A letter from the editor of SICK, a magazine by disabled people

Olivia Spring writes a letter to rekto:verso. Read here the personal story behind a unique magazine.

I was 11 years old when I got sick. I went to bed one night as a healthy kid and woke up with a pain in my body that I would still feel 12 years later, as I write this on my sofa. This pain has been with me for so long I can’t remember what it feels like to not be sick. I can’t remember what it’s like to wake up without at least one symptom to remind me that this is who I am now - a sick woman whose pain and fatigue cannot be fully understood; a woman who is dismissed by doctors and left to endure a life in an unexplained body.

I am lucky in so many ways, and so privileged to have been able to move abroad and study for a degree in journalism. As I got older, however, I realised how difficult it would be to find a space for myself in a society that places so much value on being reliable, consistent, hardworking, and able-bodied. The thought of navigating employment never crossed my mind as a chronically ill girl just trying to make it through a school day.

My body is not reliable, and probably never will be.

When I was fired from my waitressing job for being ‘unreliable’ in my second year of university, I was scared that I would never work again. It didn’t matter if I wanted to be a part-time bartender or a full-time journalist, the word ‘reliable’ was always in the job ad. Was there no middle ground, no flexibility or empathy offered in the working world?

My body is not reliable, and probably never will be. It doesn’t give me a heads up when I’m going to be up all night with joint pain or suddenly unable to stand for more than a few minutes. But as a person, you can still rely on me to be honest, kind, and to do the best I can if I’m given the accommodations I need. I found myself in a space I call the ‘in-between’: I was able to do work, but on my own terms. Yet most jobs won’t consider someone who can’t do anything before noon, has no control over her symptoms, and therefore can’t meet deadlines or work to a set schedule.

Instead of trying to navigate around the limitations of illness, I wanted to occupy this space and make our existence heard.

With 15 million people in the UK living with chronic illness and disabled people making up 15% of the world’s population, I knew my experience wasn’t unique. According to Scope, disabled people are more than twice as likely to be unemployed compared to non-disabled people, and on average spend £570 more a month on living costs. And while disability and illness affect everyone differently, I knew there were other people in the ‘in-between’, too.

Instead of trying to navigate around the limitations of illness, I wanted to occupy this space and make our existence heard. I wanted to work, but in an environment where I didn’t feel guilty or get yelled at for needing a day off. I dreamt of others who felt the same joining me, all of us being unreliable and sick and supportive together. I wanted, so badly, to be the employer that offered all the things I desperately needed. This is why I decided to start SICK magazine.

I realised that is what SICK is all about - pursuing something that you otherwise wouldn’t have access to because of illness or disability.

SICK is a space for those who need one. We publish new, engaging work by chronically ill and disabled people. This includes a range of essays, features, interviews, poetry, and art from contributors located around the world. In our first two issues, we have featured work that discusses why disabled people are forced to drop out of school, living in silence and slowness, the challenges of being a disabled parent, the freedom of abandoning hope, and much more.

Since beginning work on SICK, I have dealt with major imposter syndrome. I wanted more time to gain experience working in publishing, writing, and editing before starting my own magazine - but the reality is that these jobs are not accessible to me, so I am trying to embrace the idea of learning as I go. I realised that is what SICK is all about - pursuing something that you otherwise wouldn’t have access to because of illness or disability. Now, two years after opening for our first submission window, I am so thankful for this ‘Do it Yourself’ route. I have learned about things I thought I would never quite understand, become friends with so many amazing disabled artists, and connected with wonderful booksellers, publishers, and more.

Disabled and chronically ill people such as myself have found that we are well-prepared for situations like lockdown, because we’re used to spending a lot of time in bed.

When the COVID-19 pandemic began to disrupt all of our lives and increase in severity, I wasn’t sure what this would mean for SICK. I had already begun working on issue 2 and wasn’t sure if I should push back the publication date, or embrace the idea of publishing a magazine by sick people as a virus rages across the globe. I decided to go ahead with publishing as planned, and one of the features that was commissioned pre-pandemic about living in isolation ended up being very timely.

Disabled and chronically ill people such as myself have found that we are well-prepared for situations like lockdown, because we’re used to spending a lot of time in bed, sleeping, resting, being bored and frustrated. A lot of us also live in unpredictable bodies, giving us more tools and experience than most to handle the uncertainty of the pandemic. I hope that able-bodied people look to disabled people as the pandemic continues, and learn from our creativity in making things accessible and inclusive.

SICK is not about forced productivity and working to meet schedules and deadlines. Instead, we work in and with our own slowness.

The disabled community has helped me a lot over the past several months as I found myself relocating back to the US and dealing with some tough personal challenges. I was determined to begin issue 3 in January, but I was struggling, feeling unmotivated, and simply trying to survive each day as it arrived. Rather than try and push myself into something that I clearly wasn’t ready for, I decided to postpone issue 3 until I felt ready, and to trust that that time would arrive. Reading from and speaking to other disabled people made me re-think vital questions about how I chose to operate SICK, and what I want the publication to stand for. This is more than just the work I chose to publish, but the frequency of production, the sale price, the type of printing, the promotion, and so much more.

SICK is not about forced productivity and working to meet schedules and deadlines. Instead, we work in and with our own slowness; we pause when we need to; we sleep when others rise; we check in with each other; we do not expect our bodies to be anything other than our bodies; we believe and listen to each other.

After giving myself the break I needed without judgement or expectation, I’m slowly getting issue 3 in the works. So far, through two issues and artist calendars, SICK has published the work of 49 sick and disabled writers, poets, and artists. Sitting with and reflecting on this abundance of work keeps me motivated and excited for what is yet to come in this little paper world.