a coffee

You rang me at work today, “Hello,” you said, “I’m around the corner, would you like to come and have a coffee with me? Uh.. I’m not meant to be at work today and I don’t really know what is going on.”

You recently got a new job at a(nother) coffee shop, very conveniently located within walking distance from my office. You have been routinely arriving an hour before your shift begins, but your new boss assures me it is not a problem. Right on cue – it was 10.34am – you don’t start until 11.30am. But on this particular day, you weren’t on the roster as your boss thought you were still on holidays. Hence, the phone call.

I left my desk and walked down to meet you and figure out what was going on. I found you sipping a cappuccino outside under a white umbrella. I spoke to your boss and she explained you would be on the roster next week. She felt terrible you’d travelled all the way on the train to come to work, but there was nothing much she could do as she genuinely didn’t need you that day.

You took it all in your stride, you’d called me, Dad, and one of our other sisters and had us all lined up to have coffees with you one after the other rather than get on the train and go back home again.

I love your initiative, Em.

potatoes

My eldest girl was sick and you were concerned. It was just a cold, I assured you. I could hear the worry in your voice. You wanted to come over and help me, you’re an Aunty, it’s your job, didn’t I get that? You didn’t understand that it would take me over an hour round trip to pick you up and bring you back here, and that the kids needed to sleep. And that I was actually fine and just wanted to go to bed.

Finally, I convinced you that you could help me more by being on the other end of the phone.

Your parting advice: “Potatoes. Feed her potatoes.”

sister to sister

The phone rang and it was Emily. After all the usual formalities she said: “I want to talk to you, sister to sister. I want to talk to you about sex.”

I sat forward on the couch and rubbed sleep from the corner of my eye. “Yes? Ok. Great. What do you want to talk about… about sex…?”

I won’t go into the rest of our conversation, as it was private – sister to sister. But it has got me thinking. About sex. And about disability. The majority of the time that you hear about disability and sex or sexual behaviour, it is about inappropriate behaviour, it’s about abuse. It’s about prevention – prevention from having children, from making mistakes, from doing anything deemed outrageous. Meanwhile, we all go back to our beds – or other destination – and have a whale of a time.

So. Where is this going? I want to know who is standing up for my sister. Who is out there, educating her about how to give and gain pleasure with her partner in a way that is respectful, loving, intimate and kind? Who believes that she has as much right to a loving and pleasurable sexual relationship as the next person? Apart from me, of course. Because I hazard a guess that in some families, she might not have someone like me that she can easily turn to for responsible and open-minded advice. Just a guess.

The number of times that someone has responded with an awkward slash strangely curious: “So… do they have… SEX?” when I tell them that I have a sister with Down syndrome who is MARRIED (gasp!) is unbelievable.

I have to bite my tongue, hard, to prevent it from spitting back: “I don’t know, DO YOU? Tell me all about it!”

What about you? How do you support your family member/friend/other with an intellectual disability to develop healthy sexual relationships?

I’d love to hear your stories.

a tear for you, a tear for me

I just hung up the phone from Em. I rang her for a little Sunday night chat, to see how she was. I should call her more. I’ve been thinking of her a lot this weekend, during all this. Of what she has brought to my life, of what I have brought to hers. I didn’t mention yesterday that during some of the coverage about little Gammy on a major television station, some footage was shown of my sister dancing with some friends. All of a sudden, there she was, smiling, performing. In the context of everything I was shocked. What has she got to do with this? How is this relevant? I texted her a photo, she didn’t know anything about it.

She told me just now that she had cooked her and her husband chicken drumsticks for dinner and some pasta salad. She said she couldn’t get the chicken right, and it was pink on the inside so she couldn’t eat it all. We spoke for a while about a better way to cook it. We said some I-Love-Yous and Goodbyes.

I cried when I hung up the phone. I am crying for her. Trying to cook a chicken drumstick and just not able to get it quite right. Like so many other things she tries and tries and tries to do. Trying so hard and missing the mark, ever so slightly. Sometimes, it’s not fair.

in light of yesterday

I was thinking overnight about this little boy. How in this day and age people think it is ok to farm children and pick and choose which ones they want, rejecting the slightest imperfection.

What a sad world we live in.

We are shaped and moulded carefully by those around us. The push and the pull of this influence and that. We are tumbled around like rolling gems until ever so slowly the final product emerges, beautiful and shimmering yet different to all others. I find it incredibly disheartening to think there are people out there who think they are better off being surrounded by clones of themselves, as if this will somehow enlighten them, as if it will please them.

How much they will miss out on. How much they will lose.

 

healthy

It was years ago, when we were all still living at home. I was sitting on the arm of the couch when I heard the key turning in the lock and she walked in the front door holding a scrunched up brown paper bag. I could see the yellow tendrils of an evil logo creeping out ominously from beneath a fold of the bag.

“Em, you know you’re not meant to eat that,” I said, exasperated.

“But it had lettuce in it!” she replied.

“Not everything that has lettuce in it is good!” I quipped back.

“It had meat too? And other things, like vegetables. It’s healthy.”

“The bread is full of sugar.”

“What?” She glared at me as though I’d just told her she had purple hair and a mouse living in her eyebrows.

I paused and looked at her. Her hair was cut into a bob, soft brown wisps framed her face. Out of all four of us, she was the only one with eyes the colour of a calm late afternoon sky. A cacophony of striking grey and pale, pale blue overtones. If you looked closely the two colours scissored each other around her deep black pupils; opened wide, sourcing information, welcoming it, questioning, wanting.

