in and out and in and out

Your favourite support worker over the past few years has just resigned. I’m sorry, Em. You rang me when you found out. You said: it’s ok, I’m used to it. And my heart hurt.

Not many of us would be happy having to invite someone into our lives and our homes. You welcome these people into your home, your life, your world, your family. To some of them, it’s a job. But we have been lucky and most have loved you just as much as you have loved them. Still, they have their own lives and just like that, they can sign out of yours.

No one else is there when they are with you and M. I can’t help but wonder, do they ever turn up late? Do they ever look at the clock and sneak out half an hour earlier than the roster suggests?

A long time ago I worked at a house where all the residents were Deaf as well as having mild intellectual disabilities. When I was being shown the ropes the support worker teaching me would stop signing and speak to me verbally in front of people when she wanted to say something about them (and what she had to say was not good, like: put them to bed at 8pm so you can have some time to yourself). I was appalled and signed back when I responded. She said: oh they can’t understand you anyway. Once I got to know the people I was supporting I discovered this was absolutely not true. The first night shift I had was a Friday. We stayed up late playing board games and I encouraged each individual to decide when they wanted to go to bed. Most of the workers at that house were fantastic. A few were not. As has been my experience everywhere I have worked in the disability sector.

So I do tend to be sceptical when it comes to people’s motivations.

Has anyone tried to brush you aside, making the assumption that you don’t understand or can’t make your own decisions? Sadly the answer is probably, but we might not ever find out for sure.

motherhood and Down syndrome

I have just finished writing a post for a lovely lass called Annie Love for Down Syndrome Awareness Month. It will be published in October at some point so I will check back in later on with the link.

I never really know where to start when I’m writing about Down syndrome and my experience of it as a sibling. All my life I feel like I’ve been forced into a position (of my own doing) to sugar coat things and combat all the negativity that surrounds disability. I never wanted people to think Emily couldn’t do things so I would scream positivity from the rooftops at anyone who would listen.

Now that I’m a bit older I feel like honesty is the way forward – acknowledging that things haven’t always been easy, but that doesn’t mean I would change anything about my life.

Becoming a mother has stirred something in me. Motherhood has taken me back to the very beginning… not just my daughters’ beginnings, but my own beginning too. Somehow parenthood and the pregnancy process has the ability to make you reflect on your own childhood, in ways which you never have previously. Pregnancy and the raw experience of it is where Down syndrome is created. During each of my three pregnancies I was acutely aware of the delicate nature of creating a human.

I was offered a number of tests during pregnancy, and it seemed like the world was trying to offer me the chance to style the perfect child. That if I found out that there was something missing, or if the child wasn’t exactly as I imagined, I could just start again. I can’t help but think, or hope, that if the community had a better understanding of Down syndrome it would help them to make decisions about their pregnancies, should the need arise. Without information and understanding a choice is not informed, it is made from a position of fear.

I didn’t have prenatal screening for Down syndrome during my pregnancies. I don’t think this is the right choice for everyone, it was just my choice. And given my lifelong experience with Down syndrome, along with a degree and career in the disability sector, I can confidently say it was an informed choice.

It worried me that during this process where I made decisions about which tests to take, and which to dismiss, I was given such little explanation of my options. I certainly wasn’t given any information about Down syndrome. I can’t imagine ever taking a test without knowing the reason why. I want to know: what am I trying to protect myself and my baby from, and why? I believe it is with information and understanding that better decisions can be made.

I hope that during the World Down Syndrome Awareness Month people can learn a bit more about Down syndrome – not just the flashy and the good and the cheerful and the “UP NOT DOWN!” and so on, but the somber side of Down syndrome as well. I hope people can learn to view people with Down syndrome as rounded, full and diverse individuals. I hope that with a little more understanding they can make better and informed choices during and after pregnancy. I hope it helps to dispel some of the fear.

Life would be so boring if we were all the same.

 

 

 

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.

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?