Finding a massive hole in the social safety net

Hey there,

Like many of you out there some of my household bills went up in April – again. In the UK weekly budgets are still being squeezed. Lots of people are feeling the pinch, and having to make difficult decisions.

It’s particularly tough for people with disabilities, chronic health conditions and other vulnerable groups. For some, turning down the heating isn’t an option; specialist equipment and assistive devices often require power to run.

The term “cost of living crisis” first came to the forefront of conversations in the UK in late 2021. It wasn’t new, of course, there had been years of austerity and cuts to public services. But it neatly summed up a systemic issue – and the rate at which gas and electricity bills shot up certainly felt new and dramatic.

In 2022 my colleagues in Bureau Local were looking into how the cost of living was affecting the most vulnerable in society. Vicky Gayle, who led the project, was in regular contact with Julia Modern from Inclusion London, a charity which supports deaf and disabled people’s organisations in the capital. She first alerted Vicky to an issue faced by many of the charity’s clients.

I caught up with Vicky recently, and she told me about the discrepancies between the enegry regulator Ofgem’s guidelines for protecting at-risk consumers, and what was happening on the ground. “What was stated on paper wasn’t actually happening in reality,” she told me. “Vulnerable customers, and particularly those with disabilities, were getting caught up.”

At the time the narrative in the media was a simplistic one of households choosing between “heating or eating”. Vicky told me that it went far beyond that for disabled people. “There are all these other costs that you have to bear in mind as well,” she said. “I think the story [we wrote] went beyond that narrative and broadened perspectives as to what the cost of living was like for someone with a disability.”

Data was a key issue in the reporting. There was a gap in the records of people whose gas and electricity were cut off, temporarily or otherwise. Ofgem was not able to say how many of the disconnections were vulnerable customers, despite commitments to protect them.

Through Freedom of Information requests the team was able to find out that 50,000 people went without gas for more than a day at a time at the beginning of 2022, and similar numbers were going without electricity.

The story came out with the Mirror during a very cold winter, just before Christmas. There were some fast and tangible changes as a result. One person featured in the story had their energy bills paid off by a Mirror reader. Vicky told me how through talking about their story another realised there was no shame in needing additional help and went on to contact their supplier.

“That winter was really the start of the energy crisis. Our energy operator had collapsed, and we were switched to British Gas. I require a lot of energy. I use medical equipment day in and day out, including power wheelchairs, a non-invasive ventilator, an air mattress, and require consistent warm temperature throughout the year. The bills rack up quickly and there wasn’t any government or local authority support. Again Disabled people were being left struggling.

When the pandemic started, I couldn’t leave the house for 284 days. That kind of anxiety and stress was back with the energy crisis.

Speaking to Vicky and the team, I was heard and listened to. It was accurate in terms of how I was feeling. When it comes to representation of Disabled people there can be this ‘Oh you’re so brave, so inspirational! Oh, you can say your own name!’ However, Vicky just treated me as a human being. Yes I’m Disabled, but there’s a lot more to me.

One thing that moved and surprised me was the response of people when the story came out. There’s this narrative where we are made to hate on different groups of society, as a distraction from the systems of oppression. But individual people, private citizens, were getting in touch saying ‘Can I help you? I’d like to help with your bills.’

I didn’t accept any of these offers. It was tough, but I had income. But things have changed in the past two years and it’s more challenging.

At the time of the story, I didn’t know about some false debt that was moved in the switch to British Gas. We were in credit, but the false debt had a knock-on effect making bills higher and higher. We were never told about the debt though, so I thought it was because my room needs to be kept at a certain temperature and my equipment is expensive.

After the article, my household was put on a register to prevent energy from being cut off, which was something. But at the same time, it isn’t much relief if you know your debt is increasing, and could result in bailiffs or bad credit.

My sister has gone back and forth trying to sort this out, contacting British Gas, Ofgem, the British Gas Trust, which is a grant service for vulnerable people (but only if the debt is less than £2,000. Ours was £5,000). We used a service called Resolver to get to the bottom of the debt, and it has now been recalculated, but is still over £2,000. We’ve also switched to Octopus, who have been better with customer service and support. They are much more human, responsive, and organised. But we are still paying a lot.

Everything is connected: the energy crisis, the climate crisis, how we treat vulnerable people, who we care or don’t care about. We need a holistic approach. Even with disaster planning for things like blackouts and natural disasters, Disabled people are not included in conversations and solutions for these emergencies. No one’s integrating us into national policy, in terms of how you evacuate or take care. We aren’t part of the conversation, let alone the solution.

There’s also the Disability Price Tag highlighted by Scope. In the UK Disabled people pay on average an extra £1,010 a month for the cost of being Disabled.

And the perceptions of Disabled people are too low. The expectations on our lives, what we should do, what we are allowed to do. It frustrates me.

Disability is not inherently a bad thing. This narrative, particularly in the far right media, is that we’re either benefit scroungers or we’re Paralympians. Disabled people like me are human; no more, no less.

We must change the narrative. Today our worth is still defined by our productivity. I’m blessed, I am able to work, for now. But some Disabled people struggle to get a job, or can’t access the office, or are unable to work because they are in so much pain. That doesn’t mean we’re less human and of no worth. It’s scary that our worth is defined by our productivity. We have to redefine how we see human beings.

Together, we will change how you see and treat your future Disabled-self. Are you in?”

We may be heading into summer, but if you are worried about your gas and electricity bills, it may be worth registering for priority services from your supplier. You can check guidelines from Ofgem here to see if you’re eligible.

Until next week,