Glasgow-based director Kiana Kalantar-Hormozi is one of 10,000 people with disabilities in Scotland charged for what the government categorises as social care.
Her new campaign film, which addresses First Minister Nicola Sturgeon directly, is released today ahead of a staged protest outside the Scottish Parliament.
The government has committed to the extension of free personal care to all under-65s who need it regardless of condition by 1 April.
But Ms Kalantar-Hormozi, who suffers from spinal muscular atrophy, argues this change will not benefit her or others with similar conditions because the support she needs is defined as social care. She said: “I was so angry when I saw they were just extending what they call free personal care. I rushed this film out in response, but I made it because I’m not giving up and not taking no for an answer.
“Any support I need is personal – if I need help to go to the toilet or something, it’s all personal. I hire assistance and some might hire an agency, but that’s classed as social care. I have the right to be on a level playing field with others.”
Ms Kalantar-Hormozi moved to Scotland from her parents’ home of Iran at the age of five. Her condition means she struggles with basic movement, has only a third of average lung capacity and could die if breathing is restricted by her head falling forward. Since graduating from university, she has been charged thousands of pounds from benefit payments, but has refused to pay on principle. Last year, she directed and produced the hip hop protest film Tax On Me in which she called for an end to the charges by performing a rap.
The film was widely shared online and led to Scottish Labour MSP Johann Lamont lodging a motion in Parliament on the issue.
Ms Kalantar-Hormozi said: “People don’t realise there are attacks on care. We get more and more people on side when we publicise this. We’re not going stop fighting until we end the care tax because it’s a human rights violation and I don’t want to live in a Scotland that violates my rights.”
A Scottish Government spokesperson said: “We are delivering the extension of free personal care to under-65s from the start of April next year. That extension will mean every adult, regardless of their income or assets, is eligible to receive the personal care they require without charge.
“We have been working with our implementation group, which includes COSLA, local authorities and the care sector to understand the cost implications.”