Here you can read all about real people who are leading Good Lives. They have shared their stories below.
To add your own story please email info@LDEngland.org.uk
Susie – My Good Life Story
My life now is good, even though my husband Ron passed away on 11th April 2020. He died because he was a smoker. Everyone tried to stop him, he just wouldn’t stop. We lived in this flat together before he passed away.
Before we got married we had known each other 25 years. A lot of people said ‘I am glad you are married’.
We had a lovely funeral for him up in Ore, he was cremated.
Ron would have been 83 now. But since he died I made lots of friends.
I played drums at Frimley, that is how I met Sylvia. We became friends doing shows together. Sometimes, we go out for walks when I can when the weather is nice.
Jean next door, we go coffee mornings and bingo together. I went with Jean to see the Tribute Abba. At Christmas we saw a funny thing about Sandy Claus at De La Warr. It was really funny it was.
Renute, my carer, she is so lovely. She came with her friend to cook Christmas dinner and open presents and cards. She comes Monday to Friday and sometimes Saturday as well, or Sunday because you were coming.
I am still in touch with Peter, Ron’s brother, and his wife.
For my birthday which is on 12th May Renute surprised me with a trip to London. Hotel and Kew Gardens.
My happiest time was with my lovely husband Ron. I still miss him. My friends make up for it a lot.
Stories from Building Bridges
On transport…
To have a good life we need reliable transport. There are lots of things we would like to see change.
Being able to use our bus passes at 9.00, not 9.30. If we use them before 9.30 we have to pay £1.50!
An audio system at the bus stops to tell us what buses are coming and when. And on the buses to know when to get off.
Keeping ticket offices at train stations. Lots of us cannot use the machines to get a ticket. We campaigned for the ticket offices to stay open and we won!
Lower steps onto trains – sometimes the step is too high.
Being able to choose the vehicle when we need to get a cab. Teresa said ‘I cannot get into a minibus, I need an ordinary car. But you cannot choose what they send.’
We would also like taxis that come on time, and helpful drivers who help you in and out and talk to you.
And finally, we want the police to clamp down on joy-riding. Sometimes we are too scared to cross the road because people are driving at a crazy speed. Even the bus drivers go to fast!
On health care…
We all have learning disability health checks at the doctors because it is our right to have one. A good health check is respectful AND thorough.
But some of the things with new technology make it more difficult for us. For example, using touch screens to check in is hard for people who don’t read – and they have them at the GP, dentist and hospitals.
Sometimes people don’t think about the best way to communicate with us because of our learning disabilities, or other things. Kraig’s finger is bent and he can’t straighten it – it’s called a contracture. This started years ago. But it has not been fixed because they left him a voice mail to tell him his appointment, and because of his hearing loss he did not get it. And he is still waiting to get treatment, years later.
Doctors need to be patient. Fran said ‘I get so nervous talking to people I don’t know. good is when they are understanding, they give me time to tell them what is wrong, and talk slowly, making sure I understand what they are saying to me’.
The Accessible Information Standard came in in 2015. But health services still are not doing it well.
More self-advocate stories from Building Bridges
Darren
On a Saturday mornings since 5th November 2022 I have been doing the 5k Park Run at Sandwell Valley. I have done 43 now and I am getting faster and faster.
I’ve also now done a 10k race, a 5 mile one and that has helped me a lot. It is so brilliant I don’t know how I would be without it.
I feel part of a new family with the people at Park Run, when I slow down other runners encourage me to go faster and faster.
I did one the day before my birthday, they took my photo and put it on Facebook.
I’m in the 25 plus Park Runs group. My next goal is to get below 27 minutes. My quickest so far was 27 minutes 50 seconds.
Three months ago, on 9th September, I did a colour run, they chuck powder paint at you, because of it I got my photo on the BBC News website. I even did my normal Park Run that morning.
I’m losing weight because of it.
Terresa
I do Diamond art at home. I send the pictures of my work to the Jigsaw FaceBook group. I have done a peacock, an angel and the moon and Pheonix. A small one takes me about a week, the biggest one, my peacock one, that took me four weeks. I have done a football one as well.
Chrissie
I make cards for my friends. I do them for Christmas, Easter and birthdays. I made a card for all my friends and posted them in lockdown. It cheered them up.
Fran
I work in the Blue Cross charity shop in Halesowen on a Tuesday. I used to do 2 days a week, but now I do snooker on Thursdays. It has helped a lot with my confidence. Way back when I first started you rarely got a word out of me. I could not cope with buses or even a taxi, my mom used to take me everywhere. Now I can manage a series of buses, though I don’t have the confidence to go to West Bromwich because I don’t know the area.
