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Stop Questioning Whether I’ll be a Good Mum Because I’m Disabled

I want to be a mother. It’s a simple premise, isn’t it? I want to hold my own baby in my arms with the man I love by my side and raise that child to be wild and free and curious (and a writer because both of its parents are writers therefore it just has to be that way).

I’m in a serious relationship with a man who shares the same faith as me, we’re planning marriage and we named our future children on our first date. All this should be in reach but I’m forced to question it. Why? Because I’m disabled. 

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How Pressure to Provide a ‘Resolution’ is Impacting Disabled Stories

I can see it non-disabled people’s eyes. The anticipation, the holding of breath, the waiting for a neat conclusion. When I talk about my life, when I describe recent difficulties or periods of pain or illness, they want a story in the traditional sense. They want resolution, a clear narrative arc, a sense of an at least partially happy ending. 

And I give it to them. I find the discomfort and messiness hard to articulate and I want to save them from it, even if I can do no such thing for myself. So, I wrap up things up tidily, perhaps with a comforting smile, and say ‘but things are much better’ or ‘everything is fine now.’

But that’s not my life. 

Chronic illnesses and pain don’t just end conveniently when we want them to. It doesn’t follow a three act structure with a beginning, middle and end, that is so important in Western storytelling. It comes round again and again, with peaks and troughs, improvements and flare-ups. Pain might be gone for weeks, months or even years but that doesn’t necessarily mean a chapter can be closed. 

Of course, all lives are singular and hard to encapsulate neatly but disabled lives and disabled bodies especially belie a narrow, potentially suffocating ideal of what a story looks like. 

As a writer, I know how powerful a clear narrative structure is and how difficult it can be to fit a disabled story into a non-disabled mould. In nature writing, which is where I began my writing journey, publishing has often leaned into the idea of the nature ‘cure’ which doesn’t speak to how I, and many other disabled people, experience nature. 

Sure, I love being in nature when I can be and find aspects of it both soothing and energising. It can help me feel better in some ways, particularly with my anxiety, but activities like hillwalking – which I love – can also make my physical pain worse. In short, it’s complicated and not a straightforward ‘cure’.

Writers like Josie George and Polly Atkin are writing about nature in fantastic, nuanced ways, showcasing how complex and moving writing which takes a different, winding and complicated shape can be. But there are still far too few disabled voices getting published in mainstream literature and I’ve got to wonder if this is partly due to the industry not knowing what to do with our stories or perceiving them as ‘unsellable’, alongside a lack of accessibility. 

This is a problem that goes beyond the writing world, forcing disabled narratives into obscurity and making it harder to tell everyday stories of our lives, with their joys, difficulties and challenges. 

The pre-existing shapes that stories are slotted into do us all a disservice. Whether we are disabled or non-disabled, readers or writers, the shapes of stories are important. Seeing similar patterns to our own, seeing similar experiences represented or finding something relatable in a story should be something that disabled people can do. 

We should be telling our own stories, in all their intricacy, complications and potential for discomfort. And for non-disabled people to never read or hear a disabled story forces us further into invisibility, giving ground to the idea that we don’t exist and therefore don’t need to be listened to or valued, or have our needs met. 

After attending an insightful recent workshop on disabled narratives with Charlotte Heather, founder of The Remote Body which runs writing workshops for disabled and chronically ill people, I was inspired to think further about what shape my story could have. 

Instead of an ‘arc’, I was encouraged to think of it as a circle, or a perforated line, or as a meandering river with tributaries breaking off it – to try out different ways of telling that reflect the way my pain goes up and down without a clear endpoint, and repeats itself cyclically. 

The possibilities are endless, and creatively rich. They’re not only important in terms of amplifying disabled voices, but they are interesting from a craft perspective and have so much to add.

So next time I talk about my pain or my body, I’ll try not to grin and bear it, and make my story fit into non-disabled patterns. 

I’ll try not to make other people comfortable when talking about my own discomfort. I’ll let it be the shape that it is; organic, changeable, hard to figure out. I won’t shut down possible futures by ascribing my own ending.

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Jada Pinkett Smith and ALL Disabled Black Women Deserve Respect

TW: this article features bullying of black disabled people and disabled people being told they would be better off dead.

By now the whole world has seen the clip of Will Smith slapping Chris Rock at the 2022 Oscars. Chris Rock made a “joke” about Jada Pinkett Smith’s hair loss by referencing the 1997 movie G.I. Jane starring Demi Moore. Demi famously rocked a buzz cut for the role, however, Jada’s haircut isn’t for a movie role.

Jada has alopecia which is an autoimmune disease that attacks your hair follicles, this causes hair loss. 

Many who deal with this disability have experienced different levels of hair loss. Jada came out in 2018 to announce that she was diagnosed with it and with the encouragement of her daughter Willow, she decided shaving her head would be better. 

