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

I have a severe form of life-limiting muscular dystrophy; my condition is progressive. My parents' house where I live has a lot of medical equipment that keeps me alive and in the community, saving the NHS hundreds of pounds a night and keeping a bed free for those in need. Needless to say, all of this gear requires power - and it's costing a lot of money right now.

Keeping me from going to the hospital involves ensure that many medical equipment are continuously charged. I use two ventilators, two ventilator batteries, power chair battery, gastrostomy feed pump, two suction pumps, electric bed, electric hoist, cough assist device, amplifier microphone 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 electric chair and in my bed. This is the baseline; moreover, when I am sick or tired, I have to use an oxygen concentrator, a nebulizer and Sats machines. I could not survive without the above equipment.

Activists have suggested that the government introduce a policy called "social tariff", whereby a household at low-income benefit from a significant reduction on energy bills, financed by taxation or by spreading the cost of the subsidy among the better-off. It's not that I want a free trip, but the benefits of such a policy outweigh the costs, as my admission to a high dependency service would result in a much higher bill.

If there were nurses coming to my house, we would have to keep the central heating on 24 hours a day, plus the lighting, as well as running the above equipment. The cost would be phenomenal, probably 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'm not eligible. The UK government did not specify this in its statement when it said vulnerable households would receive £1,200; only certain 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 receive the same £400 which is paid to all households in the UK.

Almost all disabled people will will say that it's a constant fight to be recognized, to stay safe and sound. The cost of living crisis has exacerbated the financial hardship many people are already experiencing, but people with disabilities have been battling the very systems that are supposed to sustain us for countless years now.

My own story is one of a window of opportunity closing to keep me alive, and of the medical policy of a London University Hospital, which would have left me to die if my parents had not begged to other hospitals to save me while there was still time. One of the amazing consultants who saved me asked me, "Did they forget there's a kid in the middle of it all?"

When of my senior year in elementary school, my request to have a school trip that I could actually go on, rather than the traditional outdoor activity 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 go to high school.

I hate the changes I see around me regarding the devaluation of human life. I have seen with my own eyes during the pandemic how the lives of minority groups and vulnerable people are seen as pointless. The cost of living crisis can only compound existing inadequacies in support systems as more people's mental and physical health deteriorates.

I know there are many other people in much worse situations than mine and it is heartbreaking. But I still believe in the power of words to make sense of the world and bring about change. I am alive; I shouldn't be. I had a lot of close calls, but not all of them were caused by my illness. And I still have a lot to say.

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

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