[00:00:00] I used to feel like a, I used to look up to my colleagues and I used to want to be like them, but now I just think I'm just my own man.

Stories Labels Misconceptions NHS remains a blessing created in 1948. We want it to remain great. A podast where we share our stories explore solutions in all their glories they say its broken but its not done with your hosts Val Barrett and Dr Jeremy Anderson

Val: welcome to another episode of Stories Labels and Misconceptions with me, Val Barrett 

Dr Jeremy: and me Dr. Jeremy Anderson. 

Val: It's a podcast where we share our stories, [00:01:00] experiences, and explore solutions to the issues we face today in the public services in the uk. How are you again, Jeremy? 

Dr Jeremy: I'm doing great again, Val. How are you? 

Val: That's good. That's good. It's, we're out again on a Saturday. The weather is nice. So thank you once again. 

Val: It's lovely. I'm just taking a break from restaining my deck 

Val: and you are drinking a beer And I'm drinking tea. Okay. 

Dr Jeremy: Yes. This is a chemically enhanced version of the podcast for Jeremy.

Dr Jeremy: Yes. 

Val: And today we have a lovely guest. He's a very handsome young man. He happens to be sitting beside me, staring at me, and he's here to tell his story because last week we talked about what the government were doing with PIP personal independence, payment, which goes out to people who are live with a long term [00:02:00] disability or whatever health needs, and trying to help them get back into work.

Val: So we brought this young man today on the episode. To give it a good luck story 'cause we always hear about the bad stuff and everything like that.


Val: Yeah. So welcome Andre. How are you? 

Andre: Hi. I'm great. Thank you.

Dr Jeremy: Well great to have you here on Andre. It's 

Andre: It's great to be here. Yeah. This podcast with Dr. Jeremy Anderson. Yeah. Yeah. 

Val: And who else is here? Who else? Dr. 

Andre: Jeremy Anderson and Val Barrett. Thank 

Val: you. Who happens to be your mother? 

Andre: I'm gonna cancel without that.

Val: You're be canceled. I do. the editing anyway. 

Val: Andre. We're gonna start off with, 'cause you are 31 now. [00:03:00] 

Andre: Don't mention my age, 

Dr Jeremy: but you are, you don't look it. And so you want to go back to the beginning? Just, we're just gonna briefly talk about your disability and the health condition that you are living with and how it affects you. 

Andre, why don't you tell us a little bit about yourself to begin with.

Andre: Like my mom says I'm 31 years old. I'm good looking. I'm a qualified play worker. 

Val: Yes. 

Andre: My spare time I. Do boxing. I'm quite athletic. I sometimes play basketball with my friends and I do gaming sometimes. 

Dr Jeremy: Yeah. You play video games. 

Andre: Yeah. 

Dr Jeremy: I think we have that in common

Andre: yeah. 

Dr Jeremy: Yeah. What 

Andre: game are you playing 

Dr Jeremy: right now? I haven't been playing a lot. Most recently I was playing cyberpunk 2077. Oh. [00:04:00] And I'm very much looking forward to the new Gears of war coming out. Oh. 

Andre: Gears of Wall. Yeah. That is my go-to. 

Dr Jeremy: Yeah. But what I've actually been the 

Andre: kids. 

Dr Jeremy: Yeah.

Dr Jeremy: What I've been doing recently actually is I got a a virtual reality headset. I. And you can play video games on that as well. But what I've been trying to do is hook up two cameras so that I can create stereoscopic video to create body illusions by having a person looking through two cameras, looking at themselves.

Dr Jeremy: So one for each eye. So it's I'll, once I get it all sorted out I'll talk about it on the podcast, but I'm looking forward to that. 'cause you can create a number of different body illusions that are relevant for pain. But Andre, we were, inviting you on the podcast to, talk about your experience because as well as being a good looking guy who's a play play worker. And likes to play sports and video games. You're also young men with sickle cell disease. 

Andre: Yeah. And when [00:05:00] people say to me, oh, how does it affect you? What's it like living with sickle cell? I just say to them, it's like living with another part of my body, like my right arm or my right leg.

Dr Jeremy: Yeah. 

Andre: An easy way to explain it is like, no offence but say if I was in a wheelchair, long-term like I I could do certain things. 

Dr Jeremy: Yes. 

Andre: Like wheelchair basketball. I love watching that. That is my go-to jam. 

Andre: Yeah. 

And people be like, oh, how'd you get about, how'd you get about? I'll be like, I've always gotten about, 

Dr Jeremy: yes. 

Andre: That to me is my sickle cell. 

Dr Jeremy: Yes. Yes. 

Andre: I think of my sickle cell as me really. 

Dr Jeremy: Yes. 

Val: Part of view. 

Andre: Yeah. 

Val: Yeah. 

