Accepting disability
Endometriosis and a painful hip condition have left me disabled. But why is that fact so hard to accept?
In this piece for The Flock, I explore how my gradual decline into disability has impacted my mental and physical well-being, as well as how ableism in society has impacted my self-worth.
There was a time in my life when I’d quite literally run around Soho in five-inch heels, dance till 5am, then be on my feet all the next day on a shop floor. No problem, no physical restrictions.
I was 20, in my final year of university and living a very able, very mobile, very ‘normal’ life. The weeks were punctuated with fluctuating pain from my then-undiagnosed endometriosis, but alcohol became a very effective pain reliever – for a few hours at least.
My best friend Gary and I were out most nights of the week in London, laughing till we cried, and making memories for life. Those memories are ones I really cherish now, because ever since those hectic, carefree nights out, my mobility has steadily declined.
Hip pain and incurable endometriosis – an inflammatory and incurable disease affecting 1 in 10 people with wombs (and some without) - has put paid to my fertility, mobility and ability, often leaving me bedbound, impacting my ability to walk, cook, sit, shower or sometimes even stand.
But that slow slide into full blown disability happened so gradually, so silently, I didn’t even realise that I was actually disabled until early 2020. Having to quantify just how difficult or impossible simply daily tasks had become for me during an arduous PIP assessment was soul-crushing and dehumanising. Even though I’d had a blue-badge for three years, I guess I’d hoped my status was temporary, or would improve enough to award me the life I’d once lived before.
So recognising and admitting to myself that I was disabled seriously knocked my feelings of self-worth. It made me question who I really was. Being disabled in adulthood made me feel less than.
How was it possible that the same girl who ran all the way from Tottenham Court road to Euston to catch a train in vertiginous heels had now become a woman, mother and wife so disabled and immobile, I couldn’t put my pajamas on or bend to the floor to pick up after my daughter?
I’ve been having therapy for months to come to terms with it all. That, alongside personal articles I’ve written for the press in my capacity as a journalist have made me see that actually, it’s societal ableism that has undermined my self-worth - not my disability.
I am still all the things I was before my illnesses took my freedom and independence from me. I am creative, driven, successful. I am brave, I am strong, I am loyal, I am honest. I am complex, I am flawed, I am human – in all the glorious and not-so-wondrous facets of that humanity. My disability hasn’t diminished any of these things. It has not stopped my husband loving me. It has not stopped my daughter feeling loved and nurtured. It has not stopped me making mistakes, learning from my experiences and striving to make better decisions.
It has however made my world smaller, socialising difficult, work more painful and my anxiety higher. But these are things mostly impacted by accessibility and the inevitable comparison merry-go-round of social media. Sometimes, it’s been about my finances. Statistics show the cost of living for a disabled person is over £500 higher a month than an able-bodied counterpart. Employment rates are lower, as are wages.
My pain makes me down tools some weeks, or months - impacting my earning power as a freelancer. It dents my pension and saving capacity. It dictates whether or not I am able to accept lucrative contracts. It limits how many hours I can work. It costs me thousands a year in private healthcare bills for physiotherapists, chiropractors, aqua therapy, talking therapy, medication and consults.
It costs me so much on so many levels, that it’s no wonder it took years for me to accept I was not just in chronic pain, but disabled too. Not just suffering transiently, but permanently changed and unable.
For years, I had pushed through all the pain and physical difficulty, working full-time in an office in central London, necking painkillers to keep up with able bodied colleagues who could work all day and party all night without fall-out.
But in trying to keep up with that able-bodied life, I further damaged my body and exacerbated my conditions. I wasn’t physically capable of keeping up in my mid 20s, but I was pushing through incredible pain and immobility to keep up appearances for society’s sake.
Through white hot pain and a limp in my leg, I commuted for four hours a day to work in an office that would later deny me flexible or part-time working unless I accepted a demotion. I ended up quitting the job I adored to protect my physical well-being. To reclaim my life. I wasn’t ready to leave but the company’s ableist work model had made me feel less than. Less worthy. A second-class citizen. I felt like I was being punished for something out of my control.
All around me, the societal message was abrasive, loud and clear. It told me repeatedly, if you are able-bodied, promotions are within reach, travelling is easy, accessible, cheap and the world really is your oyster. But I found trips abroad increasingly hard,and eventually gave up, sticking to weekend mini-breaks in the Cotswolds where we could park the car right outside our ground-floor suite, avoid stairs and order meals to our room.
What I should have done was used the wheelchair service in airports and stopped being judgemental and embarrassed about the confines of my own body, or worried about pitying or disbelieving looks from the public.
Perhaps some disabled readers and wheelchair users will think I’m part of the problem for ever feeling this way – this weird and unfair sense of shame about my status.
But I can’t help the ableist judgement and restrictions that exist like a mist around us, or how it makes me feel.
Every time I place the blue-badge on my dash and get out of my car, I worry someone is about to confront me and call me a liar because I am able to walk a few feet. They have no earthly understanding of all the physical limitations that mean I quality for this accessibility tool, but I still fear a confrontation every time.
There are so many things engrained in our society now that equates ‘normal’ to ‘able-bodied’ and these continue to make me feel like a failure. Work output, productivity and earnings being some of them. It’s only since writing about my disability publically that I’ve entered into a community of amazing, disabled creatives and realised, that actually, I am not the one that’s lacking here – it’s society and its able-bodied and mobility-tinted glasses.
Given that one in five adults in the U.K. lives in chronic pain, and there are 14.1 million disabled people in the U.K., ableism and the linked, diminished perception of the value of our disabled lives – take the quiet DNRs placed on disabled folk without consent – I bet I’m not alone in feeling this way.
I can only hope that as the pandemic continues to forcibly dismantle archaic, ableist work models like the 40-hour, city-centric, office-based jobs, and champion, facilitate and allow access to remote and part time working… people like me will begin to feel the full power of our innate worth.
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