My Brother Changed My Life

My first university assignment this year was to make a short multimedia piece about someone’s passion. I created this video about my Grandma, Mary, and how knowing her brother changed her life, giving her a passion for those who are marginalised because they are different. The assignment had a five-minute time limit, but there was so much more material I could have included. Therefore this post includes both the video and the full story in written form with photographs. I hope it touches you as it touched me.

Here is the full story in written form, in my Grandma’s words . . .

Looking forward to having a baby brother

I was seven years old in 1953 when my brother Simon was born and I was really looking forward to having a little baby to help my Mum with. I really was! It was going to be so exciting! However, from the day he was born, it was quite clear that he had problems. I didn’t know what they were, and nobody really talked to me about it but my parents were on constant trips up to Great Ormond Street Children’s Hospital to see the specialists, and define exactly what his problem was and eventually, we were told that he was microcephalic. In real terms that meant he had a small brain and was not going to develop normally … and he didn’t. 

Institutional care: living at the Royal Earlswood Hospital

He was very frustrated and distressed as a little child. He would sit and whack his head against the wall, which caused a lot of upset to both his mum, and to me and my sister. Eventually, through intervention by the doctor and the local child welfare lady, it was decided that for his good, and for the good of the whole family, he should be given respite care at the Royal Earlswood Hospital in Redhill. It was a great big Victorian building where people of all ages and all disabilities were looked after, so off he went to Earlswood. He would go sometimes for a weekend and then, as he got older, he would go for a week at a time. We got used to him coming and going. He was still part of the family but not always with us. When he was three or four it was decided it would be better for him if he was to be at Royal Earlswood on a permanent basis. This caused a lot of trouble in the family. My father’s family practically disowned us because they thought we were doing something really wicked but I think in the long run, it was better for the stability of our family. It was certainly better for Simon because he got very specialist care and I have to say he was well looked after at Earlswood. He was encouraged to do different activities and develop friendships and he was very settled.

Care in the community

It came as a big shock in 1997 when Royal Earlswood closed and my mother was told, “Simon will now be put out into the community.” My mother was horrified! How would Simon ever cope in the community? However, it was explained to us that he wouldn’t just be left to sink or swim. He was lucky to be given a placement in a home called “Latimer” in Redhill which was owned by two of the nurses, Ram and Prima, who had looked after him at Earlswood and he was very settled with them. I used to enjoy visiting him there and talking with him and the other residents in the home. I got to know them very well. They were a motley crew, I have to say, ranging from people with Down Syndrome to ex-alcoholics to everything you can think of! It was nice to see him settled in a happy place, and it really was a happy place. They encouraged him to do activities outside his residential setting, which was very good. He had a very close friend called Michael who he shared a room with. He was adorable! Unfortunately, Michael died at some stage, which rather floored Simon, but he had to get on with it. He did get rather depressed after that. 

Getting to know Simon’s friends

He had a good life at Latimer and I used to visit him there regularly, particularly after my Mum moved to Cornwall. She was so far away that I was the main person to visit and to keep in touch with him because he was a very, very family-oriented person. He loved seeing everybody and he liked birthdays and Christmas time, always with the whole family. So that really fell to me and I can’t say it was a burden, but it was certainly a responsibility. It was great because I got to know all these other people in his home and they were lovely. It also expanded my horizons because really, up until then, I’d had very little to do with anybody who had a disability. I’m glad we call it that now. When we were children, my Dad told us that we had to refer to him as being ‘handicapped’, which I think was the modern acceptable term of reference but we wouldn’t say that now, would we? 

Enjoying days out together

Anyway, I met a variety of people, with a variety of disabilities and I suppose I got to love them in a way. I used to get quite involved with them when I went to see Simon. I also got very involved in taking Simon out when he was at Latimer. He loved eating out so one of our main excursions when I picked him up was to go into Redhill, into the local Wetherspoon’s pub, The Sun, where he always had the same dinner. He always wanted sausages and chips. Not very healthy, but never mind! He loved it! He always had sausages and chips. When we’d finished our meal, we had this little ritual. We walked down Redhill High Street, past the market and into the Belfry Shopping Centre and the next stop would be the Costa Coffee shop. We’d sit out in the middle of the shopping area and drink coffee, and he loved it. It’s all he wanted to do.

Knowing Simon helped me in my work

During my adult life, I worked for Croydon Council as a teacher, an education welfare officer and a part-time youth worker.  In 1984 with the advent of the Warnock Report, I accepted a teaching post at Gilbert Scott Infant School with responsibility for the intake of children with a statement of special needs. I looked after children with varying disabilities and also had a lot of contact with their families so my own early experiences helped me to empathise with them. 

I had always worked in mainstream youth clubs and when I was offered the opportunity to join the team providing for young adults with disabilities I was glad to accept the challenge. The club was called Special Blends. We met regularly every Monday evening with young people from varying backgrounds and with different disabilities. It was a joy to be with them, to see the world from their point of view and to gain insight into how they managed their lives. So many of them had had experiences of isolation,  ridicule and prejudice which only added to my concerns for those who are disadvantaged. 

Separation and death . . . but a joyful funeral

During the last years of his life, Simon lived at a home called Westhaven on the outskirts of Redhill. Though we were worried that the move would upset him, it was necessary because he needed a higher level of care due to his having Parkinson’s disease. He did have good friends there though, and settled in OK.

It was a shock and a great sadness when Simon died. We weren’t expecting it and unfortunately, it came after a period of separation from him caused by the Covid lockdown which was a great inhibitor because we were not allowed to even go and see him in the home towards the end. So he had spent several weeks before he died not seeing any of us, and I think that may have contributed to his end. I think he would have been very unhappy because Christmas was a time of family and he died in January so he’d missed all those lovely family celebrations that we were used to. 

Having said that, his funeral was a joy because we were able to celebrate his love of music and one of the main themes of his funeral service was his love of music. We enjoyed Cliff Richard singing Summer Holiday, which was one of his favourites, and he’d had a few good summer holidays. Then there was Gerry and the Pacemakers singing You’ll Never Walk Alone. Music was very much part of his life. He had a little microphone and a radio and he used to sing along with it when he had nothing else to do. 

Simon’s love of singing and dancing

He loved dancing and in Westhaven, they were lucky to have a wonderful guitarist, Anthony. He was lovely! He used to come to the home once a fortnight with his guitar and sing with them. It was the joy of Simon’s life and he would jump about and sing and dance even though, by then, he was suffering from Parkinson’s and was not very stable, but boy, could he dance when he was motivated! It was lovely to see him happy, which reminds me of his 60th birthday party when the whole family came. It was wonderful! There must have been fifty people there and again, Anthony came to do the music. Simon was jumping about and dancing the whole time! We’ve got so many pictures of him with a glorious smile on his face, dancing with various people. So I think music was the joy of his life and it helped us feel happy for him as well.

Caring for those who are marginalised

I cared for Simon throughout his life. It was not a hardship and through his eyes, I came to see the world through the eyes of people who are disadvantaged by their difference.

Knowing Simon changed my outlook on life completely.

Click on an image to view the gallery fullscreen:

Archive photos and text: Mary Innes
Photography and video production: Anna Roth
Music: Lydia Abrahams
Latvian translation: Marta Štila and Unda Pētersone

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