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Susan Hanley tells us why disabled people need a voice and why non-disabled people need to listen. She’s a textiles artist, a business manager and potential MP. We meet Susan to find out more about her life.
I was born in 1964. I lived with my parents and my family in Morley. I’ve got a learning disability. Not just a learning disability – I’ve got Down’s Syndrome. I can’t describe Down’s Syndrome.
I used to play cards with my mum. Me and my mum, we always got on. I’ve got two sisters. My mum and dad had three daughters, and I’m the youngest. My sisters are Jacqueline and Josephine. I have a brother too. I had my own bedroom. I used to have a dartboard. And a record player. I had funny taste in music then. Des O’ Connor. Lena Zavaroni. Val Doonican. Lena Zavaroni used to sing Swinging On A Star. She was only 10 years old! I had her records. I had a dog. It was a golden retriever. Once I had a rabbit. A white rabbit. It had red eyes. I’d call him different names, whatever I felt like at the time. He was all white, so I used to call him Snowy. And I’d call him Bright Eyes too. I had a budgie as well.
If you know someone with a
disability, make sure you don’t let them down. Let them live their
I remember one morning, I got up and made my mum a cup of tea. After that, I used to do it regular. Bring her a cup of tea in bed. My mum always had curlers in her hair. My dad, he used to do a lot of golfing. He was a member of Fulneck Golf Club. He used to have a transport café. It was called David Street Café in Leeds – down near Water Lane. It was good there! Odd times, I’d go in and see him.
I’ve been to a load of schools. My primary school was at Cottingley. I can’t remember much about that. I went to a mainstream school. That was alright. But then I went to Redwood Croft Special School in West Ardsley. At school, I loved swimming. I went to the swimming pool. I just liked it. Fitness and fun. I used to love it in the pool. When I first started, I was 12.
I like knitting – and not just knitting – all needlework. My mum and my auntie (who was my mum’s sister) used to do a lot of knitting. That’s how I first started. And crochet. It was my auntie who liked crochet. I like it because you can make things. I’ve made waistcoats – a pink one and a blue one. I’ve made cushion covers – two different colours in patchwork. You can make a lot of things. I make toys. I’ve done a panda. I’ve got a book called Knitted Toys and I used a pattern from that. I do it when I fancy. It makes me relaxed and happy. I feel like I’m near my mum and my auntie again. I feel like I’m in my happy place. If I feel stressed, doing my needlework helps me to relax.
After school, I went to Park Lane College. I did woodwork. I made a coffee table. That was a long time ago. We used to do drama. We did a musical – The Phantom of the Opera. I did a dance routine. At the college. We had an audience. We did Cabaret. I was dressed up like Liza Minelli. Drama is great. I think it’s fun, jolly and you get along with other people. Learn body language. I do drama now.
My parents passed away and I’ve been living with my sister Jacqueline since then. I was 17. I’ve been there 40 years now.
Leep 1 stands for Leeds People First. It’s a self advocacy group for people with disabilities. I used to go to a training centre called West Ardsley and in 2010 it was closing down. I was part of the panel around funding. We started chatting and I said, “How about we get an organisation called Leep 1? It’s about time people with learning disabilities stood up to speak for themselves.” And that’s what we did.
That’s why we started Leep 1. We get people with learning disabilities to go out into the community to get their voices heard. I’ve been co-chair of Leep 1 for 12 years now.
We were in a very small office at the start. There was me, Beth Brown (she was the manager), Mandy, Tom (a volunteer) and Paul (a student). There was just a few of us – and the members. They came to us. They’d chat. I had a needlework class, where I taught people to do craft.
Susan shows off one of the AND hoodies, for sale online. Photo: Jan Wells
Making a Difference
I was involved in the Get Me campaign. It was me who started it all off. People with learning disabilities aren’t being recognised in society. It’s all about the social model of disability. It means places haven’t been set up for disabled people. For example, if there are only stepsand no lift. Or if there’s no accessible information for people to read. People look down on us. All because they don’t see us for who we are. They say some awful things. It’s about being recognised as a part of the human race. We want to change people’s attitudes. We were in the newspapers. We made a film and it’s now online. People speak for themselves – what they enjoy doing, what they like to eat, how they feel about things. I want to do more campaigning.
I do Learning Disability Awareness training. Especially with the police. When they talk to us, they judge us. That’s why I started doing it. We teach people about how to talk to us. It helps to slow down and communicate with people clearly.
I’ve got a podcast called Empower Me. I like to talk to different people who are part of self-advocacy groups, to see how they do it. How they support people. I interviewed Hilary Benn, the MP in Leeds. We talked about all sorts of things!
Strutting her stuff at the launch of Abilities Not Disabilities. Photo: Jan Wells
A few years ago, I began to feel down. I was unsteady and things were confusing. I had no-one to talk to and I kept crying. I didn’t know what it was at the time. But my body was changing. I didn’t know why I was crying. I talked to someone and they said it was the menopause. Then I went on the BBC Breakfast Show, talking about the menopause. Down’s Syndrome women get the early stages of menopause, earlier than other women. That’s what I was talking about, to raise awareness. I thought it was important to tell students who were studying to become GPs or nurses.
I was part of a course called Tomorrow’s Leaders. A programme for people with learning disabilities. Tomorrow’s Leaders is about bringing people together to talk about things and try and do something. Make a difference in our area, in our communities. Part of the homework was to do research. I did research on a lot of stuff. I looked at Meanwood Park Hospital, which was for people with learning disabilities. It’s closed now. My research was called Forgotten Lives.
I had a graduation and had to create a presentation. It was all about disability. I thought, “I do a lot of creative things. I do needlework, I do fashion. Let’s start a new thing.” This was Abilities Not Disabilities (AND). We wanted to show that people with disabilities can do things. It’s a fashion label and we make hoodies, T-shirts and sweatshirts. We design the slogans and pictures. We sell them and all the money goes into the business. We sold our things at Kirkgate Market. I went down very nicely. We also sell them online. And on eBay.
It makes me proud to see my work on clothes. I did an exhibition at Leeds Museum in 2018. It was a social enterprise project. It was all my needlework. I felt fantastic! It’s useful to show people what I can do, what I can achieve.
Susan gives talks and speeches about learning disability across Leeds. Photo: Jan Wells
When Covid came it was scary. I had a meltdown. I didn’t know what was going on. We couldn’t go out. I had nobody to talk to, I couldn’t see my friends. But what kept me going was my needlework. Through lockdown, I trained over 70 police officers! I had great feedback. And I learned to do Zoom. It’s brilliant being out again. I like being face-to-face. I’m 57 now. It’s a bit scary getting older. Sometimes you don’t realise you’re getting old. But it’s just a number.
Follow Your Dream
If you know someone with a disability, make sure you don’t let them down. Let them live their dream. There will be many ups and downs. And you can help support them. I still have a dream – to start my own business, just for me. I’ll call it Creative Hands because it’s all about your hands working. I call it busy fingers! I’d like to go out and teach people to make art. I’d like two galleries. One for the people I worked with, one just for me. I’m trying to grow myself as a professional designer. I’d love to be an MP one day and fight for my rights and the rights of everyone with a learning disability.
I hope the world can be better in the future. Better for people with learning disabilities. I hope that people can learn to talk to us like we’re human beings!
Thanks to Mandy Haigh at Leep 1 for help with this article. For more information on Susan’s campaigns and artwork go to www.leep1.co.uk
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