What Advocacy Really Looks Like

Esi 

Welcome to the Equality Edit, where we unpack equality one conversation at a time. So today I’m with Isaac, who’s going to introduce himself in a second. So Isaac and I, I’ve seen Isaac on LinkedIn for years and I’ve always been quite envious of his social media following. But in the summer, this summer, no, last summer, wasn’t it? We were brought together in a film called Fighters, which is about disability equality in Britain. And Isaac and I both contributed to the film as disability experts. And actually when I met him, I realised how funny he was and how much information he had to share about advocacy and leadership and just disability life in general. So I jumped at the chance of inviting him on this podcast. So my highlight, and I hope he’s gonna, teach me how to is the fact he’s got over 35,000 followers. And I’m only like a tiny bit jealous, I guess. But I think this is a really good opportunity to bring Isaac into this conversation to start by introducing himself. And if you wouldn’t mind Isaac, just to introduce yourself and tell us a little bit about you. 

Issac 

Gosh, mean, where do I begin after all of that? Well, firstly, thank you for having me. And it was a pleasure really getting to know you during the promotional, promotional, that’s the word, promotional, when we were doing the promotion for Fighters. And that was the first time that we actually got to sit down and actually talk with each other. Because actually one thing you forgot to mention, the first time we actually met was in Paddington Station. of course! my yellow hat. Yeah! 

Esi 

Oh my god, you know what? I wiped that out my memory because I came I was like, oh my god, it’s Isaac. So I was like I came over to you and you were wearing this really cool yellow hat and I love this and I said, oh hi, Isaac. My name is Betty Harding. You like hello. And I was like, oh my god, it’s so embarrassing. Rats swallowed me up. So actually I wiped that from my memory. 

Issac  

Well, I’m here to bring it back. thank you so much. You’re welcome. Who would have guessed that moment we would become friends, you know?  

Esi  

Thanks, thanks very much. No good deed, hey. I know, know, know, friendship happens in the most mysterious way. 

Issac  

It’s really close.  

Esi  

I think that’s called a power imbalance, actually. 

Issac  

That’s it. Okay, so yeah, my introduction. So yeah, I’m the guy who wears the yellow hat. And on top of that, I yeah, so I’m Isaac, I was born with a disability called Nymphalic hypoplasia, meaning I have no arms and short legs. I have a weak pelvis meaning I’m not able to walk. 

But I use my electric wheelchair to get around. And I got scoliosis, which is the curvature of the spine. And then on top of all of that, I’ve got acid reflux. But even though I have all of these things that I go through on a day-to-day basis and do bring up quite a lot of obstacles and challenges, I have very supportive people around me who have really pushed me to be the best version, of myself and that’s allowed me to come out of my comfort zone in many different aspects and allowed me to do things that I never thought I would see myself involved in such as skiing, skydiving, tall ship sailing and other adventurous activities but also well from that turned into advocacy sharing my lived experience on LinkedIn primarily. 

And sharing the realities of living with a disability and it’s allowed me to collaborate and connect with people within the community and give me such opportunities such as being part of London Fashion Week, being able to be part of the Purple Sock movement and also being on this podcast. So you never know where it’s going to take you next.  

Esi  

Absolutely brilliant and I want to you know, think that leads really well into kind of how advocacy shows up for you and why you think it’s so important But I just want to go back to something you said a minute ago about kind of the the experiences you’ve had and that’s something else we can bond over which I didn’t know actually that we’ve both been on the tour ships, so did you go on and when 

Issac  

Okay, so this was Jubilee Sailing Trust. Oh nice, okay cool. So I did my first one in 2017. Okay. So that was from Cardiff to Bristol. Okay. So that was a four-day voyage and then I did one from Portsmouth to Caen in France. Yeah. And then back again which was six days. 

Esi  

Yep, that’s me as well.  

Issac  

And then the last one was kind of like a race between the two ships around the Isle of Wight. 

Esi  

Oh God, that sounds amazing. I’ve already done one. I didn’t mind when I was 19. So I think it was 2000 and no, no, no, can’t be 2000. I think I’m younger than I am. So 1999, I think. And I went from Falmouth to Calais and back again. Oh no, not back again. We docked in Southampton. 

Issac  

Okay. 

Esi  

And it was over my 19th birthday. 

Issac  

That’s cool. 

Esi  

Actually, you may or may not know these Isaac but I was on the promotional marketing material for JST Jubilee Saving Trust for years and they used me in all their events and stuff because at the time I wanted to be an actress and so they hoisted me up the mast in my wheelchair and I was in a really bad mood and he said smile and I was like no I’m not gonna smile and he said well actresses always smile on cue and I was like right fine   

Issac  

Thank  

Esi  

And then I smiled and he used that photo. Manipulation to photographers. 

Issac  

Nice! Okay cool! 

Nice! that’s cool! 

Esi  

Yeah, no, it was really fun. Anyway, but back to you and back to why we’re here today, we can talk about our various kind of appointments at another stage. Let’s talk a little bit about, you know, why advocacy and leadership is so important and why advocacy really is important in relation to lived experience of disability for you. 

Issac  

Yes, see the thing is, it’s a bit of a weird one because for me, looking back on my whole life, technically I’ve been advocating since the beginning because not being able to get onto a bus or a lift being out, I’m always kind of saying, well, why is this happening? I mean, I’ll be honest, from where I was back then to now, I wasn’t really outspoken, but I would, you know, speak to people around me saying that wasn’t right or I may send an email to the company and say you know this is not correct like I wasn’t and I still sometimes not too outspoken I kind of pick my battles and I know when to say something or not so technically I’ve always been advocating but not really realizing that I was because I didn’t really see myself as an advocate and When I was doing, so all these adventures that I shared, was vlogging them and filming them and putting them up onto YouTube. Because I’ve always been a creative person and that was one of my ways to really express myself creatively. even though I was doing the skiing and growing up the mast and doing all these different things, I was showing people. What can be done with a disability, but I explicitly said, oh, this is what you have to do if you’re a wheelchair user, this is the type of ski that you can use when you go in skiing. I never really said that, I was just doing the activity and calling it a day basically. And friends and family kept saying to me, oh, you you should really talk about disability, you could really change people’s perspectives and understanding about disability for those who are, allies but also the disability community. I thought, why do I have to do that for? That doesn’t make any sense. Why would I talk about disability for? It didn’t make any sense for me to talk about it. So they kept telling me and I kept on ignoring them. And then I was given an opportunity to do a public speaking engagement at an event. It was up in Birmingham. They wanted me to talk about life’s obstacles, but also how I still have a fulfilling life. So I spoke about pain level and pain management, having to always have someone to support me every day. But then again, I can still do the activities that I’ve just mentioned. And after I’d finished the talk, a woman came up to me and she said, you know, I get loads of pains in my legs. And I’m always complaining about life, but after hearing your story, it’s really changed my perspective. And I was going on the first time I realized the impact by sharing my story was and advocating by sharing my lived experience. And from that point, I started talking more about it in videos, which people did appreciate. But the real turning point was when I joined LinkedIn. Which I primarily started to talk about wheels and wheelchairs and now roller skating and wheelchair group. when it got to, so I signed up in February and then it was coming up to July and was connecting with other advocates and I heard this month, disability pride month. And I was like, what’s this month all about? And I’ll be honest, I thought it was a follow on from pride month being in June, and then Disability Pride being in July. But then learning that it was more like pride of having a disability and celebrating that. So I wrote a post about it and what it meant to me and that post ended up going semi-viral and that’s when I really saw that I did have a voice in the community and people connecting and wanting to learn and then from the wheels and wheelchairs turned into more about my everyday stories. 

