What It’s Really Like To Live With A Disability

What It’s Really Like To Live With A Disability

I used to hate the word ‘disability’.

When I was a kid, it just didn’t fit right. It felt like some restrictive social services label that I didn’t really identify with. I mean I got on alright, my life wasn’t that different to other kids and I felt like some kind of imposter for adopting the label (lol at the deep 8-year-old thoughts I was having).

If I am honest using ‘disability’ also probably felt like shame, I didn’t like the idea that it would mean I was different from everyone else. In my mind, using that label would separate me from my friends and make me ‘other’.

In my first English class in Year 7 my teacher asked me to get up in front of the class and explain my disability to everyone (I only realised recently how rough that was). So, as a timid and wildly pubescent 12 year old I stood up and explained that I had Albinism.

It went like this:

Me: ‘So… I have albinism’

Classmates: (blank looks… tumbleweeds)
Me: ‘I’m an albino’
Classmates: ‘But you don’t have red eyes! Yeahhhh you don’t have red eyes!! Yeahhh!’
Me: ‘That’s actually not a thing, some people with albinism have that but depending  on how much pigment (skin colouring) you have you might not have red eyes’
Classmates: ‘My cousin’s rabbit has red eyes’
Me: ‘Cool story bro…’

thumbs up michelle obama cool story bro no problem sarcastic

I have had a conversation like this probably 300 times since then.

Shit people say to people with disabilities.

Anyway, for those playing along at home, Albinism is a rare genetic condition affecting about 1000 Australians (only 1 in 17,000). It is caused by a recessive gene that is passed from both biological parents. A lot more people may carry the gene but it takes two genes to combine through unicorn magic to make a real life Albino.

A lot of people would recognise people with Albinism through their pale skin and hair. Some people with Albinism might have light purple or pink coloured eyes but mine are deep greyish blue, just like my mum’s.

What a lot of people might not know about Albinism is that it causes vision impairment, that’s where the disability stuff comes in.

You need a pigment called Melanin to develop your retina and optic nerve; which make your eyes see good. People with albinism produce little or no Melanin so our eyes don’t ever fully develop.

I get by, but I am too blind to drive, I have to use massive text on my phone and computer and if a friend waves at me from across the road, I won’t be able to see sh*t, but I will wave back to be polite.

I miss a lot of visual cues when I am watching a presentation or in a big meeting, I need A LOT OF SUNSCREEN and I get really sore eyes watching long movies (and usually fall asleep as a result… sorry to anyone who has ever watched a movie with me).

That’s me falling asleep.

It sucks sometimes, but I make it work and often forget it’s even a thing. Probably because the world is designed for fully sighted people and if that isn’t you, you just have to get on and adjust to get by.

A couple of years ago I met a badass, amazing woman named Stella Young. Stella was a comedian, writer and disability activist and after we first met we both confessed having major friendship crushes on each other and decided to friendship date (yes, that is a real thing and I suggest you try it).

The first time we hung out Stella said she would just meet me at FYA and we’d find somewhere to grab a drink. I remember anxiously trawling the internet trying to find a wheelchair accessible venue we could go to. Stella would have to consider this stuff all the time (Stella used a wheelchair), but I hadn’t ever had to consider how many places aren’t accessible. It’s crap.

Stella sat opposite me and we talked rubbish about mutual friends and other funny things and then Stella asked me some questions that I had never been asked before.

‘Do you see yourself as disabled?’

‘Are you scared you’ll miss out on opportunities because you have a disability?’

‘What sort of things have you done to hide your disability?’

‘What is it like ‘passing’ as someone able bodied when you are actually vision impaired?’

Even though I hadn’t specifically thought about these things before, when I started speaking the words flowed out of me like I had known the answers my whole life.

I shared stories and Stella did too. Stories of frustration, shame and anger, but also stories of pride and gratitude for all that our unique experiences had brought us.

It was one of those moments where you realise what you already knew. Like when a song comes on the radio that you haven’t heard for 10 years, but somehow you know every word and the ‘oooohh/ahhh’s’ in the chorus.

Ever since that conversation my relationship with the ‘disability’ label has changed. I am still feeling my way into it. I still notice when I use it to describe myself but I use it with more pride than I ever have before.

For me, the word ‘disability’ means a lot of things.

It describes my ability to see things from the perspective of those who are marginalised or excluded in our society.

It describes my uniqueness and my porcelain skin and light golden hair.

It describes my passion for social justice and inclusion.

It drives me to think about what voices are left out or silenced in important social conversations.

It’s been key to developing a lot of resilience.

It’s brought me so much and defined so much of who I am.

My story is just one story of one gal in Melbourne who is vision impaired and hella pale.

It doesn’t even begin to represent every disability story. Many people will have had all types of experiences where they don’t have the choice to hide their disability when it is convenient to do so, or their access to support isn’t as great as mine.

But I hope by sharing this I have given you, dear reader, another perspective to tuck in your back pocket and carry around with you as you go on your merry way.

To hear another story like this

Check out The Other Film Festival

It starts in Melbourne next week.