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The Pandemic Made my Industry Accessible, I’m Worried About Going “Back To Normal”

Back when I was legally blind instead of totally blind, I was lured in by covers just as everybody else was. If I spotted a brown boy on the cover, I’d eagerly pick up the book, wishing to read different perspectives and experiences, and even injustices. I knew a lot about my own injustices as a gay blind man, but I was very ignorant of thesystem’s ways of stomping on POC every chance it got.

My naivety didn’t just extend to my friend’s experiences of being people of colour. I assumed that, by in large, the publishing industry would welcome me with, at least, semi open arms. After all, I was writing diverse fiction featuring blind characters and characters that were unapologetically gay, and LGBTQ+ books were selling really well. We Are the Ants, Boy Meets Boy, and, of course, the classic. Simon vs. the Homo Sapiens Agenda.

LGBTQ+ books were selling. So, editors and otherwise would welcome my disability fiction, I thought. I learned very quickly that the publishing industry only wanted a certain kind of stories. Specific disability narratives that fell into a traditional erasure plot or, worse, disabilities as a token interest.

What was even more sobering was how the industry at large pushed me away with their actions while their words said something totally different.

Hosting reading events in venues with lots of steps. Claiming that hosting a virtual author panel rather than an in-person panel would be extremely taxing on their technicians. Plus, readers hate virtual events anyway. Not detailing the thousands of ways writers’ retreats would, proudly, remain inaccessible to me and so many others.

These are just some small things the industry does to push us away in the hopes that we will give up and suddenly stop trying to be included.

The slights and excuses wouldn’t stop. The inaccessibility just kept growing, not shrinking. At a local literary event in Chicago, for example, I couldn’t bring my deaf friend along to watch me perform because the coordinator wouldn’t hire a sign language interpreter. I couldn’t pay for it at all, so I had to be very selective on who I invited to my live literary performances.

Even though the industry tried extremely hard to keep me and others like me out of the way, a pandemic erupted in 2020 that would force people to take events virtual. While there are some major accessibility concerns with tools and platforms used, by and large, a gigantic barrier had been shoved aside by Covid-19.

The silver lining was exceedingly small, though. My days transformed from hopeful beacons of productive writing time to anxiously fretting as the body counts rose in the United States and globally.

Publishers, though, didn’t have any more excuses. They had to have virtual job positions. Literary events had to be virtual. Writers conferences finally didn’t take place in inaccessible hotels. 

Finally, I could participate.

While others are eagerly awaiting the vaccine to reach them, I can’t stop thinking about how the world will go back to normal once the virus goes away. When the world goes back to the way it was, this will give the publishing industry even more chances to be the gatekeepers they’ve always wanted to become.

Event organisers will use the vanishing of the virus, I fear, as an excuse to not host virtual events unless absolutely necessary. I’m even willing to bet many will do it in the name of nostalgia, while casually uttering, “There’s no event like an in-person event!”

I hope things stay as they are – remote, and accessible to all regardless of geographic location. I’m dreading the day non-disabled people will go back to their normal lives because that will leave me, and so many like me, shut out to a greater degree than before.

I can’t deny Covid-19 is a tragedy. I also can’t deny the kick in the teeth it dished out to a subset of ableism in the publishing industry and the world.

Sure, we still have a long way to go, but the pandemic has proven that our system is deeply broken and can in fact change to make lives easier with very minimal effort.


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all Essays opinion

How Lockdown Helped Me Reclaim Activism As a Disabled Person

Tw: prison, prison cruelty, corporal punishment, police brutality, murder, eating disorders and mention of the Sarah Everard case.

I love learning about the Suffragettes. About how the name was originally meant to be an insult to them and they took ownership of it. About how their actions lead to my right to vote. About their ownership of green, purple and white. And I can’t thank them enough.

I even try to educate myself about the not so nice bits. Death and destruction. Poor Emily Wilding Davison under the King’s horse. And Holloway prison. Awful conditions. Hunger strikes and force feeding. And I shudder.

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all opinion

As a Type One Diabetic, I Struggled with Whether I Was “Disabled Enough”

My relationship with disability is complicated. Type one diabetes is an invisible illness, but most days, I don’t consider myself to be “ill.” I’m incredibly privileged in that the NHS allows me free access to insulin, the Omnipod Dash insulin pump and the Freestyle Libre flash glucose monitoring system. I live a relatively “normal” life, and as a result, I haven’t always felt comfortable using the label “disabled”: but was this the product of societal perceptions of disability?

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all disabled and sexual features opinion

Disabled and Sexual: How Internalised Ableism Gave me Sexual Imposter Syndrome

Disabled and Sexual is a new monthly(-ish) column by Hannah Shewan Stevens which will explore all the challenges, comedy, and fun that disabled people experience as sexual beings, even while we are desexualised by a predominantly non-disabled society.


In daily life, the words ‘I am an imposter’ play on an interminable loop in my head. Most of the time, I shrug them off and dive back into whatever I’m doing, but when those words pop up during sex they are much harder to ward off.

Those words are also the reason you’re reading my second column a lot later than I intended. The original theme of this month’s column was very different and although you will still read it in June, these words just had to come first.

Every time I sat down to write, I felt like the word ‘imposter’ was emblazoned across my forehead.

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We Need Accessibility This Mental Health Awareness Week, not Pretty Speeches

Trigger warning: this article mentions suicidal thoughts and suicide, in particular the deaths by suicide of Robin Williams and Caroline Flack.


The moment I opened my Twitter feed on Monday morning, I was greeted by the hashtag I’d secretly been dreading: #MentalHealthAwarenessWeek.

This isn’t because I’m against raising awareness, quite the opposite, but I emphatically dislike the way in which lip service is paid to mental health rather than genuine support. Most of the people I see on my socials share the same disillusionment. We’re tired of being told to reach out when in need, that everyone understands, only to be met with indifference when we act on this.

