Benefit reforms risk pushing disabled creatives back to the margins

If we’ve learned one thing from the government’s disastrous attempt to introduce the Universal Credit and Personal Independence Payments (PIP) Bill, it’s that disabled people’s participation in culture as artists, employees and audiences is intrinsically linked to the welfare benefits we receive.

Just like creative industries tax reliefs, state benefits like PIP and Access to Work have invisibly oiled the wheels of our industry and enabled our participation in a way that even the best inclusive employment policies simply cannot deliver on their own.

Vigorous campaigning succeeded in dramatically upending the Parliamentary Labour Party’s position on the legislation, filleting the Bill of most of the measures that would have limited access to disability benefits. But the fight has come at significant cost to the collective disabled psyche: there are no celebrations taking place in my community.

‘Disability erasure’

Many disabled people feel directly threatened by a wider policy agenda that appears contrary to protecting our civil rights or valuing our contribution to society. From the lack of protection against the huge health risks of Covid to the Assisted Dying Bill, which some believe fails to offer disabled people adequate safeguards, to the ever-tightening restrictions on state benefits, collectively some say this amounts to ‘disability erasure’.

I’m not so sure, but I am convinced the arts remain an inclusive safe space. We should be proud of the contribution the sector made to the recent benefits campaign. The distress calls from disabled theatre company Graeae and disabled artist Jess Thom got a swift response in the form of this Culture Sector Open Letter, drafted by Cathy Waller and Tom Ryalls, that garnered over 3,000 signatures, including from the leadership of the Royal Shakespeare Company and National Theatre.

Alongside, Cherrylee Houston’s #TakingThePIP campaign brought together over 100 high-profile disabled creatives and achieved extensive media cut through.

Sector’s anger at the legislation

Elsewhere, in an unusual move, Arts Council England (ACE) CEO Darren Henley publicly expressed his concern about Thom’s experience with Access to Work. Behind the scenes ACE, supported by its Disability Advisory Committee which I chair, collated extensive evidence from across the sector to inform its response to the government’s consultation on the Pathways to Work Green Paper, which focused on the future of Access to Work and other benefit changes.

The sector’s anger at the legislation has forced into the open what disabled people have known all along. We need financial support for the extra costs of living which the design of our society creates and is in some measure provided by PIP – the very benefit government was seeking to limit. The charity Scope recently published its annual disability price tag report which estimates the extra living costs faced by disabled people stands at £1,095 per month.

My own 35 years in the creative industries has been built on the support from PIP and its many predecessors to cover the extra mobility and personal care costs incurred as a consequence of severe physical impairment. It is what gives me ‘independence’.

But many disabled people need further support to cover additional costs via Access to Work for support workers, access adjustments and travel costs which, while not the focus of the now-gutted bill, has major problems of its own.

System in disarray

The system is currently experiencing vast claim backlogs that require employers of disabled people to bankroll access adjustments and wait many months for reimbursement by the Department of Work and Pensions.

According to the Access to Work Collective, nationally there are 62,000 outstanding applications and 33,000 individuals awaiting payment, resulting in many disabled people, as well as employers and suppliers, going into debt while waiting for payment. I know of several arts organisations maintaining significant budgetary cashflows to cover these access costs, often with no guarantee their claims will be successful.

Over the last few years, we’ve seen maximum claim caps introduced and reductions in individual claims – like Jess Thom’s, despite no change in her role or disability. Thom is currently awaiting the outcome of an appeal, this whole process having taken over her life for two months, placing the artistic output of TourettesHero on hold.

This creaking, blocked-up system is a major barrier to work for disabled people. It is damaging career progression, self-employment and entrepreneurship. As Thom says: “When Access to Work works well it’s glorious. It gives working disabled people like me a fighting chance and means we don’t cost more to employ than our non-disabled peers.”

Access requirements perceived as burdensome

And that is a vital point. Disabled people recognise that if our access requirements are perceived as additional financial burdens by employers, the prospects of employment dwindle. Yet during the welfare reform debates, it seemed many of our politicians didn’t understand the fundamental differences between the benefits or what they achieve. They spoke naively about getting “disabled people back into work” while threatening to remove the very mechanisms that underpin our ability to do so.

While reform of PIP is off the table until the Minister of Disabled People Sir Stephen Timms undertakes his review – to be co-created with disabled people’s organisations – the focus now needs to move to ensuring Access to Work functions fairly and efficiently. Reform is badly needed.

Because while PIP helps disabled people to live, Access to Work gets us into work and enables us to thrive. Combined, these benefits have fuelled the UK’s world leading and globally respected disability arts infrastructure alongside a record number of disabled people in creative employment.

Time and again the arts have led society’s way with access, but we should remain on high alert that, without equitable access to both these life enhancing benefits, disabled creatives would once again be forced to return to the margins.