This is one of the tougher ones so before we get started on that, I thought I’d cheer us up with some of the good things that are happening in the Spare Tyre Universe.

·  This week at Chronically Creative someone came along for whom it was their first ever Zoom. It may seem small but to have connected with someone who hasn’t felt able to join in online before is significant (after 8 years of their condition confining them to being at home). I’m so glad they placed their trust in us and hope that we will meet them again.

·  I’ve had a conversation with a colleague and ally about intergenerational practice which feels like it could grow into a special project in the coming years. It took me back to the ideas that underpinned We Will Be Happy Here 

· We also had a planning meeting about a new project to encourage people to take on our ways of working and make them their own. Watch this space for more news.

These moments are special. They’re hidden from public sight but are vital to how we work and the art we make together. They all have one thing in common. They involve the lives and creative practice of disabled and chronically ill people.

Which brings me to the subject I need to focus on this week.  I hope that you will focus too and respond to the call to action. I’m speaking of the Government’s proposed £4.8bn cuts to disability benefits – most notably PIP and Access To Work. I find this blog hard to write because I’m a beneficiary of Access To Work and I’m in the process of applying for PIP. So, it’s made me by turns profoundly sad and angry to be in this position, and to unravel my thoughts into something coherent has been quite challenging.

There is one bright spot that’s just happened. Vicky Foxcroft MP for North Lewisham (and former shadow Minister for Disabled People) yesterday resigned as a government whip, because she cannot support the so-called reforms. Vicky is both my personal MP and the MP that represents where Spare Tyre is based. I was one of,  I assume, many constituents who wrote to Vicky asking her to intercede. I am sad for her that she had to lose her job in government to be able to do so, and very glad she made the right call.

So, what’s all the fuss about?

Simply put, the current government believes that the welfare bill is too high and that too many people are benefitting from the Personal Independence Payment (PIP) and Access To Work grants. They want fewer people to access them.  They also want to see more disabled people working (because it seems that only working people are valuable people). From my perspective it seems that these two goals are not only wrong-headed they are at odds with each other.

The government says that the number of people claiming these benefits has risen steeply. They seem to think there is a huge mystery as to the reasons why or that disabled people are faking it whereas the fraud rate for PIP has been found to be 0%.  They seem to have forgotten that there has been a pandemic during which time 1) many people acquired long term health conditions and disabilities, 2) the underlying health inequalities in the UK were revealed. People are still struggling with health inequalities caused by systemic social inequalities. People are still acquiring long term health conditions as a consequence of Covid. It’s just that no-one is officially counting anymore. You only need to join a Long Covid forum to see the evidence.

I haven’t met anyone who wouldn’t like to see both the PIP and Access To Work system and payments updated to respond the contexts that disabled people actually live in. The current system is binary (YES/NO), cumbersome, hopelessly backlogged, makes potential and current claimants feel like they are a burden or guilty of deception. I know because I’m one of them.

I have a salary and the support of a dedicated team and Board of Trustees and I’m finding it tough. What about the freelance workforce that every arts company depends on? For disabled freelances, the problem is far, far worse. Their jobs are often short-term and over before the ATW team has even acknowledged their application. Every arts company ought to be on high alert over this because they ought all to be engaging disabled freelances regularly and salaried team members, with ATW there to help.

Access To Work now it’s been awarded, goes some way to restoring my dignity and autonomy. It provides the means for me to be able to work (although we still have to fundraise as the grant falls short of the support worker costs & hours I need). However, as things currently stand, the payments are made 3-6 months after we incur the expense and put in a claim. With the new and inconsistently applied rules, I can only travel within a £15 taxi fare range, and that’s not how my job works, as I’ve explained at length and was agreed by ATW in 2022. Last year with no explanation the grant was changed. The support workers are now only compensated at less than the rates we previously agreed, so because we pay everyone fairly, we are making a loss whenever I get that support. On top of this, I am always anxious that we might not get the repayment, and Spare Tyre will have a huge bill for taxis and support workers. Some payments from 2024 are still AWOL without explanation. That’s not sustainable for us. What does the company do? Do I lose my job, or as Jess Thom at Tourette’s Hero has done, prepare to step down? Isn’t this discriminatory action on the government’s part? Doesn’t this actively work against their policy of wanting to see more disabled people at work? I’ve spent 30 years working paid and unpaid to make this my career. I’m 57. I’m not ready to stop.

What further upsets me, is that it isn’t disabled people being unwilling to work creating the issue. Societal ableism is what rules people out of work. Perceived “extra” costs, the whole culture against and fight for reasonable adjustments, and plain old prejudice and superstition, along with inaccessible environments and travel systems are the real obstacles to disabled people working.

