The World on Disability and My Home Before

This is my lived experience.

I have a disability, a movement disorder which impacts my mobility and communication.

I won’t be talking about fear here, fear isn’t something we can control. And that’s for a future piece of writing.

It is unfortunate that society as a whole is mostly infantilising toward people that are perceived as lower than themselves.

Most of the time we don’t realise we are doing it.

But we really should not be doing it, seeing other people as lower.

No one likes being infantilised, it makes you feel misunderstood in the most profound way. And literally it takes part of your self away because some of ourselves is in the eyes of other people.

We should see all people as just people.

We see people with a disability as lower.

People have done things to me like believe that it is OK to call me ‘she’ in front of me. “She is the cat’s mother.” Being called a ‘good girl’ and being patted on the head and so on.

All things you wouldn’t dream of doing to someone you see as big or bigger or holds as much or more power than yourself.

We, the disabled, should have the same power to shape our lives as anybody else, but society as a whole still lives by a power that is physical.

And again this lack of physical power leaves us vulnerable to being infantilised.

It is so subconscious.

And many people with a disability don’t realise they themselves are being infantilised.

I didn’t realise the full extent to which I was being infantilised for a long time. You know there is something wrong, something very wrong, but we as society don’t have the frame work, the language to express ourselves with.

‘Hay stop, stop it, would you please stop it, STOP!’

They would say ‘Stop what?’

Stop taking my human rights away.

You just want to scream. Then they say you’re being difficult.

I have had people joke to me, “I could just leave you,” when I was receiving their support. To say the least I didn’t find them funny.

My power has been taken away from me so much.

This imbalance of power can lead to people not seeing us, the disabled, as being able to make our own decisions, and there has been little choice in disability anyway and this in turn leads to us not being able to make our own decisions because we are not used to it. It is a vicious circle.

Again your words end up meaning less and your worries are dismissed by society, because you are subconsciously perceived as being less, and then because of this you are less.

It is all a vicious circle.

This is gaslighting, a form of an unintentional abuse perpetrated by many, saying that the things you say are not true when they are. Saying things are ok when they are not.

I am the kid in those shows where the monsters are real, but the parents don’t believe them.

True, there are disabilities involving the brain, but people make it worse, I feel, by taking away our autonomy by infantilising us.

Sorry that’s wrong for infants, but you know what I mean.

I’m going around in circles here, but it is impossible not to when you are explaining this infantilising behaviour and its effects.

We are less than we could be, because society doesn’t talk to us right, or doesn’t talk to us at all, and that is hugely damaging to a human being.

I am damaged.

This Infantilising behaviour is discrimination, but it is so subconscious that it is very hard or impossible to bring it forward to their conscious mind and say, “Hey, you’re discriminating against me.”

This infantilising behaviour can be and is reinforced by the group support environment. There is often little time to build a working relationship and what time you do have gets over written with their infantilising behaviour.

And there is little time for correction and often when you give feedback it is met with resistance. And often there is more than one person involved so then there are a number of people resisting you, they can form a group against your feedback and this feeds the behaviours more. It is literally too much to get over. They don’t realise they are doing it, but they are doing it.

The place I was living in before, or more importantly the support I received, was provided by one of the oldest disability organisations in Australia.

It was so much better than the nursing home that it took me a while to see the behaviours fully for what they were.

I was repeatedly talked down to and anything could set off a micro aggression.

Like I could see it was better to put my cream on first, but the support worker would aggressively say “I’ll do your cream later.” Little things like that day after day after day took their toll on me.

We don’t realise how important the little things are, till they’re taken away from us.

And I was always having to justify what I did, but I was hardly ever given the time to explain.

I was called rude, impatient and fussy.

And I was one of “the good ones”. They genuinely thought that it was ok to say things like that, but they didn’t understand how it was damaging. So damaging.

I wish they could have given me the benefit of the doubt when interacting with me. I have been misinterpreted as being hostile when giving feedback, with my techno voice or Dystonic body language. It hasn’t been nice and I’m actually really shy of anger, I find it very triggering.