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The 3am Whatsapper: Why I Wouldn’t be Where I am Without my Mum

Dear Tilly,

We are thrilled to inform you that ‘That Oxford Girl’ has been accepted as one of nine businesses on the Oxford Foundry’s Women’s Business Accelerator….

This was seriously cool. Aged ten, I’d made up my mind I wanted to study at Oxford Uni but the same year I became seriously ill and from that point onwards, hardly went to school. I was at a state school and told not to bother taking my GCSEs or applying to uni but held onto my goal and went on to be offered a place at Jesus College to read English. 

Whilst there I found out I’d been living with 13 years of undiagnosed active Tuberculosis. I commenced 18 months of life-saving chemotherapy treatment. When I graduated I launched ‘That Oxford Girl’; a powerful free platform increasing access, social mobility and diversity at Oxford Uni. 

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Living with Both Physical and Mental Chronic Illnesses Shouldn’t be a Case of “This or That”

Everyone experiences pain in some form at least once in their lives. To me – pain has become an intrinsic part of life as mental anguish blurs into physical throbbing. As a young, seemingly healthy woman, my pain has remained cloaked behind invisibility rooted in the intense emotional pendulum of my borderline personality disorder and the bone-crushing pressure of my thoracic outlet syndrome.

Having first experienced debilitating twinges of my physical disability at the age of 16 and then falling slowly but surely into the void of my mental health illness at age 20, I’ve had a decade to get used to one and six years to come terms with another.

Now, at nearly 26, what I face is less about the pain – both physical and mental- itself, and more about the guilt-ridden burden of feeling like I have to choose between which of my illnesses I allow myself to be vulnerable about. 

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Having a Chronic Illness Adds a Whole Other Layer of Mum Guilt

Being chronically ill is exhausting. Add some children into the mix and some (most) days I feel like I am trying to walk through mud, out of spoons before I’m even out of bed. I make bargains with myself all day long; juggling trying to be a good mum with trying to treat my body kindly and not beat myself up when I’m feeling beat up. 

I find that I am always pushing myself just enough to keep them happy, but not so much that I’m left hobbling about, necking painkillers like smarties and I am always trying to figure out how to reconcile the part of me that buys into empowered feminist narratives around self-love, self-care and taking time to heal, with the part of me that has two small people to keep alive.

Because ultimately my body might need to rest, but they don’t. 

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‘She’: Epilepsy, Mental Health, and Self-Detachment

TW: This article includes discussion of mental health, seizures, medical ableism and discussion of to eating disorders.

I recently sat down to write a poem for a competition entry. It was only when I re-read my work I realised in several stanzas, I referred to myself as ‘she.’ To my surprise, I changed them all to ‘I’ – but then, the poem didn’t feel right. So, I changed them back.

I’ve previously convinced myself that I’m nothing more than a consciousness. It’s usually when I’m in bed and have a chance to think. The more I think, the more life starts to unravel at the edges. The idea that individual souls are connected to individual bodies feels ridiculous, absurd.

The sensation mounts, and then something snaps. Sometimes, it feels like my actual bodily form is changing, until I half-believe that someone completely physically different is lying in my bed. 

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How Laryngitis Gave me a new Voice

T/W: Rape references and bullying, depression and anxiety, references to cancer,

Most of my family members are singers. All of them are naturally talented and since we’re Filipinos, karaoke is part of our family gatherings and events. That includes me, but that was before I developed chronic laryngitis due to my Gastroesophageal Reflux Disease (GERD), most commonly known as Hyperacidity. 

GERD runs in our family, and we always have antacids in our bags and we’re always dealing with upset stomachs. According to statistics, GERD is common, and 20% of people in the US have it. By 2010, the prevalence of GERD had risen from 2.5% to 8.5% in Eastern Asia.

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How Discrimination in STEM Changed My Life

Trigger Warning: workplace ableism and academic ableism, lack of legal protection for students against discrimination.

In December 2019, I was in my first year of university and had accepted an internship in a medical school lab. It was Thursday afternoon in February 2020 and I was walking to my introductory biology class and got a message from the Principal Investigator (PI).

I should come by his office after my immunology exam. Not sure why, I immediately started to worry. I tried to keep calm: he probably wants to discuss my new project. Why worry when there have been no problems? I walked up to his office cautiously. 

He told me to sit down. I obeyed, hearing in his tone that this meeting had been something to fear. He said other people in the lab had a problem with me. While I knew they didn’t particularly like me, I didn’t think they had actual grievances. I was flabbergasted. “What problems? What did I do?” I asked. 

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How People with ADHD are Being Failed in the Workplace

When it comes ADHD, I don’t think I’ve been as adversely affected as I have in the workplace. I’ve been denied promotions, bullied, treated differently and joked about as a result of it. It’s mortifying, wrong and I’ve had enough of it.

Coming out at work has always been a very difficult decision to make and can be scary. I worry about it being used against me or that colleagues will treat me differently if they know. But if I don’t tell my managers then I have to work harder to ‘mask’ my ADHD symptoms or find ways of working that make it easier for me.