“I was just a burden, life wasn’t worth living”
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It’s hard to sit in someone’s living room and hear them regale stories of how they wanted to kill themselves, but for John, aged 48, this is his reality.
John lives alone in a privately rented flat in Shrewsbury, and battles with Asperger’s syndrome and a number of other personality and learning disabilities. Asperger’s is a form of Autism, with the condition affecting behaviour in social situations, specifically communication, imagination and interaction.
More than one in every 100 people in the UK suffers with some form of Autism, and as with John the condition isn’t always immediately visible, but can still have a huge impact on daily life. John could be considered an example of someone who has ‘slipped through the net’, who because they were not physically disabled has been ignored.
As I sit opposite in his modest living room, decorated with golden wallpaper and worn furniture, John is happy to share a harrowing story from his past. Several years ago, John’s parents died, leaving him alone. Unable to manage his house or himself he became overwhelmed and began to hoard various items, including a collection of eviction notices. This was only the start of his issues.
Despite being quiet and keeping himself to himself, John’s neighbours often complained about the noise from his TV. “I never really went out because of my arthritis, it was hard to get about. I would just sit in my house watching TV, as everything piled up around me.”
What astounds me is that John’s TV isn’t a 46” HD LED with top of the range subwoofer, but a 15” cathode ray TV, the old style ones which are bigger front to back than corner to corner. Hearing the tinny voice of a news presenter as we chat, you could hardly believe the sound would travel through the breezeblock dividers between the houses.
“I began to fear having the TV as I didn’t want to upset people or make them angry. I would just sit in silence in my living room. I went into hiding, I felt like Anne Frank, scared of anyone who came to my door.”
Over a number of years, John had tried to contact various organisations who could offer support but in assessments, he didn’t ‘fit the boxes’ for their care criteria.
Left alone, locked away from life in his own home, John came to the conclusion; “I was just a burden, life wasn’t worth living.”
It was at this point John attempted suicide.
According to the National Autistic Society, nearly two thirds of adults with autism do not have enough support to meet their needs, left to fend for themselves and often dismissed as their disability does not present itself visibly.
This is where Kevin West, John’s support worker, stepped in, putting together an action plan and helping him regaining control of his life bit by bit. “John wasn’t given clear guidance on the rules of being a good tenant. Previous housing support from his landlord was also unclear and he was being asked to do things he simply wasn’t capable of. It’s the equivalent of asking your granddad to move a car when he’s got arthritis. We worked with a fantastic barrister who fought his case in court and he now has five years to comply with the terms of his tenancy. When John was told he could stay at his property, he was in tears, the barrister was in tears and the solicitor and I had lumps in our throats too!”
It wasn’t just his tenancy that John needed help with. The hoarding had continued and his home was in desperate need of complete overhaul.
“We started to help John by breaking jobs down into small, manageable tasks that he was capable of understanding. We helped him clear his house and garden and organised a skip for his rubbish.”
“We also introduced John to Laura who originally helped him with cleaning, but does so much more now. She has sorted out several bin bags of medication that he had stored over the years and now monitors what he needs to take.”
It’s immediately visible how much of an impact Laura has made in John’s life. Laura started cleaning for John but her role has grown to that of a carer, and she now looks after his wellbeing like a close friend or family member might.
Laura visits John three times a week and as well as cleaning and supporting him to clear his house, cooks meals and helps him shower and look after himself - even down to cutting his hair. Laura gets John involved and gives him tasks such as clearing bins and tidying the garden.
"She's an angel!"
Laura, a busy mum of three, said: “John is now part of the family! I broke my leg recently but didn’t want that to mean he didn’t get the support he needs so I invited him over to mine to ensure he still had a regular meal and shower. He gets on really well with the kids and enjoys sitting watching a film with them.”
Kevin knows where John would be without Laura, and this isn’t something he wants to consider. He tells me: “Laura has completely changed John’s life. She plays an integral part in helping to save John’s tenancy by keeping his house in order and gives him motivation and company and a reason to get out of the house.
“John has been transformed because of Laura. She’s an angel.”
And it certainly seems like John believes her to be an angel. He explains in no uncertain terms how thankful he is for everything she has done; “Laura gives me so much support and by going to her house it means I get out – I feel so isolated sometimes in my house, it can be like a prison.”
John’s life has completely turned around, and both Kevin and Laura see only a positive future for him. It’s humbling to see how John has created a family unit around him, people he can rely on to protect him and support him to be truly independent.
I think John’s final comment on his own support superheroes truly summarises where he has come from, and what the outcome might have been.
“If it wasn’t for their help, I’d probably be dead.”