Overview

Transcribed by Kanako Suwa

[ Introduction music plays ]

Welcome to the SENIA Happy Hour with your host, Lori Boll. We know you’re busy so we bring you 1 hour of content in under thirty minutes, leaving you with time for a true happy hour. 

Lori:  Hello, listeners. Jamie Shields is a vibrant advocate of disability rights, known for his engaging personality and insightful perspectives. In this podcast episode, Jamie shared his journey as a registered blind individual with autism and ADHD, emphasizing the importance of self -identification and the nuances of language within the disability community. He passionately shared that individuals should reclaim their identities and choose the language that resonates with them, fostering understanding and reducing stigma around disabilities. We also explored his organization, Disabled by Society, which highlights the societal barriers that truly disable individuals rather than focusing on their disabilities. Jamie’s colorful branding reflects his belief in breaking down these barriers and promoting open dialogue about disability. And this episode serves as a warm up for his upcoming keynote at our virtual conference, providing listeners with a taste of his wisdom and a deeper understanding of the complexities surrounding disability in society. So now, on to the show. 

Well, hello, Jamie, and welcome to the podcast. 

Jamie: Hello, hello. Thank you for having me. 

Lori: I’m so excited to have you. I was introduced to you on LinkedIn, I think, by a good friend of SENIA, Nicole. And Nicole was like, you’ve got to meet this exceptional person, and so here you are. 

Jamie: Yes, thank you, Nicole. 

Lori: You will be a keynote at our upcoming virtual conference. I know we’re going to learn a lot from you there, but I’m also excited to just have a chat with you today and get to know your story a little bit, and then we can dive deep during the conference. 

Jamie: Yes, it’s like the warm up for the conference. So it is like getting a vocal cord ready. 

Lori: That’s right. That’s right. Give everybody just that little taste. Appetizer.

Jamie: I will not give too much away. I will hold some cards close to the chest, but I’ll give it over to you. 

Lori: Well, Jamie, you describe yourself as a registered blind AuDHD rhino. Can you explain the significance of this unique self description? 

Jamie: Yes, of course. So I spent my life disabled. I was born disabled and then I acquired disabilities. I found out about disabilities that I had later in life, but I was almost told off for saying person with disability or disabled person. And none of them ever seemed right. And there was always somebody telling me. And then I also have this thing about language, how it can be reclaimed. I love reclaiming language and I love just being able to use it in my everyday vocabulary. Not to shock people, just because I think there’s empowerment there. And when I was younger, the kids in school, they knew I was gay before I did. And they used to say to me, Jimmy, where’s your pony? Like where’s your pink pony and stuff like that. So it wasn’t exactly a nice time, but as I got older, I was just like, I can’t be a pony because I’m way too big to be a pony. Like I’ve got a wee bit of meat in my bones. And I was just like, rhinos are chubby unicorns. And my friend gave me a book that said this and I loved it. And then the whole disabled thing and personal disability, when I was building my brand, I was like let’s take these parts of myself that used to kind of cause me so much trauma and pain and let’s use self -identify. 

So now I am a registered blind AuDHD rhino because rhinos are chubby unicorns with bad eyesight. And if you don’t believe me, you can Google it, rhinos have some of the worst eyesight in mammals. So that’s the kind of background. 

Lori: Well, I love that. And thanks for bringing up the whole point about disabled or person with a disability. I’m sure we’ll dive deep into this in, during the conference. But can you just briefly explain, like, how did this all come about? Person first language versus identity first? And what’s your take? 

Jamie: So, yeah, I am such a big advocate for, we should always ask the individual, always ask that person, what do you prefer? Because it might not even be identity first language, which is your person with disability or your, sorry, your identity first language is a disabled person or your person’s first language is a person with disability. People might use different words. People might use words like crippled because it’s been used in the past and they may use it as empowerment. So I think there’s so much language out there and that whole thing about empowerment and reclaiming. So I think it’s really important firstly that we always ask the person, how do you prefer to self -identify? 

And then secondly, I don’t think we can replace language, I think we’ve tried to do that historically and all that has done is led to a fear of non -disabled people wanting to kind of talk about disability. And you see it happen now, like even when people are talking about somebody saying well that person has a disability and they do it in really hushed voices and it’s almost that we’ve created this stigma to say that we’re a disabled or a person with disability. So for me, I think the language, it depends on your region, like you know in the UK we would use very much disabled person, which has really kind of been around since the social model of disability, which talks about we’re not disabled by our conditions or impairments, it’s actually the inaccessible barriers of society that disables us along with ableism and other factors, whereas person with disability historically came from the medical model, which is, you know, you are the problem, your disability is the problem and we need to get over that. 

However, again, there’s no right or wrong answer. I have been on a rollercoaster journey with language. I used to call myself blind. I used to call myself, I’m not disabled. I’m visually impaired. But the truth is, I’m registered blind. There’s no escape in that. So I used to use person with disability. I used to use disabled person. And I think every individual is on that journey. So it’s why I always go back to just ask the person. There’s no right or wrong answers. 

