“When people ask me if there will be deaths this winter, my answer is simple,” says David Wood, a 40-year-old disabled man: “if it stays under six figures, you’ll be lucky.”
Bone-chilling temperatures, mind-numbing bills, and an ever-worsening energy crisis; the stakes appear to be higher than ever. It has become 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, who is an IT technician from Mansfield suffering from arthritis, has been disabled since the pandemic and was diagnosed with numerous health conditions that have increased his domestic energy use. He requires an electric wheelchair, medicine which needs to be refrigerated and a warm home to maintain his body temperature due to a heart condition. With spiralling energy prices, his already difficult circumstances are set to worsen.
“I lie in bed thinking about what’s coming,” he said. “I am paying at least triple for my gas and electricity compared to two years ago.
“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 on average require more gas and electricity – are now being forced to live life on the edge, confronted by the worst living conditions in recent years. In 2019-2020 an estimated 8,500 people died due to cold homes. According to DPAC (Disabled People Against Cuts) activist Linda Burnip, this winter “that number could be a splash in the ocean”.
“Cold deaths may reach pandemic levels,” David said.
“I’m genuinely worried about a lot of communities.”
The risk of power cuts is a life-or-death issue for many disabled people. Constant electricity is needed to power vital equipment such as ventilators, so without it, they are put at risk.
The tragic death of diabetic ex-soldier David Clapson, who lost his life because he couldn’t afford to run his fridges to store his insulin, is an example of that.
Mark Hannaby, 55, is permanently bound to a power chair due to a brain injury. In relation to the risk of power cuts, he said: “I’m only independent because I’ve got three things.” Without these things, he is stuck.
“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.”
Fuel poverty, a grievance for many, disproportionately impacts disabled people.
Mark can only travel in a heavily modified van which costs him £60 for each journey. It’s “just not doable,” he said. Despite the financial strain and limited support, he is required to visit the rehab centre three days a week.
Disabled households in the poorest fifth percentile spend twice as much of their household budget on energy bills, are two times likely to have a cold house and are three times more likely to be unable to afford food compared to those in the richest fifth households, according to research by disability charity Scope.
In addition, a third of disabled people cannot afford to pay bills. 70% of those reported reducing their heating and lighting and more than half reported eating less according to the Greater Manchester Disabled People’s Panel, the largest surveyor of disabled people in the UK.
Looking back, the impacts on disabled peoples’ lives were already being exacerbated by a decade of austerity.
Disability benefits are viewed as ‘income’ to be means tested rather than necessary support for day-to-day living as a disabled person.
There is this false assumption in the media that large sections of the disabled population claim benefits but don’t work. However, we need to recognise that there is indeed a ‘grey area’ which is the countless disabled people who work full-time or exceed the means-tested benefits threshold and receive little to no support from the government.
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.
He said: “We’re just on that borderline, it’s killing us. We don’t get 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.
Nearly 3 million disabled are facing an average £367 a year shortfall in support, with those facing the highest living costs seeing a shortfall of up to £505.
Simran Bamrah, 36, a customer success manager from Slough, suffers from fibromyalgia and chronic illnesses such as IBS.
In her opinion: “If you’re working full-time, you’re not seen as disabled, that’s the message.”
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 said.
Even if you do qualify for means-tested disability benefits, getting the support you need is not an easy journey.
According to Kate-Ross Kellam, a former hairdresser with a non-visible disability, the long 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, who is visibly disabled, explained the complexities of getting support for those who are suffering from hidden disabilities: “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 said.
Does the government even know who vulnerable people are? During his budget speech, the chancellor, 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.
The government decided to freeze the rising prices until April 2023, reneging on the original time of two years. Average energy bills are set to reach an estimate of £4,300 by April 2023, compared with £1,277 in October 2021, according to the consultancy Cornwall Insight.
A support packet of £900 cost of living payments on means-tested disability was promised for next year, however only £150 for people on disability benefits. Thousands of disabled people on specific benefits will lose £650, according to money-saving expert Martin Lewis.
Currently, the NHS is handing out “heating prescriptions” to people who are unable to afford spiralling energy bills. Something as simple as heating should not be commodified – it’s a human right and not a prescription.
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, the disabled could be excluded from this support at a time when energy costs are at a high.
Research by Lottie showed a 5000% increase in online searches for ‘disability payment dates 2022’.
Disabled people are struggling and will have to come up with nearly a third of their income by next spring for fuel bills. Does this symbolise a government with “British compassion” at its centre?
This is the cruel reality for disabled people living in Britain today, one that isn’t widely known to the public.
Could you survive on these terms?
In Kate’s words: “Don’t treat us as if we’re not worth your time and consideration, because, at the end of the day, we’re human beings, the same as everyone else.”