Stella Young's letter to herself at 80 years old

Eighty, hey? Eighty.

Eighty is a long way from where I write to you now. Fifty years, in fact.

To be honest, I've never thought a great deal about you, eighty-year-old Stell. I tend not to think about living to some grand old age. Then again, I don't think about dying either. I suppose you do; you're eighty. You've done a lot of things. Seen a lot of things. You almost certainly have a hover-chair by now. When I was seven and watched an episode of Beyond 2000 that featured a floating armchair, I thought we'd definitely have one of those by fifteen, at the latest. As we both now know, the twenty-first century has been nothing if not a tremendous lie.

I suppose I can't really write this letter to you without talking about the assumption, the expectation, that people like us die young.

One of my most beloved crip heroes, Harriet McBryde Johnson, wrote in her memoir about her realisation at four years old, while watching a Muscular Dystrophy Telethon, that she was a little girl who was going to die young. The telethon was famous for its host, Jerry Lewis, trotting out adorable disabled children and telling us all that they were going to die. Most disability charity hinges on that notion – that you need to send your money in quick before all these poor, pitiful people die. Peddling pity brings in the bucks, yo.

When it comes time for Harriet to start kindergarten and she isn't dead yet, she says to herself, 'Well, I might as well die a kindergartener.' When she starts high school and she isn't dead yet, she thinks, 'Well, I might as well die educated.' When she graduates from law school and she still isn't dead yet, at twenty-seven, she decides, 'Well, I might as well die a lawyer.' Harriet is thirty before she realises that it is, in fact, too late to die young. And so she spends the rest of her life protesting against that awful Muscular Dystrophy Telethon. Not just because it handed her a false death sentence, but because pity gets in the way of our rights. There's been much talk of Lewis bringing his telethon to Australia, but don't worry, eighty-year-old Stell, you totally kicked that one in the dick.

I fall into this trap of talking about Harriet as though she was a friend. She was, in a way. Hers was one of your 'coming out' books. Remember those days back before you came out as a disabled woman? You used to spend a lot of energy on 'passing'. Pretending you were just like everyone else, that you didn't need any 'special treatment', that your life experience didn't mean anything in particular. It certainly didn't make you different from other people. Difference, as you knew it then, was a terrible thing. I used to think of myself in terms of who I'd be if I didn't have this pesky old disability.

Then, at seventeen, something shifted. To borrow from Janis Ian, I learned the truth at seventeen.

That I was not wrong for the world I live in. The world I live in was not yet right for me.

I started learning about the social model of disability. Reading all the disability studies resources I could lay my hands on. I devoured the memoirs of other disabled people. And I completely changed the way I thought about myself.

I stopped unconsciously apologising for taking up space. I'm sure you can scarcely imagine that now; a world where disabled people, women in particular, are made to feel like we're not really entitled to inhabit public spaces.

I started changing my language. To jog your memory, back when you're still thirty there are all kinds of fights about whether we are allowed to say 'disabled people' at all. It's 'people with disabilities' that's all the rage. 'Cause we're, like, people first, you know? And if we don't say that we're people, folks might get confused. But I've never had to say that I'm a person who's a woman, or a person who is Australian, or a person who knits. Somehow, we're supposed to buy this notion that if we use the term disabled too much, it might strip us of our personhood. But that shame that has become attached to the notion of disability, it's not your shame. It took a while to learn that, so I hope that you've never forgotten.

I started calling myself a disabled woman, and a crip. A good thirteen years after seventeen-year-old me started saying crip, it still horrifies people. I do it because it's a word that makes me feel strong and powerful. It's a word other activists have used before me, and I use it to honour them.

Unlike Harriet, I've never thought I was going to die young. But I'm aware, sometimes painfully so, that there are people who do. At thirty, there are already people quick to tell me I've had a good innings. Most recently, an anaesthetic nurse who was about to knock me out before a very minor procedure on my right elbow asked me how old I was. I told her, and she looked down at me in my funny little hairnet in a bed you could have laid three of me end-to-end on, and she said, 'Oh, well, you're doing very well then, aren't you.'