Esi  

Wow, my God. So that’s quite, you know, I didn’t know what you think of the word, but it’s quite a journey, isn’t it? From kind of really almost holding back and not wanting to at all. And I’d love to, if you’re comfortable to discuss the reasons why you didn’t want to in the first place, to really kind of understanding the power of your voice to really kind of using it to build your career, really.  

Issac  

Yeah, mean, I don’t, I mean, I don’t really have a defining answer because I think for me, even though I did have a disability and there has been many, many obstacles and it does continue to be obstacles. The way I was brought up and friends and family, they just treated me like everybody else. And I kind of just carried on and I Obviously, like I said, were obstacles were there, but I didn’t really think about it. I just kind of got on with it. So then when people said I should talk about it, I said, why should I talk about it? So it was like kind of taking a bit of a step back and having a different perspective of the importance of talking about it and seeing it from that light, if that makes sense. 

Esi  

It does make sense. Can you talk a little bit about what that perspective is? Because I mean, I do get what you’re saying about you. I also grew up in a family that I was just who I was and I was part of that family. There was nothing special about me because I was a disabled person. Obviously, I was special. so it is. But not because we’re disabled, but just because we’re absolutely wonderful. 

Issac  

I said. 

Esi  

But, you know, it wasn’t kind of you’re disabled, so we have to treat you differently. Or don’t forget your sister’s disabled because she needs this. The support I needed was part and parcel of of kind of just our family life, but it wasn’t a big deal, if you know what I mean.It sounds like if I don’t know if you like this language or not, but it sounds like there was there was a lot of defining steps on your journey to getting you to the position that you’re in at the moment. An advocate and using that storytelling to advocate empowerment of disabled people and empowerment of yourself. Are there any specific defining moments or do you think it was all leading towards that? 

Issac  

Yeah, I mean in some ways like when I look back on my whole life up until now there were points that has helped get me to where I am today but I was in the mindset of well okay so I guess this was a bit of a well it was a huge defying moment so I was really going through challenging times with my mental health and back then I didn’t really know it as mental health. I just didn’t feel right. And I was really relying on external factors for internal happiness. And I was someone who compared myself to a lot of people. whilst I, well before, no, so during the time of doing the vlogging and when I did that public speaking engagement. Internally, I wasn’t really feeling right. And I was comparing myself to what society thinks as what happiness is. So one was being having a successful job. And I enjoyed doing the vlogging. And then in 2017, I’d won an award, for the vlogging and it was like this huge moment of because it was a competition that was partnered with YouTube, The Evening Standard, The Jack Petchy Foundation and a few others and I’d won this award out of 1,500 young people and when I’d won I was in the newspaper and given an opportunity to go on this morning and what was the other one? ITV news and London live. And it was first time I’d had like TV appearances and live showing. Like this was kind of like one of the first moments. And annoyingly, when it all happened, I was like, okay, well, now I’m gonna get a million subscribers and, I’m gonna have a mansion tomorrow and I’m gonna get all these girlfriends and all this kind of stuff. And my passion turned into like,  now it needs to be something successful. And it never happened. And my passion kind of got deflated because I was like, I’m not getting thousands of views and I’m not getting money from this. And it was really sad,  like all that passion and excitement to do it was then drained because I wasn’t getting the views and engagement. So there was that and not seeing myself as having something successful. Then being in a relationship was another. I thought to be happy in life, you had to be in a relationship. And when I looked at other influencers at the time, you saw like the happy couples and you know, as influencers are and it’s got better now, but back then no one really spoke about mental health and the realities of it. So I just thought, it’s all happy and sunset and roses. That’s the life that I need to live. And I was really focused on, one of my focuses was being in a relationship and I ended up being in one, so getting into a relationship and internally I still wasn’t happy and I was like, oh, I finally got one of the things I’ve always wanted and I’m still not happy and it really make any sense. And I’ll be honest, I became a bit selfish during that time because I was like, finally got what I wanted. So I need to be happy about this. Obviously being selfish in a relationship doesn’t work. So that didn’t last very long. And then, and then the last, thing was because of like the TV appearances and things like that, people were then looking up to me and I was seen as this inspiration or motivation and I was like, oh no influencers talk about the bad stuff, you know, they only want to hear about the good stuff and if I talk about something bad, people may feel disappointed in what I have to say. So I never really spoke openly about it and I was like, well, I’m sad it’s only me who goes through this. So, you know, I can’t really speak about it. And I never spoke up to friends and family about it. And it was just, everything basically happened at once and just got to a breaking point where I was like, really need to learn why I’m feeling like this. And yeah, I took it upon myself to learn about wellbeing and understanding and mental health and importance. Of that and that’s when I learned about meditation and breathing exercises and things like that and I feel like I’ve gone totally off topic from your original question. That’s alright. your original question was but yeah can you remind me that and then I can tie it back. 

Esi  

That’s really good. You know, I think there’s links to what you’re saying. First of all, thank you so much for sharing that. you know, one of the, you know, I love that you put humor in that as well. But one of the big things that for me in what you were saying is that, and I think a lot of people could probably identify this and I definitely can identify this with this as well, is that in all of that time, it sounds like there was no role models for you to look up to or to look at and think, well, this is how I can almost kind of structure show what ambition looks like for me. 

