The Debt of Disability

I owe everyone.

Photo credit: kc pierce, CC BY 2.0.

I owe the British government that was in power from 1997–2010.

One day in 1998, I took a train home from university because I was exhausted, everything ached, and I couldn’t stop crying. I thought I’d just lie on the sofa for a few days and then be back to normal. Instead I was diagnosed with depression and ME/CFS, a neurological condition that causes symptoms including extreme fatigue, pain, and digestive issues I’d rather not describe in detail on the internet.

I dropped out of university and in exchange for a long form and an interview with a doctor every couple of years, the government gave me something to live on for more than a decade. It wasn’t much, and if I hadn’t been able to live with my mum, it wouldn’t have been enough. But it allowed me to rest and take care of myself without wondering where my next penny was coming from. Back then, I thought that would be an option whenever I needed it. Now I see how lucky I was to get ill when I did and not years later.

I owe the Student Loans Company.

I’m not sure how much, exactly. I shredded my most recent statement to prevent both identity fraud and hyperventilation but I think it’s just over £15,000 ($18,792). I know: that’s tiny compared to U.S. college loans. But I don’t have a degree. This is just what it cost me to start university and then drop out. Twice. (I went back for a few weeks in 2009, when I thought that I had a realistic understanding of what my body was capable of and that the university would support me to succeed, neither of which turned out to be true.) The good news is, I’ve never earned enough for repayments to kick in. In 27 short years, when I’m 65, whatever I still owe them will be forgiven.

I owe disability rights activists.

Since 2010, the British government has pushed through the most brutal series of welfare cuts in living memory, cutting funding for essential services while offering tax breaks to the wealthy. Between December 2011 and February 2014, according to the government’s own figures, 2,380 disabled people died after they were found “fit for work” by a government contractor and had their only source of income taken away. They died of heart attacks, suicide, and starvation.

I know what it’s like to sit across from a doctor, stomach lurching as you try to convince them you’re genuinely ill; your quality of life dependent on them believing you. I know what it’s like to come out of that room and feel worthless, having spent an hour explaining everything you can’t do, all the ways your life didn’t turn out how you planned. But I don’t know what it’s like to not be able to afford a prescription, to go without meals, or to huddle round a candle for warmth, your life in the balance.

Disability activists have campaigned against the cuts, including some of the worst affected. They went to protests in wheelchairs and on crutches and when they felt crappy. They wrote letters to newspapers about their fear of being left with nothing. And they argued on behalf of me and millions of others that disabled people should be treated with respect. I didn’t join in, partly because it sounded exhausting. But mostly because I didn’t have to. I haven’t been desperate enough (yet).

I owe my credit card company.

My balance is £8,140 ($10,193), which is more than I made last year. And the year before that. I pay the minimum every month, usually more, but the total never seems to get much smaller.

In 2011, I sat across from a disability assessment doctor who nodded as I explained my symptoms and how they restrict my quality of life, tapping my answers into her computer with two fingers. A couple of weeks later I found out I’d been assessed as “fit for work.” Which I am, to some extent: I can write from home, in my pajamas, for a few hours a week. Ten is enough, twenty leaves me anxious and aching; forty would kill me. I lose days to migraines and weeks to chest infections, and some clients take ten months to pay me. I still need to buy groceries, clothes, and over-the-counter painkillers, so I fill the gaps with Visa.

I owe my parents.

In my early twenties, my dad gave me £2,000 ($2,496) that he’d invested in the stock market on my behalf. At first, I was frugal: some multivitamins here, a box of herbal teas there. But it was so much money to me, it felt like I could spend my way to recovery. Within a couple of years, I’d paid for acupuncture, fecal analysis, and a “manifesting” workshop in Florida where one woman was so successful she had an orgasm live on stage (hands-free).

My dad paid £3,000 ($3,755) for me to live in a student studio apartment during my second attempt at university and another £3,000 to clear the credit card debt I built up after I left and before I applied for disability benefits again. The money he gave me for my birthday last month bought my phone; the money he gave me throughout the last year paid for therapy.

My mum has let me live with her rent-free for 19 years. She changes my bed, does my laundry and empties the dishwasher. When I first got ill and couldn’t stop crying, she sat with me at night and held my hand until I fell asleep. For years, she and my dad took me to doctors and specialists and therapeutic yoga and wrote in my birthday cards that it was really going to be my year this time, even though it never really was. There’s no way I could pay them back; I wouldn’t even know where to start. Thankfully they don’t seem to be keeping score.


Diane Shipley is a freelance writer based in the U.K. She enjoys U.S. television, photos of miniature dachshunds, and Twitter.