Being disabled already carries a hefty price tag (Picture: Samantha Renke)

‘It’s like the Blackpool illuminations in here!’

Sat in the living room on a Friday night, my mother’s words rang around my head. So before I settled in to watch TV, I made sure to turn out all the lights. 

When I was younger, I would have rolled my eyes at her, but as an adult, and a disabled one, looking after my own finances in the middle of a cost-of-living crisis has made me really reevaluate what I can and cannot afford. 

The cost-of-living crisis is indeed affecting everyone differently, but personally, I’ve found it terrifying – and I’m not the only disabled person who feels this way.

A recent survey by Purple found 68% of disabled people believing they have been or will be more severely impacted by the cost-of-living crisis than those who don’t have a disability. 

Being disabled already carries a hefty price tag – we have to pay for things others don’t – like extra care, home adaptations or additional energy use to power things like wheelchairs. 

Having to account for these other expenses, I’ve found it’s the little things that I am actually finding the most challenging to afford. I struggled to buy cat litter the other week as I’ve found that it has tripled in price. 

My cats are part of my family – there for my anxiety – and I felt like I was failing them.  

Meanwhile, an ONS study found that 42% of people with a disability have cut back on food and essentials,11% higher than the figure for non-disabled people. 

That’s just one of the gazillions of worries floating around my mind each day – and while I’m sure everyone has them, for disabled people they are just so much more pronounced. 

Small personal changes won’t be enough for disabled people (Picture: Samantha Renke)

Will I have to cut back on care? Will I have to sacrifice going out and about because I dare not charge my electric wheelchair?  

Recently, with money worries in my mind I’ve been pushing myself beyond the limit, working harder and harder and resting taking a back seat.  

Freelance work is temperamental, and knowing I need to work to earn money for the essentials has become almost an obsession, to the detriment of my health. 

Last week, I broke down on the phone to my sister as I’m due to have an operation on my leg and one of the main reasons I’ve been putting it off is because I don’t want to lose out on work while I’m recovering.

I imagined coming home from an operation and having to sit in a cold flat, without enough money for additional support if needed. That frightens me and I know I’m simply putting off the inevitable.  

For disabled people, there is no easy fix and many of us will simply have to sacrifice basic necessities like heating or food, even if that means having negative impacts on our well-being. 

The government, charities and campaigners have offered a lot of advice, but most of what I’ve heard or read doesn’t necessarily take into consideration a disabling world and the needs of deaf, disabled and neurodivergent individuals.  

Take for example the well-meaning advice to wrap up warm during the winter.

As a lady of short stature, layering up is impractical – my short limbs mean that having bulky clothing limits my mobility even more. I bought a fluffy snug the other day and while it was warm and cosy, I could barely move, never mind push my wheelchair. 

A few years ago, I slipped off the toilet, fracturing my collarbone and skull because it was winter and I was wearing thick tights that made transferring dangerous.  

Layering up is impractical – bulky clothing limits my mobility even more (Picture: Samantha Renke)

I’ve also come across advice to unplug utensils and devices such as laptops and microwaves from the mains but if, like me, you cannot reach sockets and use smart technology then unplugging everything of an evening just wouldn’t work. 

These may be small changes but could save you significant sums over the year – but they’re often impossible if you are disabled. 

Many non-disabled people will also change their travel habits to save money, but lots of disabled people cannot use public transport due to overcrowding or insufficient infrastructure.

Those problems, and the fact I can’t cycle, can mean a huge chunk of my earnings go on expensive taxis. 

This is the reality for people like me and I’d like to see a wider recognition that this crisis will be so much harder for us to navigate. A simple ‘put on a cardigan’ won’t do.  

There needs to be an overhaul of the support we receive instead of just one-off token initiatives dropped throughout the year, like the £150 Disability Cost of Living Payment. 

But I’m not holding out much hope, with the government rejecting recent calls to overhaul the PIP (Personal Independent Payment) system. Disability Rights UK are also worried about what the Autumn Statement this week will mean for us.

Despite all this, I’m going to take charge and be proactive in ways that are smart, realistic and don’t compromise my independence and wellbeing too much.

I’ve learned from bitter experience that living with a disability can mean you feel invisible most of the time and I’m not going to wait around for the rest of society to recognise my needs and acknowledge the issues I’ve outlined. 

And there are still things I can do, starting with being a bit more honest about my spending habits.

I’ve absolutely noticed a rather unhealthy trend that sees me buying clothes, home interior bits and bobs, make up etc when I’m feeling low, anxious or isolated.  

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But small personal changes won’t be enough for disabled people – it’s times like this that we need to come together as a community. 

Of course, disabled people and our needs and circumstances differ from each individual and we won’t all experience the same day today barriers. Nevertheless, I’ve found that disabled people are often the best people to ask for help and advice in these situations. 

We are inherently problem solvers. We make do with what is at our disposal because we often have no other choice. We know there is no shame in admitting you are struggling – and make no mistake, we are. 

Without additional support from the government this winter people will continue to struggle to pay for essential expenses, and disabled people look set to suffer disproportionately. 

We need action, or people like me will continue to live in a perpetual state of fear and anxiety as to what price increase will be next.

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Knowing I need to work to earn money for the essentials has become almost an obsession, to the detriment of my health.