Issac 

Yes, yeah, I mean, well, I guess with even with the people I was looking up to were kind of like the fake personalities and I was kind of leading wanting to be that. And because they weren’t saying the full truth, I thought I wasn’t getting to that stage. Yeah. So it was kind of like I’m doing what they’re doing, but actually I’m still not happy and that doesn’t make sense. Yeah, meaning they probably weren’t happy in them. Well, I can’t say that for everyone, but for some of them, they probably weren’t happy as well, but they’re only showing the good side of life, which was like, made me feel like I was not getting to their level when actually they probably weren’t there either. So yeah.  

Esi  

Yeah, I think we all know now that, you know, in order to get that perfect Instagram happy picture, people have taken about 30 shots. Yeah. the time, it was quite, at the time it was quite new. 

Issac  

As I was all going through like, so, you know, in 2012, I had the opportunity because the school recognized me as a high achiever. They nominated me to carry the Olympic torch. So I did that in 2012. Then in 2017, like I said, I won that award and then had all that recognition and all of these different things that have given me the high profile. 

 They did set me up for who I am today, but at the time I didn’t see them as these big things. Because again, I didn’t have a successful job, didn’t have a relationship, I was seen as this inspiration, I can’t talk about how I’m actually feeling. So it was literally all of these defying moments that I didn’t realize were defying moments until later on. 

Esi  

So bring it, mean, that’s really, I think that’s a message for everyone, listening, young people, know, people in work at the moment, that, you know, we have to stop sometimes and realize what we’ve succeeded, what we’ve achieved and what we’re succeeding right now, because we can’t just carry on and then miss all of these little things that actually build what we are trying to build over time. So I think that’s a really important message. So kind of Sorry Isaac. 

Issac  

No, no, I just gonna say, just appreciating the small wins. Yeah. that can go a long way. 

Esi  

Yeah, so I want to take us, you know, take us back to kind of how and I can, I can see, but I don’t want to make any assumptions for you how this shows up in the advocacy and the leadership that that kind of you work towards today. I also just wanted to share a little tip and this is something I do for myself in terms of kind of noticing those little things because I’m somebody who’s always beating myself up. you’re not good enough. you didn’t do that. If you just did that that way, that would have been so much better. So what I started doing at the beginning of last year is writing things down. So I’ve got like the journal app on my ⁓ iPhone and every evening I just spend literally just five minutes making a voice note about what I’ve achieved today. So I ignore all the little bits that I didn’t do right or I don’t think I did right and focus only on the things that I’m proud that I did. And it could be, I went for a walk today or, you know, I had this for lunch. I didn’t fall over when I lost my balance. Or it could be big things. You bit these little things that when I look back, it’s a massive list of what I actually have achieved. Yeah, so, so going back to your question, so a question for you, Isaac. So how does that show up in advocacy for you? How does you know those defining moments show up in the work that you do at the moment in advocacy and leadership?

Issac  

I’ve, for me, like, so, and even now, actually, so, you know, I share my lived experience and the good, the bad, the ugly, the constructive, all of these different things that I’ve done in my life. And for me, I’ve always loved sharing stories. That’s one thing I’ve always liked doing, maybe that’d through video or writing. I’ve just liked sharing stories. And I would just share, stories well let’s go to the days of LinkedIn so now I share stories not really expecting much from it but you know it’s that one message from someone or a comment that you read where someone says actually thank you for sharing this I thought I don’t feel like I’m alone in this I thought I was the only one who went through this or people see me as successful but then when I share like I still don’t have a care plan it’s like you know it brings it back down to earth like you know on the surface that’s where it may be perceived as but actually the reality is a lot different and people do appreciate those stories and I think that’s where it’s one of those small moments where actually I’ve changed at least one person’s perspective or understanding just by just by that one post. mean, I remember one particular where I wrote about, I quit basically, I quit an opportunity that I was doing because it just, yeah, it’s a long story, but I ended up quitting something and I wrote a post about it and people, a lot of people were supporting it, but I got one message from someone saying, actually you know I feel like I now have a voice to quit the job that I’m doing because I’ve had enough and I didn’t feel like I had the confidence to do it but actually after seeing your post it’s really allowed me to feel like I can. 

Esi  

That’s powerful stuff that is, is there.  

Issac  

Yeah, yeah and like I say I’m always doing stories and I’m always reminded when I get a message or comment that actually they do mean something to someone. yeah, because I’m gonna be a bit, I’m gonna say I’m a bit self-conscious. I like just writing stories, like I just like sharing stories but to know that they are helping people from that one comment or message does mean a lot more.

Esi  

Yeah. So, I I completely agree 100 % agree with what you’re saying. But all of this, what toll does it take? I mean, you’re telling stories about your own lived experience. So, if any, what toll does that take on your mental wellbeing and your everyday? Because as a disabled person, I was gonna say, I can imagine, but I am as well. But as a disabled person, using their lived experience to tell stories in the way you do and support other people, It can sometimes be quite draining, I can imagine. So when do you have an opportunity to switch off if you do? 

Issac   

I don’t know what switching off means. I don’t understand that concept. 

Esi  

You know that button behind your head that you press at the end of the day. 

Issac 

is that what it does? Yeah, that’s it. Yeah. Okay. I’ve never pressed it before. Yeah. I mean, it goes back to what I said near the beginning. It’s like, I’m always an advocate if I like it or not. And it’s like, even when it goes to switching off, it’s like, I still, it’s like, So switching off from one to one holiday, for example, I still need to have the support in place, which needs to be organized. Wherever I’m going needs to be accessible so I can get to places. If I’m flying, it’s being anxious that my chair is going to be in one piece by the other end. You know, it’s like, even when it comes to switching off, it still takes a toll because you just don’t know where you’re going to get by going, on holiday or switching off. And, you know, as someone who does primarily all of it solo, I can go on holiday. But when I get back, I’ve got to do twice more work because I haven’t had someone to go through the emails or get back to LinkedIn messages. So it’s always constant. It’s a constant leadership role in whatever capacity I’m doing it in. 

Esi  

Yeah, I agree with you. And you know, I just want to for a moment, I think this is really important to reflect on something you said, because I’m sure some people are listening to this thinking, well, when I go on holidays, I’ve got more emails to do as well when I get back. But can you articulate in your own words or your own experience why it’s different for you as a disabled person than it might be for somebody who doesn’t identify as being disabled? 

