Yo have a severe form of life-limiting muscular dystrophy; my condition is progressive. My parents’ house, where I live, contains a lot of medical equipment that keeps me alive and in the community, saving the NHS hundreds of pounds a night and keeping a free bed for those in need. It goes without saying that all of this equipment requires power, and this costs a lot of money right now.

Keeping me out of the hospital means ensuring that a lot of medical equipment is continuously charged. I use two ventilators, two ventilator batteries, an electric chair battery, a gastrostomy feeding pump, two suction pumps, an electric bed, an electric hoist, a cough assist machine, a microphone amplifier, and monitors for control my breathing when no one is in the room. I also need three hot water bottles day and night, to keep me warm in my electric chair and in my bed. That is the baseline; Also, when I am sick or tired, I have to use an oxygen concentrator, a nebulizer, and satellite machines. He wouldn’t be able to survive without the above equipment.

Activists suggested that the government introduce a policy called the “social tariff”, whereby a low-income household would receive a significant discount on energy bills, financed by taxes or by spreading the cost of the subsidy among more affluent bill payers. Not that I want a free ride, but the benefits of such a policy outweigh the costs, since my admission to a high dependency ward 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, as well as the lighting, as well as running the equipment upstairs. 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 for 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 receiving other benefits such as pension credit and universal credit. I received a one-time payment of £150 and my parents will receive the same £400 that is paid to all households in the UK.

Almost every disabled person will tell you that it is a constant struggle to be recognized, to stay safe and well. The cost of living crisis has exacerbated the financial struggles many people are already experiencing, but people with disabilities have been fighting the very systems that are supposed to support us for countless years.

My own story is one of a window of opportunity closing to keep me alive, and of medical policy at a London teaching hospital that would have left me to die if my parents hadn’t begged other hospitals to save me while I was still alive. time. One of the amazing consultants who saved me asked, “Have you forgotten that there is a child in the middle of all this?”

In my last year in elementary school, my request to have a school trip that I could participate in, instead of the traditional outdoor activity trip, led to hate mail and accusations from parents of “compromising the rights of children”. Human rights of children and the future of physical education classes. ”. I did not attend high school.

I hate the changes I see around me regarding the devaluation of human life. I saw firsthand during the pandemic how minority groups and the lives of vulnerable people are considered expendable. The cost-of-living crisis can only worsen existing gaps in support systems as more people’s physical and mental health deteriorate.

I know there are many other people in much worse situations than me and it is heartbreaking. But I still believe in the power of words to make sense of the world and effect change. I am alive; It shouldn’t be. I’ve had a lot of close calls, but not all of them have been 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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