Dr Jeremy: Maybe we'll just do a I'll do a quick explainer just for people who [00:06:00] haven't listened to episodes before, but of a sickle cell disorder is a disorder of the way the body makes red blood cells and that causes them sometimes to change shape and form what's called a sickle shape.

Dr Jeremy: That's where the name comes from. And those blood cells get stuck in small blood vessels and they can cause a number of different problems. Most often episodes of acute severe pain that we treat in hospital but actually they can cause damage to any part of the body affected. Yeah. So if people have this blockage of blood cells in your lungs, we call that a chest crisis.

Dr Jeremy: And that's actually the most common cause of death. In sudden death. But it can affect organs in the body most often, the spleen. And of course if people have sickling affecting blood vessels in the brain that can cause different kinds of stroke. 

Val: Which you've had.

Andre: Yeah. 

Val: You've had strokes. 

Andre: Yeah. And infections and Yes. And [00:07:00] gallstones I remember it was like having rocks in my stomach. 

Dr Jeremy: Yes. 

Val: It was bad. I had it myself. 

Andre: Yeah. It was bad. I actually wanted to keep one of the stones. 

Val: Didn't you get the stones? I'm sure they gave you the stones. 

Andre: No they took the gallbladder out. 

Val: Oh, they did? With you. Okay. Okay. 

Andre: Did you. 

Val: No, they took mine out. They took it out. But also, even though you had your strokes when you were very young. Do you remember what age? 

Andre: Four. About two.

Val: Yeah. Yeah. You were two and four. But the one that you had at age four that took all your mobility away, you couldn't walk anymore. And it took about nearly a year of intense therapy for you to learn to walk again. But the interesting thing is, I'm gonna think, I'm gonna say this part because you won't remember, [00:08:00] you were at a nursery and I brought you some shin pads and you were one of these kids. You were always smiling, always laughing. Always having fun. It didn't matter what happened to you. You were laughing because I laughing, I always remember. Even the paramedics said, are you sure you're ill? Because he just kept smiling. They just kept trying to smile. 

Dr Jeremy: Yeah. 

Val: So anyway, he had this support worker at the nursery and we put the shin pads on his knees and he would use his knees, like how people would run on their feet and he'd stand right. Saying, you won't let me help him. I don't know what to do. Yeah. So even from an early age, there was this independency. 

Dr Jeremy: Yes. 

Val: He was independent. 

Dr Jeremy: Yeah. 

Val: And he had this inner strength. And even though, he's [00:09:00] 31 now. I've never heard him complain once. 

Dr Jeremy: No, 


Val: never asked why he's been in hospital countless times and because of his strokes. What treatments do you have? 

Andre: Exchange. Blood transfusions.

Val: Yeah. And you have that how often?

Val: Five week. 

Having that for about 26 years. 

Andre: Yeah. 

Dr Jeremy: Red cell exchange transfusions, like that are really the gold standard for sickle cell crisis prevention in particular stroke prevention. 

Val: Yeah. 

Dr Jeremy: And so after having the strokes, . Andre was put on these transfusions and it seems to have worked really well. 

Val: Yeah. Yeah.

Dr Jeremy: I think when we talk about sickle cell often, I think people think severe pain is basically synonymous with sickle cell andre is quite different in that sense. 

Val: Yeah. He's never had the pain. So when we meet someone else And they say, oh, what painkillers [00:10:00] is he on?

Val: And we actually say he is never had the pain. They're like a bit surprised and yeah. Other patients have said, we've never met anyone that's never had the pain. 

Andre: I remember I had an infection once, this was years ago. We were going way back and I remember I met this guy called Ryan. He lived life to the fullest, he had the sickle cell pain. 

Dr Jeremy: Yeah. 

Andre: And he asked me, oh, do you have the pain? And I said, no. 

Dr Jeremy: Yeah.

Andre: And every time I had an infection, they always asked me, do you have the pain? Do you have the pain? Do you have the pain? And I'm like, no. And a part of me wants to know what it's like. But another part of me doesn't want to know what it's like. Because they keep saying, do you have the pain? 

Dr Jeremy: Yeah. 

Yeah. 

Andre: And I'm like, what does the [00:11:00] pain feel like when you have sickle cell? 

Val: I don't know. I don't have sickle cell, but I hear it's really bad.

Dr Jeremy: Yes. Yeah. 

Andre: The part of me is, blessed not to have the pain. Okay. 

Val: Okay. 

Dr Jeremy: I think so. 

Andre: Yeah, I think because you've never had it and because I remember one person said they'd rather have the pain than have what you go through, but because you've grown up with this, you don't know anything else. So I'm going to try and describe to the listeners how the stroke has affected how you move how you walk. 'cause a lot of people think Andre's got cerebral palsy. We've asked that a couple of times because of the way he walks. Because, yeah. How would you explain that? 

