My impairment is not a tragedy

There comes a time after a substantial blogging break where I yearn to write again; fleeting moments in the week see me returning to the scraps of sentences that clog my notes app in pursuit of curating a new feature. Unfortunately for the writer in me, final year university demands on top of my day job have been a vacuum of my time and energy which means I haven’t been able to check-in to my online space for a while. 

However, there have been moments over the past few months when I have still been sharing my experiences as a vision impaired person, and it’s some of those instances that initially got me thinking about today’s topic. 

I was also exploring the concept of stories for a piece of uni work, how they are told in one form or another every day and how they can be re-constructed depending on where and who we tell them to. It’s there, deep in the stress of another assignment, that an idea surfaced and it’s now, during snatches of free time I’m stealing between working and studying that I want to decode all those feelings with you.

Before I delve into the nitty-gritty of it, I’m going to put it out there that this post isn’t written with the intent of offending or making anyone feel bad for thinking or saying any of the things I’m about to mention. But it will hopefully serve as a little insight into how I view my impairment and how impactful some misconceptions can be. Ultimately I’m writing, as I always do, in the name of breaking through the noise of those pesky stereotypes. 

My impairment is not a tragedy

If you tour my blog’s archive, you’ll find pages populated with musings about living life as a disabled person, all in my own words and neatly packaged, tied and presented in the way that felt authentic to my thoughts and feelings at that moment in time. There’s the post I wrote about my experience of anxiety in relation to my vision impairment, another I penned about the fear of missing out as a vision impaired person living in a visual world and more recent accounts of how I deal with change in my eyesight. 

Whilst there has been an air of heaviness to a lot of the posts I’ve curated over the years, I have always laced the writing with my trademark positivity because I’ve been adamant to show that there can be light even in the darkest moments. 

That’s a line I’ve repeated in so many write-ups, interviews and talks over the past few years but as I read an article that was written about me recently and flicked through the responding comments, I realised that no matter how persistent I am in highlighting the societal barriers that disable me, my words will always be interpreted and utilised in a different way to what I intended.

Stereotypes seem to mould the details I share into a sob story, a headline claiming bravery, an X-Factor-esque VT that’s soundtracked by Coldplay’s ‘Fix You’ (remember those?), and the arc always seems to be that I have ‘overcome’ my impairment.

Now that’s a bold statement and it’s one that flies the flag for so many damaging stereotypes. It’s no secret that historically, the rhetoric has been that disabled people are incapable and so when we achieve something, it’s assumed that we have ‘overcome’ our impairments in order to do so. 

When I received the marks I wanted for the aforementioned university assignment or when I’ve achieved other things in my life, I didn’t suddenly become fully sighted, which is what ‘overcoming’ hints to me. I didn’t succeed something and think ‘My job’s done here’ and leave my impairment behind; it’s still there and it means that the things I want to do and achieve in my life might be a little harder to reach sometimes, but that’s due to the societal barriers that exist, not because of my impairment itself.

Disability is a social construct and a lot of the negative attitudes that are out there are a symptom of the language that is used to talk and write about us as disabled people. 

I’ve been so excited by some of the opportunities I’ve had to share my story on TV, radio and in newspapers, but it’s a jarring duality; feeling giddy by the prospect of having a new platform to raise awareness whilst simultaneously anticipating how my story will be represented when I don’t have creative control over the final product.

That’s the thing about handing your story over to someone else, it’s no longer your own preserve. You know that you’re ultimately affording them the opportunity to view, shape and interpret it in their own way and that can be a scary thing at times, especially when the majority of the world is still largely subscribed to the medical model of disability.

Don’t get me wrong, there are features out there which I’ve been proud to share as, similarly to my blog, they are representations of my thoughts and feelings at that particular time. I’m incredibly grateful for the opportunities I’ve had to share my experiences with different outlets and even more so for the people who have come over to read my own words here on my blog as a result of reading or watching those pieces. Here is where you’ll find my most authentic ramblings, after all. 

But there still exists features about disabled people that reinforce problematic stereotypes, painting the picture that having an impairment is a bad thing. I’ve read them, the stories that spotlight the trajectory of someone’s sight loss journey, for example; how it all started, how much someone can or cannot see; letting all the medical aspects call dibs on the front seat whilst the more pressing societal barriers have to make-do in the back with blackout windows hiding them from view.

These were the narratives I was exposed to when I turned to the internet in search of some reassurance when I was navigating my teenage years, and I can’t deny that it was damaging to read at times. 

Often, these stereotype fuelled narratives popped up in the crest of my anxiety about losing my eyesight which was far from ideal when trying to find some semblance of acceptance. 

