“Experts by experience”?

A group of ‘experts by experience’ have developed a series of proposals for the reform of social security.  I’ve just been listening to their presentations.  They claim that

“Commissioners as Experts by Experience cut through organisational and interest group silos and fragmented debates about poverty, instead providing a holistic perspective, with an ability to focus on fundamental core issues and anchored in lived experience of the system.”

I don’t think that’s borne out in practice.  The Commisson’s principles, asking for dignity, respect and adequate benefits, are unexceptionable.  The point which set the alarm bells ringing for me, however, was the proposal to replace PIP with a different benefit to meet the costs of disability. If we look now at the rules for PIP, or at the previous rules for DLA, we should be able to see that the assessment is not an assessment of costs; that the levels of benefit are not related to the costs, but to the severity of the disability; and that another service which does consider the costs, as part of the social care system, has a different reach and scope to these  benefits.  The idea that PIP was meant to meet extra costs largely began with the introduction of DLA, 1993-94.   But the benefits it was based on – Attendance Allowance and Mobility Allowance  – weren’t there to meet extra costs.  Attendance Allowance, despite the name, was always a benefit for severe disability rather than attendance as such, and it was explicitly introduced (in 1970) to supplement the depressed incomes that people with disabilities had to suffer over the long term.   That’s an important principle, that we shouldn’t lose sight of.

When people claim to be ‘experts by experience’, it seems to chime with a lot of the ideas that have informed participation and diversity in the development of policy.  The central claim, which I have no problem no problem with, is that people with disabilities have expertise relating to their own disability.  That squares with one of the central propositions that has guided social care policy in recent years: Nothing about me, without me.  There’s an influential literature about user participation in policy-making.  Over the years, I’ve done a certain amount of work, as a researcher and policy analyst, based on the principle of empowerment.   A lot of qualitative research consists of listening and recording what people say, and I’ve mentored groups of people in poverty undertaking participative research projects, so that they can do as much.  That’s less a matter of expertise than of attitude: valuing what people say, treating it seriously, conveying people’s feelings and experiences in their own words.   

The claim to be ‘experts by experience’, however, goes some way further than that.  The group  which has formed these proposals had drawn on a combination of people with disabilities and community activists.  The idea that they are “expert” appears to stake a claim that people with  personal experience  have an expert’s general understanding of people with different personal experiences from theirs.  And there, with regret, I must beg to differ. There are three evident problems.  The first is that a group of this kind can’t conceivably represent the range and diversity of experiences out there.  Most benefits go to pensioners: this is a group which is largely of working age. Most unemployment is transitional. Most people with disabilities don’t identify themselves as disabled: they’re ‘managing’, or ‘not really disabled’, or disabled ‘sometimes’. The claim to ‘expertise’ dispenses with the need to cover the range of experience.

Second, activists are different.  This is well-known in political research, where the views of activists are always a bit more pronounced than the mainstream – that’s why they’re activists.  Activists in social security are more likely to be long-term recipients, from which it follows that they’re also in situations that change less rapidly than many others, in more unpredictable and precarious situations.

Third, the kind of ‘expertise’ that people develop is typically formed in relation to current policies and politics.  Claimants’ understanding of the arcane systems they’re being asked to comply with are conditioned by the current shape of benefits.  Very few people will know or remember that there were once earnings-related Unemployment Benefits, or higher rates of Invalidity Benefit for people who suffered disability at an earlier age, or a One Parent Benefit, or a Non Contributory Invalidity Pension; this kind of option disappears from view.

We need, of course, to take the voices of claimants seriously.  They have a right to be heard, and information we can’t obtain without engaging them.  Calling them “experts by experience”, however, is not the way either to get the greatest level of participation, or to get to the meat of a policy.

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