It’s time to unite, not to advocate more boundary changes

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.


5 thoughts on “It’s time to unite, not to advocate more boundary changes

  1. Why should there be a debate about “sickness vs disability”? There are several reasons but one is quite simply because many “disabled people” tell “sick people” that we make them look bad and should shut up. Ironically this comes as we try to find ways forward which will enable people to do what they want to do.
    Specifically, when it comes to the workplace, we mustn’t talk about working from home, flexiworking, working part time, job sharing or rearranging job timetables to suit our sometimes rather difficult illnesses. This is because “disabled people” don’t need that sort of thing in general and they don’t want employers thinking that they are “unreliable” employees like those “sick people” over there.
    Yet those things are just as necessary as a ramp to a wheelchair user. They are our access, our support. They are things everyone should be rallying round, not being shouted at or insulted for raising.
    Instead we see disabled people shouting out that they are brilliant hard working employees who work longer hours and take less sick leave than non disabled people. Woe betide anyone who says that actually, they would like to see more part time jobs to enable people who have to take a lot of time off sick, or who can’t manage a full day, to still go to work.

    I am someone who is very sick and also has more “traditional” impairments. In the past I have had to fight both for basic access (ramps etc) and for the more unusual requirements (working part time, working from home as required, etc). Both were as essential as each other for me to work.
    Yet within the disability “community” I have been applauded for the former but on occasion pilloried for the latter (apparently it gave a bad impression of wheelchair users).

    It should not be this way. We should be fighting for each other’s support requirements, whatever the impairment. Until this is recognised, until one group stops wanting to distance itself from the other on the basis of the type of support it needs, then there will be friction.

  2. I think it is important to understand what I believe Sue’s blog was a response to my Huff blog last week;

    The blog and my concern remain the portrayal of sick and disabled people. I am aware I have been vocal in the matter and I have been highly concerned at the welfarist bias that appears to stem for vocal sick people and the media. However, as someone who is sick and disabled is so defined, and in line with the social model, I totally support Spoonydoc in developing non-tradiational working methods and removing barriers in ways not previously considered.

    I am sorry if that was not clear and for me, as I say time after time, I am not interested in who has a job or who is on benefit, but that we recognise everyone has abilities and capacilities to work in the wider sense on this meaning. This is ideology and not reflective of the realities of the real world and no disabled people has the right to question someone circumstances, but it is right to question how specific campaign messages impact the wider debate.

    The myth of disabled people being super employees who never get sick is wrong and belongs in the 1990s. I am reaching a conclusion that the whole concept of an tradiational impairment free from additional issues is a myth in itself, it is a lie told to disabled children but we all seem to experience impairments defined as sickness.

    I think we should challenge the divide and acknowledge impairment is impairment however unstable it is. We also need to accept this is still for the most part a working age ‘physical impairment’ issue with some connection to mental health, but once again it ignores people with learning difficulties and older people. In including mental heath, we must further acknowledge there is many shades of grey and that humanity and impairment are regarded as few less seperate than ever before.

    • Yet welfare/financial support still comes into it whether or not we like it.
      As impairment becomes more and more unstable and unreliable, part time work may become either so erratic or so few feasible hours as to become financially totally unviable. This was finally the case for me for example after 17 years of a deteriorating condition.
      At this point the support required moves from purely adaptations and support in the workplace to a financial one. This may or may not be a permanent situation dependent on the progress of the impairment, what type of jobs are available and what further support can be put in place.
      Losing your career is already a very difficult stage of your life, for which there is extremely little support. In fact instead, there is condemnation. Without that financial support everything else will fall apart and you really will become totally isolated, not to mention in danger of debt and poverty unless somehow help from elsewhere is forthcoming.

      • I do financial support as a part of social model thinking in line with 12 needs. Supporting people’s abilities must never be an excuse to remove financial support. But the money should be shaped to enable and empower people, working on where people are on their journeys, which is norm and not a criticism. The media is not helping with the steady stream of outrage when disabled people are found ‘fit’ on a portray level.

        If Labour still had an independent living strategy, as well as a welfare strategy, maybe those in the 80% who understand whats going on may not need to just panicing and shouting ‘we are still here and my issues are not a done deal’

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