Stella Young: The assumption is that people like us die young Stella Young was a writer, comedian, activist and former editor of ABC Ramp Up. Her work regularly appeared 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.) Dear eighty-year-old me, Eighty, hey? Eighty. Eighty is a long way from where I write to you now. Fifty years, in fact. To be honest, Ive 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 dont think about dying either. I suppose you do; youre eighty. Youve 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 wed 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 cant 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 isnt dead yet, she says to herself, Well, I might as well die a kindergartener. When she starts high school and she isnt dead yet, she thinks, Well, I might as well die educated. When she graduates from law school and she still isnt 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. Theres been much talk of Lewis bringing his telethon to Australia, but dont 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 didnt need any special treatment, that your life experience didnt mean anything in particular. It certainly didnt 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 Id be if I didnt 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. Im sure you can scarcely imagine that now; a world where disabled people, women in particular, are made to feel like were not really entitled to inhabit public spaces. I started changing my language. To jog your memory, back when youre still thirty there are all kinds of fights about whether we are allowed to say disabled people at all. Its people with disabilities thats all the rage. Cause were, like, people first, you know? And if we dont say that were people, folks might get confused. But Ive never had to say that Im a person whos a woman, or a person who is Australian, or a person who knits. Somehow, were 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, its not your shame. It took a while to learn that, so I hope that youve 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 its a word that makes me feel strong and powerful. Its a word other activists have used before me, and I use it to honour them. Unlike Harriet, Ive never thought I was going to die young. But Im aware, sometimes painfully so, that there are people who do. At thirty, there are already people quick to tell me Ive 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, youre doing very well then, arent 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 shed 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 were a wee bit more prone to nasty colds turning really nasty. But thats about the extent of it. At this point, there arent a lot of old people with this thing around, but its hardly surprising. From where I sit, it wasnt 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 weve come in my first thirty years makes me pretty bloody excited about the next fifty. So you know what youre going to do? Youre 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, theres a significant love in your life. Hes lovely. He makes his old Lego into jewellery for you. He makes you a coffee every single morning, and he doesnt expect you to be civil before youve consumed it. If he accidentally buys the biggest carton of milk thats too heavy for you to lift, he pours it into smaller bottles so you can manage. Whether theres one great love or many, you will have loved and been loved, obscenely well. By the time I get to you, you wont be a grandmother. Kids are cute, but f--- theyre hard work. You decided many years ago, despite every man and his dog sending you those articles from New Idea and Womans Day about The Worlds Smallest Mother or My Miracle Pregnancy that, in fact, you dont 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. Youre not very committed to the parenting bit, and you hear thats a pretty big part of the deal. By the time I get to you, I will have lost people I love. At thirty, youve 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 didnt even know you actually loved until she was gone. Youve come very close to losing your best friend, but she stayed and you get to keep loving her and texting during TV shows that wouldnt 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, Ill 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 wasnt quite what they were told to expect. Who, despite being told not to have any more children because of the risk theyd have my condition, went on to have my two beautiful sisters. I think thats the thing I love them for the most; that they didnt see disaster, when those around them could speak of little else. By the time I get to you, Ill have written things that change the way people think about disability. Ill have been part of a strong, beautiful, proud movement of disabled people in Australia. Ill 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 wasnt 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, Ill 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, Im already really proud. But I promise to keep practising, every day. Listen, Stell. I cant 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 Im here for a good time not a long time – perhaps thats 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
Posted on: Mon, 08 Dec 2014 08:33:25 +0000
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