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.

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.

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.



the other day

Dear Emily,

I overheard you talking to my three year old daughter – your niece – asking her if you would make a good mother. Our relentless and nonsensical responses have rampaged you for years: Oh! But we need your help as an Aunty! Who would help us if it weren’t for you? You have moved onto asking the children, our attitudes proving unfruitful.

(She said yes, you would.)

Someone asked me:

Why can’t she be a mother?

And I didn’t know what to say. I have spent my entire life telling people what you can do, even when they think you can’t. I shove my placards in their faces and stand my ground when anyone tries to say otherwise. If they look at you the wrong way, I am there, reminding them, telling them: you can, you can, you can.

It makes me uncomfortable to talk of the things you can’t do. It makes me sad to think of the things you will never do.

All I can do is try to replace those things, hide them from your view.

I never want you to miss out.

I never want you to feel different.

But I know you do.

I’m sorry.

dear emily

Dear Emily,

I’m not sure where to start, or where this will lead. You know by now that I am writing about the two of us. You were quite excited when I told you, and had many suggestions for topics, situations and events I could include in the finished product.

While I write I keep wondering if I am writing for myself, or for you. A bit of both really. The more I write though, the more I begin to realise that until now, almost everything I have done in my life has been for you.

This time, I think this project is really for me. Do you mind? I hope you don’t.

Love your big sister,

Lucy xo