Words by Maximilian Jenz
“When people ask me if there would be deaths this winter, my answer is simple: if it stays under six figures, you’ll be lucky,” says David Wood, a 40-year-old disabled man.
With bone-chilling temperatures, mind-numbing bills, and an ever-worsening energy crisis; the stakes were higher than ever. It becomes increasingly difficult to justify these living conditions in a country which seems to normalise suffering, with those in power doing little to change that.
David, an IT technician from Mansfield who suffers from arthritis, has been disabled since the pandemic. He requires an electric wheelchair, refrigerated medicine, and a warm home to maintain his body temperature due to a heart condition – all of which increase his domestic energy use.
With spiralling energy prices, his already difficult circumstances are set to worsen.
“I lie in bed thinking about what’s coming. I am paying at least triple for my gas and electricity compared to two years ago,” he says. “Where else could we cut back? We downsized from a four-bedroom house to a two-bedroom bungalow.
“I’ve got my Lego collection, but that’s the last thing I want to sell.”
With energy bills doubling since last winter, disabled people, who need more gas and electricity on average – are living life on the edge, confronted by the worst living conditions in recent years.
In England in December 2022, excess deaths were 13.5% higher than expected. In winter 2022, 45 people per day died due to cold homes according to National Energy Action – a figure which is likely to be much worse for the most recent winter, as energy bills have since doubled.
“Cold deaths may reach pandemic levels”, says David. “I’m genuinely worried about a lot of communities.”
The risk of power cuts is a life-or-death issue for disabled people. Vital equipment such as ventilators requires constant electricity. The tragic death of diabetic David Clapson, who died after missing one meeting and losing his benefits payments, is an example of this.
Mark Hannaby, 55, is permanently bound to a power chair due to a brain injury. About the potential powercuts, he says, “I’m only independent because I got three things: If my van stops I’m stuck at my local shop, If my lift stops I’m stuck at home, If my wheelchair stops I’m stuck in my bed.”
Mark can only travel in a heavily modified van which costs him £60 for each journey. “It’s “just not doable,” he says. But, despite the financial strain and limited support, he has to find a way to get to the neurological rehab centre three days a week.
Disabled households in the poorest 20% of people spend twice as much of their household budget on energy bills. They are also two times more likely to have a cold house and are three times more likely to be unable to afford food, according to research by disability charity Scope.
Mark uses an outdoor wheelchair lift that breaks down three times a year. Its repair cost averages £950, which he has to pay out of pocket.
“We’re just on that borderline, it’s killing us,” he says. “We don’t get any help with things like council tax, or anything else we’re paying.”
Similarly, David spent £15,000 out of his pocket on mobility aids, moving houses and accommodating being disabled in the last two years.
According to a report published by Scope in 2019, disabled people face an average extra cost of £583 per month compared to non-disabled people.
Simran Bamrah, 36, a customer success manager from Slough, suffers from fibromyalgia, and chronic illnesses such as IBS. She says, “If you’re working full-time, they don’t see you as disabled, that’s the message.” she said.
Simran suffers from sleep apnea and spends approximately £179 monthly on heating. Her domestic energy usage would increase to £250 if she chose to use her AC pack machine regularly.
“As much as I need that machine, I’m using it sparingly. I don’t think my doctor would be happy about that,” she says.
And even if you do qualify for means-tested disability benefits, getting the support you need is not an easy journey.
For people with certain non-visible disabilities, the assessment waiting times which can last up to 18 weeks, and repeatedly having to prove your disability to get support can cause significant mental strain.
Mark explains the complexities of getting support for those who are suffering from hidden disabilities. He says, “At my rehab centre, there are clients who look fine. Even if you spoke to them, you wouldn’t know they had a brain injury. However, they are far more disabled than I am, but you could never tell.
“Trying to get help with an invisible disability would be much harder,” he says.
Does the government even know who vulnerable people are?
During his budget speech, Chancellor of the Exchequer Jeremy Hunt promised to provide a cost of living support during these difficult times, “to the most vulnerable”. At the centre of government policy would be “British compassion”, he said.
A support packet of £900 cost of living payments on means-tested disability was promised at the time for this year, however only £150 for people on disability benefits. Thousands of disabled people carers on specific benefits will lose £650, according to money-saving expert Martin Lewis.
The government has also chosen to tighten its belt for the eligibility criteria of the Warm House discount scheme, an estimated 500,000 households – in particular, people with disabilities could be excluded from this support at a time when energy costs are at a high.
Currently, the NHS is handing out “heating prescriptions” to people who are unable to afford spiralling energy bills.
Disabled people are struggling, and we have to question the hypocrisy of a so-called government that claims to have “British compassion” at its centre.
Kate adds, “Don’t treat us as if we’re not worth your time and consideration. At the end of the day, we’re human beings, we’re the same as everyone else.”