Empowering Disabled Voices

Find out a bit more about the experiences and lives of the people we support. One of our values is to empower individuals to find their voice and ensure disabled people are heard.

During the Pandemic, we completed a project titled Covid Voices. The aim of the project was to capture the experiences of the pandemic through the eyes of disabled people and their carers.

We start with a piece from our CEO who brings an organisational perspective to the Covid Voices Project.

Daniel – CEO

“There have been a lot of examples of people showing care to one another. All those little acts of kindness confirm that this place really cares.”

“The team did an amazing job to set Paul’s Place at Home up in less than 24 hours.”

Barrington

“It’s a good thing to be interviewed about it because there’s so many things on your mind that you can’t talk about.”

“I might hear it back years from now and think wow – that was how I felt.”

Ben

“Without Paul’s Place, I think many people would have lost their minds.”

“Before I just thought that, as a disabled person I won’t get any help. Paul’s Place are there fighting my corner and fighting other members (service users) corner.”

Marilyn, Carer for Sam

“It was all evenly balanced – he would enjoy the company of friends and equally I could do my own thing. We could do things together – there was just a good balance.”

“They really hit the nail on the head when providing Paul’s Place at Home.”

The following story has been made anonymous to protect the individuals involved. Those involved still felt it was important to share their story as the details shared are intimate and shed light on the difficulties faced by carers, families and disabled adults alike.

Statistically, 60% of disabilities happen later in life. The individual in this story recalls what it was like when this happened to their loved one and how it affected their family.

After the accident, there were a lot of things I didn’t understand and one day I was told that this is a life-changing Injury. At the hospital, nobody can give you a concrete answer and I just didn’t understand what the end result was going to be.

He was left with a brain injury and lived in the brain injury unit for over a year. It was here where he had to re-learn how to do everything. He had no concept of time, where he was or who anyone was. It was hard. It was really really hard.

“I look back now, and I don’t know how I got through it.”

I’d have given up, I think. I would have just lied down and died if I stopped. So, I couldn’t stop. I find that in my life nowadays. I remembered several times thinking about giving up, but then you just look at the kids…and grandchildren and just think no – just keep going.

When he got out of the brain injury unit,

“I remember the girls had made a big banner saying, “welcome home daddy!” It was raining…and all the colours were running.”

When he returned home, he was having seizures, so the paramedics were often called. He also had regular visits from the district nurse because he was still in rehabilitation.

Back then, we were still sharing a bed. It was like living hell. There was no room, and he couldn’t get comfortable. Then one night the bed actually broke, and I had it propped up with books. I just really struggled. It was really hard.

Becoming a carer

Everything had to revolve around him. That was a big change, which was difficult.

After a few months of him being home, it suddenly smacked me in the face that, he didn’t know who his daughter was. He didn’t know his own daughter. That took months for me to realise.

They’ve sent me back somebody that was completely different. He didn’t look the same, he didn’t sound the same, he didn’t smell the same.

Before the accident, he was a real man’s man…you know? An old-school working-class bloke. Then when he came back, he was just a shadow of himself.

But at the end of the day, he is my husband – and if I didn’t stay and look after him then who would?

Life as a carer

It’s lonely, that’s what it is. It’s just having somebody to put their arms around you and say, “don’t worry – I’ll deal with that.” I married him when I was 18 and I thought I’d always have somebody to rely on. I’m nearly 60 and I was in my early 40s when this happened. Sometimes I feel like my life is over. I feel cheated. Like life’s done me over.

I truly feel like he died that day. I don’t feel the same. I love him like a child, I don’t love him like my husband.

“Life of a carer is putting somebody else’s wants and needs in front of your own. That sometimes feels like you don’t really matter.”

Life during the pandemic

The first lockdown I didn’t have any carers in. I didn’t feel safe with people coming in that had been in other people’s homes. So, I looked after him on my own. If we went into another lockdown, I wouldn’t take on the care by myself. That was exhausting.

How Paul’s Place supported the family

I wanted him to go somewhere which was more of a social place. Where he could make friends. As soon as we went, I was so impressed that this place even existed.

The Staff were amazing. They were just very real. They would talk to him not in a patronising way or anything like that.

“The attitude of the staff is – there’s nothing you can’t do. If you want to do it, you know what, let’s try it!”

They make him feel – for want of a better word…normal. That he can do things. That he can make what he wants to, talk to who he wants and do what he wants. He’s not pressured into doing anything he doesn’t want to do.

It gave me a break – because he was away. That gives me that breathing space I need.

“I do think Paul’s Place is really positive and there should be more places like it.”

After the accident, there were a lot of things I didn’t understand and one day I was told that this is a life-changing Injury. At the hospital, nobody can give you a concrete answer and I just didn’t understand what the end result was going to be.

He was left with a brain injury and lived in the brain injury unit for over a year. It was here where he had to re-learn how to do everything. He had no concept of time, where he was or who anyone was. It was hard. It was really really hard.

“I look back now, and I don’t know how I got through it.”

I’d have given up, I think. I would have just lied down and died if I stopped. So, I couldn’t stop. I find that in my life nowadays. I remembered several times thinking about giving up, but then you just look at the kids…and grandchildren and just think no – just keep going.

When he got out of the brain injury unit,

“I remember the girls had made a big banner saying, “welcome home daddy!” It was raining…and all the colours were running.”

When he returned home, he was having seizures, so the paramedics were often called. He also had regular visits from the district nurse because he was still in rehabilitation.

Back then, we were still sharing a bed. It was like living hell. There was no room, and he couldn’t get comfortable. Then one night the bed actually broke, and I had it propped up with books. I just really struggled. It was really hard.

Becoming a carer

Everything had to revolve around him. That was a big change, which was difficult.

After a few months of him being home, it suddenly smacked me in the face that, he didn’t know who his daughter was. He didn’t know his own daughter. That took months for me to realise.

They’ve sent me back somebody that was completely different. He didn’t look the same, he didn’t sound the same, he didn’t smell the same.

Before the accident, he was a real man’s man…you know? An old-school working-class bloke. Then when he came back, he was just a shadow of himself.

But at the end of the day, he is my husband – and if I didn’t stay and look after him then who would?

Life as a carer

It’s lonely, that’s what it is. It’s just having somebody to put their arms around you and say, “don’t worry – I’ll deal with that.” I married him when I was 18 and I thought I’d always have somebody to rely on. I’m nearly 60 and I was in my early 40s when this happened. Sometimes I feel like my life is over. I feel cheated. Like life’s done me over.

I truly feel like he died that day. I don’t feel the same. I love him like a child, I don’t love him like my husband.

“Life of a carer is putting somebody else’s wants and needs in front of your own. That sometimes feels like you don’t really matter.”

Life during the pandemic

The first lockdown I didn’t have any carers in. I didn’t feel safe with people coming in that had been in other people’s homes. So, I looked after him on my own. If we went into another lockdown, I wouldn’t take on the care by myself. That was exhausting.

How Paul’s Place supported the family

I wanted him to go somewhere which was more of a social place. Where he could make friends. As soon as we went, I was so impressed that this place even existed.

The Staff were amazing. They were just very real. They would talk to him not in a patronising way or anything like that.

“The attitude of the staff is – there’s nothing you can’t do. If you want to do it, you know what, let’s try it!”

They make him feel – for want of a better word…normal. That he can do things. That he can make what he wants to, talk to who he wants and do what he wants. He’s not pressured into doing anything he doesn’t want to do.

It gave me a break – because he was away. That gives me that breathing space I need.

“I do think Paul’s Place is really positive and there should be more places like it.”