One of many groups that have found a home at The Lenton Centre, the West Area Project is a not-for-profit providing activities for people with learning disabilities. To highlight research showing that people with learning disabilities and autism die 19.5 years earlier than the general public, during National Learning Disability Week volunteer Rich Davis is taking on a challenge walking, rowing, cycling, swimming and running to raise money...
When you first walk into the Lenton Centre, you are immediately greeted with a sea of smiles. Someone’s just finished swimming, someone else has their head buried in a colouring book, but no matter their age or hobby of choice, they are happy to see you.
These smiles make up the West Area Project. Here, men and women with learning disabilities have a jam-packed schedule of activities to choose from. Every Wednesday it’s arts and crafts; Thursday it's gym and swimming; and Friday is when the members take the lead on cooking dinner. But it’s more than just keeping busy and having fun.
The main goal for the West Area Project, or WAP as they like to call it, is to help those with learning disabilities and autism lead healthier lives. And this is where the number 19.5 comes in.
I think there is sometimes that misconception that anybody with a learning disability or autism needs their hand held through everything. You’re kind of almost put in a box where there isn’t a chance for progress.
Research shows that people with learning disabilities and autism die 19.5 years earlier than the general public, and around 40% of those deaths are avoidable. This is predominantly due to inaccessible medical care and a lack of understanding of healthy practices.
Rich Davis is a former journalist who is now volunteering for WAP. When he heard that the project needed more money, he knew the number 19.5 should be at the centre of their efforts. So, during National Learning Disability Week (15th–21st June), Rich will take on a challenge involving walking, rowing, cycling, swimming and running with all distances based around 19.5. This includes 19.5 miles or kilometres and 195 lengths of the pool. He aims to raise £1,950.
But, in the midst of this daily chaos, there’s a narrow bright purple room where the magic happens. The walls are layered with pinned artwork and newspaper clippings, and that’s where Yvonne Pearson fights battle after battle.
Yvonne is the manager of the West Area Project, and she says, “[WAP] was designed to be small and beautiful.”
Other day care centres can have over 100 members, but WAP currently has 21 in total.
“That was our purpose, and that made us stand out”, she says. “People wanted things that were everyday size, and they wanted us to do everyday things as a group, like cooking”.
In that little room, she is always on the phone, fighting for everyone’s needs. Whether it’s a bus pass or a serious medical appointment, they often need special arrangements or assistance, and she is their voice.
“People with learning disabilities and autism typically don’t get the same [medical] assessments that anyone else gets… they are denied services, and they end up dying earlier of preventable diseases”.
Around sixteen years ago, when Yvonne first started, everyone had their own named social worker, community health nurse, speech therapist, and more. Now people with no previous knowledge of the person make their assessments and move on. “I’m constantly appealing decisions on people’s behalf that are made by inexperienced workers”, she says.
She feels that while “Nottingham City Council are very proud that they’ve sorted out their budget”, their cuts are “leaving people behind”.
She talks about one member who was losing weight and becoming almost “skeletal”, and hospitals just wouldn’t make the necessary adjustments. Yvonne fought for this member until they were finally brought in nine months later and ultimately diagnosed with cancer.
“We don’t even want to talk about if it had been done earlier," she says, adding, “Everything’s a fight.”
Yvonne genuinely loves the challenge of fighting for people’s rights and needs, but sometimes the fight is a little closer to home.
In the past, Yvonne has heard carers say, “Well, they’re like children, aren’t they?" So this overprotective culture is focused on keeping people safe and less about individuality, ability and even nuances like sexuality.
Some carers overestimate the ability of the individual, leading to them making unhealthy choices for themselves. Others underestimate their ability, resulting in a loss of autonomy. Getting the balance right means recognising each person’s true capacity.
“I think there is sometimes that misconception that anybody with a learning disability or autism needs their hand held through everything,” Rich says. “You’re kind of almost put in a box where there isn’t a chance for progress.”
When one member first came to WAP, they were violent, threatening, and so attached to their mum that they ran out into the middle of the road. Their mum jokingly said, “Bet you won’t want them." But Yvonne simply linked arms with them and stayed by their side. Now, she says, “they’re the most delightful caring person.”
After fifteen years at WAP, they just took a big step. They stayed away from home for the first time at a respite community house so their mum could have a break for herself. Something WAP initially never thought would be possible.
The West Area Project works to help people be as independent as they can be and tackles all kinds of other misconceptions. They teach them about bodily boundaries, how to appropriately interact with others, and even how to structure conversation.
But the teaching goes both ways. Neurotypical people filter their words and put on some sort of front. “The best thing is how kind of pure it is in terms of a lot of the conversations…" Rich says "A lot of the members do talk without a filter. Sometimes for the worst, but mostly, I find, for the better.”
He finds it honest and refreshing. Rich wants to celebrate and protect what he calls a “pure essence of living that you don’t always get in the outside world”.
With the 19.5 challenge coming up, he wants to raise both funds and awareness, and the members may even be joining him on parts of the challenge.
“I think that’s the bit I’m looking forward to the most, just hopefully, getting everybody involved”.
National Learning Disability Week takes place between Monday 15 - Sunday 21 June. To donate to the 19.5 challenge please click here, and head to the link below for more information the West Area Project.
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