So I saw this wildlife show on tv. Yeah. And [00:12:00] a part of me thought because sloths kinda walk slow. 

Dr Jeremy: Yeah. 

Andre: I walk limp. And there was this gecko who was walking slow as well. 

Dr Jeremy: Yes. 

Andre: I put the sloths and the gecko together. And I thought, I walk like them 

Andre: A bit of a limp, you mean? 

Val: Yeah. 

Dr Jeremy: Yeah. When you think about your leg strength, is there one leg that's stronger than the other? Or do they both feel the same? 

Andre: My right side is stronger. But I guess when I'm working. And if it's a long shift my right leg does hurt a bit. Yeah. 'cause I'm putting too much strength from on my left leg, if that makes sense. 

Val: No, you're putting more strength on your right leg.

Andre: Yeah. 

Val: Yeah, because when I look at your left side, your left hand, your fingers are slightly smaller than your right. And then your left leg, [00:13:00] your bone structure, you can see it's wasted away a bit. 

Dr Jeremy: Yes. 

Val: Yeah. You can see that he's got osteoporosis, so he is got that as well. And you've got epilepsy, 

Andre: I'm just looking at my fingers. Yeah, 

Val: he's distracted. And you've got learning needs as well. So you've got all these conditions that you are living with. I remember when Andre was at school and he did some work experience. He always said, I wanna work in a after school club. Always said that. So after he left school and he tried college he got support at college, managed to do his level one childcare, but you need your level two. And it was really hard to get the level two to find a college. 'cause a lot of them were saying, [00:14:00] you can't work with babies. He can't do this.

Val: He doesn't wanna work with babies. Yeah. So a lot of the courses were to work with babies and very young kids. And one day we happened to find the course that worked with older kids, so we managed to get his level two managed to get all the assignments done.

Val: He got a lot of support. It wasn't easy, but he was dedicated. You also did a media production course. 

Andre: Yeah. 

Val: And they broke that down. Instead of doing it over one year, they broke it down and he got to do it in two years. So they catered to his needs. 

Dr Jeremy: Yeah. 

Val: Do you see what I mean? So all the way through, yes. We had problems in the beginning. Nothing's ever easy, but once you find out what you are entitled to and [00:15:00] you get the right person, you can get the right support. 

Dr Jeremy: Yes. 

Val: Which we did. So the next main concern was, oh God, he wants to work because you wanna work. 

Dr Jeremy: Absolutely.

Dr Jeremy: But even just to tie the knot on that one in terms of education. A lot of the people that I work with, they enroll in, in education and sickle cell, affects their ability to participate in an education training program. Oh yeah. In some way. If they go into hospital and they miss some courses, and it seems to me in this country I don't know if it's just this country or what, but. There isn't the same kind of flexibility with respect to completing college or university level courses. 

Dr Jeremy: People often get told is you need to withdraw and try the course again next year. Yeah. Not that the course is gonna change, but just Yeah. It's the idea of you need to sort yourself out and then try again.

Dr Jeremy: But of course, 

Val: [00:16:00] you can't sort yourself out that's 

Dr Jeremy: not really what the build is going to be there. 

Val: Exactly. If 

Dr Jeremy: you've got a, if you've got a otherwise lifelong illness 

Val: Yeah. 

Dr Jeremy: There's no amount of sorting yourself out and then completing the course. What actually needs to happen is the course needs to adapt for the person. And it sounds like that's what you found. 

Andre: It does. Because we found a really nice college, and I'm gonna give them a shout out. They've changed the name now, but it was called Kensington and Chelsea College. It's a great college. And Andre could walk in and all the receptionists. All right. Andre, and the teacher, andre. And he did loads of courses. He just wouldn't leave. And it got to the stage where the teachers had to tell the reception staff, don't enroll him on any more courses. He's got to move on. 

It got to the fact my English teacher said, I'm sorry, but you've done everything here.

Andre: Yeah. 

Val: You gotta go. 

Andre: She kicked me out. [00:17:00] 

Val: But it's so nice because I remember one, day he forgot his lunch money. And I phoned up and the receptionist knew exactly where he was. 

Val: And they came back to me and said, don't worry, we'll make sure he gets something to eat. It was like our village. It was this community and it's hard to believe, it was a college, but they were absolutely great. They really good. 

Dr Jeremy: And they were flexible, like flexible contrast in terms of allowing 

Val: Yeah. 

Andre: Like I was in the library, I was the canteen. 

Val: Yeah. He knew everybody.

Dr Jeremy: Yeah. And that really is the difference, it gives people a chance to succeed, 

Val: right? It does. It does. And I know it's, it might be hard for bigger colleges or even universities to do that, but we were lucky. I don't know. But then some things are down to people because 

Dr Jeremy: yes, 

Val: even one of the staff is like we haven't really done this before, [00:18:00] but hey.

