‘Unsurprising Seasonal Anxieties for the Disabled and Elderly’

Who remembers those gas heaters on four castors that you could wheel around – the ones you had to buy a refill bottle for at least once a week? They were clunky things, with a heating grill at the front. Very old-school.

Last August, I turned 64, something of an achievement for someone who is not only disabled but has been unwell since early childhood. I have a good memory, in the sense of remembering stories from my earliest years, despite the dysfunctional blips that occur since my brain bleeds last year.

Ironically, I remember in my younger years thinking that my brain would be damaged by the cold, literally frozen like a bag of peas. This continued each winter throughout my adolescence due to the low temperatures in my family home. To think of it now sums up the notion I had then that I was living like a Victorian waif. But this memory also highlights how much has changed in a relatively short space of time.

I grew up before central heating was the norm. Before I turned 20 we also had an outside toilet, and sometimes, when I refused point-blank to go through the indignity of using a commode, I would creep out – even in the snow – on my crutches.

Even when I had a ground floor bathroom built, there was still no heating, just the trusty Calor Gas heater. Reliant on my older brother to pick up a fresh bottle when needed, I would fry my pained teenage legs to a height of warm bliss, and my younger brother and sister would huddle in my downstairs bedroom to share the warmth. 

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There was another gas fire attached to the hearth in the lounge which was kept on a very strict ration, because mains gas was expensive, and an absolute luxury within our working class home.

It has been on my mind again of late – heat rationing.

As the weather turns and we move into autumn, for elderly and disabled people making choices is harder than ever. To eat or to be warm.

Getting used to the fact that the Conservatives are no longer in government, I remain wary of Starmer’s Labour administration. The attack on the winter fuel payments claimed by pensioners feels vicious and incomprehensible. I am nothing but relieved that we got rid of Rishi Sunak and co, but my nervousness remains.

Despite this, I cannot lay blame on Labour for the Conservative decision to end Working Tax Credits and digitally migrate us all to Universal Credit. 

The process for this for people like myself approaches harassment and outright stupidity – yet again highlighting a vast pit of ignorance that all politicians are seemingly guilty of. 

It should, in fact, present itself as a reminder of our actual humanity – the reality that we are not numbers and that challenges cannot be solved by tokenistic box-ticking. 

Which is precisely what I am facing now.

During the past few months, despite being given the infamous ‘fit note’ by my supportive GP – which means I’m not deemed fit enough for work in the open and generalised sense – it has made no difference to the UC process, which is unbearably slow and involves very few living, breathing human beings.

On my online UC page, I receive job offers from anonymous ‘job coaches’ – which I truly hope occurs in some randomised fashion – for work as varied as childcare, domiciliary care, and my absolute favourite to date, construction. I’ll allow you a moment to digest this fact. 

A grim image arises of grinning Tory ministers rubbing their hands together at the prospect of someone like me wheeling onto a building site. Perhaps my power chair could drag along a wheelbarrow? Or bags of concrete? 

I’ve been forced to complete a work capability form called the UC50. A friend of mine suggested we should start a band, the inheritors of 80s political pop reggae group UB40. For readers under 30 who may not know, ‘UB40’ referred to the Unemployment Benefit Form 40 issued by the then Department of Employment in the 1970 and 80s.

My current experiences almost make me wish for those days of the Invalidity Benefit. Back then, disabled people were invisible, and the Government liked it that way, giving us a little bit of income to keep us fed and watered, though with no equality, no equity, and no sight of anything approaching independence and freedom.

I don’t wish to spout some misplaced egotism – and don’t ever dare to call me ‘special’ – but I simply couldn’t live with that then, as I cannot now. To be patronised and seen as less; mollified with a pittance and urged to be grateful. 

A staggering irony is that, if disabled people had more autonomy in how their needs can be met – and their often extraordinary problem-solving skills were used – then some of these despicable barriers and conundrums could be deconstructed, leaving us to work together more productively, and imaginatively, for the betterment of many.

I’m already making plans for cutbacks in my expenditure as I wait – three months and counting – for the inflexible Department for Work and Pensions system to finally catch up with what my GP already knows, and what I already know: that I do not have the capability to work in the open job market. 

I don’t feel privileged that I earn a tiny income as a writer because I have worked damn hard all my life to use the skill I have honed to be able to do so. Besides, on UC, it is simply deducted from the benefits I receive. 

As this winter approaches, I don’t suppose I will look for the funny old-school gas heater on castors. And it wouldn’t surprise me to find out that those earlier versions would be considered highly dangerous now – they were certainly smelly, and not great at creating ambient heat. 

But, as the rigid boxes keep coming to curtail me, and even now the new Government is threatening cuts behind their disingenuous smiles, I wonder what new threats disabled and elderly people will face as the season turns.

Penny Pepper is an award-winning author, poet and disabled activist