Lori: Yeah. Yeah. Thank you for that. I know as a non -disabled individual, sometimes we get intimidated to ask because we think, well, we don’t want to, I guess, put the person’s disability in their face. But that’s… Tell me a little bit about that. 

Jamie: As well as that, I also think as well, we are in times where people are worried about being cancelled. If I say the wrong thing, I’m going to get cancelled. 

I think we have to really understand that there’s no harm to be disabled or being a person with disability. Even those with lived experiences, we’re a variant as we go, and disability, it’s such a diverse array of experiences. There’s no one appearance, there’s no two people who are the same, and even people in the same condition are completely different. Just look at me and my uncle, we have completely different challenges, but we have the same eyesight condition. So I think it’s always just really important to remember that there and to always remind ourselves that language does evolve. 

And as we evolve, people evolve too, so we’re evolving with it. And we just need to stop kind of putting this pressure on non -disabled people when they do say the wrong thing, or what we perceive to be the wrong thing, because what’s the wrong thing for you might not be for me. So I think we need to remove this whole restrictions on language, obviously stay away from really quite ableist language where it’s like, oh, you’re differently specially abled and you’ll just create these euphemisms and it’s like, just say the word. Let’s remove the stigma, because I know when I was in education and when I was in the workplace, in my early days in the workplace, there was such a fear to say this, and people didn’t want to engage with disability because of it. And I’m like, no, let’s use the word. If we are using these words, we’re going to reduce the stigma for ourselves to talk about it. But equally, we’re going to remove that stigma from young disabled people or persons with disability who grew into adults who then have these complex relationships with language, just about being there. All it does is lead to internalised ableism, which is not good. 

Lori: Right. Well, you mentioned being disabled by society, and in fact, your organization is called Disabled by Society. So I’d love to hear a little bit more about how you came up with the name of your organization and what you do. 

Jamie: Yes. So I should say, it’s…, so it’s not an organization yet, because I don’t think, even if it’s a typical organization, I don’t think I’d ever use that word, because it’s a reality. It’s a reality I experience every day and have done for 34 years of my life. And I know I don’t look a day for 21, but I’m 34 and those 34 years I’ve seen really low days. I’ve been disabled by inaccessibility, but also, by the way people treat me and overlook me or workplaces is completely outright discriminating. So I really felt that disabled by society. And when I started speaking, so I was working in corporate recruitment and I loved it. I was a disability accessibility lead and I was flourishing for the first time in my life but something inside me kind of awoke during this job and I was like, I don’t want to speak more about this. 

So at the time of my full -time job I was speaking and sharing my lived experiences and when people kept sending me, what’s your brand name? And I kept thinking, oh I’m just the registered blind AuDHD rhino. And then people were like, no, like you need something really gripping, something people can cling to. And I was just like, well I spent my life disabled by society. If people can’t relate to that, then I don’t know what we can relate to each other. So I think it’s Disabled by Society. And I really do believe it, like if I ever do become an organisation, in fact right now, I probably will think of a different name, but these words, disabled by society, it’s felt. When you say that, somebody the automatically, somebody who’s lived experiences disability, they automatically know what you’re talking about. And again, it breaks that stigma away from, oh we should fix the person with disability, rather than actually let’s fix it the society. 

So that’s a snapchat effect, but it also comes with a lot of colorful branding. And I just love colors. 

Lori: So well, I hope you never change the name because I think it it truly does speak to what the problem is. And you’re trying to solve a problem. The problem is that you’re disabled by society and you’re trying to help that. So I love the name. And just a brief side story as someone who has experienced a temporary disability. I recently had knee surgery and I’ve really discovered through this lens how truly inaccessible places are and I don’t think I had that I mean I’ve always thought of it of course because my son is disabled not physically disabled so I’ve had that lens going into things but I’ve never had this physical disability lens going into the accessibility piece of of society and it’s it’s been really interesting to be able to look at it through a different lens. 

Jamie: I think this is one of the things again I always go back to that diversity of disability because I think you know we see people who will come online and be like I’m an expert of disability and there’s somebody who’s worked in this space for some time and yourself as well I’m like We can be experts at creating accessible events. We can be experts at creating really amazing spaces that are psychologically safe. But what we can’t be is an expert of disability because you can’t be an expert of something that is so truly diverse. Yes, we can be subject matter experts, but the only expert for disability is that person who’s experiencing it. 

And so the so, I think it’s like 1 .3 billion or 1 .7, the number of disabled people in the world, as we know, is so arguably, changes depending on your source. But I think when we look at experiences, there’s so many ways to be disabled. There’s so many ways to experience it. And what is inaccessible to one disabled person might actually be really accessible for another. And a quick example of that would be, for myself, I love to read black backgrounds with white text on top. I just find it really clear and easy for me to read, or vice versa, whereas maybe somebody who’s dyslexic, they would prefer an appeal, colorful background with dark text and you would have to adjust the spacing. So it kind of shows that the complexity of accessibility, but also those access needs that we have. And I think, again, just back to that diversity. We’re so diverse. So yes, we can be champions and we can be subject matter experts, but the real expert of disability is the person who experienced it. And not only the expert, but their own lived experiences. 

