s exclusion from the labour market. While we must be realistic and avoid putting people in harms way, we also at all times must promote – to use the words of the UN Disability Convention – the ‘capabilities and contributions of persons with disabilities.’ This is a major tension that we all should have an interest in trying to overcome.
10. I think we should avoid promoting ‘equality for those that can; social security for those who cannot’ and I believe that we can if we begin articulating a fresh inclusive agenda under the banner ‘dignity and opportunities for all’. Everyone requires an adequate income which accords them dignity and well-being, and everyone wants to be their best, no matter what being their best means. We all want there to be public resources which invest in people. Let’s not allow this government’s assault on the welfare state lead some campaigners to an assault on disability equality.