How would you manage if you suddenly had to shell out an extra £583 a month on top of everything else you were already planning to spend this month? You’d hit that overdraft limit pretty fast right? And you'd at least hope that £583 was going towards something super fun.
For many disabled people around the country however, £583 is just the average extra amount they’re spending per month in order to live their day-to-day lives. And it’s not going on luxuries, it’s going on things that most of us just take for granted.
Welcome to the hidden cost of being disabled.
Shona Cobb, 21, has Marfan Syndrome, a connective tissue disorder. “Think of your connective tissue as the glue that holds you together. It affects things like the heart, eyes, joints, bones...” Shona particularly has problems with her spine, in part due to some postoperative complications. Because of this, she needs a powerchair to get around. “I walk inside my home and I use my powerchair when I’m outside.” She says. “Day to day I spend a lot of time lying down. I can’t really stand for too long, it’s difficult for more than 30 seconds.”
Her chair has helped her gain a sense of independence by giving her the ability to stay out of the house for longer periods of time. “It has a tilt function on it which helps my spine as it relieves pressure. It also fully reclines,” She explains. “It does other things that help me be independent, like the rise function that takes me up to standing height.”
But powerchairs are expensive, and Shona wasn’t eligible for one on the NHS. Had she been eligible, she says it is unlikely she would have got the right type of wheelchair to best suit her needs.
Her chair then cost £10,500 - which she had to fundraise herself. Insurance for the chair is about £150 a year and all upkeep is down to her. “It’s all my responsibility.” Shona says. “Things like wheels need regularly replacing. I have friends who have spent hundreds of pounds a year in upkeep.”
But the chair is just one part of Shona’s monthly expenses.
On Radio 4’s Money Box last month, Shona explained how much extra she'd had to spend during a recent trip to Leeds. Her friends were able to get the coach, but as Shona’s chair didn’t fit, she had to pay for the train which was three times the price. Her friends stayed overnight with people they knew but Shona had to pay for a hotel which could accommodate her needs. It was over £100. Back home, busses in her area are few and far between so Shona often has to rely on taxis but, due to the size of her chair, can only use black cabs which again, are more expensive.
And it doesn’t stop there. “Food is a big part of my extra costs.” She tells Refinery29. “When I am at home during the day for things like breakfast and lunch, I rely on convenient food. I need things that are easy to cook or don’t require cooking at all - stuff like sandwiches from the local shop or fruit and veg that are already cut up.” These things, are of course, far more expensive than buying the raw ingredients and making several meals as many of us do each day without thinking about it.
“It’s frustrating.” She says, but adds that it’s something she’s just got used to. “I don’t have hundreds of pounds missing on a day to day basis but I am often put in a situation of finding £30 for this and that." Currently living at home, she worries about moving out as she knows these extra costs will only grow.
These extra costs are felt all the more keenly due to the fact that Shona is currently unable to work. She wants to and is pleased to report that she thinks she’s getting to a place where she will be able to. However, she does worry that she’ll face employers who think that hiring her will lead to problems on their side.“I wouldn’t want them to see me as a problem. I think a lot of employers see disabled people as the problem they might have [rather than as the person].” She worries, for instance that employers will assume she’s going to have lots of hospital appointments during work time, or be off sick a lot.
But Shona, who of course knows her condition better than anyone else, knows that she won’t be off sick more than another worker. “I don’t have all of the needs that people assume I have.” She says potential bosses can often over assume what they’d need to make a disabled person’s employment possible but she says that; “[All I need is] just a little bit of understanding and leeway and have the opportunity to work remotely. That would help a lot of disabled people.”
Shona’s extra monthly costs usually exceed her PIP - personal independence payment - which is the government benefits scheme for people with disabilities or long-term illnesses. She luckily had a fairly straightforward time qualifying for PIP - when it was introduced in 2013, around one third of the people on the old Disability Living Allowance were denied PIP. “I have a lot of guilt about it as a disabled person because a lot of my friends have been unlucky but I had a fairly okay time, compared.” Shona also receives ESA - Employment and Support Allowance - benefits which are designed for people unable to work due to disabilities or illness.
Claiming ESA however, can lead to another set of problems as the benefits system is notoriously problematic when it comes to freelance payments - which as most people know can be deceptively large one month and non-existent the next. “I recently became a published author and I couldn’t accept payments for [my book]” Says Shona. “Even though there are rules [about one-off payments] when it comes to [ESA], there have been many horror stories about people having all of their benefits taken away because they worked a little bit.”
As frustrating as that sounds, she is not being overly cautious. On the same Money Box episode, welfare advisor Will Hadwen explained that this is a problem that many people face. “Unfortunately yes.” He said. “I’d never say that someone thinking about working shouldn’t worry about their benefits because there could be an impact.”
Because of this, Shona is unable to plan for the future. “Whilst I’m on benefits I am not able to save any money to plan, or save six months of a salary, that safety net. I am not able to do that." She would like to be a freelance writer and is already finding work - although she's not able to take any significant money for it. "So even though I have a career sitting and waiting, I just can’t access it.”
Shona is not hopeful that something which is such a deep rooted and widespread issue will be sorted out any time soon - especially considering the lack of funding many government schemes are currently facing. What she does wish for though, is an alleviation of the stigma she and her disabled friends face for receiving benefits.
“I think a lot of people think that disabled people have a lot of money.” She says. “For a lot of my friends who are on benefits [they have been led to feel that there is] this idea that your money is not your own.”
She continues that she feels like there is still a lot of unsolicited judgement about what people on PIP spend their money on and it's something that is of course, extremely upsetting. "It's like, in an ideal world you 'should' be spending it on this or on that, and you are not allowed to have a luxury every now and then."