Darren's Volunteer Story

great to be joined today by Darren, who has been a volunteer with epilepsy action for seven years. And he's also volunteered with other, um, various organisations, Um, including scope. Um So, Darren, you've got a lot of experience, um, of volunteering with different organisations. So I just wanted to ask you what made you want to become a volunteer? Well, it goes back

I mean, I wasn't I wasn't diagnosed with epilepsy till I was eight. I was actually born without a disability, But when I was about 11 days old, I was, uh, my parents. Apparently, my birth parents had a very, um, violent marriage

And it's thought that by social services that I was thrown into a brick wall during an argument head first. And as a result, I have left side hemiplegic cerebral palsy. My epilepsy was diagnosed when I was eight and I was averaging maybe two or three petty miles a week with weirdly enough four

Well, it was always four grand mals every four. Well, every four years I'd have a grand mal, which seemed to happen on weird days like I had one on my parents' silver wedding anniversary, one on the day, Margaret Thatcher resigned, and one, when the world 1994 World Cup kicked off. Um, I had apparently eight grandma seizures in a 12 hour period

And when I worked him in hospital, the doctor wasn't very impressed When my first question was, did Brazil win? And that's the most important thing to know, isn't it? Oh, yeah. You need to make sure you know about the football. And then in 2002, it changed, and I stopped having petty mouths

But I started having complex parcel Caesars about once a week. Um, but in 2010, I had brain surgery. And, you know, so far I've been fit free

But I am still using, uh, my full meds and I was so bullied at school that, um it affected me quite a bit. But when I thought about doing volunteering, I realised I could use my experience, uh, that I went through at school to educate young people disabled young people, especially on how to cope with bullying. Um, you know that I know that Children struggle at school

Um, there's still, um, you know, problems going to university looking for a job you know, and that included all kinds of disabilities, not just epilepsy or cerebral palsy. And I thought by using my experiences, um, that what I went through, I could help, Uh, younger people especially cope with how to do these things. How to move out of home, get a job, Uh, go go through interviews and get into university

Um, so you know this and I did that mostly at the time with those with, um, visible disabilities, but someone with epilepsy. I thought it would actually be good if I expanded that to, um, the epilepsy group. And that's when I got in touch with epilepsy action

Um, and it was also something that, like, upset me was, um I went to an event and there was a neurosurgeon there. He was talking to a group of parents of 5 to 16 year olds, and he was telling the parents about all the things that their Children would not be able to do due to their epilepsy. And I thought he he talked about going to school, going to university, getting a job, moving out of home, having a relationship and how these Children would not be able to do these kind of things and I want to do in these workshops I wanted to show

Despite what the neurosurgeon said, it is possible for a young person to do these things. I went to a normal school. I have a degree

I have a master's degree and a full time job, and I'm married. All these things the guy said, wouldn't be able to do being bullied at school. Um, was also one of your motivations

Can you tell me a little bit more about what happened? Maybe as an adult, um, when you'd left school, what happened related to the bullying that made you also want to volunteer? I think it was because II I cut off contacts with everyone I went to school with, except for two people, and I tried desperately to forget that I ever went to school. But then the Internet came along, and for those that are old enough, there was a fr. There's a website called Friends who united, um, back in the nineties, and I signed up to that, and within a week or so, I had an email of the person that bullied me the most, made my life, absolute hell at school, apologising for the way they treated me

And that meant a lot. It kind of made me realise that actually, people's attitudes can change and, you know, through volunteering, they can change. And then, a couple of years later, something like 2008 I signed up to fr uh, Facebook and I had within two weeks I had about 50 friends, requests from people I went to school with who bullied me, and a lot of them bullied me, and a lot of them were apologising for the way they treated me, and it showed me how people's attitudes could change

And I thought, you know, volunteering could further that and help more people's attitudes change because these people made my life absolute hell. I tried to forget they existed. And now they're apologising to me

