Marvin's reality
I am an artist, a leader and a disabled person.
As an artist I look at identity and disability through my art. I work across multiple mediums - illustrations, sculptor, stained glass etc… and look at how art can influence policy and policy can influence art. As an artist I want to make an impact on how people think and engage with each other.
I have muscular dystrophy and have been getting social security for over 15 years. I need round the clock care, use a ventilator most of the day and an electric wheelchair to get around. In 2024 I transitioned to Universal Credit (UC) and that was a catalyst for all my problems. I have been naive for a long time about the transition to UC. I thought I would be safe because of how serious my condition is. I had an assessment when I moved to UC and was told I didn’t fit the higher bracket under UC for additional support because of my health, I appealed and won but it had a huge knock on affect for me. This happened at the same time my personal care was reviewed and I was told I didn’t qualify for 24 hour support.
I work part time and now I have to find £500 a month towards my care. I have been told that my carers should drive the van I need to travel around as they don’t want to pay for a conversion so I can drive. I try to live independently but in every corner the rug is being pulled.
Because of the assessments I am constantly in fear now. When I see a brown envelope think ‘oh no here we go again’. I am not sleeping. I am in fight or flight mode constantly. It is affecting my mental health. I am being penalised for being disabled and needing support.
They look through my bank statements and question all my spending. I get questioned for heating my home and the electric bills. Because of my disability I need to be warm, I have higher bills as I run a ventilator all day, I need to charge my wheelchair, I need the fridge to be on for my medications. I don’t know what is going to happen. I have to choose whether to eat, be warm or have medication. I fear being forced into a care home.
The system we have is unclear and doesn’t treat people as human. We need an independent review of the system, there needs to be accountability from one government to the next. We need social security that supports you if circumstances change. At some point we are all going to need support. If we don’t band together now then what? Even if you have savings they won’t last if you need care.