I was walking with Simone* to the shops so she could buy her groceries and do some window shopping*.
She’s generally pretty relaxed when we start out. I try to engage in entertaining small talk (yes, it exists) before lapsing into silence. I mix it up so that I’m not an annoying chatterbox or a painfully shy bore.
At some point between home and the shops, Simone can become unsettled. I’m not sure what triggers it (not for lack of trying to work it out), but she can go from walking quietly with her head tilted slightly upward to running full-force toward people. Once she does this, it’s my cue to run after her to try to calm her before she stands an inch in front of them and shouts. She’s never physically harmed anyone before, and it’s not likely she’s going to start now. But the people she runs up to don’t always know that.
Sometimes I can stop her. Sometimes I can’t. In the moments I can’t, my role is to remain super calm and assure people that it’s all good. Mostly, they’re cool about it. Simone’s been doing her shopping here for awhile now, she enjoys having this independence, and there are a few people who know and engage with her.
When we get back to where Simone lives with four other women with disability, I have to let a staff member know that she’s run towards people and shouted today. The senior staff member, Mariana*, looks serious.
‘Thanks for letting us know. We need to review whether we can let her keep going for these walks. Make a note of it in your case notes – we need a record of her behaviours of concern…’
At this point, my stomach lurches. Not because I have to write it in Simone’s case notes – this is a reasonable request. But, besides the power over Simone’s life that Mariana had the power and lack of understanding to exert, the term that made me feel like I’d taken a swig of acid was ‘behaviours of concern’, AKA ‘the most damaging term in the disability sector’.
The simple fact is, if Simone was not diagnosed with autism, even her most ‘erratic’ behaviour would not be called ‘behaviour of concern’. Of concern to whom? Does it matter how Simone is feeling or what she’s trying to tell people when she engages in this so-called ‘behaviour of concern’? Or is everything she does that doesn’t conform to societal standards packaged, labelled and stored away for case notes and restrictive interventions?
If Simone wasn’t diagnosed with autism, even her oddest behaviour would not be categorised and made clinical. It would generally be seen that, when she behaves in a certain way, there is a human drive behind it. But when Simone-with-autism-diagnosis behaves in a certain way, it is generally seen that there is an ‘autism’ drive behind it. I’m yet to learn the difference between a ‘human’ drive and an ‘autism’ drive, but seasoned workers seem pretty convinced there is one.
If you read my previous post You’re Not That Special, you’ll know why I find group homes for people with disability unacceptable. You’ll also know that this rationale extends to Special Schools, Day Centres and anywhere else that is specifically designed for people with disability to attend instead of supporting people to attend in mainstream settings.
Now, consider this. If Simone has spent her entire life from birth to middle age in segregated settings, her entire understanding and osmotic learning of social behaviour has been learned from peers who also found it difficult to engage in normative ways of expressing themselves. And, because she has autism, instead of going to the beach and the cinema for her sensory experiences, Simone might have had various ‘sensory therapies’ that isolated her further from her peers. And instead of nurturing her passion for music in a local band or learning an instrument, professionals – you guessed it – immersed her in music therapy.
In short, everything that was human and lovely about Simone became twisted into a (generally well-intentioned) mode of curing her of autism. But what was actually happening was that her ability to be herself was warped and on the way to becoming eroded. In a worst-case scenario, this heightened isolation and reliance on the service system may have seen her abused.
So Simone’s communication becomes less and less decipherable over the years, but her sense of isolation and frustration grows. The further the disjoint between her emotions and experiences becomes, the more she reacts. New people become increasingly more threatening to her, because every new person she’d met for the past 50 years of her life has either been a therapist or a person she didn’t want to live with but had to because of a housing shortage for ‘people like her’, or, perhaps, an abuser. But she can’t tell anyone, because she’s been on the waiting list for a communication aid for the last X amount of months/years (or at least, that’s what house staff have told the Community Visitors), but it’s all good because the regular staff members can interpret her body language and behaviour perfectly. The regular staff members could also be abusing her; who would know?
And so, Simone’s communication becomes an absolute mess of messages, relayed to people around her through bewildering and violent means. Like running up to strangers in the street and shouting in their faces.
Which is why I said earlier that the term ‘behaviours of concern’ made me feel like I’d taken a swig of acid.
So. Let’s take a look at what’s actually happened to Simone. The service system has broken her, rendered her communication beyond any reasonable recognition, then punished her for it. If she keeps trying to desperately communicate whatever it is she’s trying to communicate (and after 50+ years of what I’ve described, figuring out what she’s saying is not going to happen overnight), then Mariana will stop “letting” her go for walks, because *obviously* ‘her autism’ can’t handle the crowds.
The behaviour that actually concerns me is that of every person in the disability sector who uses the term ‘behaviour of concern’. We’ve pathologised, segregated and abused people with disability for decades, and when they respond in desperation, instead of recoiling in shock from the horror we’ve created in people’s lives, we turn to a very simple phrase that absolves us from our sins:
Behaviour Of Concern.
Make sure you put that in her case notes.
We might have to stop her going on walks.
That’ll fix it.
*Not her real name or circumstance