Jill and Sandy, who have been married for 23 years and have four children, both have learning disabilities. Throughout their lives, people have told them they’re not capable of achieving their aspirations. With the support of The Advocacy Project, they’re working to challenge these perceptions and give people with learning disabilities a voice.
Art is a large part of Jill and Sandy’s lives, having both been keen painters since the ages of two and three. They’ve passed this talent onto their children and Jill explains that their whole house in North London is full of artwork.
They enjoy painting a variety of scenes. Jill is especially good at painting animals, while Sandy loves to draw people and landscapes. They paint on all sorts of medium, from pebbles to McDonalds serviettes to the walls in their home. If they don’t have paint to hand, they’ll try out different things such as coca cola and nail polish.
“When the pictures dry little bubbles come up. It’s a different texture,” explains Jill.
Perceptions of learning disability
Sandy says when he was at school his art teacher didn’t spend time encouraging him with his work. Then later in secondary school, he wasn’t allowed to take part in technical drawing classes as his teachers didn’t think he had the skills to be able to produce straight lines and angles.
“It was all about maths and everything had to be aligned,” explains Sandy. “I was really intrigued by design but they wouldn’t let me in to this part of the building.”
Jill and Sandy met at college. While they were there, they both wanted to join a local art class but were turned away. The headteacher of the college took their art folders to the class organiser to show them what Jill and Sandy were capable of. The organiser ended up changing their mind and asked Jill and Sandy to join the class, but they refused.
“We need to change the way people see us. Otherwise they walk all over us, sweeping us under the carpet like broken toys,” explains Jill.
That’s why The Advocacy Project has been so beneficial for Jill and Sandy, as it’s made them see that people are interested in what they have to offer and that others do want to listen to what they have to say.
They started working with the charity over five years ago and are now actively involved. Both Jill and Sandy are part of Speaking up groups, which provide open forums for people with learning disabilities to share their views on the services they use.
They then collate this information and present it at a larger meeting called Planning Together, at the council, where all of the views from the Speaking up groups are filtered back.
They’re also part of the Easy Info team, which works to ensure health leaflets are easy to read and that the council and NHS websites are in plain English. Jill chairs this group and works with other people with learning disabilities to turn jargon and complicated words into easy to understand language.
They’ve also produced jargon busters which they’ve presented at the Planning Together meeting to council staff.
As part of this work, Jill and Sandy have got to know council members which has helped to make sure the voices of people with learning disabilities are heard. Sandy says: “We know them by name now and they know us too. Without The Advocacy Project, they wouldn’t be bothered to speak to us.”
Both Jill and Sandy are well respected among the community of people with learning disabilities, as they feel they are speaking up on their behalf. They’re also held in high regard by health professionals and have taken part in large-scale conferences, presenting to organisations such as NHS England, as well as clinical psychologists, doctors and nurses.
Sandy has produced some tips for parents with learning disabilities for The Advocacy Project to share with other people who have learning disabilities. Both Jill and Sandy have been involved in parenting groups for people with learning disabilities for several years and say they are lucky as they have had a lot of support from their family along the way.
With the oldest of the four children now 21, they’ve had a lot of parenting experience. They say they did feel like they were thrown into the deep end at the start, but that it’s about asking questions and having the courage to ask when you need help.
Having a sense of purpose
“Being part of The Advocacy Project has given me a purpose. We’re involved in so many different things, which may seem small but together they’re much bigger. I feel part of something which I didn’t have before. I didn’t know where I was going. Now I feel like I’m helping and making a difference,” explains Sandy.
Jill adds that being involved in The Advocacy Project “makes you feel confident, stronger and part of something”. She says: “People with learning disabilities don’t know what they’re entitled to but the charity has shown us what we’re allowed and we’re now speaking up for ourselves to make sure we get this.”
Art can be therapeutic
And not surprisingly, art is also a large part of their involvement with The Advocacy Project. Jill and Sandy have encouraged other service users to paint: people who liked to paint in private but have been too shy to share their work with others in the past.
They’ve also organised art therapy classes showing people with learning disabilities that they are important and that other people want to see their work and hear what they have to say.
Jill and Sandy’s artwork is displayed on the walls of The Advocacy Project office in West London while the charity is also hoping to launch an exhibition with artwork from Jill, Sandy and other service users in 2017.
When Jill and Sandy aren’t working with The Advocacy Project, drawing or painting, they’re busy taking part in dancing classes and Sandy plays the bongo drums in a band.
“We like to keep busy, we’re not people who sit down for long. We like to stay active,” says Sandy.