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Live What We Do

I joined My Life My Choice around 2008 after I had a breakdown. I had gone back to my full-time job and couldn't cope. I wanted to be someone who worked with people with learning disabilities and I heard about MLMC. I went along and met Michael Edwards, who started the charity, his nickname is the Godfather! I went to their AGM and put my name forward to become a trustee. I got accepted straight away and was one until 2009. After that, Jackie came along. We are married but she was my girlfriend at the time, and she became a trustee too. We went on our first campaign about benefit cuts together. Since I started here the charity has been growing and growing. When I first started there were about 285 members and now we have over 700! Before I thought I was the only one with deafness and a bit of speech impediment but after I travelled to all the groups, I saw the different needs of people and how lonely we can get. I know I'm not the only one now and I do my best to try and help everybody if I can.   


We're like one big massive family, we all work together and we try to include everybody. It doesn’t matter if you're any ethnic minority, LGBT+, religious or not at all, if you have a learning disability or not. It doesn’t matter if they're deaf or use sign language, we will somehow get around it. People are always welcome. We don't discriminate. When I first started we just had four or five different groups, now we've got loads more all over Oxfordshire. We are only getting stronger and doing more. We do lots of training. I've been to big meetings with the NHS, Thames Valley Police, and whatnot. Now I'm doing Travel Buddy which is where we train people to use public transport. MLMC members with experience of the buses in the city support other people with learning disabilities on how to use them. I've been doing it for quite a while now and at the moment I’m trying to teach myself how to be better at train travel. I go to church too, I'm trying to teach them how to work with people with disabilities. I'm hoping to do this project, if we get the funding, to go round to all the schools and teach kids and teenagers about people with learning disabilities because we always get looked at. I want to try and make a better world for people like us and for adults and professionals to understand whatever disability we've got.   


We also do fun stuff! In 2009 a guy up in Oxford from London said about having a nightclub for people with disabilities. I said I’d like to help out because I used to be a DJ and know about nightclubbing. I like playing the old stuff, 60s, 70s, 80s, 90s, party stuff. So we set this club night up, it’s called Stingray. Sadly one of our members passed away a long time ago and when we were setting up the club Michael said ‘Why don’t you call it Stingray after him?’ Me and a colleague went out to look for places all over Oxford to find somewhere accessible. We found one and were there for a few years. When we lost that venue we had to do it all again. I set the team up, I had to get the right people to do the right job. We have our own security, our own front of house people taking the money in, our own DJ, who are all members. The staff at the venue are there to help us a little bit but mostly they’re just there watching.   


One time we went to Spain, me and a few others, to do the Camino walk and raise awareness for people with learning disabilities who were dying unnecessarily. Me and my wife have been to Germany as part of the European disabled fund. We also won an award from the Queen and we went to Buckingham Palace garden. I've been to 10 Downing Street too when David Cameron was there. One of our members turned to David and said, ‘I've got a question. I'm hearing you're going to cut all our disability benefits and you're gonna let us struggle. Can you and your government step in our shoes and think how we're going to live?’ After that David Cameron walked out. Everybody in the room just stood up and clapped for our guy. I always challenge the government. My wife and I are struggling now with the benefits going down, it's just so hard. Through lockdown we had a lot of people struggling and the government and the councils never helped us. I can't read or write or anything like that so getting a job is hard. What I do for MLMC is like a proper job. Sometimes we get paid, sometimes we don't. But some people don't think it’s proper, they think we're scroungers. They should step in our shoes and live the way we do.   


Before My Life My Choice it was hard because people wouldn't listen to me. Now I'm stronger – not big-headed but more powerful and know my own self. I know it's my voice and I'm in charge, not staff. I listen to other members and try to encourage them to speak up about their problems. I've had the big money job off and on, there are four of us in charge of the finance. It's a lot of responsibility. We meet and talk about what money’s coming in, hiring staff, any issues we have. The different self-advocacy groups decide what they'd like the charity to focus on, ‘We want to do a campaign about picking up litter,’ or a thing on hate crime or health or something. It feeds back to the office and if we say yes, and we get the funding, they do it. If we can't decide, we let the trustees decide. I’ve also been there when we've sacked people, I was on the interview panel with hiring new staff. Sometimes it's very hard, you go home and think ‘What a day!’ But we all work together, we have a little banter and a laugh. That team feeling.  


I’m not being big-headed, I think there’s a lot more we can do. In lockdown I had to go to hospital, and there was a young girl with autism who was getting very frustrated because they didn’t allow her parents in. I spoke to the nurse and asked ‘Would you like any help?’ She said ‘How could you help me? You can't help me.’ But I said I could settle the girl down and try and communicate with her. And I did, I got her settled down, explained why she was panicking, and it was really good. They said ‘Thank you, sir. I'm sorry, I thought you couldn't do it.’ I told this senior nurse to look up My Life My Choice. So my idea, because of that hospital experience, is to set up a new scheme called hospital buddy. If a disabled young lad won't go to the doctors or to the dentist or optician or somewhere like that, and his family are working, we could get one of our volunteers to take him to the appointment. We can explain the medical jargon and maybe give young people some confidence. I think we called over 200 members and out of 200 members I had 150 interested to try and get the funding to do the scheme. It's a process, we work with the trustees and staff, we plan what we're going to do and how we're going to do it, and if we’ve got the resources, then we go forward step by step. And in the time I've been here, we’ve not had much failing.   


Lots of charities went bust in lockdown. We thought we would, that would have been so bad. I don't know where I'd be without MLMC. I'd be going crazy or be in a hospital or something. My mum, my dad, my nan all passed away so this is like my family. I had a few ups and downs after I lost them, I couldn't go out and get a proper job. It's scary, to be honest. If they hadn't been there, I wouldn't be here today. Now I'm just looking forward to our 25th birthday party and looking towards the future. What I’d love to do now is make more relationships out there in the community and to have professionals and the government and the schools work with us. What I'd love them to do is not discriminate against us. One of our member's dreams is to try and take My Life My Choice further, to Australia, America, everywhere. To get a big bond with other people, other organisations. For all the disabled community and different charities all over the world come and join us, and make it friendly, and stand up for the power of people with disabilities. 


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