Backstories is an annual multi-sited storytelling festival located in the suburbs of Perth and beyond, produced by the team at Centre For Stories backstories gives community members the chance to spend an afternoon with friends and family in the comfort of a neighbor’s backyard, and enjoy hearing local music and stories from trained storytellers. 

 Backstories was possible with generous support from our sponsors, Lottery West, the Department of Local Government, Sport and Cultural Industries, the City of Mandurah and the Centre for Stories Founders Circle. This is a live recording of our Backstories event located in the suburb of Falcon. Recorded on the 13th of March 2021, this afternoon featured live music from Travis Green and emceeing from Ruby Spinning. The story you’re about to hear is from Alana.  

So my story is about, siblings and sisters. My sister Saf and I are 23 months apart. I’m the youngest. My sister and I, growing up, were very close, but we also used to fight a lot. It was a really typical sibling relationship. I’ve got two daughters myself who are also 23 months apart. 

 And, this is a really relevant topic for me, so it’s what I wanted to speak about today. So, my sister was always really inclusive of me, and would let me hang out with her friends, and share whatever she knew about the world. We’re quite different. She’s very extroverted and very confident. By nature, I’m more introverted and, and shy. 

 I feel like she became really brave and confident in the world because when she was young, she was really badly bullied at school. And despite being really academic, she stayed down a year to avoid hanging out with the people who was really cruel to her in her year. At my school, this happened quite a lot. 

And one occasion, there was a boy who had Down syndrome – who the other kids targeted and, gotten and pulled his hair and I remember feeling as a child really disappointed in myself that I didn’t step in and protect or do anything in that moment. But on the other hand, my sister always was that person. 

 If there was someone vulnerable, she would step in, even if she got punched in the face herself, which mum can verify that happened on one occasion. So, my sister, when my sister left home, it wasn’t quite the same and it wasn’t that long after that I followed, we travelled quite a lot. I have this visual image of my sister and I’s life, like, actually like a DNA strand where we go out and come back in again. 

 One of these points where we did that, was I was at a backpacker hostel and my sister was trying to recruit more people to come to a rally for protesting against the war in the Middle East in the early years of 2000. And she came and picked me up and some other international travellers and we went to this rally and from that point she planted the seed of me using my rebellion for something, a little bit more proactive than what I was using it for at the time. 

 So, that was the beginning of that and we found from that point that when we go out, we would do our own things, and we usually met with the purpose of a campaign, or a festival, or something that was usually environmentally focused, until my sister became pregnant. And the reason why we were meeting again was she was coming to live with me. 

 I was living in Bridgetown on a five-acre property, which my parents had just bought. It was a deceased estate, which two brothers had had beforehand. And we inherited all of their stuff, which was quite random. And I wanted to make it really lovely for my sister coming to have a baby there. So I had this spiral veggie garden with all the flowers and I made a pregnant scarecrow in the middle and my sister rocked up and said she liked the scarecrow and loved that but the garden was all wrong, it wasn’t a proper permaculture design and she started pulling out my plants and replanting them in other places, and that was the beginning of the end for us living together. I took off to Turkey to pace a little bit of convergence to avoid the conflict with my sister back here in Australia. 

And look, I came back in time for Finn’s birth, and lots of things happened after that, and she found her way back to me when I was pregnant with my beautiful first daughter, Ruby, up in Broome. 23 months, I was down in, Bunbury, giving birth again to my second beautiful daughter here, Aisha. Ruby, Saf was at the birth for that, and it was a very unusual birth, because it was mostly full of laughter sounds more than anything else. 

 My sister is an odd-numbered Sagittarian, and she was putting all this pressure on me to hurry up and give birth to make sure that Aisha was an odd-numbered Sagittarian as well. And quarter to twelve, Asia was delivered the 9th of the 12th, 2010 and my sister approved and off she went and the nurse made an excuse to check on us every 20 minutes after that, which I thought was odd, but it was a city hospital, before that we were in Broome, so it hadn’t really clicked that there was a reason for that. 

 So, nine o’clock in the morning, I was called up to the paediatrician’s office and she sat me down and she made me a really nice cup of tea and she put Asha onto the table and started inspecting her in a different way that Ruby had been treated. So she asked me to stand up and I did and she out folded Aisha’s hands and showed a crease along here and a gap in her toes and her beautiful little ears and her gorgeous arm and eyes and she said, does Aisha look like anyone in your family to you? 