Um, you know, we're friends on Facebook and we talk on Facebook, you know, gone back 30 years. I would never have wanted to see them again. Now we chat

And do you use that? Yeah, So that's yeah. Again. It's like as you said, it's like it's turning the negative into a positive

So that's yeah, really good to hear. Yeah, as I say, it was just I If I don't know if I'd never got If I'd never got that email off that person, maybe I wouldn't be so much into trying to use my experience like, but that email really changed a lot. A lot of things has volunteering helped you in any way, personally? Very much so

I mean, it allowed me to face what happened to me as a baby. And, you know, actually being disabled. This might sound very strange, but, um, you know, being disabled could be one of the best things that ever happened to me

You know, I. I didn't stay with my parents. I was removed from my parents

I spent two years in a Children's home out or a hostel. I had multiple operations on my skull. I was fostered, then adopted by a loving family

I've always known I was adopted. My earliest memories are stuff that happened in a Children's home. But in the early twenties, I de decided in my early twenties

Sorry. I decided it was time. I traced my birth family

I found my birth mother, who had an alcohol, alcohol and drug problem. She actually had a conviction for drug smuggling. My father was very violent towards his family and speaking to my birth sisters

They regard me as a lucky one because I didn't have to deal with the fallout of both the physical and mental damage that the parents' relationship, um, had put on my three sisters. You know, all of them had been in trouble, um, during their school during when they're at school. So I It might sound strange, but talking about what happened to me and how I could have turned out, you know, there's there's a Darren that's talking to you, who's been to university

He's married, has a full time job. And then there's the other Darren, who, considering the upbringing that his sisters had probably wouldn't be in a position, um, to be doing this kind of thing. Um, so I was able to pass on the experience to others through my voluntary work

Um, that, you know, I could go through my experiences saying that this has happened to me. Actually, it was a good thing that happened to me, and this is what I've been able to do, and I want to show you how to do it. Brilliant

So from Yeah, So from what? You've just kind of said, um, what kind of ways do you think that your work, volunteering and volunteering in general can kind of Do you think it can influence people's perceptions of disability? Um, yes, it can. But I mean voluntary work, you know, is can take several different directions. There's two

There's always been two things to me. There's a voluntary work where you're helping an individual. Um, say someone maybe you're helping, uh, volunteering in a care home and you're helping a person you know, to make a change to that person's life

And then there's a voluntary work on a larger scale. Um, such as campaigning, that it is not just an individual, but a group of people, which can have just as much, if not more, of an effect. You know, changing the society's view of disability is promoting things like the social model of disability through national campaigns, projects on that work with employers and schools and those kind of things

If you work with people at that level on that bigger scale, you can change a large scale of people's attitudes. I mean, you've got to remember that people's attitudes, negative attitudes towards disability will never disappear. You know, there will always be some negative attitude there

But, you know, over the last couple of years, we've seen more disabled people on TV in films. Um, we've seen, you know, we talked. There's been more people who have found employment

There's buildings more accessible. Um, you know, you can get out and do more, and it's by working with disabled people in a voluntary role because they've driven this right. You know, disabled people have driven them driven this campaigns over the last couple of years, and one of the things we need to look at is, you know, changing the views of professionals

So, you know, this has been done, so it does change people's perception of disability, but it's done over time. It's not something we're going to change straight away. It's a long, long process

Yeah, but it's that Well, from from what you've said, it sounds like your you know, your voluntary work is helping to kind of, um, you know, change those perceptions. Um, and it's been really great to talk to you today, Darren, and just hear about you know, your volunteer story and how you have, um, like, as you said, you had negative experiences, but you've kind of turned them around into a positive, Um, and that's allowed you to kind of help other people, um, that are going through, um, you know, things that you you know about. So it's been just Yeah, really inspiring to to listen to your story

So thanks very much for that. Thank you. It was good to talk to you

Thank you. Thank you.