Author: Catherine Hale
Catherine Hale spoke at an online event hosted by Church Action on Poverty on 3rd November 2020. Here, Catherine shares the transcript of her talk and explains the outcomes of the recent Commission on Social Security.
I lead the Chronic Illness Inclusion Project (CIIP). The CIIP is a voice for disabled people with energy limiting chronic illness and chronic pain, especially people with complex and poorly understood conditions and often invisible conditions. Conditions like ME, which I’ve had for over 30 years, and others like it.
One in three disabled people experiences problems of fatigue and stamina from many different health conditions. We’ve been particularly targeted by welfare reforms, along with people with mental health conditions. Because with invisible illness, it’s easier to claim we’re faking our disabilities and cheating the system.
My work on the welfare benefit system goes further back to my own personal experience of benefits. My experience led me to volunteer as a policy researcher with Mind, as a way of trying to address the injustices I saw and felt around me.
Back in 2013 I wanted to find out the impact of the new policy of extending conditionality and sanctions to disabled people, a feature of the so-called welfare reforms. It was a frightening time for myself and my friends, moving from the relatively security of Incapacity Benefit (IB) to Employment and Support Allowance (ESA) with its fiendish Work Capability Assessment (WCA) and its work related activity group (WRAG). I used to think the WRAG was the definition of purgatory – you are found not fit for work and yet you could be compelled to do anything that DWP contractors demanded on threat of having benefits you needed to live on stopped almost completely.
The transfer from IB to ESA was supposed to be a good thing that would get more disabled people into work. But my survey of over 500 people in the WRAG suggested that instead of opening up support and opportunity, the punitive environment of compulsion and punishment was leaving people demoralised and dehumanised. They came out more anxious and depressed, and further away from engaging with work. I experienced the WRAG myself, and as a disabled single parent I had my benefits sanctioned for being too unwell to attend jobseeking and motivational courses. As Dr David Webster, points out, the sanctions system is a secret penal system, running alongside our criminal justice system, in which claimants have far fewer rights and redresses than suspected criminals.
These policies happened because of an ideology. Our treatment as suspected criminals was justified by a narrative that linked disability with social deviance. My own experience left me feeling worthless, outcast, and ashamed - literally like a second class citizen. It was at the height of an era of harsh public opinion towards claimants, and of moral panic about people sponging on the system and faking disability.
I’m pleased to say public opinion has changed.
In 2020, for the first time in 20 years a majority of people think benefits are too low and system too harsh, according to British Social Attitudes survey. There is a widespread consensus that benefit system is broken. There are organisations and think tanks dedicating work to re-envisioning a social security system fit for the world we live in, with precarious work, and uncertain times ahead.
One such endeavour is the Commission on Social Security, on which I’m a Commissioner. The commission is unique because it’s led by people with lived experience of the benefit system. We believe the current system has failed because it was designed by people who have no understanding of our lives. We have a set of proposals that we’re consulting on. They involve a Guaranteed Minimum Income (GMI) set by the Joseph Rowntree Foundation, and just as importantly, a new ethos of dignity and respect towards people needing support. There is a lot of common ground between the Commission’s proposals and those of Compass, the Centre for Welfare Reform and New Economics Foundation, especially on the overturning of stigma towards claimants.
But one thing that’s missing from most of these visions, is what do we do instead of the Work Capability Assessment? Disabled people face extra costs and need higher rates of benefits. That’s what Personal Independence Payment (PIP) and Employment Support Allowance (ESA) premiums are there for. Whatever new system is in place, whether UBI or the Commission’s proposals, there remains the need for a qualifying mechanism to access these premiums, some form of assessment.
The exciting work I’m doing with the CIIP, with Stef Benstead and in a collaboration with Leeds University, involves reimagining what a disability assessment would look like that captures the actual experience of energy limiting chronic illness and how our health conditions interfere with work and social participation. Because incapacity for work is not about picking up pound coins and setting alarm clocks, and other spurious questions in the WCA, but rather about how our overall mental and physical energy is drastically impacted by chronic and multisystemic diseases and how the modern world of work is not built to accommodate our much slower, fluctuating and unpredictable pace of activity.
When thinking about a new social security settlement, it’s so important that the WCA, as well as PIP assessments are completely reconfigured. Because what policy makers don’t understand is that stigma towards disabled people and the narrative of skivers and cheats wasn’t simply invented by politicians, or by the media. It is hard wired into the assessments themselves.
These assessments were founded on principles: theories, if you like, about health and disability. They were written by people from the worlds of medical insurance and DWP. They wrote tracts about disabled people, about our character and our morality, that had a veneer of science but were not based on any hard evidence or first-hand knowledge of our lives. Books like The Scientific and Conceptual Basis of Incapacity Benefits. They attended conferences with titles like Malingering and Illness Deception. These writings are not widely available to the public, but they were hugely influential in welfare reforms. They claimed that most people who claim to be incapacitated are not genuinely incapacitated but are either imagining it, or are wilful deceitful. As a consequence, disability assessments like WCA and PIP were designed on the basis that our accounts of health and illness are not to be trusted.
It’s not the first time that pseudo-science has been produced in the service of harmful social policies, and that pseudo-science has widely influenced public opinion and shaped prejudice. Think of eugenicist ideas about inferior races, for example. So, while we should take hope in these dark times from changing public attitudes and new policy proposals around welfare, there is still a long way to go to end the second-class citizenship of disabled people.
We need to examine our prejudices, conscious and unconscious, towards disabled people. How many people in your congregations wrongly think disability benefits are too easy to claim, that disabled people should try harder or need to be kept under surveillance to make sure they’re not cheating and faking? These attitudes are just as harmful and divisive as other forms of prejudice and divisions and I hope all of us will take up the challenge of tackling them.
I will end with a call to action for the here and now.
You are here because you want to act, as well as pray, for a better, fairer world. There is a gross injustice towards disabled people that requires urgent action as parliament debates future spending plans, including Universal Credit. Disabled people need you to stand up for us.
When Sunak raised Universal Credit by £20 a week in response to the pandemic, he left the long-term sick and disabled behind. Those of us on so-called legacy benefits, like ESA didn’t get the uplift out of poverty. There is no clearer demonstration than this of how we are treated as second class citizens. There is no valid reason for leaving disabled people behind. It can only be because our government thinks they can get away with it because not enough people know or care.
We have seen how moral outrage, channelled by the good work of celebrities like Marcus Rashford, has sometimes made the government back down from cruel policies, as with the example of vouchers to tackle school holiday hunger.
Disabled people don’t have a Marcus Rashford to speak up for us. So, we need every one of you to be our Marcus Rashford. We need MPs’ mailboxes to be full to bursting with constituents pointing out the outrageous injustice of excluding disabled people and others on legacy benefits behind.
Please visit the Zaccheaus 2000 Trust website and take part in the Z2K call to action to increase legacy benefits at:
The publisher is the Centre for Welfare Reform.
We Are NOT Second Class Citizens © Catherine Hale 2020.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.