Val: What's wrong with not trying it? You could try it. Yeah. Absolutely. Because they found that there were a few kids around Andre's age that kind of needed more time to do the work. 

Dr Jeremy: Yes. 

Val: So they got all of them. They extended all of them on. They split up the units and it worked because the whole point is you want people to get through the course.

Dr Jeremy: Of course.

Val: When we talk about access, we talk about disabled people in society, or people with learning needs. Then we have to be flexible. 

Dr Jeremy: And why wouldn't to be You want to do something new. 

Val: Exactly. 

Dr Jeremy: If we never did anything that we haven't done before we would never do anything new. 

Val: Yeah. Yeah. And he made loads of friends. Yeah. We haven't dropped him off at that party they had. And he was always talking to someone. Who was that? It was just I just think that college is absolutely brilliant and, still today we will drop by and say [00:19:00] hi.

Dr Jeremy: Yeah. 

Val: And that was what you are 31 now over 10 years. Yeah. Over 10. And they always, or if Andre isn't with me, they always say, how's Andre? Yeah. And that is so 

Andre: I've got a reputation there.

Val: It's nice. So Yeah. 

Dr Jeremy: I'm sure you have a reputation, but you also, you got a qualification, right?

Andre: I do. I do 

Val: He's got loads. 

Dr Jeremy: Yeah, you've got lots of qualifications. And that's allowed you to work. 

Andre: Yeah. Yeah. 




Dr Jeremy: What kind of work do you do, Andre? 

Andre: I'm a play worker. Uhhuh. I work with the kids, which are, I should say labeled one to tens who have disabilities, but you can't see 'em. 

Dr Jeremy: So what would be an example of a disability that you can't see?

Andre: We had this one kid that I, was looking after 

Dr Jeremy: Would be an example of a condition someone would have [00:20:00] that you wouldn't?

Andre: Autism, 

Dr Jeremy: autism, so you don't necessarily see that, or you can't tell by looking at him, but 

Andre: didn't know it at the time. Yeah, because he was running wild and we thought he was just causing trouble. And I had to tell him off a few times, not to cause trouble. But he was like, saying, sorry too much and he didn't really mean the sorrys and so my superior told me yeah. That he had autism where Okay. The, where the inclusive where we called one to ones. You can see the needs. 

Val: Can we go back a bit before the work? 

Dr Jeremy: Sure. 

Val: Because we talked last week about people getting into work, we really want to highlight how we transitioned Andre from college into getting this job that is always [00:21:00] dreamt about. 

Dr Jeremy: Yes. 

Val: We live in the London Borough of Kensington and Chelsea. And what we did was just before Covid I think, yeah, he did some voluntary work. I just walked into this adventure playground and I braced myself thinking once I tell them about all his needs, even though I've got his qualifications, they're gonna say no. So I walked in there and I spoke to the manager, and I said, look, my son's got his qualifications.

Val: We are looking for some work experience, but I need to tell you about his needs. And I was ready for whatever was going to be said. 'cause we've been there before. Said, fine, when can we meet? And we had a risk assessment done to make sure he would be okay within the workplace.

Dr Jeremy: Yes. 

Val: And they knew what they had to do for him. [00:22:00] So he did, I think it was about just under a year. Then we worked with this organisation in Kensington and Chelsea, called Balance. They're absolutely brilliant. Now they're set up to help adults like Andre to get into work. They help with the application forms. They sit with him on the, interview. As I know if I was there, I would probably be doing the interviewing. 

Dr Jeremy: Yes. 

Val: I'm a mom. And she was absolutely great. She really was. You just have to find where this support is. You do. But I've always raised Andre in a way that your physical disabilities, they don't define us. You can do whatever you want to do. He'd been ice skating in his wheelchair. Yeah. Because he uses one from time to time for going away long distances and blah, blah, [00:23:00] blah. But sure, we've never made it an issue. I've never allowed anyone to say, oh, he's sick. I said, no, he's not sick. If he's sick, he'd be on a ward. When he is at home, he's Andre, I've never allowed that to enter his mindset. 

Dr Jeremy: Yes. 

Val: He even tried karate. He's tried everything. 

Andre: It didn't go well. 

Val: Yeah, no, he didn't go well. Because every time the sense they shouted, he had an epileptic seizure. Oh. But at least we tried. He tried, but we just people might think they're listening to this. They, oh no, we laugh a lot. Yeah. We laugh a hell of a lot. Believe me. Yeah. We get through life, we get through whatever it is that's thrown at us, so anyway, he went to an interview, but unfortunately , he didn't get that.

