Being Disabled – Why the D Word Matters

My maternal grandmother was a bold, stubborn, hilarious woman. She loved her family passionately and voiced her opinions loudly; we miss her very much.

About 16 years ago, my beloved auntie became very unwell with TB. She was hospitalised and spent months convalescing. I was close to both my nan and my aunt (they lived together); I saw them often and spoke to them every day. During this time, I noticed Nanny doing something that struck me as odd. When referring to my aunt’s illness, she called it ‘a chest infection’ or ‘(auntie’s) bad chest’. The first time I noticed it we were sitting in their kitchen; I glanced at my aunt and she threw me a look that said ‘I know, it’s a thing she’s doing. We’ll talk later.’ {A brief aside – my aunt was also a dear friend and confidant to me; we didn’t need words to communicate entire moods or sentiments, we could do so with the most fleeting of looks when necessary. The same is true of my best friend. Truly kindred spirits don’t come along too often, so love them while you have them.}

After chatting about it later, my aunt and I came to the conclusion that the stigma that surrounded TB when my Nan was growing up in Dublin, and indeed here in the East End of London when she brought her family over, was something that my Nan stilled carried with her. I don’t know if she was aware that she was avoiding the name of the illness or if she ever used it’s proper name out of my hearing. But I remain sure to this day that in my Nan’s mind, the stigma that was attached to that particular illness during her formative years lingered on.

{If you’d like to know more about TB here in London, including long-standing stigma surrounding it due to it’s connections to poverty and migration, this report from the Health Committee at The London Assembly is 5 years old but very interesting. If you’re a Londoner with little ones, make sure they’re vaccinated; it should be offered when they’re babies but this may vary between boroughs.}

My thoughts have wandered back to my Nan and the ‘chest infection’ several times in the last couple of years. It dawned on me that I was unconsciously avoiding the most applicable language to describe my own situation because of the stigma and prejudices (my own as well as those that exist in society) that come along with it. I’m talking in particular about referring to myself as disabled. When I reached the stage of identifying what kind of wheelchair I’d need going forward and test driving different models, the ludicrous nature of my linguistic choices suddenly struck me. I am disabled and have been so for a very, very long time. Why was I avoiding using the D word?

I spent decades minimising or downright denying the impact that my neurological symptoms were having on my ability to function. I was determined to go away to university, get my teaching qualification, get my qualified teacher status, get my MA. I managed these things but they came at a cost, especially the decade I spent teaching. Wherever possible I would hide how much pain I was in, injecting myself with meds between lessons, slipping my heels off when the pain started making me dizzy & nauseous, wearing shades when daylight felt like it was searing through my brain – doing whatever I could to put off by a few hours the inevitable collapse into agony and vomiting in my darkened bedroom. Pretending to be ‘normal’ over such a long period of time eventually made me feel ashamed of my illness; every day that I couldn’t stand up, much less go to work, was another failure.

Ten years into my career, when I was establishing myself in my first senior role, my condition worsened. SLT meetings at the end of a busy day were a test of my endurance; it took so much energy to mask how much I was struggling in that small group setting whilst advocating for the improvements to alternative provision that were needed (I was responsible for SEN provision across the school and was the ‘designated person’ who dealt with day to day Child Protection issues & protocols). It was fulfilling but also frustrating. I was able to implement significant changes in my areas of responsibility in a short space of time and there was so much more I needed to do there…

But my neurological symptoms became more and more severe. There was no longer any denying it – as much as I loved my job, I just couldn’t do it any more. Looking back, I wish I’d accepted this reality BEFORE I was physically and emotionally on my knees. It took me a good couple of years to make peace with the loss of my career. By that time, the Chiari and Intracranial Hypertension had been diagnosed and I was facing brain surgeries (links if you’re interested – My VP Shunt , Decompression Surgery).

In the back of my mind, describing myself as disabled had become synonymous with admitting to a failure. This makes no logical sense, of course. I didn’t choose to have a brain that’s trying to stage a prison break from my skull. Medical conditions aren’t character defects. The fact that teaching had always felt like a vocation to me rather than merely a job didn’t help in this regard. My work was a big part of how I defined myself; losing that was painful and bewildering. It took time to realise that I still had value without it.

Likewise, it took time to see that being disabled and acknowledging myself as such wasn’t a sign of failure but actually acceptance of my reality. I can’t do a lot of things that abled people take for granted and my life will never be the same as theirs. Using the appropriate language to describe myself is an indicator that I’m no longer hiding. When I say I’m disabled, I’m saying more than that; I’m declaring that I am no longer ashamed of who I am.

How other people use and respond to the D word…that’s a whole other thing that I’ll dive into in a separate post.

If you’re disabled, when did you start using the d-word? Are there other words or phrases that you prefer?

Kindra x

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