Do No Harm lobby
This is the text of a speech I gave at a lobby of parliament organised by John McDonnell on 13.02.19 called Do No Harm. Campaigners told MPs how to reduce the appalling damage to disabled people's lives caused by social security cuts and reforms.
Read more about the Do No Harm lobby in The Mirror and Disability News Service
A hostile environment for disabled people
The Windrush scandal revealed how government policies can deliberately make life difficult for its citizens.
The same hostile environment has been put in place for disabled people, through welfare reforms that have caused us such suffering and harm, and made us into objects of hostility and distrust.
The hostility and suspicion was not accidental. As Mo Stewart, who can’t be here today, has demonstrated, its origins can be found in the writings of two scientists, Gordon Waddell and Mansell Aylward, who’ve advised insurance companies and governments on ways of cutting payouts to sick and disabled people. Their body of work says that most chronic mental and physical illness can be put down to malingering, deception or lifestyle choice. Their unevidenced theories still influence social policy today.
They maintain that disabled people’s own accounts of their health is contentious and the main purpose of assessments is to prove that we’re lying. The only way to get us out of our self-imposed ill health, according to them, is through compulsion and punishment - aka sanctions.
So the first thing we need to do to overturn the hostile environment is to call out and reject these theories.
We no longer permit scientists to say that homosexuality is a psychiatric condition. Or that some “races” are less intelligent than others. Let’s root out the so-called science that says that disabled people are liars and cheats.
Stop designing assessments that treat us as though we’re guilty until proven innocent.
The Work Capability Assessment is the main instrument of fear and despair in the hostile environment. We’re delighted that Labour has committed to scrapping it and talking to disabled people about a new way forward.
Scrapping the WCA
But let’s be clear that work capability is not something you can objectively measure in a person’s body or mind. It is the interaction of our health or impairment with social and economic factors, including government policy.
We shouldn’t be assessing “work capability”, we should be addressing structural disadvantage in the labour market.
We, as Disabled people are the experts in understanding that interaction between health and society. It is different for each type of disability, and different for each person. The biggest mistake is to treat us all the same, with one-size fits all solutions.
For some of us, the answer is not yet another assessment system at all. It is better enforcement of our Equality Act, tackling discrimination and unfairness at work. It is rebooting the Access to Work programme, so that instead of its obsession with cutting costs, it does its job of keeping disabled who can work in work. And it’s a social care system that is fit for the purpose of supporting us to live independently so we can get out of the house and get to work.
For others of us, it’s about completely scrapping the framework of the WCA and starting from our lived experience mental and physical ill health and how it makes work challenging and often impossible.
We need to be asking a whole different set of questions relating to the real world of work: not can you pick up a pound coin and lift a milk carton but how does limited stamina affect your performance at work? How many hours per week can you work reliably and repeatedly without your health getting worse? How do your pain levels affect your ability to sustain concentration on a task? Is your condition likely to get worse or better over time? Or What are the circumstances in which work is not good for wellbeing but actually increases anxiety and distress?
In order to redesign the assessment system, we need the expertise of all different forms of disability, to make sure we ask the right set of questions.
And if a person is fit for work providing the right support and the right job is available, it is the duty of government to mobilise that support and create an economic climate where good jobs can flourish.
If work is not a realistic option, we need to ask how can we find other pathways to bring the health benefits of good work to our lives?
What is work? What is a good life?
On that note, let us move away from the mantra that paid work is the only valid route to being a good citizen in our society.
I would like to make a plea for parity of esteem between paid and unpaid work. And let us stop to think what work means.
And while we’re at it, let’s talk about lifestyle choice. We’ve had such a moral panic about the idea that the benefit system shouldn’t enable a lifestyle choice. So let me tell you what the lifestyle choices of disabled people actually are rather than the myths you hear about flatscreen TVs.
Our life of choice when we can’t work is playing an active role in our families: supporting our children in school, caring for our parents in their old age, forming and sustaining relationships. Our life of choice is to make a difference to our communities through volunteering. And when we’re bedridden or housebound, our lifestyle choice is to reach out to others through the internet and support each other to manage our health and find meaning and purpose.
The current system takes away those lifestyle choices. It leaves us consumed with worry about how we will pay the next heating bill or feed our children, and paralysed with dread for the arrival of the brown envelope announcing our next assessment.
Disabled people need an adequate and secure livelihood that compensates us for disadvantage in the labour market, meets the significant extra costs of living with a disability and enables us to live and contribute as equal citizens.
Universal Credit and Universal Basic Income
Which brings us to the wider environment of social security. At present this is Universal Credit.
Everything about UC creates a hostile environment for disabled people.
In parliament we’ve heard mostly about payment delays and people falling into debt and facing eviction. But other features of UC are just as hostile for disabled people.
The so-called Claimant Commitment is nothing more than a stricter and even more punitive sanctions regime. Every piece of research, including by this government, shows that conditionality and sanctions only serve to move disabled people further from work, not closer.
UC is “digital by default”, they say, so every process is automated. Yet nearly half of claimants aren’t able to navigate the digital claims process, meaning that particularly people with learning disabilities are excluded from the system.
With stealth cuts introduced into UC, disabled people living alone with the highest support needs lose premiums worth £178 per week.
And disabled people in work lose out on disability elements to working tax credit to the tune of over £4K per year.
As disabled people we tell you there is no redeeming feature of Universal Credit that makes it worth keeping and tweaking. It is not lifting people out of poverty, it is simply pulling more people who are actually in work into poverty because the support they had under the old system is cut.
Universal credit must be scrapped.
What about Universal Basic Income as an alternative framework?
Its advocates say it would end stigma, promote citizenship. Anything that give us freedom and security is welcome. But we cannot welcome any new system that is designed and developed with disabled people’s needs as an afterthought.
Disabled people are twice as likely to be unemployed and twice as likely to being living in food poverty than non-disabled people. Any new system to replace Universal Credit will fail if it does not listen to us, work with us and put the full complexities of our lives at the heart of the system.
Read more about the Do No Harm lobby in The Mirror and Disability News Service