Issac  

So I’ll use the recent trip to Berlin. Did the marathon there in the wheelchair, inline skate marathon. And on the trip, I took my manual wheelchair because it’s just easier, because we use that chair for the race, but also just easier to get from back and forth. And Berlin is not the most accessible of places. So manual made it a lot easier to, get over the obstacles. But yeah, my manual chair is just not the most comfortable of chairs and sitting in it just to go out and about, let alone the actual race itself does take a huge toll on my body. And I get pain sitting anyway, but in my manual, it’s like 10 times more that on top of that, my reflux really did play up. It was quite noisy outside our room. So didn’t really sleep that well. So, you know, I was out and about every day. I was in pain every day. And I’m also someone who doesn’t like to take too much medication because that also has its side effects by taking too much. So I’d done four or five days there and I thoroughly enjoyed the experience and the time. But as soon as I got back home, I was in recovery for four days because my pain levels were just all over the place, meaning I couldn’t do much work. So even though I was home, I couldn’t do work. And even if I did, I wasn’t in the right head space to do it properly. So for me to be fully recovered, took me four days until I was really prepared. So that was five days away plus four days recovery. That’s more than a week of not being able to go to emails. And then over seven days of not answering emails and things, of course it builds up. And then you’ve got answer all of it, which takes the whole day in itself. And that day you could have been using for another thing. it’s like, yeah, it’s a lot. It’s a lot. 

Esi  

You And then compounding on top of that, you’ve got what you expressed a minute ago about kind of the advocacy for your own access. So getting onto a plane, managing your PAs and making sure they’ve got what they need, making sure the rooms you go to are accessible and the restaurants are accessible and all of that. It’s a constant. It’s something that is mentally draining as well as emotionally and physically draining as well. 

Issac  

Yeah, because it’s just never ending. it would be different if we lived in a fully accessible world, but we don’t. And people are people, so that can be a bit challenging too. So yeah, and it’s just a constant battle, as some people say. Actually, you express it quite well in the fighters, actually. 

Esi  

Thank you. So, kind of talking about that and referring that to our audience. So, some of our audience are going to be disabled people, but a lot of our audience are going to be people that are business leaders in equality, diversity and inclusion, in charge of accessibility and inclusive cultures for their business and their organization and their teams. So, at the moment, what could people take away from, we’ve been talking a lot about the fact that there’s so much extra we have to think about as disabled people, the drains in all these ways, and we still want to be able to enjoy ourselves. So what can people really take away from what you’re saying here? 

Issac  

I think we’re doing a great example of having open conversation. Because I think there’s a lot of that that can be missed in this day and age. May that be because of fear of getting it wrong or cancel culture, which, you know, sometimes it’s, it’s valid, but not always. And I just feel like sometimes we just forget to have the conversation, and an open dialogue of, actually, what would you need to, so I can support you better? And once you have that conversation, it’s like, okay, let’s see what we can do within our constraints and budget or understanding. Because I think sometimes when it comes to helping people with disabilities, it’s going to cost us loads of money and all this kind of stuff. But actually, sometimes it could be something that’s not so cost effective and saying that can just help but also realizing that it could help a lot more people because anyone at any given time can gain a disability. So, know, thinking more outside of the disability community but realizing that actually making something accessible could help a lot more people down the line.

And I like to say something that’s future proofing the workplace or understanding. Because if we like it or not, we’re all going to experience a disability sometime in our life, or we will know someone who will go through it too. So it’s something that we should be more open to discussing and not seeing it as a negative or burden sort of thing. Because there’s a lot that can come from disability, like happy conversations, like wherever, well, I mean, it’s a mixed conversation, but we have been laughing quite a lot. 

Esi  

I completely agree. You know, I 100 % agree with what you’re saying. And I really like going back to what you were saying before about kind of just having those open conversations, not being afraid to kind of open those  what’s the word I’m looking for? Those communication avenues. So not being afraid to open those communication avenues and learning something that you didn’t think you’re going to learn as a result. It’s not all about, as you’re saying, it’s not all about changing everything overnight, but it’s about making those small incremental changes, advocating and kind of guiding it, leading the way, being a leader to show actually accessibility and inclusion isn’t this massive upheaval that we think it is. It’s just about making these small changes to make everybody feel valued and included. 

Issac  

I mean, one prime example, and you know, for me, again, when I joined LinkedIn, and when that post went semi viral, I thought I’d been living under a rock when it came to disability, because I knew my lived experience and a few other friends in school, but they were mainly wheelchair users. So that was kind of like the only real lived experience I knew about. And when I joined LinkedIn and connecting with people within the community. That’s where I learned about image descriptions and alternative text. I didn’t know anything about that. I would see this person’s posts always doing an image description at the end. like, what’s this all about? didn’t really make sense. then connecting with someone with a lived experience, sharing the importance of it. I like, oh, well, you know, I thought I was making my content accessible, but clearly not. So it started off with me just doing alternative text and because of that, well, you know, alternative text is the main one, but actually, you know, it’s realising that both are important because not everyone has a screen reader and there’s people who just can’t process images. So implementing that and, you know, for me, it was like, oh, how am I going to describe images that you know I don’t feel I’m going to be very good at that or how much detail will it need or if I’m doing it correctly but there was one particular connection Mark Webb I’m gonna give him a bit of a shout out here he did image descriptions that were fun he would always he’s got a disability but he would always compare himself to like Tom Cruise and things like that. I was like, oh, he’s having fun with this. And people are still getting the description. I like, oh, okay, well, now it makes sense. And so I, yeah, I didn’t see it as like this challenging thing, but an opportunity to enhance the story that I was sharing through the image description. And people have said over time that they really enjoy my image descriptions.mSome even say that I only come to your post for the image descriptions and I’m like, okay, well, yeah, know some people do say that. I’ve said it’s like really important here, but I guess the image description is as important. But yeah, so it’s, yeah, even I’ve been on that learning journey. And as you say, it’s such a small thing, but the amount of people now I’m reaching and people appreciate goes a long way. 

