World Down Syndrome Awareness Month

Here is the link I promised you, it’s live and ready on the mumma love blog.

Before you head over I challenge you to think of three things you think defines someone with Down syndrome. If one of your three things was ‘happy’, ‘cute’ or ‘loves music’ then it’s compulsory reading!

A big thanks and hello to my new followers too. Thank you for being here in this space.

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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?