Val: So I then thought I have to be proactive because I couldn't [00:24:00] concentrate on me. I couldn't move on in my life till I knew my son was set up. 

Dr Jeremy: Yeah. 

Val: Does that make sense? I just didn't feel right. I just didn't. So I'd Google phone up all these adventure playgrounds. 

Dr Jeremy: Yes. 

Val: Introducing my son. One of them was really impressed. 

Dr Jeremy: Yeah. 

Val: I said, I know this is going to sound strange, but I'm phoning up for my son. But she didn't think it was strange. She didn't. So I passed the information on to Kelly who works at Balance and they filled out the form, got him a lovely suit for the interview. Now this is why the tone of my voice has changed. 'cause 

Andre: can I , tell it. 

Val: You will say what happened, but I'm just gonna lead up to it. So I brought, he got a lovely suit. He looked smart, he looked handsome, and we went down there [00:25:00] and I waited in the car. Andre and Kelly went into the interview. Would you like to take it over Andre? 

Andre: Okay, so first of all, the interview went well, Uhhuh. I was nervous, the questions and, but I passed and I got the job, and after the interview, I went on a zip line. 

Dr Jeremy: Oh, really? 

Val: Muddy. Muddy. 

Andre: It wasn't muddy 

Dr Jeremy: Wow. 

Val: In a suit. 

Andre: I had to show my fun side

Dr Jeremy: wow. 

Val: Yeah. 

Dr Jeremy: Fantastic. He got this job, right? 

Val: They didn't tell him straight away. Yeah. He came home and , late afternoon, they phoned. 

Andre: I was bricking it, I was thinking two sides. Yeah. I haven't got a job. I have got the job [00:26:00] 

Val: and it was just brilliant. Honestly. It's all you could wish for as a parent.

Dr Jeremy: Yeah. 

Val: And when you are a carer and you know that life is hard enough for your child and that society is going to look at them differently, and they've got to compete with everybody else. Yeah. Is he going to be able to get a job? 'cause he wanted to work. This is the thing.

Dr Jeremy: Yeah. 

Val: And he could work. 

Dr Jeremy: Yeah. 

Val: And he was, it was his passion. And one college that he went to many years before we moved to Kensington and and Chelsea, the manager , he was very rude. The manager said the government said we have to find these people, meaning people with disabilities, jobs in factories. Nothing wrong with that. But you haven't asked any of these young people what they would like to do. 

Dr Jeremy: Yeah. 

Val: If this was a [00:27:00] group of young people that didn't have any particular needs, you'd be asking what their aspirations and dreams were. 

Dr Jeremy: Yes. 

Val: Ask them. 

Dr Jeremy: Yes. The key people, 'cause it's people 

Val: that limit people.

Dr Jeremy: Yeah. And having worked, I think I mentioned last time that I used to work for a company that our whole job was to help people work. And getting people into work in a successful place where they enjoy what they're doing and they stay in the job. It involves getting them something that they're good at and that they're interested in. So it's something that plays to their strengths and also, letting them choose what activity they wanna do something that aligns with their interests. And it sounds part of the process has been, finding an an educational institution that is willing to be flexible 

Val: Yeah.

Dr Jeremy: So that the person that, that everyone can get the qualification they're looking for. And then there's a certain amount of [00:28:00] advocating on Andre's behalf and phoning around finding places. But really all it's taken has been an employer that's willing to be flexible.

Val: Yeah. 

Dr Jeremy: And make the job fit for the people who are applying for it. Andre, I had a question. This might sound like an obvious question or like a silly question, but 

Andre: how do I get so fit in shape? I. Yeah. How did you do that? 

Val: That's not the question. 

Dr Jeremy: No. What do you, 

Andre: of cause 

Dr Jeremy: What do you like about your job? What do you like the most about your job or about working? 

Andre: What don't I like about my job? Yeah. I like meeting new people. Uhhuh. I like being active. I'm a social butterfly. 

Val: Yeah. I've never heard that. 

Andre: No. But the thing I like about my job is my colleagues, because I just like the chat and just messing them about and [00:29:00] just, and I like the kids as well. Yeah. 'cause they're teach me new things and because I'm 31 now, they're teaching about, what they're doing, what's new, what's hip, what's not hip. And I'm like, 

Dr Jeremy: because you're the old man now at 31, we're 

Val: old.

Andre: And I keep saying, why you got gray hair?

Dr Jeremy: Have you got gray hair? 

Val: Yeah, he has. Really? Yeah. Yeah, he has. Okay. 

Val: So would you like to say who you work for? Because I don't think you've mentioned them. 

Andre: I work for. A company called oasis Play. 

Dr Jeremy: Okay. 

Val: And where are they based?

Andre: Bolton Crescent in Kennington. 