Esi  

Yes. brain. again, there’s a couple of things. Well, there’s a lot I want to take off. There’s a couple of things I’m going to kind of articulate here. So first of all, the the willingness to kind of know that you don’t know something but learn how to do it. And as a result, the innovation that comes from that as well, I think is excellent. And I think, again, that that stuff that leaders can take here that actually doing things to be accessible and inclusive is innovative. It gets you thinking about And then your brain starts working at whatever the map, what else is possible kind of thing. And I think that’s really exciting. I mean, after a wider audience, just by trying something new. But talking a little about leadership as well, because when Isaac, you and I were planning our conversation.One of the things that you said was really important to you to kind of bring up in this conversation is kind of the role of leadership you have. But talking about that from a social media point of view, how you are role modeling and influencing and therefore leading the sector, your kind of storytelling influencer sector to be able to do that too. So I mean, that’s one way that I see that you’re leading. Do you want to expand on that a little bit and tell me a little bit more about leadership from your perspective? 

Issac  

Yeah, I mean, for me, leadership is not only having the biggest voice, but also someone who’s willing to listen. So I could have carried on posting about my lived experience and saying, hey guys, it’s all about me and my disability. And in some ways it’s good to share my lived experience. But I think for being like an advocate for a whole community, it’s listening to others and reading other people’s posts. Because if I didn’t read those posts about image descriptions, I probably still wouldn’t be adding them now. So I think leadership is a bit of what it’s not a bit of both. It is both listening and sharing, but it’s realizing that it’s sharing however much you feel comfortable with. Some people say,  you shared too much and In my head I’m like, I’m not sharing enough actually. If I had a lot more characters I would share a lot more about the reality of living with a disability. But not everyone is as comfortable to do that and that’s absolutely fine. Not everyone has to be an educator if they don’t feel comfortable in doing so. But I do have to say, it might be a bit controversial saying this. 

Esi  

We’ll never build that. 

Issac  

But you also can’t be the same person who’s always complaining about things if you’re not willing to share what helps you. Because there are some people who say, you should know about this, but I’m not going to tell you how to do it. And they say, well, if you don’t tell me, how else am I going to do it or learn? So I guess in those instances, it’s got to be a two-way street. Because if you don’t know, you don’t know. And that’s fact. Like not everyone knows everything. I didn’t know image descriptions until I was told about it. I wasn’t being ignorant. I wasn’t not wanting to listen. I just didn’t know. And then when I saw it, I became curious. And then when I saw someone with lived experience sharing about it, I was like, okay, I understand it now and now let me implement it. So it’s got to be a two way street in some degree. But again, don’t be pushed into saying, so Tell me about your medical history, please. It’s like, no, you don’t, they don’t need to know that, you know? So, yeah.  

Esi  

Completely agree with you. I actually thought you were gonna say so I didn’t know what but you know I thought that the controversy would be a lot worse than that And I think it’s an important message again for kind of people within business And something that you you kind of said earlier resonated with what you said now and I wanted to bring it up at some point as well that actually Just because you’re a disabled person doesn’t mean that you have to be a spokesperson. So not every disabled person is comfortable to say, well, actually, this is my story, and this is how my story can support others. And I think that’s a really important message for people within business to remember that people have to, you can ask somebody, but you need to allow them to say, no, I don’t want to, thank you, I just want to get on with my job as an IT specialist, or whatever they’re doing. Or actually, just want, you know, I am a disability inclusion, 

Issac  

Thank

Esi  

trainer, but I don’t want to talk about my lived experience. I mean, that’s somebody’s choice too. But I, so I also agree with what you were saying about kind of, you know, if you’re going to share a problem, support the solution. But I just want to be mindful that when we share that, that I don’t know what you think of this Isaac, but everyone’s different with different experiences and not everybody will be able to come up with that solution. So it’s not about expecting that person to come up with it on their own, but collaborating with that person so they’re part of that journey, they’re finding that solution that works either for their specific need but or as a whole working for kind of the whole community I guess. 

Issac 

Yeah, mean, something that I want to pick on what you’ve just said there, like there are people, I mean, I felt this quite a lot in the beginning of the advocacy journey was there were some people that I was connecting with who were high in influence and basically were saying, I’ve had this lived experience and everyone else has this experience. And it’s like, well, actually I don’t relate to that. You know, I have a different experience to you both be wheelchair users or have, upper limb differences, but my experience is not the same as yours. So how can you say that I’m having the same experience as you are? Like you just can’t do that. that’s why, you know, the way I speak is like, this is my opinion and this is my experience. I can’t speak on behalf of a community because I’m not living in everyone’s shoes. Yeah, mean, the point is like everyone’s got a very unique different, so lived experience. and we’ve got to appreciate that. 

Esi  

Yeah, 100 % nobody disabled or otherwise, nobody represents the entire community. So anyone that says, oh, I represent disabled people is rubbish. mean, I know that, know, and I don’t want to bag out on organizations that have memberships. So before they share any information, they’ve asked their membership. So they’re representing their membership through asking them first, and that’s different. But anyone that says, oh, I represent disabled people, that’s absolutely rubbish. Because how can you possibly you’re one person, you’re not a billion people. And anyone that ever asks a disabled person, can you represent disabled people? It’s okay to say no, can’t, but I can share it from my experience. 

Issac  

Yeah, exactly. 

Yeah, absolutely. 

Esi 

Let’s get on to arguably the most important part of the episode, Isaac. So when I was asking you to send me some information about you and what you’ve been doing, you sent me a link to some guides, which I got completely distracted by and was late for a meeting. Can you tell us about these guides, please?  

Issac  

Yeah, so I’ll start from the beginning. So, you know, I’ve always been a writer and somebody who loves sharing stories, as I’ve mentioned before. And it was a year ago when one of my friends, was a bit shady in the beginning, actually. It was like, I’ve got something that you can make quite a lot of money and you can do it quite quickly. 

I was like, uh, okay, this sounds a bit like, this sounds like a pyramid scheme, what’s going on here? I was like, okay, but I’m kind of intrigued to hear what you have to say, but okay. So yeah, we ended up having a conversation about it and he was telling me about, uh, actually I’ll say his name, so Scott from All for Inclusion.

