What a bloody awful, pinched, pious word it is.

Thrown down from on high, it serves to admonish from behind a veil of gentility, a pointed correction pretending to be polite, because “etiquette”.

It’s mostly heard by parents of toddlers, children and teens as other, older people caution them about their offspring’s behaviour.

For people with intellectual disabilities it’s used against them well into adulthood.

Two things have really thrown me this week.

Both involving students to whom I teach performance skills.

In all my classes we have a story chair, where people can come and sit in front of the class and share something about themselves, their week, their aspirations, something that’s happened to them, last week or ten years ago – whenever or whatever.

It serves to increase confidence in story telling, to bond the group as we learn more about each other, to generate ideas for scenes we can dramatise.

But mostly it’s an opportunity to be heard. Something often missing in the day to day reality of people like my daughter and my students.

On Tuesday I heard from a student, an adult woman, that she was upset because she might be moved. Moved from her residential home of the past 28 years, where her friends, her classes and hobbies, her life has been. She was very upset as she didn’t know why, and didn’t want to go.

I was concerned about what she was saying and her lack of understanding around it, so after class asked her again about it, privately. She cried, and told me she wished her advocate would “back off” and thought if she said nothing, nothing would happen and she wouldn’t have to leave.

I took her to the social worker on site. And we met together, also with the manager.

It turns out this adult woman, left at an orphanage in childhood, has a boyfriend. It’s not a sexual relationship, they don’t share a house and do nothing more than hold hands and feel special.

She also has a legal guardian who doesn’t think it’s “appropriate” for her to have a relationship, so is moving her somewhere else.

From her home of 28 years! Her friends, her hobbies, her boyfriend, her stability, security, sense of belonging – her happiness– all because someone else thinks it’s “not appropriate” for her to have a relationship.

I left it in their hands as they reassured her she could tell her advocate/legal guardian how she felt and what she wanted and that they were listening, that we were all listening, that she was allowed to speak up.

The second thing that happened was with a different class.

We’d been on a field trip to film a music video (I know! Our very own song, too!) Many of the students are very independent, bussing to and from class, socialising at the Mall after class, making plans, hanging out.

On our way back to base, we pass the Mall (it’s very close) and a student from my car asked to be dropped off. She’s super-independent and capable, so that was no problem.

As were were traveling in convoy, my colleague also stopped, and one of the students in his car said he was meeting him Mum at the mall, so could he get out too.

My colleague checked with me, I asked the young man directly and he looked me in the eye and assured me, most emphatically, that yes, his Mum was meeting him at the mall too. I told him, “Ok ; I’ll ring your Mum as soon as we get back to base and tell her you’re at the Mall already”

He gave me a thumbs up and got out of the car. We drove to base, where I rang his Mum, who said “NO! He’s getting picked up by a Support Worker today”

I raced back to the Mall and the next three hours were absolute hell as his Support Worker, His Mum, my colleague, Mall Security and the Police searched Malls, addresses and streets.

After three hours we was found by a Policeman. He’d walked miles and miles and was nearly home. He hadn’t even gone into the Mall.

It was incredible traumatic. His amazing Mum didn’t blame us in the slightest; reassuring us she knows how convincing he can be.

(Nice as she was, it was totally my fault)

We should never have believed him. But we did.

Lessons learnt for sure.

Last night I rang the mother of the other student I dropped at the Mall. She’d seen us looking for her classmate, had seen how upset I was, so I wanted to let her know he was fine, and I was fine and everything was fine.

This other wonderful, kind Mum also reassured me that it wasn’t my fault (although ultimately of course, it still is!)

But we Special Needs Mums are pretty good with each other.

She told me that despite her daughter’s apparent abilities, she was still good at seeming to understand, appearing to cope, saying what she thought people wanted to hear, tricking people into letting her do things, getting her way.

She told me “They get told all the time, they have rights too. That they can make their own decisions, they can be independent. They believe it. But sometimes, their judgement isn’t good. It’s tough. It’s really hard to draw that line because they’re convincing and they’re convinced.”

Yesterdays story had a happy ending.

So I was hoping the other would too.

But today I returned to story one, my adult female student with a boyfirend, to find it’s over. She’s being moved tomorrow. I won’t see her again.

She has found the first person in her life who loves her more than anyone else in this world – and her legal guardian is moving her away from everything, because she doesn’t think it’s appropriate she has a boyfriend.

Everyone is devastated. Tomorrow she’s moving out of the only home she’s known for 28 years against her will and for the most snivelling of reasons.

What can I possibly take away from all this? Is the idea of people with ID having rights just a piece of glib mission statement?

Is it OK that we can tell people they have rights but then overrule them, because we think we know better?

It’s a hot sticky mess and all I know is I’m a parent, a teacher and a friend of people with ID and with each of those roles comes a slightly different perspective.

But the notion that someone thinking a grown woman with intellectual disability shouldn’t be allowed to have a boyfriend with whom she holds hands and is told she’s loved because it’s not “appropriate” is depressing.

And the fact that her life disrupted and her happiness shut down because of it is shameful.


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