Val: And the thing about Oasis play, what's unique is the children that go to their playgrounds, 'cause they've got two, they are [00:30:00] disabled and non-disabled kids. So if you can imagine that a young disabled child is going somewhere and seeing staff that are reflecting their community.

Dr Jeremy: Exactly. 

Val: Because we're always talking about other people's communities should be reflected. What about the people that are disabled? 

Andre: Yeah. 

Val: And the fact is Oasis play, they don't need a handbook. They didn't need instructions to say this is how you must take care of your staff. They take care of their staff.

Val: Yeah. There's a particular member of staff who takes care of people like Andre. So he is able to do his job, but also under the government scheme, Andre comes under the DWP access to work scheme. [00:31:00] So because of his learning needs and his epilepsy and everything else, the way his epilepsy is he will suddenly just stop. And he can't move and he can't speak. So can you imagine you are crossing the road and you just suddenly stop. Okay. 

Andre: Hold on. That happened to me one time when I, 

Dr Jeremy: yeah. 

Andre: When I was going to the shops. I remember I was so excited to get him back home. And I had a seizure and I fell to the floor. And these two guys, I thought they were gonna mug me or something, but they helped me up 

Val: and they brought him home. 

Dr Jeremy: Yeah. 

Val: Yeah. So not all young people are bad. 

Dr Jeremy: They took care of you?

Val: Yes. Yeah. Yeah. Yes, they did. 

Val: And one of them was on the other side of the road. And he was watching him and he ran across the road and him and this other guy brought him home. So what I was saying was, what was I saying Jeremy [00:32:00] about 

Dr Jeremy: you were talking about the DWP Access to work scheme.

Val: So we get that, and under that scheme, they pay for support worker. Now that support worker is just there for Andre, 

Dr Jeremy: right? 

Val: He is there to help Andre do his work. And he also gets taxes to and from work. So all this helps him to stay in work. That's the whole point. I think we don't look at that enough. We don't talk about what work can do for you, what it can do for your wellbeing, your confidence, blah, blah. But what about somebody who's living with so many complex needs? Imagine what the world of work can do for them. Imagine that. 

Dr Jeremy: Absolutely. We're it that right? 

Val: he doesn't even see it as work. They had to force him to take annual leave who has to get forced to take time off work. And they were telling him, you are getting paid, [00:33:00] but it didn't matter. It wasn't about the pay.

Dr Jeremy: Yeah. 

Val: To him, it's not work as in terms, as people see work, because it takes him away from the hospital. Care takes him away from all the blood transfusions, 

Andre: takes him from the mom, 

Val: and most importantly, takes him away from me. I have free time. Yeah. People don't seem to understand that it's like a break, it's a holiday, it's fun, yeah. And, they pay for all of that. He's got a brilliant support worker who mentors him as well. Do you wanna give a shout out? 

Val: Shout out to ricky. 

Ricky's. Brilliant. Andre's grown a lot. 

Dr Jeremy: Yeah.

Val: In fact, he's cooking. He's going to prepare the meat tonight. He's going to be cooking tomorrow. 

Andre: Ah, 

Val: yes you are. You already said you would. 

Andre: Ah, 

Val: yes. Stop the you're, [00:34:00] come on. You've grown. You've grown. Ah, because I've got to remember to be a bit more hands off. 

Dr Jeremy: Yeah. 

Val: So I've had to learn that. 

Dr Jeremy: Yeah. 

Val: I used to take up Andre. I used to take, he's like a child.

Dr Jeremy: For many years. You were solely responsible for Andre Val as you raised him. 

Val: Still am. But yeah. 

Dr Jeremy: And raising someone with some disabilities, obviously, you're maybe more involved than 

Val: Yes, of course. 

Dr Jeremy: Than other parents might be.

Val: Yeah. Even though he is the age he is, yeah. I still take him to his transfusions and I still sit there. Still sit there. Yeah. I tell these doctors I'll be with my Zimmer frame. I'll be here. Yeah. I dont leaave him I don't 

Dr Jeremy: think the challenge for, I'm not a parent, but I think the challenge for any parent when your child becomes more independent is that letting go and having the confidence that they can handle things on their own. And so that's what you're learning [00:35:00] to do right now? 

Val: Just a little bit. 

Dr Jeremy: A little bit. 

Val: I keep, asking him, when are you leaving home I know. The only way he would leave home, he'd move next door and probably knock down the wall and put a glass partition in so I can see.

Dr Jeremy: Keep an eye on him. Yeah. Yeah. No. 

Val: Yeah. It's weird because even though you want to give them their space. I have to respect the fact he is a grown man, but I know how his brain works. He is part of his brain. It is damaged. It is and how a person of his age would deal with things. Andre doesn't deal with it the same way. And at times it's like he's got the terrible twos at times he really, he's looking at me weird. 