Maybe it would have helped if I had told them my trauma history, but I wasn’t ready to and they shouldn’t have behaved like that in the first place.

They would see that I was upset, sometimes I’d explain it to them, but then I’d wish I hadn’t because they would not understand and they would just trivialise it.

I know that for a lot of people they can’t hold it in their minds and just be present with you. But their trivialising made me hurt even more.

A few of the support workers often didn’t support me right, like didn’t set me on the bed right and true again they were often under staffed, but then some again couldn’t be told because of the infantilising behaviour. They would see me as lower and therefore how dare I tell them. They didn’t use those words but the feeling was there.

A lot of the time I just shut down. If I was to get angry I would be labeled the angry one and also there are only so many words I can type in a day.

I would still try to explain via email, but it would sometimes be taken out of context or often there was no response and again I often didn’t have time because it would always mean more words than if I had been able to say it in the moment. The avalanche of words was impossible to keep up with. I was starting to get rsi and I have dyslexia. It was way too much.

They were sometimes saying they weren’t in it for the money. I have a real issue with people saying that, it takes any power out of your hands to determine your day to day life because you have to be grateful you’re even getting the support. And so often it is said in defence.

They would often get me dressed with 3 support workers, it was so confusing. They would all ask me stuff at once and I couldn’t respond to all 3 of them without my speech device. They saw it as being efficient, but I saw it as taking my say away. I later found out it was abuse, but so much of it was abuse.

Example: a support worker was putting my catheter leg bag strap on, I need it to be a certain tightness, and then another support worker was putting my bra on and I was going wait the bra straps have come loose. The one putting my leg bag on said in an angry voice ‘you need to concentrate on me’

I have one support worker at a time in my new place and it is so much better. It takes twice as long but still so much better.

Again I was often upset in the old place, but often it was suppressed. Again being socially disadvantaged you learn to suppress it, otherwise you become a screaming mess and are taken even less seriously, gaslighted.

And I do think I understand how it happens, as well as infantilising behaviour, people can get burnt out. The ones that stay are the ones that become blunted to emotions. That kind of environment isn’t fair on anyone.

Time and time again I would get great support workers and either they would stop coming or they became emotionally blunted.

So I don’t blame any of them. I don’t blame at all. This a deeply unfair system built on years of unfair systems, and the damage of that only serves the perpetuation of this system.

Infantilising behaviour isn’t fair on anyone including the ones that are doing it, because they are cutting themselves off from a whole part of reality.

But also I did fear them because my reality wasn’t their reality and lots of times that really really matters.

I eventually complained to management. They were always saying it is great to complain, but when I did it took a whole lot of explaining why I was complaining because what I was complaining about was not visible to many people.

It’s a tone of voice and a tone of voice is so hard to explain, but behind that tone is a misunderstanding of you, a misjudgment of you. And that misjudgment gets repeated day after day and can get repeated by others. And this misjudgment can become action.

This is what I mean by the group home environment.

One person convinced me that they would fix it by talking to all of the support workers, but then they disappeared slowly without doing anything.

I know I wasn’t making things up because a few of the others agreed with me, but they felt they couldn’t do anything.

Management seemed to put their heads in the sand.

I gave up after that.

Why didn’t you leave them you are maybe thinking? My only other choice was a nursing home.

I had been in a nursing home and it was worse.

To live somewhere you didn’t really like to be and knowing you had no choice because the choice is worse isn’t living at all.

I feared getting sick because that would make me even more dependent on home and the support. The constant noise and infantilising.

Isn’t living at all.

I have seen many things wrong with management.

I will only mention a few here.

I had asked the manager to help me put together my Disability Support Register (DSR) application to go on the National Disability Insurance Scheme (NDIS) early so I could move. He took ages and he wrote out the DSR differently only asking for a few more support hours. I didn’t want a few more support hours. Though it would have been handy, what I really wanted was out of there. They said but ‘you’re not going to get it.’ I had to go to someone from the Summer Foundation to get management to listen. But the manager only pretended to understand. They kept saying that having the NDIS was very hard. You had to keep track of so much more. They didn’t finish it and I ended up doing the rest myself. I was worried about getting it wrong. They seemed to know so much about the NDIS and maybe they did, but they didn’t believe what it could be, and it is life changing for me.

