Linda’s Story: this is for Simon - a guest blog for SASW

SASW’s work is supported by an Expert Panel of people with lived experience of receiving support from social work. But, as we see in this interview with Linda, our experts often provide social care as well as receive it.

Linda has been supporting the work of SASW and other organisations for many years as someone with lived and living experience of receiving social care. We wanted to hear more about Linda’s life and the experiences that she generously shares with us, so I arranged a date to interview her. What follows is Linda’s story.

Why did you think it was so important to tell your story now.

‘Well there’s been a lot of changes since I started working in social care back in 1970. I think that sometimes gets forgotten: that young people going into social work don’t know the struggles that went on back then. Perhaps we had a better connection to our history back then, before the internet. We forget how much things have improved, and what we have lost.

When I started, I worked with very young children in a children’s home which was run like a hospital. There was no ‘social’ in the care we were expected to provide. It was all about keeping the children as clean as possible. Just presentable. Looking back at it now, that is horrifying. 

I can remember one child living with Downs who was about five or six and very independent. These days he would probably be in a foster home. He would certainly have been educated and have had a very different life today.

So sometimes I look back at what we did in the past and I think, that just wasn’t right. Horrifying in fact. We weren’t asked to provide any care. Our job was to keep the children and the home clean and tidy. We had hardly any interaction with the children. But that didn’t suit me. 

I used to work with a young boy in that home who had very complex needs. He was 6 years old before he learned to walk. But we had a bond. I suppose I loved the lad, and I kept in touch when he was moved to a long stay hospital. Sadly, he died of dysentery not long after he moved. That was very common then. We saw lots of deaths. Nearly all of the children I supported died within two years. Those places had a reputation, and they were always short staffed.

Do you know, at that time the patients looked after one another as best they could, and I helped when I could. But at that time there was little health and safety or hygiene to be honest. Most of those hospitals hadn’t changed in years.

Back then there wasn’t much interaction with the children. They were laid on mats or occasionally held on a rocking horse, but there was no interaction with them. That was just so sad.’

Did you continue to work with children throughout her career?

‘No, I moved on to supporting adults in smaller units, but they were still sleeping in dormitories just like hospital wards. Again, our job was to keep them and the place as clean as possible. 

They were just very interesting people who were in slightly more comfortable surroundings with nice places to sit and such. But not much else. They couldn’t go and stay with their families, which was really very sad. I lost quite a few people there as well. That was just so common. We don’t realise how far we have come from the 1970’s sometimes.

There was one young lad I remember. He was about 16. He just shouldn’t have been in there. He just sat in the dining room, playing records. He didn’t have people his own age around him, and he should have. He just shouldn’t have been there. He should have been in the community, a small community home. These days he would be supported to live independently in his own flat. He would have had a life. He was such a bright light.’

You have described practices that had obviously been very worrisome for you at the time so why had you chosen to become a social carer? Was that what you always wanted to do?

‘Oh no. I wanted to be a photographer. I started when I was 19 but I was born with a disability myself. That made the heavy lifting that went with the job a challenge as time went on. But I found I had a lot of empathy, and I was determined to move on to something that made a difference. It was just one of those jobs that I can look back on and know I did my best. Despite it all that feels great, but at the time it certainly didn’t. It was hard work.

You described moving on to a unit in Leeds. Tell me what you remember from that job.

‘I remember Simon who was from a similar background to me and would have been about eight. He was in what we called a junior unit, preparing to move on to a long stay hospital. Simon was a lovely boy, but he couldn’t walk, and he had no speech. If that changed, he would be transferred to a residential school. On his very last evening with us he started to walk for the very first time. But it was too late. I was so angry that we hadn’t given him enough time. Just so, so angry. We let him down. But we could only do so much.

Nowadays Simon would have been supported to be in a mainstream school, integrated with other kids. Social inclusion was a long way away then.

At what point did practices began to change?

‘I think it was around 1972. There was an emphasis on education for the first time. That was very exciting. We were more positive about what we could do, and the general public were becoming more aware of what we were doing. It was a real step forward.

Did that change how you felt about the work you were doing or was it just a natural change?

 ‘Absolutely, it did both. We started to learn about different communication methods when before that was seen as a waste of time. Over time we could see that the children with no speech just needed the right tools. They were so bright. 

There was one I remember. She was 14, who had a screen with letters and characters that she could use independently to communicate. That was important. Before then we used cards to communicate so it wasn’t independent. She used that machine to tell us a joke. There was a group of us watching and we couldn’t believe it was happening. It took us all a long time to get over that because we felt so guilty. We hadn’t realised the extent of their capabilities. After that we really did.

We then got in to using pictures and symbols with the children to communicate and they learned so quickly. This was before computers and speech synthesisers so it was a real revelation of what we could do to support them. They started to have a real voice through education. This was after nearly 10 years in the care industry.

There were lots of transformations in care during that time. What was that what kept you going?

