Heat, eat or ventilate – the impossible choice facing disabled people

“Heat or eat.” It’s the dilemma of the day. The slogan for Tory economic policies too, if we’re being honest. They’d use it if they were, but honesty is extremely hard to find in Toryland these days.

But while that grim little rhyme aptly sums up the looming winter horror that millions of Britons will face, I’m sorry to say that it’s not the worst of this. It really isn’t. Some of us face an even darker dilemma: heat, eat or ventilate. Yes, heat, eat or ventilate. We’ve long known that life costs more when you’re disabled. Disability demands specialist equipment, specialist clothes and/or food. Put “disabled” on a product, too, and you put about 200 per cent on the price. That’s not an exaggeration.

A friend of mine once disgustedly showed me his £20 wheelchair wheeling gloves, which lasted all of a couple of weeks (he spat when I showed him the ones I used from Sports Direct, which were a fiver). Financial products are also often more expensive. Insurance can turn into a nightmare. The charity Scope puts the extra costs grand total at £583 a month but that was calculated before the cost of living crisis got really nasty. It will have sharply increased since then. And the problems it causes are coming to a head.

We’re at the acute level of acute. Hence heat, eat or ventilate. Heat or eat is a truly horrible position to be in. People are going to freeze this winter because you can’t not eat. But what if the choice is heat, eat or ventilate?

Ventilators, and other specialist equipment people rely on to survive, drain power. The government would point out that it kicked an extra £150 over to disabled people in its most recent support package. But that £150 is a drop in the ocean when set against the costs disabled people face. It will evaporate faster than a glass of water left outside during those hellish days when the mercury topped 40 degrees celsius and Britain got to sample living in a sauna, which is what it’s going to be like for our kids if we fail to tackle the climate crisis.

More is needed. Scope says it is already being “inundated” with calls from disabled people who have cut their household budgets, and then cut some more, and have nothing left for the scissors. This, remember, is before the looming winter energy price hike, and then the one in January, which is coming thanks to regulator Ofgem’s shameful decision to put the energy industry ahead of consumers by updating its cap in the middle of the coldest months of the year.

Disabled people are going into debt to pay for essentials like food right now. Their health is suffering. Feelings of isolation and anxiety are widespread. What is it going to be like in December? “We’ve also seen numerous safeguarding concerns, with callers feeling hopeless and suicidal,” Scope says. The charity is calling for a doubling of the support package and the potential of introducing a discounted energy tariff for disabled people.

The latter is something I feel is particularly worthy of further investigation. It could be a lifesaver, but I worry that a disgusting, cynical calculation is at work in the government’s decision making over support for disabled people. It rests on the idea that “they” are getting something that other people are not at a time of crisis, and on the ugly and misplaced resentment this fuels.

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I hope this isn’t widespread, and I don’t think it is. But it is there. If you want a worked example, think about why it is that politicians sometimes like to take shots at the Motability scheme, which proves disabled people with transport and transforms lives. And it’s not just the Tories who’ve been at it.

The obvious counterweight to this are the horror stories which are going to emerge, the real life consequences of the crisis’ impact on a group of people already faced with grotesque extra costs which many have no means of meeting. I don’t want to have to write those stories. It’s bleak when you end up telling the tale of people in a very similar physical state to my own who have died. There’s the feeling of “there but for the grace of God”. I’m not religious but you get what I mean.

Trussonomics, with its prioritising of unfunded tax cuts for the relatively well off, is inevitably going to create those stories. How do you solve a dilemma like heat, eat or ventilate? You probably end up calling the ambulance, while crossing your fingers that an already over-stretched NHS has a machine available to keep you alive in a heated ward when yours has been shut off because your electricity has been cut off. Probably.

I fear some disabled people are going to die, needlessly, purely as a result of a grim political choice. I’m not over-egging the pudding here. It will happen in the absence of action.