Dr Jeremy: That's the complexity, right? 

Val: It is 

Dr Jeremy: I think that's the thing with disabilities, we tend to look at people with disabilities as nothing but their disability. But the truth is that people are much [00:36:00] more complex than that. 

Val: Oh yeah. 

Dr Jeremy: There, are things that Andre is learning right now. Learning to cook and learning to do different things and working with the kids in the adventure playground. 

Val: Uhhuh, 

Dr Jeremy: Andre, you said you're learning from the kids there, right? You're learning what's new, what's hip, and. 

Val: But learning is a two way street. Yeah. Because even though I am the parent, I must say I've learned a lot from him. I do admire him. 

Dr Jeremy: Yeah. 

Val: He's resilience. I know we overuse that word, but I do, I admire the fact that he puts himself out there knowing the difficulties he has, knowing how people might look at him and the questions that he might get. And no matter what, when, you look at your child, you still see a 2-year-old and a 31-year-old body, you look at them and you just still, you want to take all that pain away. You don't want them to have to go through [00:37:00] all those challenges that life gives us anyway. But imagine, as I said before, all the challenges on top of the challenges that you are going through, and those are the things I can't take away. I can't do the blood transfusion on his behalf. I don't have epilepsy. I don't have any of those , the most I can do is be there. That is it. Just be there and try and help him achieve his goals. And, I'd like to ask you a question, Andre. 

Andre: Yeah, sure. 

Val: What has achieving your dreams meant to you? How do you think you've changed?

Andre: I've matured. 

Dr Jeremy: Yes, 

Val: that's true. 

Andre: I've grown in a way where I can talk to my [00:38:00] colleagues and have a full conversation. 

Val: Yeah. 

Andre: When I'm working, I think can have the courage now to just tell the kids off and just say it. Snack time. Just go. Just go and get your snacks and just go, it's soft play is closed and they'll listen.

Dr Jeremy: Yeah. 

Andre: Meaning I think I have a voice now. 

Dr Jeremy: Yeah. 

Val: You found your voice. Yeah. You've always had it, but you've realized that you've been empowered to use it. 

Andre: Yeah. 

Dr Jeremy: Yeah. Yeah. 

Val: That's what it's done. 

Andre: Yeah. 

Val: But also since you've been having , your mentoring what has that done for you?

Andre: Oh, wow. I think I've learned some new skills. Shout out Ricky. 

Val: Yeah. We shouted them out already. 

Andre: I think it's gave me the confidence to just, let things go, and not take things seriously. 

Val: Yeah. 

Andre: And what would be will [00:39:00] be, 

Val: yeah, 

Andre: because to be honest, I used to be before Ricky, I used to be paranoid come every problem. 

Val: Yeah. 

Andre: And he and Ricky, the difference between Ricky and me, I was the paranoid one. And he was the chilled one. 

Val: Yeah. 

Andre: I used to say to him, what I, we like fire in water, 

Val: but that's people's, that's your personality. But since he's been mentoring you are learning not to take everything so seriously. 

Andre: Yeah. 

Val: To heart. 

Dr Jeremy: Yeah. 

Val: So it does help, but, you know what, there's more to come do you know what I mean? 

Dr Jeremy: This might seem like a, maybe a personal question but Andre, how do you feel about yourself since you've been working a competitive job?

Andre: How I used to feel about myself 

Dr Jeremy: Yeah. 

Andre: I used to feel like a turtle. I used to look up to my colleagues and I used to want to be like them. But now I just [00:40:00] think, I'm just my own man. 

Dr Jeremy: Yeah. When you say, 

Andre: I'm like thinking, taking Rick's advice, I wouldn't say I'm a hundred percent there.

Andre: Yeah. With the confidence yet. Yeah, but I'm growing. 

Val: there's been growth. 

Dr Jeremy: Yeah. I like that metaphor of, I, I felt like a turtle. When you say you felt like a turtle, what do you mean by that? Is it were in your shell and now you're coming out?

Andre: I used to hide in my shell when, yeah, when when the other colleagues used to play basketball and I used to just sit there and I just wanted to just have their confidence. 

Dr Jeremy: Yeah.

Andre: If you ever watch Space Jam and the aliens steal Michael Jordan's energy. And they just have his say powers to dunk the, basketball in the net. 

Dr Jeremy: Yeah. 

Andre: That's how I [00:41:00] felt. That's how I wanted to feel. But now I feel like I've got my own power. 

Val: Your own power. 

Andre: Yeah. Yeah. And 

Val: like I said to you, you've got to in you because you are good enough. Yeah. Yeah. You are good enough. And I used to always think that Andre needed to understand the world better from his perspective, but I was wrong. The world needs to understand people like Andre.