And then there is the whole nasty business of language around work and validity. Many ill and disabled people can’t work, ever. How should we feel about ourselves if we find ourselves in that group? The government is piling shame on those people whose guilt and loss of agency is already enormous. This is not the behaviour of a civilised society, one that aims to protect and support everyone.

The government well knows that cutting benefits won’t solve any of those problems, and will cause a bunch of others instead, including increased use of foodbanks, higher self-harm rates, child poverty and the cuts will disproportionately affect women. It’s so disappointing to see this government punching down on the UK’s most vulnerable populations.

So what can we do?  Three or four things at least:

1)    The government isn’t consulting on their proposed changes to PIP but you can lobby your elected representative to support an Early Day Motion (EDM 949) which will trigger a debate.  Write to your MP using the link with your opinion or your personal experience. Believe me, it works. You may not think you’re that kind of person but it’s easy to become one. You simply write them an email – your opinion matters. The more “postbag” they get, the more they listen. Here’s how to find yours

https://edm.parliament.uk/early-day-motion/63320/reductions-in-welfare-spending

2)    The Government is consulting on Access to Work and there’s a chunky bit of reading involved. The consultation here to which anyone can respond closes on 30th June.
Don’t be put off (as I nearly was) that the link takes you to Chapter 2 – there are no questions for Chapter 1. You only need to respond to the questions that mean something to you. Tom Ryalls at BAP, working with Access All Areas, has compiled a suite of resources and information on Access to Work and the arts and cultural sector designed to help shape a submission.

3)    Spread the word amongst your networks, family, friends, social media. Anyone!

4)    And if you haven’t yet please respond to the consultation on the Review of Arts Council England to log your views on diversity, access and inclusion measures in current and future arts funding systems. You can respond to the survey here: https://www.gov.uk/government/calls-for-evidence/arts-council-england-review.

From the perspective of participatory and inclusive arts, I’ve been involved in conversations convened by What Next? with colleagues and allies, Tom Ryalls, and from Graeae, Access All Areas, Unlimited, BAP, Dash Arts, Entelechy, and others and they have between them provided a wealth of resources to help.
On Monday I’ll be putting together a response to the consultation about Access To Work for Spare Tyre and myself. Please if you have time, do join me in making your opinion known. Participatory and inclusive arts has made so many positive strides forward in the last few years, but without this support it will become even harder for more disabled colleagues to join us, and for those of us who are here to remain.  Please don’t let the government turn the clock back on us. We are all culturally poorer when diversity is threatened.
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Rachel from Dash Arts shared the following sources:
* A recent Freedom Of Information request from the DWP showed that hundreds of thousands of people will be impacted by cuts to PIP - figures far higher than those being publicly given by the government.

* PIP is a passport benefit to other benefits like Carers Allowance, Employment and Support Allowance, and Universal Credit–particularly the health element of UC (raised in the MP debate on 7 May). Therefore, loss of PIP will have a dramatic impact on households reliant on several benefits.

* The most accurate projection states that these proposed cuts will force up to 400,000 people into poverty including close to 100,000 children (figures from the Joseph Rowntree Foundation and Child Poverty Action Group, respectively, given to the Work and Pensions Select Committee in April).

* In 2024, the DWP found that the rate for fraud in relation to PIP was so small it was assessed at 0%. However, the language being used by the government vilifies and scapegoats disabled people and suggests that fraud is rife. 

* Both the All-Party Parliamentary Group (APPG) on Poverty and Inequality report (published this week, 16 June) and the Work and Pensions Select Committee have recommended that the Government don't go ahead with the cuts as they stand.

* The proposals will significantly increase the burden on the NHS and Local Authorities. Medical institutions and councils have made it clear that the extra burden on them will be intolerable. The BMJ has a number of editorials on this. The Green Paper states that this must not happen, yet all the evidence says it will.

* Women will be disproportionately affected by the cuts 

* The last big change to disabled people's benefits resulted in 600 suicides - something also raised at the PIP parliamentary debate in May. 
The cuts will increase use of foodbanks
 

If you need more information on Access To Work:

·  AtW is a programme that enables d/Deaf, Disabled and Neurodiverse colleagues to take their place in our workforce: contributing significantly to the government’s employability and growth targets, as well as to our globally-leading arts sector.

· Disability Arts Online has an explainer on Access to Work.

· Jess Thom has created this video explainer of what has happened to her: https://www.youtube.com/watch?v=fxpq3YCC2a4.