And yeah, he was talking to me about this, what I thought was a shady deal. And he basically said, I’ve, you know, I’ve started blogging and I know you’re a writer and you can go onto this,  website called medium, to put your blogs up. So your story’s up there and you can make money from it. And he created a publication or for inclusion publication. That it would share other writers within the inclusive space together. I like, oh, okay, that sounds like a really great idea. And actually, many years prior, I did have a medium account, but I’d stopped blogging. I was like, okay, well, I’ve got the following on LinkedIn. Maybe I can send people over to read my blogs. So I started doing that for a couple of months and I did… enjoy it and um but there was one major issue like I would spend hours doing it but to get the money firstly people had to be a member of medium uh which meant the money that they would pay for membership wasn’t all going to me uh it would allow you to read all articles but all the money wasn’t going to me uh and not everyone would want to do that. so there was that. And then because I wasn’t really getting much engagement and viewings per article, unless it went, because there was, there was like, there’s a boosting program. So Medium would boost your article to loads of people. And then you would get like one of them made $80 within a month. 

 But that wouldn’t happen with every article. And when calculating it, because I’d spend maybe four or five hours on each blog, because I’d write it, then I’d get pictures for it, then I’d do the image descriptions, and then I’d format it and all these different things. So it’d take four or five hours per blog. And when calculating it, per blog was probably, I was earning about one cent per hour. 

 And it’s funny because one of my friends who was kind of mentoring me, he was like, you’ve got to stop blogging. I was like, no, I believe in the future. This is going to be the next big thing. He was like, no, it won’t be. You’ve got to your time into things that actually making you like money back. I was like, no, I’m not going to listen to you. And then he ended up being right. 

I was like yeah I’m getting a bit burnt out doing this and getting nothing back. during this time yeah this year I did start a buy me a coffee link because I’ve always felt a bit weird asking people for money to support me in a way because I feel like a public speaking engagement at least I’m giving something back and I know my posts are but it just felt different asking people for money in this way, but I thought I’d give it a go. And I started sharing the link after each blog and I was making a bit of return. And I then stopped blogging and I stopped doing buy me a coffee because it just felt strange to ask people for money. And then I think I had a few conversations with people and I like, no, actually, you know, your value and people do value, what you are bringing into the world. So I thought, okay, you know what, let me use the shop function on buy me a coffee and turn my blogs into guides that people can buy. So I have been, I’ll be honest, I’ve been utilizing a bit of AI to help me with this, but it’s putting in, yes, yes. 

Esi  

I’m joking, I love AI 

Issac  

Okay. I was ready to defend myself. No, so I’ve been putting the blogs that I took hours writing and allowing it to help me format it into guides, but also, you know, I believe AI is a tool, not a replacement. So I’m still putting my whole self into it and making sure it does sound like me and the stories still do make sense and adding in worksheets and everything to it. And, you know, I did my first guides. Fame so lessons learned in fame fortune and sustainability and i put that out and one per the first person brought it at seven pounds and then and that one cell just made it all worth it because vlogging like i said was making one cent but that’s seven pound made that all those hours worth it 

Esi  

Yeah. And it’s a tangible thing that you can see that somebody is really benefiting from it straight away, can’t you? Because they’ve taken the time to do that. 

Issac  

Yeah, and I feel more motivated to do that. But also speaking of AI, I’m also going to be creating guides. one side is creating story driven guides. So lessons I’ve learned through lived experience and how people can put into their own day to day life. But also I do talk about AI and how I use it when it comes to accessibility and how to be more productive and different ways without losing human voice because I’m not someone who does a copy and paste. think like I it’s a tool, not a replacement to people. I am going to be creating free, as in like for no money, free guides for when I talk about AI and how I use it because I think AI should be something that anyone can access and understand but there is an option on BuyMeAlCoffee if people see value in it to say I want to put a pound into this but I’m giving them away for free because I think it’s something that everyone can needs to learn and bring a bit of a level playing field 

Esi  

I can’t wait for those AI guides to come. I was joking before because I think AI is the future, to use your kind of terminology from what you used to think about blogs. And I agree with you, it’s a tool, not replacement, but it’s such a powerful tool. And it can really give you confidence where the confidence may not have existed before because you can try it out. On the tool itself and then if you don’t like it, can try something else. Um, and I think it really is it’s going to be a massive support for disabled people in the workplace and in life in general. So yeah, I might have to invite you on to talk specifically about AI. Um, because you know, I i’m a bit of a geek, but i’m beginning to absolutely love it. But back to your guides. Um, so i’ve downloaded both copies. Um, and I, you know, I can see rather than saying buy me a coffee and says buy me a what’s it called an apple juice which i thought was quite funny actually because when you go to starbucks that’s how much an apple juice actually costs so i thought maybe inspiration from starbucks for that 

Issac  

I’mNo, I just don’t drink coffee. I like apple juice. 

Esi  

No, I like apple juice as well. Yeah, it’s really the accent. Thank you so much, Isaac. So we’re going to share the link to your Buy Me an Apple juice and therefore your guides in the show notes as well. And I want to talk a little bit about, you know, we’re coming to the end of the episode. I want to talk a little bit about your influencers. So the people that influenced you and any kind of resources other than your own that you would recommend for people to watch or listen to or read or whatever. 

Issac  

I mean my resources are the best ones so… 

Esi  

Obviously, obviously mean, you know, best coupled with Celebrating Disability, Learn Centre obviously. 

Issac  

Yes, absolutely. Yes. Yep. Up there. 

Esi  

Thanks. 

Issac  

Um, yeah, I mean, when it comes to, uh, influences, um, I mean, there’s, you know, it’s funny because when I joined LinkedIn and where it’s come to now, I would say like most of the people I’m connected with are actually more of my friends than my actual friends before that. Uh, and I think there’s just that shared understanding and wanting to work together to make a better world. And I’m not putting down my friends because I’m sure there’s quite a lot who want that too. But I just think… I’m quite good at that, 

Esi  

Gonna be like, screw you Isaac! 

Issac  

Yeah, I’m not a true friend, no I’m joking. But no, just feel like the word connection on LinkedIn, like making connections, I do feel like I’ve created some very genuine connections with people and they’re all doing great work in their own way. So one I definitely would put high up there is Kat from Seated Sewing. I, she’s an amazing individual and I met her through London Fashion, sorry, Adaptive Clothing and London Fashion Week. And, I mean, it’s a very long story of how we met and everything like that, but ultimately she makes adaptive, bespoke adaptive clothing for individuals. And I’ve had very I’ve been very fortunate that she made me a couple of outfits now and each outfit has improved every time but also for the first time in ages has actually made me feel comfortable in my own skin and that can’t be said by like clothes that you buy from Primark or anywhere else of these places like when you have clothes actually made to fit your body and makes you just feel so confident and comfortable. And one moment that really made me feel like myself was when she made me an outfit when I collected my MBE and made me look better than King Charles himself. you know, moments like that was like a special moment, but also wearing something that fits me was like, yeah, this is cool. This is very cool. 