Dr Jeremy: Yeah. The 

Val: world needs to be more flexible, need to be more accessible, need to be more inviting when you have a place that. Has no wheelchair access that says you don't want anybody in there who's in a wheelchair. It's what it says. 

Dr Jeremy: Yeah. 

Val: It's what it says, 

Dr Jeremy: yeah. And I think that's something we don't often think about sometimes when we talk about workplace [00:42:00] accommodations for people with disabilities.

Dr Jeremy: Yeah. We think about the accommodations as affecting just the people with the disability. And I've got a little dog staying with us. Our neighbor's dog is Oh, okay. And she, she barks a little bit more. That's not my dog, no. Is it to bark. But I was just thinking making accommodations for people.

Dr Jeremy: I think it doesn't just affect the people I. With the disability for whom we're making the accommodations. It affects the other people in the workplace. Exactly. So if you work in a in a, I don't know, in an office somewhere where there's no wheelchair around because you're just in an environment where, people with wheelchairs are either, not wanted or not accepted or not thought of as capable of doing this job. 

That's 

Dr Jeremy: a very different kind of workplace than a workplace that says we're here to support everybody. 

Yeah. Yeah. 

Dr Jeremy: And I think that, I don't know, we probably don't think about that very often, but how that affects the people who are not getting [00:43:00] the accommodation themselves.

Val: Yeah. 

Dr Jeremy: But they're just even, their own wellbeing, their own sense of what kind of an organization are they part of. 

Val: Exactly. Is 

Dr Jeremy: different. Because 

Val: if we carry on the way we are. There'll be more people will have to leave , the workplace. You don't have to be born with an illness or disability.

Dr Jeremy: Yeah. 

Val: You can get that at any time in your life. Yes. And then when a workplace looks at some, let's say you've got somebody at work is at top of his game or her from her game. Yeah, 

Dr Jeremy: sure. 

Val: And God forbid that person has an accident, they end up in a wheelchair. Okay. 

Dr Jeremy: Yeah. 

Val: Are you actually going to let that person go because you can't accommodate them and all that skills and knowledge and experience that person has.

Dr Jeremy: Yeah. 

Val: You are willing to let that [00:44:00] person go. 

Dr Jeremy: Yeah. We've all, that would be horrible for the organization. Exactly. 

Val: But horrible for the person. Incredible. It's incredibly 

Val: stressful because 

Val: then what happens, that person can then deteriorate. Their mental health cause an effect. The money then goes onto the NHS as the NHS is broke.

Dr Jeremy: Sure. 

Val: But at the, but even just whole point, we need to keep people. Yeah. We need to try our best to get people into jobs, not just a job. Ask them. 

Dr Jeremy: Yeah. Is 

Val: there a job you would like to do? 

Dr Jeremy: But you also raise a perfect example there of even somebody who is quite capable in their existing job.

Yeah. But 

Dr Jeremy: the stress of what if I'm not able to do something? What if something happens to me? 

Val: Exactly. Yeah. And I'm not, and I'm, 

Dr Jeremy: what if I'm not perfect, right? If the difference between having an employer that will accept you even if you're not perfect. 

Val: Yeah. 

Dr Jeremy: Versus an employer that [00:45:00] says, something's happened to you.

Dr Jeremy: That's fine. We'll accommodate you. You're secure. Yeah. You're safe. The psychologically, the difference for the employee is night and day. 

Val: Exactly. I know we've gone off a bit, but Andre No. Soon as you are our guest we will give you the last words. Is there anything you would like, any information or any tip, anything you would like to say to someone out there that may have a disability or an organization? What would you like to say?

Andre: I'm not good at words, but, 

Val: okay. Just say it.

Andre: If you have a disability or if you know someone with a disability don't pull them down. Build them up. Tell 

Val: Wow. 

Andre: Tell 'em to fulfill their dreams. 

Val: Yeah. 

Dr Jeremy: Yeah. 

Andre: Peace out. 

Val: Yeah, I think that's a good note to end on that. [00:46:00] Andre's gonna go because he's gonna cook my dinner, 

Dr Jeremy: oh, okay. 

Val: Oh yeah. We're building him up. All right. 

Dr Jeremy: Absolutely. 

Val: Thank you Andre for your time. 

Dr Jeremy: Thanks for coming on, Andre. It's been great chatting with you today. 

Andre: Mention it. 

Val: Yeah. Great. Spending time with your son. 

Dr Jeremy: Absolutely. Okay, you guys enjoy the rest of your weekend. I will get back to staining my deck. 

Val: You go and stay in your deck. 

Dr Jeremy: Okay? Take care 

Val: wherever your deck is. Alright, thanks for listening. Bye. Leave a review and follow us wherever you get your podcasts. Bye 

Andre: bye bye.