For Beth, 4.4.88 – 23.10 23, written by her mum, Karen.
There were so many similarities between her birth and death. Told to leave her and put her into care or put her into a hospice. Told on my own first that she ‘was Downs’ then that she was probably going to die. Finally, that the people saying this thought they were doing me a favour, because she would be a burden!
So first let me clear this up. Beth was never a burden, she was a joy, full of mischief. Someone who loved life and made it a pleasure for everyone who met her. Only the ‘experts’ would say this; those people who usually had never had a disabled baby but felt that their own ‘experience’ gave them the right to say this. This expertise usually came from books – never from having a disabled child or adult in their lives. If they had listened to other families they would have learnt very quickly that when dealing with these ‘experts’ from schools, social services and whoever else felt that had some right to give advice, they were so wrong.
In fact the burden was having to deal with these ‘experts’ who could never really believe you wanted to keep the baby and that these babies were truly loved. This ‘burden’ from institutions never really goes away. From schools, social services, maybe doctors or nurses that you may deal with. Often trying to push their own, usually outdated, theories instead of listening to those families that needed support rather than interference.
There are 2 main reasons for writing this piece:
1 To prepare families for some of the problems that must be faced. They do not go away but change over time. Accept them and try not to let them become the main focus.
2. The most important reason, is to tell them of the joy that can come along unexpectedly. So many people have told me how much they miss Beth. Her laugh and naughty sense of humour.
Direct payments
Laughably the idea about direct payments is that this should enable those in receipt of them to make decisions about their own lives. It doesn’t actually work that way because you will be told to fit into some unwritten
agenda of whichever department you are dealing with. Written guidelines are rare and there is little consistency. I have been told many times not to talk to other parents about what their child may be receiving.
It seems in hindsight the objective is to make things as difficult as possible, and give little positive information. A good example of this was finding out a few years ago that I was able to claim the carers discount on my Council Tax as well as the disabled person. (It has another very antiquated title to do with mental capacity but this has never been addressed!) Where did I find this information? From the Martin Lewis programme and I was able to back date it! So much for Adult Social Services, the Carers group and Possibility Futures who never seemed to be able to help with anything but who were very quick to take money away. Hence the term burden as most parents felt that dealing with these groups would be a negative experience, never for the benefit of the person involved.
Nursery and Primary School
Beth loved life. From a young age she took part in so many different activities from Tumbletots to Guides. She loved dancing, singing and performing and she would always put herself centre stage and give the audience a cheeky smile. Interestingly all of these organisations never put any restrictions on Beth’s attendance. I would usually attend for the first few weeks and gradually withdraw. Beth was used to a degree of independence from an early age. She went to her local nursery and onto her local primary school. Beth remembered her primary school days with happiness.
Primary to Secondary School
But despite all of our hardwork and preparation things went terribly wrong in Year 7 and Beth become withdrawn. Having had a bad experience at her secondary school Beth this affected her for a long time.
Beth had been part of the drumming group Unified Rhythm since 2002 and loved performing as part of the group, on some occasions even conducting the group. The whole experience was uplifting as this fully inclusive group often took part in local events such as the Children’s Parade.
Once she began attending the Orpheus Centre she regained her confidence. She was in a world on can do rather than cannot. She took part in a number of performances during her 5 years there and also developed a number of interests outside of the world of performing art. She developed an interest in art, this started with making backdrops and props for some of the shows she was in. Her zeal at making a guillotine and the Queen of Hearts head for Alice in Wonderland was, for her, a step in a new direction.
Adulthood
In 2015 Beth also started attending Rocket Artist studios where she was able to develop her artistic ideas. During this time she has had work commissioned by Lush, she has had her designs printed and sold in the Rockets shop and sold her artwork.
After Beth left Orpheus she still carried on her performing with Brightonshed. They put on several successful performances at the Brighton Open Air Theatre.
Beth loved holidays, ice cream and swimming and frequently enjoyed holidays overseas. She has danced in Cuba, rode an elephant in Thailand and enjoyed swimming everyday whenever possible. Even when it was not possible for her to fly, we would find accommodation with a swimming pool so that she could enjoy herself. We also had a number of pools in the garden, ideal for cooling off, which she enjoyed.
Beth loved musicals. I think if she had been slightly younger it would have been possible to take a course but most of these came along much later. She loved Strictly and the Masked Singer, these became interactive as she would dance around the room singing at the top of her voice. She loved going to the theatre and many times would sing along loudly, many of the audience astounded at the fact she would be word perfect. Joseph, the Greatest Showman and Hairspray were some of her favourites. Often she would be at the front dancing and the cast would come down to say hello. We once met almost the whole cast of Cats in Eastbourne and also the cast of Hairspray recognised her when we went to the back door where the cast left. They were happy to have their pictures taken and loved her enthusiasm.
Abba was another of her favourites, and we saw so many tribute bands both in the UK and abroad on holiday. Usually she would end up on the stage becoming part of the act.
Another great love that came along later was cocktails. Although she did’t really like alcohol she loved a cocktail and luckily most restaurants and bars would have a mocktail version. It was part of her acknowledging her ‘growing up’ and wanting to be treated as an adult. That was of the reasons she changed her name, we named her Lizzie
when she was born but when she was 16 she wanted to be called Elizabeth. This coincided when she started going to college. Later when she was 25 she became Beth.
Design was her love. She would sit and colour for hours, which during lockdown expanded to bags, cushions, decorating pots for the garden and anything else that could be decorated. She enjoyed mosaic, decoupage and would add glitter and colour to whatever surface was put in front of her. She loved a visit to Hobbycraft or an arts catalogue, usually spending her money on more items to decorate. Items were sent around the world in lockdown. Thailand, Australia and wherever we had friends or family.
Beth started college in September for an Art and Design course. It was an adult course, not just for people with special needs, and she positively glowed with happiness. The teacher, although wary at first, soon warmed to her enthusiasm and began to appreciate what she brought to the group. I bumped into the teacher last week and even though Beth only attended a few classes the teacher still missed her.
Sadly Beth died suddenly on the 23rd October 2023. Leaving behind a world bereft of her laughter and joy of living. Lush has used another of her designs for Mothers Day 2024, which for me was a bittersweet
moment. Seeing her bright design in the shop but missing her so much.
The students from Rockets also wrote fondly of her bright, outgoing personality and have made 2024 ‘Be More Beth’ year to encourage others to follow their dreams.
Beth brought much happiness to the people around her. I miss her terribly. Although I have always been aware of her health problems she always seemed to get through each crisis. I retired in June last year and was looking forward to spending time with her. Beth was so excited that she told everyone she met. I feel cheated that we only had a relatively short time together.
This last picture was of a festival we went to in September 2023. She wanted to go to Glastonbury and this was a trial run to see if this could be possible. She really loved the atmosphere and was made to feel very welcome.