Mostly it was about time-keeping, don’t want to be late, a lot of it was me being obsessed with time. I first did a bus on my own when I went on a course to get work ready. It was 2018. I used my contactless card, tap and go. After a long walk I thought to myself I don’t want to do more walking. And now I catch buses on my own and with friends.
In the Blue Cross shop I do the books, dvds and cds, I sticker them up, top up the books when I need to. I am not till trained though. I think I would be too slow.
Dawn “I’ve been fighting all my life”
Fighting for people’s right to have a say. I work for Cardiff People First and that is my job, making sure [people get their rights. Getting satisfaction I’m doing the right job.
I do 13 hours a week, feels like too many sometimes I’m so tired after, but I like keeping busy, doing it for myself, yes, but doing it for other people, show them, You can do this too.
What I am most proud of? Pink Ladies, telling women about bowel cancer, they didn’t want to talk about it, it was about helping them to do that, and use the tests.
I was born in Pontypool. My mum has a learning disability, we only discovered that recently. Through my childhood we moved a lot, from then on I kept fighting for my rights. I don’t know what makes me keep on doing it.
I’ve got so many awards. The Woman Spire award, I won it. Zara, my People First colleague, won it this year just gone, last year 2022.
When I relax I like to be with George, my partner. Watch TV. Snooker in my flat. I’m a good player.
Simon “My Life has been quite an adventure, and lots more adventuring still to do“
What makes my life good is activities to do in the week, and friends to meet with. A lot of my life I didn’t do much, just going places with my mum and dad. Not till my mid twenties did I become more independent, mum and dad wanted this. It started with using the bus, then joining People First. Action for Access, it ran for 3 years we put on a wide variety of events, not only did we have the event itself, we had voice coaches, make up artists, the works. That played a big part in me getting hooked on music and drama.
Now I do Hijinks Odyssey community drama group, we meet weekly and we put on a show once a year in the Millenium Centre. I have been a sheep, a wolf, a reindeer and penguin, I have been Santa 3 times. They even wrote a squirrel character in for me one year because of my love of squirrels, Nutty Jake and he had his own tune. This year I am the Ghost of Christmas Present.
I am a volunteer for Insight, we volunteer to do online activities like discos and movie night. It started in Lockdown, it is a group of people across Wales and Scotland and the north of England. I run an activity usually a disco once or twice a week. All volunteers have a learning disability, it is not marketed as such.
See my Electric Umbrella hat? That started in lockdown, and they have remained a key part of my life ever since. I do a few sessions every week. I was part of the Umbrella Fest in Watford in the summer, and I am planning to go up there for a couple of nights to do things with Electric Umbrella open mic nights. I am obsessed with them.
And I go to Karaoke and open mic nights locally too, helps me meet new people.
Family is important too. My dad and my sister live near me, easy to reach. I support them, when they are having difficult times.
My life has been quite an adventure and lots more adventuring still to do.
Charlene – “I am proud to be a trustee!”
Interviewed by Jan Walmsley
“I live with 5 other people in my house in Oxfordshire, and with staff. I like to watch TV.
I am a Trustee at My Life My Choice. There were 21 people who wanted to be a Trustee, and only 12 places. My Life My Choice members voted for me. I feel sorry for those that did not get elected but I am proud to be a Trustee!
I am also a Travel Buddy for My Life My Choice. I help people who want to learn how to travel safely on the buses in Oxfordshire or wherever they want to go. And I get paid for that. That is important to me.
I helped to make a Travel Buddy film, and I went to London to a big cinema to show it. And we won! It was my first visit to London. I had my picture taken, and we had champagne, it was really good. London was very busy. Then I came back and I made a speech about it at My Life My Choice, there were lots of people there.
My life changed completely by going to My Life My Choice and learning about my rights.”
Anup “There is a lot to think about when you have a learning disability and want to have a good life”
Interviewed by Jan Walmsley
“What makes my life good is my own flat in Wallingford. I have had it since I moved out of supported living in Didcot in 2017. It is more independent. Independence is the best thing about having my own flat. I can choose who visits me – I like that!
When I moved I could choose my own support hours. I have support with cooking and my money, now I can manage my money when before I couldn’t.
I am a Trustee at My Life My Choice, it’s a self-advocacy group that is very important to me. It teaches me about choices and rights, and to feel more confident. I’ve been there for many years. I would really like to be on the Jobs and Money team at My Life My Choice. You get elected to that from the Trustees.
I would love to be able to have a job that pays me so I can come off my benefits, but it is a big move and I may not get the right support. I had an interview with the Care Quality Commission and I am waiting to hear if I got the job. There is a lot to think about when you have a learning disability and want to live a Good Life.”