I was tired. She stood there, demanding an explanation. How could a chicken and salad sandwich be an ok thing to eat, yet a roll with meat and salad from a junk food restaurant be bad?

The world loomed up around her, tricking her, manipulating her, teasing her at every turn. When she goes to buy a tub of yoghurt, and it says NO ADDED PRESERVATIVES, how can you explain that there are probably preservatives in there, yet they haven’t ‘added’ any extra? When it says LOW FAT how can you explain that it’s full of other crap in order to make it taste good sans fat? When it says GLUTEN FREE, who is going to take up the challenge of explaining that if it is food that is naturally gluten free, then it’s probably ok, but if it is gluten free food pretending to be something that has gluten in it, then it will be chock-a-block full of shit in order to make it taste like the gluten-full food it is imitating rather than the fake thing it is!?

It is hard enough for the rest of us to understand this, to process it. Why does the world insist on making it harder for her?

a family gathering

We had a family get together yesterday for all the birthdays we have in May: mine, Gramps, my step sister and my step dad. Emily and her partner bought me a birthday present while they were in Bali and gave it to me yesterday. It was a small box covered in floral material. Inside was a selection of tiny perfumed bottles – the ones you have around the house with the smelly sticks sitting inside to refresh the air. Only this present was minus the sticks that go inside the little bottles. It made me smile, though I’m not sure now what to do with it. As I mentioned before I have trouble letting go of the trinkets you collect for me. So I’ll just say thank you.

This particular family occasion was exciting as one of our (many) Aunties was announcing her pregnancy. It wasn’t until later in the night that it came out that Emily (who had been answering the door all afternoon) had been telling people almost before they stepped foot in the door, and the majority of the family had to feign surprise when they were told a few moments later.

We laughed. Although, when you did this same thing to me the day I was announcing my first pregnancy a number of years ago, I was really pissed off.

on documenting

Last night at my writing group we did an exercise where we had to write down a scene with action that related to our individual projects. Something that illustrated the conflict in our stories.

I sat and sat and sat, twiddling my pen while looking around the room at the tops of everyone’s heads. How can I begin to describe what it’s like to have a sister with Down syndrome? We ate breakfast. We went to school. We fought. We grew up. We left home. We got jobs. We got married. Where’s the action in that? The conflict? The interest?

Why would anyone want to read this?

These are the questions I mull over.

back in town

You’re back in town after a holiday to Bali. You came home laden with gifts for everyone – something we usually raise a few eyebrows at… what will we get this time? Over the years I’ve collected many pairs of glitzy earrings from you, even though I don’t have pierced ears. But we all smile and laugh and on we go. Usually I can’t bear to throw them out, and will often find your bits and bobs in various boxes around my house.

I arrived at Mum’s on the weekend for a family get together. You handed me a bag with presents. A gorgeous pair of floral flowing pants for me – and two matching pairs for my daughters. (And the third season of a teen drama series for my husband… haha) No earrings! And no flashy beaded bracelets or gaudy necklaces.

Thank you. You’re always full of surprises.

 

 

a phone call

Mum called me from Emily’s house the other day. Em is going to Bali with her husband and mother and father in law in a few weeks. I think it will be about her fifth trip to Bali. And yes, Em is married, her husband also has Down syndrome. WHAT? I hear you cry… Another story for another time. This time they will be travelling with her in-laws, however on previous trips they have done it on their own, with someone carefully navigating them through the airport on this end, and another meeting them on the other side. I remember it being a time of stress due to airport regulations, and how far you could get them through the system without having a ticket yourself. It was somewhat awkward, picking our way through red-tape, but they did it. And we all felt such a sense of nervous satisfaction.

So Mum rang me and asked me if I could go to Em’s house the night before she flies out, to help set out some comfortable clothes for her to wear on the plane and make sure she has the right things in her bag. I agreed and arranged a time and wrote it on my calendar. Usually I would not blink an eyelid at this. But with all this writing and thinking about her, it made me wonder what it would be like if she didn’t have Down syndrome. If, instead of me driving over to her house to help her choose a pair of tracksuit pants and a loose fitting t-shirt, and laying them carefully on the end of her bed, and checking her bag to make sure she had the right things in her carry on luggage, if instead of that she was just heading off to Bali, minus the DS and the BS. That people didn’t raise their eyebrows in shock every time it was mentioned that she was going to Bali with her husband.

Maybe she would be calling me to catch up for a coffee before she left, maybe popping over to visit me and the kids. Maybe she would have kids of her own, and we would lay together, feet touching on the couch while we drank a cup of tea and spoke about the trinkets she would bring us back, with a few kids milling around with some lego on the floor. Maybe we would all be going together, we’d drink glasses of wine by the poolside while our husbands swam with the children. We’d chat about our parents or the weather or the markets while we gently dried our babies hair with fluffy hotel towels.

Is that what it might have been like for us?

Over the years we have always steered away from wondering about this. Occasionally on long drives, or up late at night on holidays, we would wonder if there was a pill that would take away the DS… would we want her to take it? 

Of course we say no. No way. Not now. We love her so much, and she would be gone. Replaced by a stranger. Some stiff 30 year old woman who wanted to work a corporate job, who didn’t like us, whose favourite food was spaghetti marinara, when we know that she is meant to love chocolate ripple cake. It would be all wrong. But also, we would be different. If I shave away all the parts of me that have been made, moulded, shaped, and carefully manicured by her, would there be anything left of me?

Do you ever wonder about this?