Ciara Lawrence wants to change the world.  Through her work with disability charity, Mencap, her disability focused podcast, and her work with countless other charities, she is one busy woman. ITAKOM’s Darragh Mullooly caught up with the activist to find out exactly where she finds the time to do it all and what our delegates can expect from her session at the ITAKOM Conference in March.

Ciara Lawrence 
Big Plan Engagement Lead at Mencap

ITAKOM Topic Session: What Good Quality of Life Means to Me

Day 1, 11:30 – 12:20

Interview Transcript

ITAKOM: Hello again, today I’m here with Ciara Lawrence. Ciara works with UK disability Charity Mencap as their Big Plan Engagement Lead which we’ll hear all about. She’s also a podcaster and works with multiple other charities as a trustee and an ambassador and….I don’t know where she gets the time but let’s find out. Ciara thanks for joining me, how are you?

Ciara: I’m well, thanks, how are you?

ITAKOM: I’m well, I’m loving your Dublin shirt!

Ciara: Yes, it’s very on-brand for today. All of the tickets for Bono’s European book tour have gone on sale; I haven’t managed to get them yet but, hopefully, at some point, I will. So, yes, very on-brand today!

ITAKOM: For people who don’t know you, Ciara, can you tell us about some of the work you do with Mencap?

Ciara: So, I’m Ciara Lawrence, and I am a person with a learning disability. I work for the UK learning disability charity, Mencap, and I’ve been with them for 21 years. My current title is Engagement Lead and, in English, that means I’m helping to lead on the engagement side of our amazing 5 Year Big Plan at Mencap. The message of our big plan is that we want the UK to be the best place in the world to live for people with a learning disability to live happy and healthy lives which is an amazing message. I’m sure we’ll achieve it. So, at the moment I’m talking to lots & lots of people with a learning disability getting them involved in projects that I’m running around the Big Plan and making sure they are involved in these projects. Right from the start, right through the process, right to the end so it’s really inclusive, diverse and so there are lots of exciting projects lots of meetings. It’s really important to think about how we can include people. So I advise managers on how to deal with people with a learning disability. Lots of work around inclusion, diversity.

ITAKOM: Can you give us an example of some of the projects you’re working on?

Ciara: At the moment I’m working on a huge piece of work called storytelling, that is all about, when someone shares their own story, that Mencap treats it all in a good way, so thinking about when you first ask someone if they would like to share their story there’s stuff around consent and that they are happy with that, how will it work, preparing them to tell their story and then sharing their story. Also making sure they get as much in a professional way and are dealt with professionally.

At Mencap people can share their story in all different ways so people may be asked to share their story for fundraising, for the media, for campaigning, awareness outside of Mencap – there are loads of reasons why someone might share their story. We want people with a learning disability to feel really supported, like there’s a process to it, because that is their life that is their story, that is them, sometimes it can be a happy story or a sad one. As we all know, people with a learning disability have to deal with barriers every day of their lives. So for example, a few years ago, I went on a TV program in the UK and I had to talk about a woman who had all of her teeth taken out without her consent. She was told she was having 2 taken out. When the dentist put her under anesthetic, they realized that all her teeth were bad and under no consent, all of them were taken out and after the op, her family saw that she had all her teeth taken out. She died shortly after.

So I had to go on a TV show and tell that story, I had to be professional and do my job in telling that story even though it’s a very sad story. After I left there, I had this moment of, “I want to share how I feel about this with someone”. Because you are doing a job, you sometimes put your own feelings to one side, so it was important to me as a person with a learning disability to be able to say, “this is how I feel about it, I would like to chat to someone about it”. When we are sharing a story, sometimes there isn’t always aftercare. So, that’s a big piece of work at the moment.

Another piece of work at the moment is with IT. Now, IT isn’t very sexy, but we are trying to get all the IT staff at Mencap trained in learning disability. Sometimes, an IT member of the team might be on call with someone who has a learning disability and not realise it and maybe use big words, or it becomes hard for them to understand what they want. Hopefully, we will get all the IT team trained in learning disabilities. Really hoping that will happen soon.

ITAKOM: So when you’re not with working with Mencap, you have your own podcast right? Tell us about that! You’ve had some great guests on. So why did you start the pod?

