In 2019, the Office for National Statistics reported that over three and a half million people aged between 16 and 34 had a health condition which was expected to last longer than 12 months. For some, that condition will last a lifetime. What is it like to be a young person with a chronic illness in the UK?
Both Tallulah Clark and Fred Finch have Ataxia, a rare neurological condition which affects a part of the brain called the cerebellum which is responsible for movement and coordination. Ataxia currently has no cure.
Tallulah, 22, blogs about dining and accessibility in Bristol while Fred, 31, writes guides to cooking and exercising with Ataxia. They each agreed to speak to Topex News about using their love of food to overcome the challenges of living with a disability.
People with Ataxia can have difficulty walking, sometimes requiring a wheelchair or a walking stick. In 2014, Fred broke his ankle after a fall and was laid up at home for six months. The recovery period took a toll on his mental health.
Fred said: “I had a bit of a depressed stage where I was felt my life is so rubbish. When I try to do something, I end up breaking my ankle. There’s just no point. I thought I need to have some motivation to do something.
“I started putting pictures of things that I had cooked on Facebook and people seemed to enjoy it. People just love food! Well, I love food so why not try and write a cookbook and see if anyone else actually enjoys it? And a few people did! That’s how it all came about, through wanting to do something, and enjoying cooking.”
Fred has now authored two cookbooks about his culinary adventures as ‘The Shaky Chef’ as well as an exercise guide for people with Ataxia.
Fred Said: “Everyone has their feelings of not being able to do anything well and worrying about all sorts of things. Exercise and cooking are definitely two positives for my mental health. They just make me feel better within myself.”
Like Fred, Tallulah is passionate about food. She runs a blog about dining and accessibility via her Instagram account ‘Come Dine with T’. Inspired by writers like Anthony Bourdain, Tallulah describes her food reviews as ‘travel and eating, times accessibility’. In each review, every eatery gets a rating out of ten for the quality of the food as well as a separate rating for the ease of accessibility.
Tallulah has also worked as an extra and as a model, hoping to project a positive body image for people who are disabled.
Tullulah said: “In the media you don’t really see people with disabilities. I’ve stopped watching Love Island for example. It’s not great for body image in general, but when you have a disability and you see perfect people walking around in high heels it’s worse.”
Ataxia’s impact on movement means that getting around is difficult for Tallulah, who uses a walking stick. She said: “I fall over pretty much every day, I sprain my ankles, broke my ankle once actually and I get huge bruises, it just affects everything.”
Fred experiences similar difficulties with movement and has faced stigma as a result. As his then-undiagnosed Ataxia developed in secondary school, he found it increasingly difficult to write by hand. Fred said: “I remember a teacher actually called me thick because I couldn’t write.”
Fred was eventually provided with a laptop, but this made him feel different and his grades suffered as a result, Fred said: “My exams took a bit of a hit. I didn’t want to do them because I didn’t want other people to see me being the only person sat in the exam hall doing it on a laptop while everyone else was just getting on with it, so I just rushed through all of them.”
Negative stereotypes about disability are common, as Tallulah said: “People have stared in the past, before I used a stick especially, people would stare and ask me questions like are you drunk? I used a stick once at a festival and a girl said to me; why are you even here if you’ve got a walking stick? Am I just meant to sit at home and not have fun then? People think it’s a compliment when they say to me: “Oh, but you don’t look disabled.” Is it meant to be a negative then if I do look disabled?”
Accessing financial support can also be a challenge. The UK government provides disabled people with a Personal Independence Payment (PIP), but only if they can prove their disability and its impact on their earning capacity.
Tallulah describes PIP as “the bane of my life.” She was already receiving PIP but applied for more help as her condition was deteriorating. Following a telephone interview, Tallulah received a letter informing her that her PIP was to be removed entirely.
Tallulah said: “It’s almost like the process is, you’re guilty until proven innocent, every question is a trick question, what I have got cannot get better, it can only get worse. It hasn’t miraculously got better, and I no longer need PIP, it’s scandalous.”
Tallulah decided to appeal, but before her view could be heard at tribunal the decision to remove her PIP was reversed.
Since being diagnosed with Ataxia 11 years ago, Fred has been able to build up a body of evidence to support his PIP claim but remembers the beginning of the process was extremely difficult.
Fred Said: “When it first started it was bad, it was a nightmare at the start, it was impossible to get any help. If I only just got diagnosed today and tried to apply for PIP now, I do not even know where I would start. You have to go through so much, you have to prove everything all the time.”
Accessing the job market can also be difficult, Fred says. “It’s very hard for disabled people in general to get jobs. When you’ve got a condition like Ataxia doing any sort of physical labour is out of the window.”
Tallulah works as an intern for a travel company which caters specifically to the needs of disabled people, she said: “The job market is difficult, it takes confidence to be able to go into a new environment and say I can’t do X, Y and Z. I don’t want people to make assumptions. I don’t want to be babied.”
Because of the daily challenges they face, both Tallulah and Fred are determined to be positive role models for young people with disabilities.
Alongside his books, Fred also has a YouTube channel where he uploads cooking videos. He said: “If you’re a little kid and you’ve got a disability and you see someone else who’s also got the same disability as you doing some cooking, you’re more likely to get involved in it. I was getting messages from all over the world from people saying: “I got your cookbook or I saw one of your videos and really enjoyed it, I feel like it’s something that I need to do.”
Tallulah wants to provide a voice for younger disabled people, especially those whose disability may not be immediately visible. She said: “There’s been a few younger people who have been diagnosed with Ataxia who have found me online and asked: “How do you deal with this?” or ”I’m about to get a walking stick, I’m so scared, how do you deal with it?” “I just feel like there needs to be that spokesperson.”
It is clear from speaking to Tallulah and Fred that there are numerous social, financial and emotional challenges for people suffering with chronic illness and disability in the UK. Nevertheless, they both use their passion for food to connect with and help other young disabled people who are faced with similar obstacles.
Tallulah and Fred both work with Ataxia UK to help raise awareness of the condition. More information about Ataxia can be found at: Ataxia – Supporting people with ataxia until a treatment or cure is found.