A day in the life of my group home

Morning breaks, often after a broken sleep with screams of people. Often house mates’ buzzers would have moved during the night, so they couldn't reach them. So they would scream, because they had no other way of getting help. But the support worker was in the office, so I had to call for them.

We shouldn't have to scream.

Then there are the nights where the one support worker can't do anything, and the screams would go on.

Some nights I would buzz for support, but the support worker would go to other clients because they buzzed more and the support worker wouldn't look at the number on the pager, and other clients didn't have their speech device on them in bed or didn't have one, so they wouldn't have any way of saying it wasn't them.

I chose to get up early because who knows what time I would get up. As it was, I would wait for ages for support, on the toilet or after my shower.

Often hours, buzzing once every 15 minutes. Some of the support workers said I buzzed too often, but so many times they would forget me.

The support workers would often say, why don't you sleep in, but the times

I’d tried I’d been woken up by everyone’s loud noises. Mainly the support workers talking loudly, laughing and slamming doors.

The support workers would insist on 3 of them at once getting me dressed speedily, which was distressing, and many, many things were forgotten.

They would also use this time to tell me things because it was easier than writing it down in an email or telling me afterwards. Many of the things they said to me I didn't agree with, and they would repeat them to me over and over again. Often they didn't allow me access to my speech device during this time and they would rush off.

I felt violated on so many levels.

These were people touching every part of me. People I didn't choose.

I would go out into the kitchen lounge area. Nothing felt like mine. There was so much stuff everywhere, stains growing on the carpet and lots of food going bad.

We were in charge of our own food which was only right, but we weren’t given enough support to do it properly.

The radio or TV, often both going. They had to be on all day, the same songs over and over, ads over and over, and yet more screams over and over again.

The heating on 30 degrees.

The smell of synthetic perfumes and dust.

I would eat my breakfast and just go.

Running away from the noise, the heat and abuse.

I could drive my power wheelchair, but not much else.

I only had one on one support for 6 hours a week. And by this point I felt I would get abused by everyone.

So I went alone.

I was constantly going out with too many clothes on because of the cold, but I got over heated when it got warm later in the day, leaving a rash on my face. I had a poncho I could take on and off, but the poncho didn't do much for me, as cold air got inside.

I had a doctor tell me once that as soon as I wet my pad, I had to change it right away, but there was no way I had access to that kind of support. Most often it would be only in the middle of the day or not at all, and most often support workers would be grumpy about it.

I couldn't get up when I needed to and couldn't go to bed when I needed to, or if I got to go to bed, I would have to stay there for the rest of the day.

On days I didn't have uni, I would go out and just endlessly wander. I tried to give meaning to every day, but it was very hard.

The group home was across the road from the train. The group home manager said, 'You will get used to the noise’. I would catch the train into the city and back, not knowing what I was doing.

I was severely sleep deprived, I fell asleep once driving my wheelchair and nearly drove onto the road. All that stopped me was some rails. I was so embarrassed, but also upset because I knew everything was taken away from me, even my ability to stay conscious.

All my emails for help went unanswered. I got replies, but they didn't help me. They were meaningless, to a very real situation.

Often I would come home as late as I could and go straight to my room. I felt isolated even in a home with other house mates. We were up in each other’s faces all the time and all competing for the same inadequate support.

Support workers would talk about everyone’s business, often with an unfavourable lens.

The support workers weren't bad people, it was like our living environment, the work environment was bad too. And this breeds bad feelings.

Every group care/group support situation I have been in has been the same, systemic neglect.

The heating would enter my room from the lounge and be too hot, so I would often leave my back door open to the outside to let some fresh air in.

But then support workers would use my room as a throughway.

I would have similar treatment with support workers when I was going to bed as I did in the morning.

I would watch stuff on my laptop until the tvs were turned off. Often they were off quite late.

Finally I could sleep.

Only to be awoken by screams.

I have since moved into an apartment of my own after 4 years of waiting.

Some of the same problems followed me until I was able to build my own support team.

It's always so painful to speak about these times, the trauma it has left me.