‘There were. We started to get a lot of training. Before that training wasn’t considered necessary. We were more like nursing auxiliaries. We started to get more respect. I moved on to working with older children then, and that was very exciting. They were getting taught important skills, and it was more common for them to return to the community then. They felt different and so did we. You need to remember in my first unit the children didn’t even have their own clothes. In the morning, we used to select whatever was available and dress the children in that. That is just awful looking back. There was no choice, no dignity. But that all changed in the eighties. The children could be children at last.

At that time the schools were still very large. We had 50 children at my second place. And they still had big dormitories, so no privacy. That started to change slowly, and they created smaller units where the children appeared to be far happier.

There seemed to be a transition in the late 70’s from exclusively residential units and schools to more of a combined model with children returning home at the end of terms. Was that reflected in your experience?

‘Yes. There were always lots of tears at the beginning of term. The children would return to the school with their parents and siblings. And their siblings went home. But they couldn’t. And they thought that was their fault. That was heartbreaking. But we tried to compensate with all of the support we could provide, physiotherapy, speech therapy and the like. We had a swimming pool and loads of other facilities. But it wasn’t like it is now, with the children attending mainstream school with all that support.

How did the disestablishment of those special schools and units in the mid 1980s through to the 1990’s feel for you and your colleagues?

It was the greatest time. The long-term hospitals were closing and it was, wow! It was such a wonderful thing to be part of. And then I really wanted to fly! I wanted to work in the community. I realised that I had been institutionalised like the children I was supporting. So, I bought a flat and starting working in a college that supported young people who had been discharged from long stay and other schools. The young people were in sheltered accommodation and had their independence. We were all so excited. 

And then we had more change when the organisation I was working with started to open sheltered housing for couples. That was such a big step. Our job was helping people live their best lives in the community and to use direct payments to take control of their own care. And for some to volunteer and to go into employment of course.

It was a funny feeling getting to that point. Kind of ‘letting them go’, the people we really cared for, for their next stage of life. When they came back to tell us they were having a ball and such a wonderful time. That was when we knew.

You spent most of her career in England. What had brought you north of the border.

‘I came up to work with young men in supported housing. Much the same as before but older lads who had been in long stay hospitals. Oh, it was so refreshing to see them going to supermarkets to buy their food. That was so unlikely not too long before. 

There was one time when a young man, Alex, came to me late at night and asked me for some help. He said, ‘Can I have a jam sandwich?’. So, I said, ‘of course you can. What kind of jam would you like?’. And his face! He had expected the answer to be no because that was what it would have been like before. And now he realised he had freedom. It was HIS home. We forget how much the system had disabled them, the institutionalisation that had affected me too. 

It sounded that you were part of the revolution in social care at that point so why did you leave?

It was a dreadful time for me. My father had dementia and my mother had breast cancer at the same time and were both living in Yorkshire. I left work to care for them. I still took on relief shifts with social care charities, but my own disability was worsening and, to cut a long story short, I never walked again. I was referred for an assessment and the Doctor told me I’d never work again. 

That sounds devastating. How did you cope?

I went back to my supervisor at work, and she said, ‘you will never give up’. And I never have. I got myself a personal assistant and I started to do work for the care commission as a voluntary inspector. And then I wanted to fly a little more. I started to do work for different panels and different organisations. 

I am hoping that before the end of my journey we can get more people out of hospitals and stop putting them in there for good. Let’s tear them down!

I still see so much injustice that if feels that we have gone backwards today. We need Governments to spend more on social care in local authorities. They can’t say there isn’t enough money. Remember Simon and remember the jam sandwich!

I see so many people who are struggling without the support they deserve. I am them and they are me. We must keep going, keep lobbying. But we must make sure we don’t grow a massive chip on our shoulders. That will make everything worse. We need to learn to walk together. Its all about heart and attitude.

I remember when I was working at the college there was a fire alarm. We were working with people living with different physical problems and learning ability. The teacher and I managed to get everyone outside quickly and calmly. Everybody was safe. And there I was without a coat, outside and shivering. But there was one young man, Mark was his name, one of the many who had recently left a long stay hospital. He could hardly speak. Mark came up to me and he took his coat off and he put it around my shoulders. I wanted to give him it back because I didn’t want him to be cold for one minute longer than he needed to be but if I had that would have really upset him. I am glad I didn’t because from that point onward he had the biggest smile, from ear to ear. 

That’s what I want our care to be like. Looking after one another. After all, that’s what it is all about.

After all that experience and the changes you have seen what do you hope for the future?

‘I would want anyone who has cancer and is at the end of their lives to be comfortable and to have the choice to not be stuck in a hospital. I would want people to be engaged with one another, understanding one another. I’d like to see the joy Mark had on everyone’s faces. Because you know there are some good things that can happen with a disability. There are many happy moments, and some awfully silly ones. We just need to live with one another, side by side. I want people to look after one another, just like Mark looked after me. I would like to see social workers being treated properly and being able to do the things for the people they support that they need. All that training and experience isn’t irrelevant. It is important and we should value them for that. They are too often the scapegoat for so many things.