I was almost crying in a meeting I had with another higher manager. I was still impacted after 2 years. The previous managers said it will get better, but it hadn’t. They said it’s ok, we are here now. We will meet every week. I was teary with relief.

At the meeting they said we would have fortnightly meetings.

We only had one meeting.

Then they said ‘I'm sorry for any confusion but I didn’t promise weekly meetings. That would be a promise that I could never keep.’

I can’t trust anyone anymore.

They wanted to meet the highest NDIS standards on my old home so they could get the highest level of NDIS funding.

They were talking about the works for about a year, but in all that time they had no proper plans of where to house us while the work was going on.

I had sent off an email stating the many concerns I had about it. There was no reply.

At the end of last year I finally received confirmation of a new Specialist Disability Accommodation (SDA) flat, a place all of my own. Yay!

Only it wasn’t ready yet.

On New Years Day weekend, a support worker asked me when I was moving to my new place, because they were moving us out in February to start work. I didn’t have a moving date then.

Then the support worker said they were starting at the other end of the units so I didn’t have to worry, because they wouldn’t get to mine till June and I would be long gone before then.

Then on the 17th of January, the support worker told me that they had changed their plans, and I and the person who shared the flat with me would be going to Williamstown on the 4th of February.

Their excuse was that the builders hadn’t given them any notice, but we, the consumers of their support, should have been their number one priority, and therefore they should have told the builders to wait.

I had a meeting with the manager on the 23rd of January and I felt a bit better about it. I would be in a unit of my own and I finally got something in writing.

But on the 25th the manager and another manager came into my room without invitation and said they were not sending me to the unit anymore. I would still be going on the 4th of February and would be sent to a home, but they didn’t know where yet. Just that it was in the East.

I sent a complaint by email about the managers just coming into my room like that, and one of the managers came into my room uninvited again to say she was sorry. I couldn’t be bothered saying it again, I was going through so much stress already.

People told me don’t worry I will be fine, but they were doing the very thing I am afraid of – not acknowledging that my feelings are valid too, and really they were just trying to make themselves feel better.

This is gaslighting.

With only 3 days notice and 3 days before the 4th of February they sent me to their respite facility.

A place even more in need of a renovation, like the light often didn’t work in my room. People again screaming at any time of the day, screaming is the most triggering for me, and there was so much other noise at any time. I had to hear everyone’s business and there was even less privacy. And though the managers had said there would be, there wasn’t a buzzer system.

One of the managers said, “Treat it like a holiday.”

It couldn’t have been further from being like a holiday.

I tried to make the best of it, but yeah. I was taken back to the nursing home trauma.

It was very triggering and yet more stress, it slowed me down so much. I didn’t get much sleep and I got sick. I over ate because I couldn’t afford to be hungry and stress out at the same time, I couldn’t handle it.

The support workers were all new to me and showed infantilising behaviour, but I jumped in right away and they were kind of ok then. Yes there was something negative missing, which was the only relief.

I had out of necessity made videos of how to support me, which I could show the new support workers.

All the same, communication was very hard and I could see others around me having a harder time of it.

I don’t blame the support workers, they simply weren’t given the resources.

What management did was very wrong, beyond wrong.

And again really I don’t blame management either. They are so out of touch, because they have become emotionally blunt for the same reasons, their organisation is not set up to meet the needs of their clients.

But all the same it sent me over the edge, I couldn’t enjoy anything for an age, my tension levels were so high.

I am in a new place now, and while it isn’t perfect it is so so much better. For the most part I’m respected, and that is all I was asking for. I set up most of my own support and it’s a place of my own.

I think the most important thing you can do is to truly listen, and support us to drive the process of our lives.

You can do this by really seeing consciously, and therefore subconsciously, that there is no hierarchy.

It’s much better to see us as equals for that is what we are.

Updated 27 December 2021