Fighting the Care Tax

Reading Time: 7 minutes

Kiana Kalantar-Hormozi is a talented filmmaker from Glasgow who suffers from Type 2 Spinal Muscular Atrophy. Due to the Care Tax, she’s effectively double taxed by the state for her disability. Through the medium of hip hop, her film ‘Tax On Me’ explains exactly how it affects her in her day-to-day life. We spoke to her about how socialists can get involved and campaign against this unfair and dehumanising tax…

First of all, what is the care tax?

The care tax is a charge on social care for people with disabilities who need support. The term ‘social care’ refers to a lot of things so really it’s personal care. If you need help getting up in the morning, going to the bathroom or getting a shower, that’s still social care. If you need assistance to get out of the house or to get to work, that’s social care. So what happens is the council assesses people based on number of hours and then from that they say ‘if you’re an adult using social care services, you need to contribute to your care’. They’re called contribution charges. It’s a double taxation on what we already pay for through our taxes.

How has that affected you personally?

I’m not the worst affected by it and I’m very lucky. But for me, it was something like £100 a month and that was when I was on a student loan and bursary. So, like every other student, I was allocated what I was entitled to but from that I had to pay £100 a month. That can be anything from ten taxi journeys – things I need a lot for my disability. My wheelchair is not from the NHS – it’s charity funded and I pay for maintenance. If I need to pay for a battery, that’s £500. So, it affects me in different ways. That’s £1200 a year on top of what I have to pay. Like everyone else, I want to use my own money how I want to use it. If I want to buy a book or see friends, I want the right do that.

When did you first get the idea to make this film?

It’s a long story. It started when I was doing a Content Development course at Stirling University while I was studying Film & Media. I didn’t know there were a lot of other people suffering from the same issue. For some reason, I was totally naïve to it. I did a bit of research and found out about Scotland Against the Care Tax, which is the organisation that’s fighting against it. I read about Jeff Adamson, who had been charged something like £600 a month from his pension. That’s unacceptable by any standards – even Conservatives, I hope, would say that’s ridiculous.

So I found out there were other people and a whole organisation fighting it. I did some research and spoke to Jeff on the phone. I then really wanted to make something but I didn’t know what. The care tax is such a complicated thing. First of all, there’s a lot of figures and facts and all that kind of dry statistical stuff that other people don’t find that interesting. But then there’s the issue that we’re not used to the idea of support for our disability for independent living. So trying to tell people it’s wrong to charge people for that is difficult when you don’t have the whole independent living thing in your head. I left it for a while and graduated from my course in Stirling and went to do my Masters in Edinburgh. When I was almost finishing my Masters, I was paired up with an industry mentor called Louise Scott from Media Co-Op [an ethical media production company]. I spoke to her about the issues I was having because of my disability and we spoke about the care tax. They were outraged by it and interested in making a campaign film and seeing what we could do. When I graduated, they offered me an internship and I had the opportunity to make my film and campaign, which was amazing. It was a chance to actually make the difference.

Why did you choose hip hop a format?

I spent a lot of time in development trying to think how on earth I could make a short film for social media that would capture people’s attention when we have such a complex and ‘unsexy’ issue. Facts and figures don’t sell. So I thought, ‘how do I make this fun? What do I enjoy watching on social media?’ At the end of the day, we’re all flawed humans who have to be drawn into things by our emotions and not by logic (to start off with). Once people are drawn in, you can try and appeal to their sense of justice. I thought hip hop was the perfect medium because it’s punchy. I didn’t want to make something that was in any way patronising, which happens often with disability issues and that’s just not me. I wanted to make the film fun in a sense, even though it was a serious topic. Also, hip hop is a nice way to condense things and still give you enough of a word count to tell a story.

I started listening to hip hop. My friend introduced me to a rapper called Dessa. I think she’s my favourite of all. I’ve always been drawn to the genre, but doing a lot of classical music and musical theatre meant I never felt like I had the ‘street cred’. It got to the point where I thought, ‘Why not just try it?’ I think Dessa inspired me because she’s not stereotypical. That’s not a dig – I chose hip hop because it embraces diversity. Her lyrics are original and she studies philosophy and stuff. That inspired me. So I started writing stuff. I love writing but this was a new way of writing. I just tried to condense it all. I showed Bigg Taj [the Glasgow beatboxer] and he didn’t try to push me in a certain direction. He wasn’t really prescriptive about doing this or that. He said the most important thing is the message. As long as you have the message, that’s what matters. As an artist you want to find your own voice.


How did you fund the film?

I spoke to them and other charities that supported them so around 30 in total funded the film. When I pitched to people, they were all really supportive.

What sparked the idea for the introductory vox pops?

I like to turn things upside down in a way. I like to challenge perceptions. If you say to someone, ‘how would you feel if you were taxed to go to the toilet?’ They’d be like, ‘What the hell?’ If you say you’re being charged due to a care tax and it’s an awful thing, people just don’t understand it as they haven’t lived it. So I thought, let’s introduce the idea without mentioning disability or the Care Tax and to see how people would react to it.

What can readers do that is practically helpful to a campaign like this?

This film is a call to action as well. I would encourage people to write to their MSPs and make them understand that it’s such a big issue and that no one should stand for it. If you just leave disability campaigners to deal with it, it’s not going to get sorted because it’s a human rights issue. We need everyone to get involved and to write and say it’s wrong. The other thing is we’d like the film to go viral. We live in an era of social media and it can be a very powerful tool. So I’d like to see people use it for the greater good. Share it and tell your friends to share it.

What other projects are you working on?

I’m working on potentially one of the most important projects of my life. My disability is Spinal Muscular Atrophy Type 2. Recently, over Christmas the FDA approved a treatment for my disability that is insanely effective. It’s saved a lot of lives for kids with SMA Type 1 who would normally die before the age of 2. For people like me, I don’t want to be overly optimistic but it could make me me independent. If I was ever able to walk, it would take a lot of time to get to that because of exercise, physio and so on because I’d have to strengthen my muscles, but it would change my entire life. It’s not been approved in the UK yet and there’s a big fight to get that approved. There are a lot of families who have gone to France just to get it for their kids. They don’t have time for the people higher up to approve it because it’s really severe. Even for type 2, it can be urgent. One of my friends who was type 2 passed away a few weeks ago and that treatment could have saved him. Even for people like me it’s urgent in a sense.

So the film we’re making is a three part documentary. Each part is 30 minutes. At the moment I’m working on part one, which is I suppose my life pre-treatment and us trying to fight to get access to it. It’s a documentary because we want to give insight into what life is actually like. I’m looking to do shorter films as well for social media, but I really want people to understand what life is like and so documentaries are best. We’re making the film independently, but we are looking at potentially co-producing with the right person but there’s budget issues. We’ve tried to get funding, but it’s not worked out yet.

Have you any interest in doing more hip hop?

I’m planning on releasing a hip hop EP under the name Lady Kirahna! I like the idea of using a beatboxer rather than beats, but I do need to learn more about hip hop.  


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