I don't want to hear how much I've accomplished 'in spite' of my disability

You may have heard the phrase ‘disability doesn’t define you’ – you may have even heard it from me once or twice.

I was someone who always firmly believed in this saying. I believed that my disability was always something to fight against and to be defined by it was a negative thing.

Until a few years ago when I read a blog post by disabled blogger known as From Sarah Lex that got me thinking. 

She spoke quite candidly about her life as a wheelchair user and how she learned to see how the challenges her disability has defined the person she has become. Her words resonated with me and my view of my disability completely pivoted. 

It was from that point onwards that I started to consider my identity and what role my disability played in that.

I’ve had a congenital condition called Septo Optic Dysplasia since birth. It manifests in a severe visual impairment and complex endocrine illness. Essentially, I have a chronic illness that impacts my ability to produce vital hormones that help my body function.

I’ve lived with my disability for 27 years and not one day has passed where it hasn’t presented challenges. Simple tasks like reading a letter, catching the train, or finding a brand of tea in the supermarket become a challenge when you haven’t got much sight.  

These are all challenges I’ve learned to work around and am still learning to deal with every single day.

Yet, some would say that I’ve defied my disability or gone against it and triumphed. Whether that’s because I went to university, got a job, started a blog or even done something as simple as go to the shops unaccompanied.

It’s a saying that’s commonly used, and it’s perpetuating a view that our disability must be this dark, oppressing entity that can only ever be the antagonist in our story – that we must detach ourselves from it and learn to live with it as a footnote to our story.

But what if I told you that we can be defined by our disabilities and that it’s OK?

Our disabilities define us because they are us. They are part of our physical form; they impact our everyday experiences and have an impact on everything we do in life.

My disability is a part of me, I’ve had it since day one and every milestone I have reached has been with my disability and not in spite of it.

Yes, my disability has certainly made the struggles harder, sometimes almost impossible. So perhaps people would argue that I’ve ‘triumphed’ over my disability.

But largely the struggles are there for me because I sadly live in a world that isn’t always made to accommodate someone living with sight loss.

It’s not all we are, but every single person is complex and interesting, and our disability is just one part of who we are. But it is an important part.

When people tell me that I’m amazing for doing what I do ‘in spite’ of my disability, it honestly hurts.

I remember getting into a taxi into university one day, and the driver commented on how amazing I was to go to university. He said, ‘you’re amazing for doing this because not a lot of people like you would go to university. You’ve not let your disability beat you’.

I was rather shocked; I knew he thought he was giving me a compliment and being kind. But many people with disabilities like me go to university, not because we are fighting against their disability but because we genuinely want to. 

It’s a toxic view to have, because disability can come with age and so many people are often so afraid of it that they believe that anything you do in life when you have one is a battle you’ve won.

I’m proud to be disabled.

To reject it would be to deny an intrinsic part of my identity and I wish other people would treat my disability in the same way.

I feel that it’s important for us to recognise that our differences have helped shape the persons we have become and will grow to be.

We are defined by many things. We are defined by our lived experiences, our cultures, beliefs, relationships, and our identities. All these things help to shape us as people and mould us into the person we are. So why should our disabilities be any different?

Am I totally defined by being a woman? No, but it has certainly had its part to play. Just in the same way I’m partly defined by being British, or short and, of course, being disabled.

I am made up of everything I am, everything I’ve experienced and do. Every aspect of our lives impacts us, good or bad and changes the path that we take in life.

My disability has taught me to problem solve, to learn skills that have helped me through life. Without it, I’d have never learned to touch type or use all the technology I can. Without it, I’d have never developed a good memory due to having sight loss and needing to recall important details to remember routes with my guide dog. 

It also taught me to learn how to ask for help, to learn to advocate for myself and to trust others. My relationships are built on trust and I’ve learned how to recognise when I need to speak up for myself, and ask for what I’m entitled to.

It’s taught me to recognise prejudice and challenge those who would level it against me, and others like me.

I can empathise with other people’s lived experiences. While they may differ from my own, I can understand the hurt that comes with it and be a better ally.

Growing up, I constantly heard people list my inabilities (medically speaking), so my disability made me push myself academically and creatively. I was the first person in my family to graduate from university (twice over) and went on to pursue my passion as a writer and advocate.

Without my disability I’d have never met my two beautiful guide dogs, Unity and Rosie, who have been a constant source of joy in my life and given me so many wonderful memories.

It has facilitated the process in which I have grown both mentally and emotionally – and I’m proud of that.  

Having a disability provides you with a unique perspective on life. It teaches you a lot about yourself, others, and the world around you. So why shouldn’t we be allowed to accept and even embrace that? 

In the same way people ask: ‘Would you want to be cured?’ and I say no, because I recognise that my disability is a part of me. It’s a part of what makes me who I am and I personally couldn’t imagine my life without it. 

Don’t be afraid to say your disability defines you. Because if you truly look inside yourself and reflect over your past experiences, I’m sure you’ll see just how much it has impacted you and helped form your strengths and characteristics. 

Do you have a story you’d like to share? Get in touch by emailing [email protected] 

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