And I was like, yeah, she looks like me. And I thought that was a really strange, question because she does. And then she said to me, these are all indicators of Down Syndrome and your daughter has Down Syndrome. And she said, congratulations. She’s beautiful. And, then at that point, she spoke a lot more, but I kind of went into a fog. 

And I had that memory of the boy that I just spoke about growing up come flooding back. It’s like that had been stored in the archives of my mind for that precise moment. And I felt really uncertain of what this meant for Aisha and the world, and her world. And then I also flickered back to earlier in that night when Aisha was declared a girl, I thought she was going to be a boy, but she was a girl. 

And she was 23 months apart, just like me and my sister. And I thought, okay, so my girls are going to go off and they’re going to do this and they’re going to have the same adventures. And I managed to concoct this projection in my mind of what they would be like. So when that diagnosis was given, that kind of felt like it burst a little bit. 

 But I want to rewind to the words that the paediatrician, Dr. Barbara Leigh, said at the beginning, which was, congratulations, she is beautiful. And I really would love the, current medical model to use that for everyone that they give diagnosis to, because it set the tone for what our family has been like since then, and that’s something to celebrate. 

So, on that note, I’m going to ask Miss Aisha back for my note, thank you. And, this is a poem that was given to me probably on day two by the, gorgeous folk from, The WA Down Syndrome Association and a really big, giant, white manila folder, which was full of a whole bunch of scary medical facts. 

And this was the only thing in there that I could actually remember reading and understanding. It felt, it touched me. So, here it is. It’s called Welcome to Holland. It was written in 1987 by Emily Pell Kingsley. I’m often asked to describe what the experience of raising a child with disability is like. 

 To those who have not shared this unique experience and how to imagine it would feel, it feels like this. When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and you make your wonderful plans. The Colosseum, the Michelangelo, David.. I should say that properly, I’m an artist, anyway, the Gondoliers in Venice, you may learn some handy phrases in Italian, it’s all very exciting. 

 After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, Welcome to Holland. Holland, you say. What do you mean Holland? I signed up for Italy. I’m supposed to be in Italy. All of my life I’ve dreamed of going to Italy. 

 There’s been a change in the flight plan and they’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to somewhere horrible, disgusting or a filthy place full of pestilence, famine and disease. It’s just a different place. So you must go out and you must buy new guidebooks and you must learn a whole new language and you will meet a whole group of people that you would never have met. 

It’s just a different place. It’s a slower pace than Italy, it’s less flashy than Italy, but after you’ve been there for a while and you catch your breath, you look around. And you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy. 

They’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, yes, that’s where I was supposed to go. That’s what I had planned, and the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, very lovely things about Holland. 

So at the time, this poem meant a lot to me, and it still does. I think it’s really great that it’s in the folder. But I want to highlight that, I only really had one plan or dream, and that was, I always wanted to be a mother. Even how I planned my travel trips were often like, choosing options, throwing them in a piece of paper against a wall, and seeing what came back closest, and that’s often what I would do. 

So, not having a prescribed idea of what my life was meant to look like, or my kid’s life was meant to look like was really helpful. And I want to share a couple things that have happened since my beautiful girl’s, being born and, the projection and the concerns I had not really being valid. 

Ruby is just like my sister in how strong and brave she is. On one occasion, we were at a Mandurah play centre and there was a group of jerk boys and they’d honed in on Aisha. And Ruby came running in, put her hand forward in between them and said, stop, that’s my sister. And then they dissipated and they watched these boys and then they went on to do it to everyone else. 

 The only reason why they were doing it was because they were picking on all the kids that were little. It was an opportunity, for Ruby to shine. And, in turn, Ruby is a champion for her sister. She always claps the loudest when she catches a really cool wave. And Ruby does the same for her. Aisha, participated in wearable arts in Bandra. 

And Ruby helped her tie the knots that she couldn’t do. These are just a couple of examples of how they support and love each other. So I’m gonna, I’m gonna wind up how important, it is, the early years that I had with my own sibling, and the introduction into activism. And the introduction to being in lots of situations that I felt new to me because it created a resilience and an ability to advocate for my life now. And I see the girls doing that for each other and I wonder what lays ahead for them and what they’re helping each other set up into their future.  

So, this is a celebration of my sister and these two sisters here. So thank you for listening.  

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