we are more than poo and wee

24 June 2020

I was talking to Kaitlin about these horrible revelations of Ann Smith's case on the weekend. She reckoned the people who continually abused their power were "scum". But I tried to point out that they probably aren't, they are probably regular people, with regular lives, who just saw these acts as benefiting them, while hurting no one. Essentially, because disabled people are dehumanised to such an extent, this potentially was seen as an unusual situation where taking a car and stealing property, and even embezzling money were no big deal and could be justified away. And even if they were malicious criminals, what they did was probably thought to be victimless. It is clear that Ann-Marie Smith wasn’t respected or even recognised as a person.

Almost everyone would say that mistreating a vulnerable person is unconscionable and utterly disgraceful, and they would place themselves on a righteous pedestal. I could take issue with this paternalistic attitude/ableist saviour complex here. But you know what? Beggars can't be choosers. We are abused, assaulted and murdered every day, and yet that mainstream outrage and moral high ground is nowhere to be felt in the places it would be most useful.

I can imagine how someone, who works in the disability sector would probably explain to others that the average person doesn't know how hard it is to do their job, how they have to get people fed, washed and dressed. they would explain that although most people are delightful to take care of, the work involves constantly dealing with all kinds of "problematic behaviours", with an excessive amount of bodily fluids ,and on top of all this, it's always a rush to fit in their notes before the end of their shift. How it's a thankless job, because most of the disabled people can't understand things and a few of them are "non-compliant" and often hinder the tight schedule.

Most of us would then nod and empathise with this [generic] hard-working disability worker, without even thinking about how the disabled people they were talking about are human. How for them, their whole lives aren't just a series of worker shifts, how their emotional behaviour is a response to something, how they are in an awful situation, where they are at the mercy of stressed carers to get their needs met. Being listened to/interacted with for 5 minutes probably is so rare , so when it happens, it's a great day. Most of the workers possibly do the best they can... But there's no question that disabled people aren't seen and dehumanised, their voices and opinions are not valued, so their suffering goes unwitnessed and therefore not felt to be really traumatic, so a culture of abuse is rampant and there's no immediate action taken.

To be clear, I have very few personal experiences like this. There's 3 that come to mind:

1. I went to a highschool with a decent and quite reputable support unit, where the well-meaning and experienced teacher aides' attitudes were very similar to this, they were constantly talking about toileting and feeding, and the time these things took (when a parent would send a message asking for their kid to eat more or for them to feed themselves, they would audibly complain that it's not realistic). I have no doubt that feeding ten-ish kids in 45 minutes was difficult, but at no stage did I hear them apologise for rushing people. They would patronise everyone without meaning to, and playfully tease us, which sometimes felt very dismissive. I went to that school for 3 years and I left believing that some students had an intellectual disability, who absolutely don't. People just didn't give them, or engage with, their communication methods (it possibly took too long), instead the aides just had whole conversations by themselves, imagining what students were thinking. And all the school taxi drivers I had were dodgy (not strapping people in properly, driving erratically, taking personal phone calls etc). I still consider this a relatively benign experience, but then again, after 3 years, I dropped out of school for two because I became so depressed, so make of that what you will.

2. In a psych hospital, during a very rough time, the nurses basically silenced me. Well they didn’t silence me, they just weren’t willing to engage with me when I was distressed – they walked away when I was typing, said they were short on time. They said I couldn’t teach other patients my sign alphabet. I am a thoroughly patient person with my communication and I actually had given the staff resources on AAC, but I wasn’t coping and I wasn’t being listened to. I screamed and cried in the privacy of my room, then even that was labelled as “problematic behaviour” and a “regression”, so I was ignored further. I felt so trapped.

3. I once gave a talk to the staff of a group home, I was so distressed at how many people were just sitting there, unengaged and even basic communication methods weren’t being implemented (and this was an organisation that was proud to show me their programs and facilities)

I am lucky these are just about the extent of my experience with institutionalised care, but every disabled person has these stories. I can tell you that even benevolent people can get things wrong and be abusive, they turn a blind eye, or are too enculturated to recognise oppressive actions . There’s always an invisible ableist slippery slope lingering in any disability organisation and no one is going to pull it up when its culture starts to slide under pressure, it’s disgusting. That slide is extremely EXTREMELY deadly. It is what slowly let Ann Smith, waste away.

I am reminded of the quote by Hannah Gadsby. “Everybody believes they are fundamentally good, and we all need to believe we are fundamentally good because believing you are fundamentally good is part of the human condition. But if you have to believe someone else is bad in order to believe you are good, you are drawing a very dangerous line. In many ways, these lines in the sand we all draw are stories we tell ourselves so we can still believe we are good people.”

Basically, the insidiousness of the abuse comes from ordinary able-bodied people, who think they are being charitable, but actually not valuing disabled lives just as much as their own it doesn’t just come from bad, nasty individuals…