A personal reflection on disability
Hey, I’m Marysia – a hardworking multitasker, loving wife, and mum to two curious, gorgeous children. Life is busy, full, and wonderfully messy, but at the heart of it all is family. I’m also a very proud auntie to some beautiful girls, and today I want to share the story of one very special little girl who has taught me more about strength, love, and resilience than I could have ever imagined.
November is upon us and that means Disability History Month! When I hear the word disability, I think of a term that tries to capture so many different realities – but can never truly hold them all. Disability means something different for every person. For some, it might be a visible challenge; for others, hidden struggles; for many, a complex tapestry of needs, strengths, and communication styles.
Disability: A Personal Journey
For me, disability is deeply personal. It is my beautiful niece – a brave little girl who faces a world most of us never have to imagine. She lives with severe spinal injuries, gastrointestinal conditions, a tracheostomy, a feeding tube and a multitude of other obstacles. She can’t speak in words, but she has her own language of love and connection that lights up every room she enters. Watching her, I have learned that communication is so much more than spoken language – it’s in the eyes, the smile and the gentle touch.
The Rollercoaster of Medical Challenges
I won’t lie, the journey has been long and emotional. She was first taken to hospital at just three days old with a temperature that quickly spiralled into something much more serious. Since then, she has endured multiple life-threatening surgeries, including several spinal operations. The rollercoaster of emotions – fear, hope, confusion, exhaustion – has been relentless. There were moments when we didn’t know if she would be okay, times when understanding each new diagnosis felt overwhelming. Through it all, our family stuck together. Through every triumph, every setback, every new diagnosis. Today, we are in a place of stability and security, and we get to enjoy the simple, precious joy of being with the beautiful little girl she is.
Strength in Family and Togetherness
But alongside the beauty, there are immense challenges. Our family’s journey with her disabilities has been a constant battle – not just medically, but socially and emotionally. The care she needs is round the clock, 24/7, a necessity that should never be questioned but has had to be fought for fiercely. My question is why? Why should we have to fight?
Disability is often treated as a single concept, but the truth is, the realities behind it are many and complex. Society’s views and decisions around disabilities ripple out and impact not just the individual but entire families – my sister, my parents, me, our whole family. We all carry the weight and the love of her needs. And sometimes, the noise of the world around us – the bureaucracy, the lack of understanding, the inadequate facilities – can drown out what should be simple: support, kindness, accessibility.
Breaking Down Invisible Barriers
Why does it have to be such a struggle? Why should families like ours have to fight for care, for facilities, for basic inclusion in everyday spaces – in schools, in public places, in life? Infrastructure and processes often overlook the needs of disabled people, creating invisible barriers that we must constantly navigate.
What I will say is I am hopeful. I have seen change, I have seen more support and I hope this continues and fewer people have to fight for what they need – for what is right.
A Message of Solidarity and Love
But even in these hardships, what I want most is for anyone reading this – whether you live with a disability, love someone who does, or simply want to understand – to know this: you are not alone. The fight is real and exhausting, but it is done out of love. Love for the laughter, the joy, and the extraordinary lives lived fully, despite the challenges.
We support each other in this journey because every life is deserving of respect, care, and belonging. Disability history month is not just about remembering the past; it’s about recognising the present and fighting for a future where everyone, regardless of their needs, can live with dignity and joy.
To my niece, and all the incredible people like her – you inspire us every day.
Are you caring for someone with a disability? Are you struggling with the financial weight of it all? Do you just need to talk?
There is support out there, don’t be afraid to reach out. Remember you don’t need to carry this on your own.
