Exploring my relationship with the word ‘disabled’

‘We don’t see you as disabled’. 

I once longed to hear these words, back when my young, impressionable mind was governed by internalised ableism. So when I piped up to reject the very notion I used to endorse, you bet my first thought was, I need to write a blog post about this.

The sentence was uttered in protest to a claim I made about my own identity, rounded off with an animated plea to not call myself disabled. The words were sharpened by the person’s increasing tipsiness, which somehow always succeeds in enhancing conviction. Unfortunately, the lemonade in my own hand only served as a metaphor; my attempts to put my side across were just bubbles, easily popped by the weight of their certainty.

This created an interesting duality for me. The statement I once fought so hard to earn was now at total odds with the sense of identity I’ve spent years curating and becoming comfortable with, and that summoned a sense of unease.

Let’s talk it all through.  

I’ve written time and time again about how I used to hide parts of myself in order to grasp a sense of ‘fitting in’. But my real motivation was protection. I believed that by constructing a facade, people wouldn’t be able to fracture my self-esteem with ableism and stereotypes. But naturally, not much stays on the down low in a school environment, and my mask quickly became an armour against the comments I was hearing. 

In that setting, being disabled was assumed to be a tragedy and the only thing that defined me, and that notion became the perfect breeding ground for my complicated relationship with the word. 

 I rejected any association with it because being called disabled meant being viewed as weak, vulnerable, and incapable. Those labels felt like bright yellow post-it notes that clung to my existence, and the only way I knew how to peel them off was to resist the name myself. 

So there I was, rarely referencing my condition or the barriers I was facing. I mounted my bike even when I felt scared to do so as a result of further deterioration, because I didn’t want to surrender to it or the ‘incapable’ label. (I apologise to the people I nearly crashed into due to this stubbornness!) And, you know what’s coming… I refused to use a white cane for years due to what I believed it symbolised.

‘I am more than my impairment’ was a truth I wanted people to see through the haze of discrimination and othering they cast over me. But looking back, I have to ask if I went too far in editing myself until that part of my reality was completely erased.

When someone says, ‘I don’t see you as disabled,’ they mean it as a compliment. They mean they don’t see me as the pitying, tragic stereotypes that ableism has tagged onto the word. I’ve always accepted the statement as a positive, until the conversation that inspired this post. 

When I was younger, the negative connotations surrounding the word coded my perspective and feelings, but that was because I was listening to non-disabled people’s interpretation of it. 

It wasn’t until I started chatting to fellow disabled people that I finally let go of others’ perceptions and began to form my own. The Social Model of Disability gave me a massive hand in this as it helped me realise that ‘disabled’ didn’t mean labelling a weakness within myself, but pointing out one in wider society.

And that brings me to the conundrum I faced during that conversation. My inner younger self, who had always craved reassurance, was grateful for it. But when my words were followed by the question, ‘what barriers?’ when I stated that I am in fact disabled because of them, I was taken aback.

Those closest to me have always said that I’m an expert in keeping things to myself, but I never imagined I’d done it so well that someone would question whether the barriers I was now voicing even existed.

Before I go any further, I have to make it clear that this isn’t me criticising their perspective. I know it came from a place of good intentions, and that comment about the barriers was probably pure unknowing, but I did wonder if the mask I’d worn for years had helped them maintain that obliviousness. 

It’s a tiring paradox to be honest: society demands that we perform some kind of ‘normalcy’ to fit into its narrow design, but then uses that performance to deny the hardships we face.

It’s that conversation that gave me clarity on where I’m at in my relationship with the word ‘disabled’ these days. 

It’s ultimately an identity I’ve had to claim in order to become comfortable in advocating for myself, calling out the barriers, and moving through life without a heavy shoal of hiding over my shoulders.

It’s true that I don’t want to be defined by my impairment, but that doesn’t mean I want it to be erased from my story. After all, my experiences as a disabled person have shaped so many aspects of my life, in both good and bad ways, and I don’t want that to be overlooked.

People constantly skirt around the word ‘disabled’, even substituting it with phrases that evoke far more negative connotations, and we already know the devastating impact those can have. 

My younger self would wince at the thought of calling herself disabled, never mind reaching a point of willingly professing a desire to be identified as such, but here we are.

I don’t claim the word as an internal label or a personal limitation as I once believed it was. I use it in recognition of societal barriers, because as long as the infrastructure, the attitudes, and the spaces around me remain inaccessible, I am disabled by them. To ignore the word is to ignore the fight that I, and so many others, face every single day.

‘Disabled isn’t a bad word.’ I delivered that statement to the tipsy person beside me like a tall glass of water, hoping it would clear the toxic fusion distorting reality.

For too long, society has been drunk on the power it holds over how disabled people are perceived, and how we view ourselves as a result. Well, I’m calling last orders.

I don’t want people to deny me or any other disabled person the way we choose to identify ourselves. Language is incredibly nuanced and subjective, and it should be respected depending on an individual’s preference.

It took me a long time and many ups and downs, but I’m now comfortable with the word ‘disabled’. I only wish society was too.

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What’s your relationship with the word ‘disabled’? If you’re still navigating these choppy waters, please know you aren’t alone. My aim in sharing pieces like this is to help others feel seen in whatever stage of the journey they’re in, and I hope, in some sense, that my words can aid someone else in lowering their mask too.

Elin x