As a disabled person I need electricity to keep me alive. So why is it costing me so much? | Karis Williamson

I have a severe, life-limiting form of muscular dystrophy; my condition is progressive. My parents’ home where I live contains lots of medical equipment that keeps me alive and in the community, saving the NHS hundreds of pounds per night and keeping a bed free for those in need. Needless to say, all of this equipment requires energy – and this costs a lot of money right now.

Keeping me out of hospital entails ensuring that lots of medical equipment is continually charged. I use two ventilators, two ventilator batteries, one power-chair battery, one gastrostomy feed-pump, two suction pumps, one electric bed, one electric hoist, one cough-assist machine, one microphone amplifier and monitors to check my breathing when no one is in the room. I also need three hot water bottles night and day, to keep me warm in my power-chair and in my bed. That’s the baseline; additionally, when I’m ill or tired, I have to use an oxygen concentrator, a nebuliser and Sats machines. I wouldn’t be able to survive without the above equipment.

Campaigners have suggested the government bring in a policy called a “social tariff”, whereby a lower-income household would receive a significant discount on energy bills, funded by taxation or by spreading the subsidy cost across better-off bill payers. It’s not that I want a free ride, but the benefits of such a policy outweigh the costs, as my being admitted to a high-dependency ward would result in a far higher bill.

If there were nurses coming into my house, we would have to keep the central heating on 24 hours a day, plus lighting, as well as running the above equipment. The cost would be phenomenal, probably somewhere between £12,000 and £15,000 a year if current estimates are correct. The government has promised “£1,200 to the most vulnerable” , but I do not qualify. The UK government did not make this clear in its statement when it said vulnerable households would receive £1,200; only some disabled people will receive £1,200, and only those who receive other benefits like pension credit and universal credit. I received a one-off payment of £150 and my parents will get the same £400 that is paid to all households in the UK.

Nearly all disabled people will tell you that it’s a constant fight to be recognised, to stay safe and well. The cost of living crisis has exacerbated the financial struggles many people are already experiencing, but disabled people have been struggling against the very systems supposed to support us for countless years now.

My own story is that of a closing window of opportunity to keep me alive, and of the medical politics at a London teaching hospital, which would have let me die had my parents not begged other hospitals to save me while there was still time. One of the amazing consultants who did save me asked: “Have they forgotten there’s a child in the middle of all this?”

In my final year at primary school, my request to have a school trip I could actually participate in, rather than the traditional outdoor activities trip, led to hate mail and accusations from parents of “compromising children’s human rights and the future of physical education classes”. I didn’t attend secondary school.

I hate the changes I see around me regarding the devaluation of human life. I saw first-hand during the pandemic how minority groups and vulnerable people’s lives are seen as dispensable. The cost of living crisis can only worsen the existing inadequacies in support systems as more people’s mental and physical health breaks down.

I know there are many other people in far worse situations than mine and it’s heartbreaking. But I still believe in the power of words to make some sense of the world, and effect change. I am alive; I shouldn’t be. I’ve had many close calls but they’ve not all been caused by my illness. And I still have a lot to say.

Karis Williamson is a 24-year-old poet and scriptwriter living in Inverness

• Do you have an opinion on the issues raised in this article? If you would like to submit a response of up to 300 words by email to be considered for publication in our letters section, please click here.