Draw a circle, I said. It was in one of those classrooms where many people drew circles and talked about things like personal space and public and private behaviours and how to make a cup of tea.
He dutifully drew a circle.
Now draw another circle around it, I told him. He did, and I filled in the gaps, drawing more circles – family, friends, paid support, others. That’s what we were taught to do, to help people understand their boundaries. Paid support workers won’t hug you, but they will take you to your day programme. Friends and family live in the same circle, and they will hug you as much as you want.
He looked at me. ‘Why are they in circles?’
That’s the question that keeps coming up. Who else in the world has areas firmly delineated by ‘professional boundaries’ when it comes to your day to day life? How can you compartmentalise your whole life into little circles?
There’s a show on television at the moment called ‘Dream House’. It’s a reality television series about three young people who are living in a group home – it’s been roundly criticised by the disability sector and has divided much of the disability community.
The housemates are young and presentable and capable people with an intellectual disability or autism. They are being supported by ‘buddies’, mostly TAFE students who are volunteering their support to the project. And there, again, the issue of ‘boundaries’ raised its ugly head – a young man with autism flirts with one of the ‘buddies’, another housemate goes to hug her. She flinches away as if a cockroach has crawled on her, unsure what to do. Laughs off the flirting, but raises it as a ‘behaviour’. A ‘behaviour’, and who can blame the young man? She is busty and pretty and has a lot of mascara on her long eyelashes and a flower in her hair. She is laughing and joking and smiling winningly into his eyes. He is a good looking lad but his affection is articulated in the way that is usual for him, a young man with a disability. Something different, something that she and others aren’t used to, something outside professional boundaries.
Outside the circle.
Those ‘circles of support’ that we keep drawing, over and over again. Drawing as though we’re reinforcing the lines and boundaries, for all of us. You must stay there, as client. She must stay there, as support worker. Here is the disability sector, and this is your world. And out there in that tiny circle to the left is ‘mainstream’ or ‘community’…you can travel there, but you must travel within your clearly delineated boundary, not quite belonging.
Two of the housemates were teasing the third, an attractive young woman who has a disability. They call her ‘darling’ and ‘sweetheart’ and she laughs and calls them ‘ratbags’. And later, a serious-faced staff member sits the men down for a ‘chat’ – you can’t call people darling or sweetheart, that’s what you call your girlfriend, not your housemate. You cannot hug, it is not allowed. And the man who has ‘inappropriately’ hugged another looks wearily at the camera – he has just knocked off work – and says, ‘I can’t help it. It is how I FEEL.’
I stop watching the show as it cuts to the ‘disability specialist’, who solemnly tells the world that people with Down Syndrome are ‘very friendly’. And I wonder how that stereotyping would work for a number of people with disability I know, including myself.
If you have Down Syndrome you are friendly, and ‘always happy’. If you have a disability that is physical or sensory, you are inspirational or a victim – vulnerable, weak and a tragic object of pity. If you speak up, you have a chip on your shoulder – you’re twisted and bitter. You can’t be a sexual being – unless your partner is a pervert or a martyr – and you certainly can’t participate in everyday life like the rest of ‘us’. Clown, victim, inspiration, burden and outcast.
I’m beginning to think that the way that we write and define those same ‘circles of support’ are sometimes the same way we write those stereotypes – with indelible ink, in negative attitudes and long held and preconceived misconceptions. With the same pen that we write policies and procedures designed to fit the best interests of the workers or the agency, the same pen we write both person centred plans and risk management with. You can’t define relationships, no matter how much you want to clarify boundaries. You can’t compartmentalise lives, because we are complex and intricate, all of us.
Six weeks before my mother died, her support worker came to me.
Here’s my phone number, she said. I’m worried about her. I know you’re worried about her, too. It’s against the rules, but here is my phone number. Ring if you need me, and I will pop around. I know you’re two hours away, but I am just around the corner.
I’m in a little trouble at work, she told me. They only let us drive clients nine kilometres away from their homes, but there’s just not a lot around here, so I drive her to Fremantle, and they found out. Sometimes, she confessed, I take her to my house for a coffee. And the gratitude must have been shining in my eyes for my mother, who had spent two years being pushed around shopping centres by disinterested staff.
It was that support worker who told me that she’d fallen – Mum wouldn’t tell anyone else. I’m worried, she said. Nothing I can put my finger on, but she’s just not herself. Hard to wake up, and I went around to check on her after work. I’ll phone later. And it was that call at eight o’clock at night that led me to take my mother to the doctor, then hospital, then a palliative care facility, where she died.
She broke the rules, that support worker. She stepped outside the circle. And for that, I will always be grateful.
I’m no longer interested in those circles, truth be told. I’m interested in the spaces between – in investigating the concept of community and how communities are formed, and how and more importantly why they support people well. Looking at where people have stepped outside the circles to the spaces in between, rupturing the old lines that have been drawn forever, pushing fresh ideas and new ways to include people. Occupying that same mysterious space that is called ‘community’ or ‘mainstream’, resisting the spaces that have been appropriated by ‘services’, investigating the spaces in between.
We need to think outside the circle.