Esi  

Goes to that kind of, as you say, kind of being comfortable in your own skin, kind of feeling confident to be yourself when you’ve got an outfit that reflects who you truly are as a person. 

Issac  

Yes, and that’s not something that you can get all the time. So I’m very grateful to her. Also, Nick Wilson, disabled adventurer. He has been a good friend of mine. Like every friendship, it does have its ups and downs, but every time we do come back stronger. And he’s someone who really showcases accessibility as a wheelchair user, was also really in a passionate way wanted to make sure that I one day will get a wheelchair that I’ll have more flexibility to go adventuring. I mean, I’m already an adrenaline junkie. So once that does come into fruition, there’ll be no stopping me. But you know, even like someone like himself to have that passion to support me in being able to get myself out there and explore nature and the world in that way is great. And I really do like his videos and showcasing accessibility in different ways. And I feel like I should give him a shout out because we were both in the documentary. 

But Michael… 

Esi  

That just for the audience that was a joke because we both obviously know Michael and absolutely yeah he was

Issac  

Yeah, so he got us together to be part of the Fighters documentary. And I think to be given that platform and how well it came out, mean, it was because when I when it first came out, I hadn’t seen it and I was only hearing and seeing other people’s reviews. So I really need to see it. But every time there was a showing, I’d be busy that evening or during that day. So when I had the opportunity to actually go and see it and actually see it sitting in the cinema and watching it, like, wow, this is amazing. And also it came at a time where it was, I don’t know if you felt the same this year for Disability Pride Month, where it didn’t feel like much of a celebration.Yeah, and it was just like the government were against people with disabilities and there so many obstacles and I didn’t get much opportunities and I was like, let me just get a job in McDonald’s, it’ll be more fulfilling than this. And I just can’t be bothered with advocacy anymore. And I was just like, I just don’t want to do this anymore. And actually watching that film made me understand the importance of my voice and community. And it was that really made me understand actually, I got to carry on this fight because yeah, we got to keep doing this together. So yeah, that film was so powerful, it even moved me actually. So yeah, and it’s thanks to Michael and Jack for the opportunity and making us look so beautiful.  

Esi  

Absolutely, I completely agree. So just for our listeners, that’s Michael Grimmett and Jack Tomkinson and Jack runs Ben and Jack Studios. And we will put the links to all of those people that Isaac spoke about in the show notes as well. So you can get, you can find out more about those people as well. So Isaac, where can people find out more about you or get in touch with you? 

Issac 

So my main platform is LinkedIn and that’s Isaac Harvey MBE and I am on other platforms but LinkedIn is where you’ll see most of my stuff. I mean yeah I do have Instagram and Facebook I am Isaac Harvey but LinkedIn is where you’ll find me.  

Esi 

So, you know, if I was a listener listening to this, I’ll be like, why hasn’t she asked you how you got your MBE? we can’t have an MBE without having that related to leadership. So tell us the story. 

Issac  

Right, so it was 2021 and our favourite Prime Minister Boris Johnson. he was giving out during COVID and just the tail end of it, he was giving out the Points of Light award and every day would highlight someone who’s doing good work within the community and  We, me and Maheeman Jamail, who is like the founder of Wheels and Wheelchairs, we were given it jointly for what we were doing with Wheels and Wheelchairs and how we are allowing people with disabilities to come out and join us skating. And it was nice to be recognized in this way, especially as it highlighted what we’re doing and more people could potentially join us in London. And so it was nice to get that. And it was given to us on the 3rd of December, which was International Day of People with Disabilities, which was very cool. So then about a year later, so 2022, it must have been around April, May time. We were invited to go to 10 Downing Street for a garden party for most of the people who had got the Points of Light award, which I ended up going to. And there is a funny story attached to that, but I’ll leave it here. I’ll leave that for now. it next time. Yes, yes. Because I said, this is a long story, but we’ll keep it short. On the day they said, oh, Boris Johnson’s not in. This was when we were outside queuing. So Boris Johnson’s not there. We were like, OK, cool. And then we got there. And then once we were in, they said, oh, yeah, actually, he is here. Gotcha! I you ain’t expected that! So he came and he gave a speech and why these awards meant so much and then he gave him his due. He spoke to everyone for like five minutes and he spoke to me and we were talking about wheels and wheelchairs and the things that we do. And then the event ended, went on with my life. And then in December No, November 2022, I got an email telling me that the prime minister had nominated me to get to get an MBE. And if they would like me to accept it, because with MBEs you do accept it or not. And and I couldn’t tell anyone, but I did tell my mum. I had to tell someone. And yeah, I ended up saying, you know, I feel this is a great reflection on the disability community as a whole. And without the community, I wouldn’t be where I am today. So I ended up accepting it. And so to answer the question, I go because of my commitment and services to people with disabilities. And I guess you could say the leadership, to tie it in. So then yeah that was announced beginning of 2023 and because of covid there was like a huge backlog and then yeah it came to November 2023 so I literally a whole year later and invited to Buckingham Palace and by then it was the king and yeah he awarded me in Buckingham Palace. incredible. So, to the going to 10 Downing Street, I had met, sorry, I connected with someone on LinkedIn and we were talking up various different things because it was during the summer and it was like a really hot summer and she put a picture up of some… Someone plugging in a fan on a train and I just commented on it and then we kind of disconnected from that picture post. And we organised to meet in London just to meet up after having like the connection and it was set on a certain date that we were gonna do. So then I got the email saying, we invite you to attend Downing Street. I was like, well, I can’t wait to find someone new and I’ve never met this person before, but I’m just going to ask him if they want to come with me to 10 Downing Street. So literally someone I’d never met in person before, I took them to 10 Downing Street. 

 

Esi  

That they feel so special.  

Issac  

Yes, I wasn’t doing it for that reason, I’ll tell you. 

Esi  

You 

Issac  

So yeah, yeah, so I’d write someone yeah, never met before to turn down the street But it was nice because I guess it was like a different bonding experience 

Esi  

But you know that’s really funny for a non-disabled person. Am I assuming correctly that they supported you as a PA as well? 

Issac  

Mainly for eating and drinking. 