All of this extends to my life offline too. I’ve always found myself a subject to pity-induced arm caresses, comments of ‘Well done!’ coming as applause for doing the simplest task, and observations of ‘It must be so hard’ greeting any reference I make to my vision impairment.

True, there are hard times, of course there are; I find myself navigating the latest challenge as I sit here writing this, in fact. But despite the difficulty of such challenges, I have never presented them as a cry of ‘Poor me’, neither have I considered them to be something that will hold me back from chasing my goals. They do present hurdles as I embark on that race and I’ll hold my hands up and say that sometimes I fall, sometimes I sit there with my knees scraped, watching the top of the hurdle wavering out of view. In that moment, I simply have to feel and crawl around it because that’s the nature of living as a vision impaired person, it’s a series of adaptions, an endless pursuit of an alternative way of moving forward.

Whilst the deterioration I experience is challenging, an inaccessible environment and negative attitudes are even more so.

I’ve always been hyperaware of people’s perceptions, cataloguing comments and observations that I knew I shouldn’t have but couldn’t help doing anyway, perhaps the writer in me knew it could serve as future material.

This catalogue of stereotypes once convinced me that I needed to hide my impairment in order to fit in. And that’s the sad thing here, isn’t it? The fact that I felt like I should hide a part of myself to avoid pity and in order to be accepted.

I have no doubt that other vision impaired and disabled people will have done exactly the same at some point in their lives and that’s part of the reason I want to write posts like this; it’s to educate society as much as is it is a message to fellow disabled people, particularly young disabled people, that they are not alone, they have nothing to be ashamed of and they don’t need to change.

Stereotypes are often the match that ignites disabled people’s internalised ableism and the only way we can snuff out that flame is by promoting the social model and encouraging society to change.

I’ve closed the cover on the aforementioned catalogue but I can’t deny that some worries that grew as a result of its contents still wake from their dormancy from time-to-time. I’m still aware of how people train their eyes on my cane, or note how I’m holding onto someone’s elbow as they guide me and I’m skeptical of the pity-fuelled narrative they might form as a result.

I don’t let these things get to me as much as they used to but it’s still a bugbear of mine when people see my impairment before they see me and choose to interact, or avoid interaction, with me based on the stereotypes they either believe or have been exposed to.

Society perceives disability from an old fashioned place and we need it to move from there in order for these damaging narratives to be rewritten. 

So let’s start. Let’s collectively acknowledge that it’s societal attitudes and barriers that need fixing, not a person’s impairment. Let’s stop dishing pity out like confetti and let’s stop assuming being disabled means being sad.

Okay, sometimes I do feel sad that I can no longer see something I was once able to but I don’t want others to feel sadness for me. I want people to be allies and to take action to strive for a more equal and inclusive society. I want to live in a world that accepts the fact that I don’t regard my impairment as a bad thing: I want news outlets to stop spotlighting people’s medical history and framing it as a sob story, a triumph, or a narrative of ‘overcoming’ in pursuit of more clicks: I want people to practice empathy instead of sympathy. Surely that’s not too much to ask? 

My vision impairment has shaped so many aspects of my life, it’s a part of my identity but I’m not saddened by that. If something, I’m empowered by it. That’s not a sign of overcoming but rather a nod to how I’ve learned to adapt in a world that wasn’t designed for vision impaired people like me.

If I don’t view my impairment as a tragedy then surely it’s not up to someone else to assume it is based on the stereotypes they’ve been fed?

Misconceptions have always told us that we don’t belong and that we need to be treated differently. I’ve felt the gravity of that throughout my life and have always willed things to change. 

I don’t want young disabled people, or those who are newly diagnosed, to feel like they have something to be ashamed of and I don’t want them to feel as though they need to expose their entire medical history in order to feel heard and understood.

Disabled people are as much a part of this world as anyone else, our experiences and feelings, whatever they may be, are valid and we need people to listen, but let’s start doing that with an empathetic ear, not a sympathetic one. 

Because, at the end of the day, we don’t want your pity, we want your allyship. 

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Are you a fellow disabled/vision impaired person? Have you ever felt as though people view your impairment as a tragedy or framed it as a sob story? From chatting to others over the years, it seems to be a universal experience but I’m hopeful that things are slowly changing and I think we have the online world to thank for that. The beauty of social media and having so many places to share our stories these days is that we have control over our own narratives. Not only are we able to connect with others in a similar situation to offer advice and reassurance but we’re creating spaces and platforms for educating and changing perceptions. 

Maybe some day we’ll live in a world free of barriers and prejudice but, for now, I hope I can help to alter at least one person’s attitude, one blog post at a time.

Elin x