Ciara: So during the pandemic, we were all at home, we couldn’t go out unless it was really necessary, and for a little while I was furloughed from my job at Mencap. I found that quite hard to deal with, so I started listening to podcasts that people were making online; I listened to Michelle Obama’s that she started and that was amazing. I wasn’t officially allowed to work but thought I can still talk up about having a disability I can still do that. So I followed suit after Michelle Obama and got a microphone, bought a book about podcasting and got some guests on board to see how It would work. A year and a half on, I’ve had some amazing guests and people who have signed up. It’s raising awareness about learning disabilities and off the back of it, I’ve also got some possible media opportunities coming up in the next few months which is really exciting. I’m loving it. I want people to go away thinking (a) Ciara is a great podcaster. (B) I’ve come away having met a person with a learning disability and they’re not scary, and also learning what a disability is and is not. It’s been really lovely.

I’ve had Jeremy Vine, U2’s The Edge, I’ve had Rob Bridon recently, who I went to see on tour and I approached him and he said yes, that episode is out at the moment so go listen, so I’ve got some great guests coming up in the next few months. It’s been great, everyone who I have had on have just been themselves, they just came on Zoom for a chat there was no VIP or celebrity in the room which was great. Also, for me to meet those people I’ve learned not to judge. Sometimes, when you read about someone in a magazine or a newspaper you think you get an idea of them, so that’s taught me something. It’s called Ciara’s Pink Sparkle Podcast and it’s on Apple, Spotify, Podchaser, Anchor, wherever you get your podcasts.

ITAKOM: Ciara, tell us about your talk at ITAKOM next year.

Ciara: The theme is quality of life. I will be talking about what good quality of life looks like for people with a learning disability. Yes, there are barriers, but actually, they are just people like you and me, they have rights, feelings, emotions like you and I, and I want people to know to have a really good life, it’s all about getting the right support from early on. And if you get it early on the more chance you’ll have. I’ll talk about my career, where I was growing up, and where I am now, I’m really hoping I can inspire people.

Darragh: Finally, I wanted to know about the other charity work you do.

Ciara: I’m a trustee of 2 charities: head2head Sensory Theatre, the Sunny Bank Trust in Surrey, then I’m a patron for Dance Syndrome they are an inclusive dance group and their aim is to get people to communicate through dance. I’ve recently joined that support people who have communication difficulties. I went to my first event with them in my patron hat a couple of weeks ago, it was lovely to meet everyone face-to-face. I’m also an ambassador for 2 cancer awareness charities. The Joe’s Cervical Cancer Trust, and The Eve Appeal, they are there to spread the message of Gyno cancer awareness, mainly around women’s health checks. Sadly, my cousin-in-law died at 48, which is no age at all. She was newly married and that was awful, she was so happy, she was working, she got diagnosed and then 11 months later she passed away. So, in her memory, I want to say please go get checked if you notice something, if you spot something, please go get checked. I went and got my very first smear test and after I went I made a video on social media basically spreading the message of “if I can go for my smear you can too”. It’s had over 14,000 views and I’ve had messages from women saying I’m booking mine now because of your video. So, if I can save one life I’ve done my job.

I’m very proud of all my roles. I love my life and I’m very lucky. I get to be a role model for people and just want to show the world that even with a learning disability, I can still do all these other things as long as I have the right support. There are 1.4 million people in the UK with a learning disability and you know, I can speak up, but there a lot of people with a learning disability who don’t have a voice. I’m speaking for all these other people too and it’s important I get that right. I’m very proud and really looking forward to the conference.

ITAKOM: When do you get time to chill out and relax?

Mainly weekends! And I do take annual leave to have a rest! But I love what I do and I’m passionate about it. You know, I was diagnosed at 10 years old. I suffered in school, and in the education system and was told at the age of 10 I would never achieve anything. Look at me now, I’m now 43. I’m married. I have my own home, career, all these other things I do in my spare time. I have proved those people wrong. And I stand up for what I believe in. I’m quite gobby, I say what I feel! And when I get to retirement age I want to look back and say WOW I did all these things and now I can hand over the baton to the next generation of people with learning disability and say right, now you do it, you now run the world. If I can do that and leave a really lovely legacy to the next generation to do what I do, then I’ve done my job. There’s still so much work to be done, the world still isn’t inclusive for people with learning disabilities, we are working hard to change that, there’s a long way to go, but when the world does change….then I’ll retire!

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