Esi  

Okay, yeah, yeah, yeah. So for a non-disabled person, that’s gonna sound really strange, isn’t it? But for a disabled person, I completely identify with that. Like, I need to go, this person looks nice, they’ll do kind of it. You know, that kind of flip and throw away way, but it’s so much more natural, I think, that when you have support needs, that you are, you know, we’re open to kind of bringing in new people with us. 

Issac  

Yes, yes. mean, don’t get me wrong, I would have had to have got someone to come with. No, actually, no, I wouldn’t have had to because it was me and Mahaman who were going to get it. So I would have had someone to support me. because I, because the thing is, the other thing is I was just like, I don’t really want to cancel and then choose another date. I might as just keep the same date. And they were happy to do it. Even though it was the first time we met. So, yeah. 

Esi  

say no to going to 10th Street, really. I mean, you think it’s about you, but I don’t think it was about you, Oh, sorry. My apologies. 

Issac 

it’s always about me. Second funny story. So I was very good at not telling anyone for a whole month that I wasn’t going. I mean, to be honest, when I know I’m not meant to tell anyone, I’m pretty good at it. I didn’t even tell close friends or anything. Yeah, I don’t know how well it could have easily slipped up. I didn’t. And. 

I was so I knew it was going to be released on the 1st of January 2023 and I was mentally preparing myself for like a post to go out start of the year. Oh, I’ve got you know, I’ve been nominated for an MBE and this year is going to be strong or whatever. So I was all ready for that. 31st of December came around and someone in the morning said, oh, congratulations. 

 I was like, what do you mean congratulations? And they said, oh, yeah, know, you’re, you’re MBE. I was like, how do you know about this? Like this is, this shouldn’t be public knowledge. How are you congratulating me? And then someone else said, I was like, what’s going on? Like, this is really weird. Like how, how do people, how are people knowing about this? I found out that actually it was released on the 31st, not the 1st. 

Esi  

late. 

Issac  

So it meant I had to quickly change my post because I needed to get something out that morning. So I was like, oh, great. Thanks for that. So yeah, so yeah, so that was announced at the end of the year and I kind of had to do a wrap up of the year through that post. No, not always. 

  

Esi  

introduced the wrap-up of the year though, it? Yeah. Yeah, yeah. 

Issac  

Yeah it was, but not planned. And then the last funny story at Buckingham Palace, they were showing us, so there were three massive rooms because there was 80 people receiving an award on the day. OK. So but it wasn’t just MBEs, was MBEs, OBEs and knighthoods. And people were just receiving that all 80 people. And when it comes to meeting new people, influential or not, don’t, I just see them as people. Obviously it’s a great honor to speak to some people, but for me it’s just like, you know, it’s just someone else. I did.  So I was like, okay, well, you know, I saw other people how they were doing it, but because they had massive TV screens to show people gave me awards there. So I was like, okay, I kind of get what’s going on. So when people went in two halves, so like 40 people went in first half, and then 40 people went in the second half. I was in the second half category. And some guy comes in. Like some official person comes in and he’s like, when you go in and he gives us this whole protocol, right? He’s like, when you go in, you wait for your name to be called. Then you go in, then you face, you know, you go forward, then you face the king and you’ve got to bow your head and you’ve to go towards him. And then you’ve got to address him as your majesty. Then you call him sir afterwards. And then you have a two minute conversation. And I was like, oh my gosh, I’ve only got one take on this and I’m about to go in. Now you’re telling me all of this. Like within like, yeah, they just told us that just before going in. I was like, yeah, thanks a lot. I like, I’ve only got one take on this and I can’t mess this up. I literally can’t. So that’s where my mind was racing and I was like, oh my gosh, I can’t like, all right, cool. 

Esi  

Why but so much to remember? 

Issac  

So I’ve gone in and it’s in like a queuing system so people go one by one and then I’m up for like, so I see the person in front of me go and then my name gets called. So I’ve gone in, I’ve turned around, turned to face the king, I bowed my head and then I’ve gone towards him and So for context, the King’s on his pedestal. Okay. So he’s like, yeah. So he’s like, he’s standing on his pedestal higher on everyone else. So he’s on his pedestal. So as I’ve gone, as I’ve approached him, he’s come off the pedestal, right, to put the MBE on me. But that completely threw me off again. Cause I was like, cause I was like, that wasn’t part of the plan King.  

Esi  

Tell me that bit. 

Issac  

That wasn’t part of the plan! You should have told me! So I’ve kind of slightly fumbled my words, but I said, Your Majesty. So then he’s come over and yeah, he came down, but to give him credit, he actually stayed down as well. So he didn’t go back onto the pedestal. And he literally was talking basically on my level. And we had like a two minute conversation, but 

 Esi  

Wow. 

Issac  

And not many people can say that the king came down to their level so…  

Esi  

I thought it was gonna end by you running him over I’ve heard I mean I’ve never been anywhere near the king but I have heard that he’s quite a nice man 

Issac  

Yeah, actually, to be honest, the giving me stew, it was a pleasant conversation. 

Esi  

Talk about. 

Issac  

Well, we spoke about accessibility and how the world is getting better, but then there’s its flaws and we spoke about my advocacy work because there’s only so much you can say in two minutes. 

Esi 

You’re still very fast, yeah. 

Issac  

So it’s like you only have to do the bullet point version. 

Esi  

Yes. 

Issac  

So yeah, spoke. Yeah. But the one thing he really said, what stuck with me at the end was he said, I hope this award makes you want to carry on doing what you’re doing. And I said, yes, it does. then I just had to do everything in reverse and not run over his feet and then exited. Yeah, it yeah, it was, yeah, it was nice.  

Esi  

So brilliant, thank you so much Isaac. So we are at the end of the episode now. Is there anything else you would like our listeners and viewers to know? 

Issac  

I mean there’s so much more that I could share but I think we’ll have to save it for part 2 if you have me on again. 

Esi  

I would love to have you on again. Yes, we will have part two where I will have my MBE and then we can prepare notes. 

Issac  

Yeah, absolutely. I would love to hear your experience. 

Esi  

So just to say to everyone, thank you very much for tuning in and watching or listening. Please don’t forget to subscribe to this YouTube channel, see more stuff coming in. you’re interested to find more about the work that Celebrating Disability does, please look at our website, celebratingdisability.co.uk. If you’re interested in finding or connecting with Isaac, please do so on LinkedIn or by his guides, by buying him an apple juice. And so until next time, goodbye and good luck unpacking equality in your workplace.