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I’m Struggling Through my Latest Lupus Relapse – and That’s Okay to Admit

Today is World Lupus Day, on this day I usually spread awareness and my own story but this year it feels different. After mostly being in remission and only getting the occasional flare for the past six years, my Lupus is relapsing and I’m feeling the affects much worse than I had.

This year I’ve been diagnosed for exactly half of my life, and as many with chronic illnesses, I was ill for a long time before that. I don’t remember my life before Lupus. That being said I was only 16 when I diagnosed with Lupus, meaning that it was an unbelievable life change for me and made life massively restricting for me. So understandably I struggled to accept the limits of my body and pushed myself far too hard.

My late teens and early 20s were spent passing out drunk from not accepting that I couldn’t drink as much as my peers, this happened at least 3 times a year. It’s actually quite shameful to think back on it now. I also worked myself far too hard and then gave up and failed a lot because I was afraid to ask for help and looking like I couldn’t cope.

I held a lot of deep rooted ableism and was determined to overcome my illness. I didn’t realise that disability is a long game and it can’t be beaten.

The way I always describe Lupus to people who don’t know is “my immune system can’t tell what it should be fighting so attacks everything in my body. Basically my body hates me” I laugh when I say this but it’s true.

There’s no part of me that hasn’t been affected. Hair loss, eyesight, skin rashes, mouth, nose and throat ulcers, arthritis in my wrists, hands, feet, ankles and knees, osteoporosis in hips, migraines, fatigue, sickness, bloating, UTIs, kidney and liver problems. There’s also light sensitivity, fainting if I get too hot, brain fog, heart murmur, risk of blood clots and mini strokes.

It took a lot but in recent years I’ve come to terms with my illnesses and disabilities and I’m grateful to have a platform that also empowers others to do the same. That’s why it’s harder to admit that I’m struggling to accept my illness again.

In February, after 18 months of medical menopause, I had a bilateral oophorectomy (both ovaries removed) to go with my hysterectomy in 2017. I almost instantly went into full menopause and this unfortunately triggered a Lupus relapse.

After getting used to how my life was with Lupus and building my life around that, it’s been galling to have to adapt it even further.

I was used to regular aches and pains but now everything hurts. I’m starting to use my cane more again, and while I’m not ashamed of being a cane user it makes my disability very visible to others and I see a change in how they treat me. I become someone they need to treat with kid gloves.

I know this image is mostly in my head and my cane means freedom, but the pain is the exact opposite.

I already work from bed a lot of the time because working from my desk is too exhausting, but now I find it almost impossible to work without a nap. The fatigue is the hardest part, it’s all encompassing and stops me from doing everything.

The most upsetting part was when I started losing my hair again, my hair is a big part of my identity so to be losing it was devastating. Up until last week I had long ginger and red hair down past my boobs, but I made the decision to get it cut up to my collar bone. I feel more like myself with it like this and I also don’t have to see such long strands of hair coming out.

The main difference is now though that I’m older and (mostly) wiser, I know my limits and I’m not ashamed to admit when I need help or afraid to say I need a break. I’m lucky to work from home and work for myself, which means I can set my own hours and only work when I need to. However it also means I’m in charge of taking time off which any freelancer will know is easier said than done.

As a disability activist, journalist and of course editor of this lovely place, it’s difficult to be wrestling with my own negative feelings around my worsening illness, but I know it’s not something I have to work through alone.

To be honest, having Lupus is sh*t and I hate it, but I can’t change that. I don’t have to be positive while my own body is trying to kill me and I shouldn’t be expected to.


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How my Chinese heritage made me feel ashamed about being disabled

Disability and mental health; these two concepts stimulate a huge amount of taboo within the Chinese culture. Growing up, these were rarely discussed and on the rare occasion that my parents or other adults did mention them, it was always with a negative undertone and conveyed the message that these individuals were somehow weaker and less deserving.

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all Essays opinion Pain chronicles

Pain Chronicles: Rosie Jones and Straddling the Intersection

Pain Chronicles is a new monthly(-ish) column from Caroline McDonagh-Delves about coming to terms with living with a chronic illness. It will include funny stories and brutal honesty, with some thrown in chats with her mum Shaz, and other friends too, along the way.

Rosie Jones and I have a few things in common. We’re both Northern. We’re both pricks. We both have gigantic tits. And we’re both disabled lesbians.

And when I saw her walk on to the set of The Russell Howard Show and said she couldn’t process those ideas, she could only fit one “different” thing in her life, and therefore she believed she wasn’t gay, I understood where she was coming from. Sort of.

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Do You Think Attitudes to Epilepsy Have Changed? Well, Maybe.

Trigger Warnings: Discriminatory attitudes to disability, discussion of asylum treatment methods, discussion of mental health, historic offensive language describing seizures

Author’s note: Some of the language used is now considered to be offensive, similarly they mention historical treatments which are also considered offensive and awful now. The language used is quoting what is used in the video – and it is important to use these quotes fully. 

It was ‘Epilepsy Awareness Day’ or ‘Purple Day’ on 26th March, where people wear purple to raise awareness about the realities of epilepsy. During the promotional build-up, UK-based charity ‘Epilepsy Action’ tweeted a video from 1957 highlighting historic attitudes to epilepsy. They asked, “Do you think attitudes have changed?” As I watched the video with horror and sadness at the stigma people lived with, my initial reaction was a resounding, YES.

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all Essays opinion

Mask Exempt Disabled People Have the Right to Shop in Peace

Almost 25% of the British population are disabled, not every disabled person is required to shield, or may be mask exempt, but myself and millions of others are. So we should be entitled to exercise that right without fear of repercussions.

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