A quick reply to Sue Marsh’s important post earlier today.
People cannot exist, let along get on in life, while enduring grinding poverty. And one needs only look at levels of poverty and material deprivation among disabled people to recognise that in the UK and internationally the right to live life free of poverty is rarely realised. People are absolutely right to oppose the reforms underway because they are not doing anything to alleviate or eradicate poverty. The current programme of welfare reform is in fact making matters worse. That – in my personal view – is not a matter for debate.
What is a matter for debate is setting out a viable alternative and how to win the political and public argument for it. A few principles that I suspect – hope – we all agree on:
People with impairments and health conditions:
- Have the right to be treated as agents in their own lives, not as objects
- Have the right to realise their full potential, whatever that might be and however it might find expression, without encountering discrimination
- Have the right to an adequate standard of living and to social protection
- Should enjoy practical and financial support to realise these rights
These are rights that apply to all people with impairments or health conditions, irrespective of their impact on a person’s functioning (including illness),
So why should there be a debate about ‘sickness versus disability’ emerge? Not I don’t believe because of the analysis of the social model of disability – which does not and need not exclude an account of the impact of impairment of health conditions – or because of a focus on disabled people’s human rights. Rather it is a product of welfare to work policy and its relentless focus upon individual responsibility and obligations to work rather than rights and opportunities. It is that focus – and the need it creates to separate the ‘genuinely unable’ from the ‘malingerers’ – that necessitates a system which grades people by the ‘severity’ of their impairment or health condition. And it has been the failure of that approach to be sensitized to the effects of particular impairments and health conditions that has placed obligations upon people inappropriately.
It is also a system (and a political and social context) which leaves people with little scope but to place emphasis on the impact of their impairment or health condition – on their lack of productive potential – for it is only this that is recognised and which is rewarded. Saying this isn’t in denial of the impact of ill-health, nor is it designed to obscure it or in any way to criticise individuals. Rather it is to highlight how it is in complete contrast with the human rights principles I outlined above. In our modern benefits system exhibiting agency or potential places people’s right to an adequate standard of living at risk through punitive sanctions regimes. At the same time genuine opportunities and effective support are not forthcoming.
We may want to guard people against unfair and unreasonable expectations, but at what cost?
The conflict with the aims of disability rights emerges from the fact that continuing to define disability as a deficit for the purposes of benefit eligibility inevitably undermines the case for disability not to be legitimate grounds for discrimination and for people to enjoy control over their own lives. This in turn undermines the case for investment in the supports which enable people to take control and participate. Instead the compensatory, safety net welfare state which demands people enter a state of suspended animation to maintain their entitlement is sustained. The focus of public policy continues to be on redrawing the boundaries of entitlement under the pretence of identifying those who can and cannot work. Trying to distinguish sickness in this context from disability is just more boundary changing.
Imagine instead an enabling State that focused on people’s rights and their potential and invested in it, no matter what that potential amounted to? Imagine an enabling State that ensured everyone had a decent standard of living and which removed barriers and secured the support people needed to get on in life. That’s always been the dream of disability rights activists when talking about independent living – that public resources were used not to simply sustain them, but to invest in them.
But we also need to imagine and make real an agenda that recognises and seeks to respond to the diversity of experience, understanding that removing barriers for some doesn’t remove barriers for all. That of course includes people experience the effects of ill-health, but it also includes others who have often been left behind such as people with learning disabilities or mental health problems for example. In seeking to avoid discussion of impairment or ill-health, some disability activists have helped foster huge inequalities between different disabled people – in some cases greater than those between disabled people as a whole and non disabled people.
Isn’t fixing this something everyone can rally around? Because if it isn’t then I fear that welfare activism and disability rights activism are going to continue to be in a conflict that neither ultimately desire or from which no-one will ultimately benefit.