Fulham-based Charity Proving to Be Lifeline for Disabled Children
Acton on Disability's summer camp providing relief after lockdown
(Front to back) John MacNeely, Tamara Stuiver, Lisa Monzon. Picture: Grahame Larter/Reach Plc
Recent months have blurred the lines between school, work and home, and turned families’ lives upside down.
For parents with disabled children, for whom trying to get the best for them could already be a struggle, the everyday complications seem to have multiplied.
So it was no wonder parents were thanking staff profusely as they arrived for the first day of Action on Disability’s summer camp.
Based in Fulham, the camp’s youth manager, John MacNeely, spoke of their collective relief as it opened its doors on Monday, July 27.
“I guess families are fairly desperate, and welcome the chance to have a bit of respite,” said Mr MacNeely, who has been with the Action on Disability (AOD) charity for 20 years.
“We had people coming in this morning saying ‘thank you, thank you’ because they’ve had their children at home since March.
“It’s great to be here,” he added, and assured us the camp is carefully taking a host of COVID precautions.
Picture: Grahame Larter/Reach Plc
Based in Lillie Road, and with a strong emphasis on creativity, performing arts and sports, he said the camp welcomes 24 young people with five staff on hand. In normal times, they rehearse and perform shows at venues like the Bush Theatre, Riverside Studios and the Lyric in Hammersmith.
“We did the same in half term and Easter but that was much more scaled back, with only five children from families identified as being in extreme need,” said Mr MacNeely, from Shepherds Bush.
“It’s a strain on families when their children are at home for such a long time. They tell us they’re not teachers or youth workers.
“For the young people here, being isolated from their friends for so long, it really dents their confidence.
“In some instances it’s difficult for them to get why they’re being told to stay at home. The concept of a pandemic can be difficult to understand.”
AOD began in 1979, and offers services to disabled adults too, including an employment service and financial advice. It’s officially a ‘Disabled People’s Organisation’, meaning it is “run by disabled people for disabled people”.
Service users at the Action On Disability summer camp. Picture: Grahame Larter/Reach Plc
Last month, the charity won a £220,000 grant from the City Bridge Trust.
“Unfortunately we have had children who have witnessed domestic violence during the lockdown,” he said.
“They were removed from their home for their own safety. Sadly, they couldn’t make it here with us this week either.
“We have had one attempted suicide. We’re working with the local authority to identify children who should be at the top of our list of priorities.”
The problems that AOD’s clients need help with can vary massively, and it offers to help from children aged 11 to young adults aged 25.
But Mr MacNeely said the aim is to steer young people towards being able to “live independently” as they get older.
He explained: “If someone comes here at 11 we hope that by their early twenties they might be able to live independently, not need our help, and that they will have a network, feel confident and very much part of their own community.”
The charity’s “employment project” helps disabled young people secure internships across West London. “That’s on Thursdays after school. And on Fridays we help children do their Duke of Edinburgh awards,” said Mr MacNeely.
One success story that quickly sprang to his mind was of a young woman, Jodie Clark. “She came in her teens and was very unwell. In a very bad cycle. But she expressed a desire to do more with her life.
“After two years she completed her Duke of Edinburgh and signed up to our employment service. She got an internship at L’Oreal, but she decided it wasn’t for her.
“She later became a teaching assistant at the arts department at Hammersmith and West London College.
“Now she has her own place and her own friends and it’s amazing how much her confidence has grown.”
The majority of AOD service users are from Hammersmith and Fulham. But Mr MacNeely said they welcome people from the surrounding boroughs who hear of its great reputation.
Mr McNeely continued: “We want inclusivity to be genuine so that disabled people can be visible in fields like the arts and sports.
“Hopefully then there will be less bullying in schools and in general as people will be more aware of disabled people in real life.”
Sarah Markson, 56, from Chiswick, said Action on Disability has been “a lifeline” for her and son Jack, 24.
Jack Markson. Picture: Grahame Larter/Reach Plc
After giving up her career to manage her family and Jack’s care, Ms Markson said she is now setting herself up as a yoga and pilates trainer.
Jack has a rare disorder called Kabuki syndrome which he was diagnosed with at Great Ormond Street Hospital as a baby. Ms Markson describes it as similar to Down syndrome.
“The summer camp has been a great resource,” she said. “Jack has been attending since age 16.
“It provides extra programmes during the holiday. They have been able to get him doing yoga and enjoying dancing.
“I have been to other services where I’ve felt like there’s been a lack of input for people like Jack and he has ended up sat in a corner. He needs someone to help him enjoy a stimulus. The first thing I look for with a service is will they be able to motivate him.
“Jack looks forward to it and wants to plan ahead what dates he’s going and looks forward to knowing who else is going to be there.”
Owen Sheppard - Local Democracy Reporter