'Am I? AM I?' I wanted to ask, but I was already drifting off to sleep. Some people are such c---s.

Still, what she'd said did alarm me a little, so I asked a doctor. Two, in fact. Apparently, people with this dicky bone thing usually have small lungs and so we're a wee bit more prone to nasty colds turning really nasty. But that's about the extent of it. At this point, there aren't a lot of old people with this thing around, but it's hardly surprising. From where I sit, it wasn't so long ago we stopped institutionalising disabled people, locking them away in places that killed their souls and then their bodies. To think of how far we've come in my first thirty years makes me pretty bloody excited about the next fifty.

So you know what you're going to do? You're going to rug up in winter, eat your vegies, slap on some Vicks VapoRub and get the f--- on with it.

I will do everything I can to meet you, eighty-year-old Stell.

By the time I get to you, I will have loved with every tiny little bit of my heart and soul. Right now at thirty, there's a significant love in your life. He's lovely. He makes his old Lego into jewellery for you. He makes you a coffee every single morning, and he doesn't expect you to be civil before you've consumed it. If he accidentally buys the biggest carton of milk that's too heavy for you to lift, he pours it into smaller bottles so you can manage. Whether there's one great love or many, you will have loved and been loved, obscenely well.

By the time I get to you, you won't be a grandmother. Kids are cute, but fuck they're hard work. You decided many years ago, despite every man and his dog sending you those articles from New Idea and Woman's Day about 'The World's Smallest Mother' or 'My Miracle Pregnancy' that, in fact, you don't want your own kids. Even though we both know how much you like to do the opposite of what people expect of you, and the personal is political and all that, kids are too important for that. You're not very committed to the parenting bit, and you hear that's a pretty big part of the deal.

By the time I get to you, I will have lost people I love. At thirty, you've never lost someone dear to you to death. There was great-nana Stella, but she was very old and you were still so little. There was Ruby, the dog you didn't even know you actually loved until she was gone. You've come very close to losing your best friend, but she stayed and you get to keep loving her and texting during TV shows that wouldn't be the same without her. Losing someone is the thing that terrifies you more than anything. You will have been through that terror, and survived.

By the time I get to you, I'll probably have lost Mum and Dad. Dear Mum and Dad, who never wanted me to be anything other than what I am. Who never expressed a scrap of disappointment that I wasn't quite what they were told to expect. Who, despite being told not to have any more children because of the risk they'd have my condition, went on to have my two beautiful sisters. I think that's the thing I love them for the most; that they didn't see disaster, when those around them could speak of little else.

By the time I get to you, I'll have written things that change the way people think about disability. I'll have been part of a strong, beautiful, proud movement of disabled people in Australia. I'll have said and written things that pissed people off, disabled and non-disabled people. You will never, ever stop challenging the things you think are unfair.

You will write some fiction, in which the central character is a disabled teenage girl. Because f--- knows that wasn't around when you were growing up and desperately searching for characters you could truly relate to. Somebody might, at some point, call you the crip incarnation of Judy Blume. Who knows?

By the time I get to you, I'll be so proud. The late Laura Hershey once wrote about disability pride, and how hard it is to achieve in a world that teaches us shame. She said, 'You get proud by practising'. Thanks to my family, my friends, my crip comrades and my community, I'm already really proud. But I promise to keep practising, every day.

Listen, Stell. I can't tell you for certain that you and I will ever meet. Perhaps that thing I always say flippantly, usually with a third glass of wine in my hand – that I'm here for a good time not a long time – perhaps that's true.

But on my path to reach you, I promise to grab every opportunity with both hands, to say yes as often as I can, to take risks, to scare myself stupid, and to have a shitload of fun.

See you in our hover-chair, lady.

Love, Stell x

Stella Young is a writer, comedian, activist and former editor of ABC Ramp Up. Her work regularly appears on The Drum and frankie, and her face and voice on ABC TV and radio. 

This is an edited extract from Between Us: Words and wisdom from Women of Letters, curated by Marieke Hardy and Michaela McGuire. (Viking, $29.99.)