Not All Disabilities Are Visible

By Jess Waterman
Head of Communications, Campaigns & Events at Barnwood Trust

On this, ‘International Day of People with Disabilities’, I am thinking about all the people across the globe who are disabled by society; who experience the world differently; and who are so often overlooked.

I try to imagine the diverse lives of disabled people, with wide-ranging daily routines and adaptations, and wonder how it is that we as a human race are not more in tune with difference. Why do we settle for a narrow-minded narrative about what is ‘normal’? I guess I’m signalling representation in the media here, among other things, which seems to dominate our collective consciousness.

How did we get here? And, more importantly, how do we change to an inclusive – and properly embracing – shared existence?

One of the themes for IDPWD this year: ‘Not all disabilities are visible’ strikes a chord for me. My teenage daughter had it confirmed recently that she has an Autism Spectrum Condition. She has always had this condition but only in recent years did we start to identify it. Imagine that: living in a loving family with a difficulty that is hidden, misunderstood and unappreciated; even by yourself.

My daughter struggles every day because of her disability. Her brain is wired differently to mine but it’s not broken. She has a disarming perspective on the world, she is extremely bright, artistic and funny. But being around people is troubling for her, she feels “unsafe” in any environment that isn’t home, and she works extremely hard all the time to fit into a world that isn’t designed for her needs. Most of the people around her are completely unawares. So, to navigate that world independently of Mum, Dad, big sister, grandparents, aunties, uncles and cousins who ‘get’ her and make adjustments for her, she has to explain and request things that are often intangible or difficult to ‘justify’, all when she is already terrified of unexpected things, particularly unexpected turns in conversation. She spends her life in environments that give her sensory overload and make her extremely anxious, without manageable ways to ask for what she needs. As I write this, and I have lived as close to my daughter’s thoughts and experiences as another person humanly can, I still cannot fully fathom what that must be like for her.

There is a wonderful community of neurodiverse thinkers and activists championing greater understanding, and organisations like the National Autistic Society and others who have done so much to raise awareness about the experiences of people with autism, as well as forward thinking employers who are actively recognising the gifts and talents of people who think differently. So, the world my daughter is growing up in is not the same world my mother grew up in. I am deeply thankful for that.

But, there is such a way still to go. And for me, this aching need we have as a society to fully embrace our diversity as our strength, reaches across a spectrum of abilities, identities and life experiences.

So, this is my thought for today: What is holding us back as a collective, from embracing our diversity and seeing what is hidden? What unpleasant thing do we think will happen if we let go of some of the rigid constructs of our society? Is there another way?

I certainly don’t have answers to these questions and I have a great deal to learn, but I would like to be a part of that shift in any way I possibly can. Who’s with me?