This is a celebration of the life of my Uncle Paul and his achievements. It is also a reflection on what could have been better for him. I will endeavour to tell my Uncle's story with as much accuracy as is available to me.
Uncle Paul was born in 1953 to my Grandma, Florence and my Grandad Barney. He had a big brother, Dave, my dad, and would go on to have a little sister, Rochelle. The eulogy at his funeral service stated that he was starved of oxygen at birth, resulting in a lifelong learning disability. In 1953, it seems that hospitals didn't pay compensation for such things.
My Grandma fought to ensure that he made it home and continued to fight to ensure that he had access to education. There was little aspiration for individuals with learning disabilities in the 1950s, 1960s, and beyond. The story goes that it was my Grandma who taught my Uncle Paul to read.
Home was not easy for any of them. Barney had been in a near fatal motorbike accident aged 21. His head injury was so severe that he had a metal plate inserted in to the front of his skull. We know now that brain injuries result in changes in personality. This can be catastrophic for the individual and for their family. Barney's brain injury resulted in behaviour that was volatile and violent. I cannot imagine how frightening that must have been for everyone.
At some point Uncle Paul attended a residential special school. My son attends a special school. A few years ago, Uncle Paul asked me if T likes school. I replied, 'yes' and asked Uncle Paul if he had liked school. He replied, 'no'. His face told me so much more than that 'no' did.
Uncle Paul lived with a mentally unwell and violent parent. Inevitably, the earning potential of the family was reduced and money was extremely tight. My Grandad was Jewish and the family faced anti Semitic abuse. Uncle Paul faced additional discrimination as a result of his learning disability.
In spite of significant barriers, Uncle Paul left education and secured his first job. He worked at a Greyhound track looking after the dogs. He was given his own Greyhound to take home and look after. Uncle Paul always adored dogs and was something of a 'dog whisperer'.
He went on to work as a refuse collector. He was promoted to team leader. Years of lifting heavy, old style metal bins and emptying them into rubbish trucks without lifting equipment left Uncle Paul with painful chronic musculoskeletal conditions.
During his adult life, Uncle Paul loved travel. He was intrepid and fearless. He would go on holiday alone and make friends along the way. He was incredibly sociable. He spent time on a kibbutz.
He lived independently for a time but mostly lived with my Grandma and then with My Auntie. He spent the last months of his life with my dad and my stepmum.
As a result of musculoskeletal injuries, Uncle Paul was well used to tolerating pain and discomfort. In fact, he was hard as nails. If Uncle Paul ever complained about being in pain it would likely involve a missing limb or similarly severe ailment.
In March 2020, Uncle Paul received a cancer diagnosis. He was admitted to Ysbyty Gwynedd hospital where he underwent surgery to remove the cancer. This was a big operation. It was also the beginning of the Covid pandemic in the UK. The UK government was ill prepared and as a result so were hospitals. For good reason, families were unable to visit sick relatives in hospitals. Uncle Paul's learning disability was not recognised. More on this later. The two learning disability nurses covering the entire Betsi Cadwaladr Health Board region had been redeployed as a result of the pandemic.
Despite these challenges, hard as nails Uncle Paul made a good recovery and returned home to the supported living housing where he had been living since the death of his mum. He completed outpatient chemotherapy treatment, at the end of which, it seemed his cancer had been successfully treated.
In March 2022, after several GP visits to report significant pain - remember Uncle Paul is hard as nails - where he was given antibiotics and told that he was okay and there was nothing to worry about several times, my dad attended the GP appointment with Uncle Paul and finally, Uncle Paul was provided with an admissions letter and my dad took him to Ysbybty Gwynedd.
My stepmum and my dad had a peep at the admissions letter, like you do, and the tone of it felt to them like it suggested Uncle Paul was being a bit of a bother. The GP also requested that Uncle Paul undergo a dementia assessment. For a man who had a recent history of cancer and is an able verbal communicator, albeit whose speech requires the listener to tune in, it certainly seemed like an odd priority. This has been raised and discussed with the GP surgery.
It appears that although Uncle Paul's records show that in 1982, he disclosed to a neurologist that he had attended a residential special school for learning disabilities, he was never identified as having a learning disability. Again, in 2016, there is a record of a discussion about registering Uncle Paul as a learning disabled adult. Yet he remained invisible.
His care in Ysbyty Gwynedd was disappointing. Communication was poor and information was not shared with him appropriately. It is common for learning disabled adults to be infantalised and underestimated. There are complex challenges around identification of vulnerable individuals, individuals who may not self identify with a vulnerable group due to stigma, personal choice, and a ton of other reasons.
Uncle Paul was very clever. He was knowledgeable, interested in the world, well travelled. He was sociable and sought connection with people. He was very likeable. His speech required the listener to tune in to him.
When he was at the end of his life, drugged to the eyeballs on pain relief, he would have the TV on. His favourite shows were The Chase, Tipping Point, and a load of old detective shows. Drugged to the eye balls, and without opening his eyes, he would answer the questions on The Chase and Tipping Point. He would get every one right.
Uncle Paul was kind, thoughtful, hilarious, and loved dogs. Periodically, he would express racist and homophobic views that he'd quote word for word from The Sun, his newspaper of choice. His racism and homophobia were highly generalised. They never stood up to meeting real people because Uncle Paul had so much fondness for, and interest in, real people. As mentioned, Uncle Paul was kind, generous and thoughtful. On several occasions Uncle Paul was a victim of financial abuse. As a result he came to expect that people's time or friendship would cost him. And he trusted people.
The concerns around Uncle Paul's care and experiences have been shared. It would be comforting to hope that his legacy might be that systems to support vulnerable adults might be reviewed or even improved. He would like that. He cared about people.
There is always a risk that learning disabled adults are dismissed and reduced to their disability.
Uncle Paul was so much more than his disability. When I was a kid, I didn't know Uncle Paul was learning disabled. I just thought he was really cool and good at looking after dogs. And he was. He was very very funny too. He was still able to be funny and to make people cry with laughter right up until the end. When he was in unimaginable pain he still made people laugh.
I hope he is having a lovely time with Grandma, surrounded by dogs, drinking a large Bacardi and coke, and watching reruns of Benidorm.