Lori: Yeah. Yeah. Love that. I present about autism often. And my first slide is, don’t worry, I’m an expert. And then quickly cross that out because I can’t be an expert on autism. I don’t have autism, you know, of what I am is, is a, you know, a person who studies a lot about it. And I have a son with autism. And so I can speak from those experiences. And I even say, you know, no person with autism is truly an expert on autism, because they’re an expert on their autism. 

Jamie: Yeah. 100%. We are on the same page. And you know what? And I think when it comes to conversation of disability or disabled, whatever way you want to call it, we also have to take into the fact that those experiences that you have, you are an expert of being a parent of your child with autism, because you went through that experience. And I think when we look at disability, there’s so many nuances to it. And there’s so many different layers. and we can’t just have the conversation. Of course we want to centralise and have those political experience leading the conversation, but we need to invite parents and carers to the conversation. They have to be part of that conversation because they’re the individuals who are showing us what advocacy for ourselves looks like, shows us how to articulate for ourselves. 

Like my mum, my mum was a lioness when I was growing up. She taught me how to talk with my disability, how to talk about my feelings, how to say I can’t do this in a way that wasn’t legal and I can’t do this and completely shut them down. And I think I owe so much to her and I call her my lioness because she fought for me tooth and nail and that fight is I think what drives me today. So I think we have to have these conversations but we have to ensure that we’re inviting all aspects of disability. And we also have to remember that not every disabled person can articulate themselves in the same way. So sometimes we do have to rely on that other person. So when we have these conversations, I would say you’re an expert because you have raised an autistic son. And I think that speaks volumes and I think we have to own that. But as you said, we’re the only the experts are for our own experiences, not everybody’s. 

Lori: Right. Thanks. Earlier, you mentioned the phrase internalized ableism, and I’d really love for you to define and explain what that means for those who may be listening who are unfamiliar with that term. 

Jamie: So the easiest way for me to explain internalized ableism is is we live in a society as we know it disables us. It’s a society that is deeply rooted in systemic ableism. And for those unfamiliar with ableism, ableism is the prejudice of discrimination against disabled people. But even that definition doesn’t really go far enough. That’s the definition of the dictionary. Some dictionaries actually use the word able -bodied, which would be considered ableist, so it’s quite ironic. But ableism is essentially systemic oppression. It’s ingrained in our language. It’s ingrained in the way that we build and design. It’s in the way we communicate, we think, or we view disability. 

And internalised ableism is the cost to the individual with the lived experience. You know, if you’re living in a society each day where you are excluded, where you feel like you can’t bring your full self, where you can’t bring your authentic self, you then go away feeling conflicted, away feeling left out, but equally you start to doubt yourself. Maybe I shouldn’t speak up, maybe I shouldn’t try to join in. What happens if this happens again and I get discriminated against again? You know, internalised ableism, I tell everybody, is like an inner monologue. It doesn’t disappear, we don’t overcome it. There’s no like, get to the end and next chapter. Internalised ableism stays with us and it is your constant reminder that it’s trying to tell you not to speak up, not to say the challenges. Or sometimes not even to ask for the adjustments that you need. So we don’t talk about internalised ableism and again, it’s because we haven’t had disabled people lead to conversation. Internalised ableism should be part of every single mental health conversation. It should be something we’re talking about with young disabled people because you know I went through special education when I was growing up and it was amazing but when I left school, I fell off the edge of the world. I went back into mainstream education and I didn’t know how to articulate myself and all I did was get these doubts and I struggled and because of that, struggles at a very young age they stayed with me through my life impacting my mental health. I was depressed, I was taking a lot of antidepressants, I was binge drinking, I was doing everything and anything to try to know what was happening in my life and then just because I couldn’t articulate my disability and that’s what internalised ableism is. It is the cost of what happens to us because of society and when we don’t talk about it, it just becomes this really taboo subject whereas now we’re seeing more conversations around it and I will talk about the sun boost home because I look at my nephew he has the same conditions as me and I’m like I don’t want any person to ever grow up feeling the way I did, so internalised ableism is not good but it’s good that we talk about it because then it makes a statement. 

Lori: Great. And you use your social media platform in many ways, and one is to discuss that internalized ableism. So you’re you’re talking about it. You’re shouting it from the rooftops. How else has social media kind of impacted what you do? 

Jamie: Yes, so I I used to hate social media. I’m not going to lie. I remember growing up, it was back in the days of Bebo. I don’t know if you remember Bebo. It was, oh goodness. Bebo was an experience, but it was a really inaccessible experience for me. And this was before the time of Facebook. I was on Bebo before I was on Facebook. And I can just remember the people in my class talking about it. And I was in mainstream education at this point. And they were all talking about, you know, going and liking each other’s photos. And all I found was one barrier after another. So I grew up really not liking social media. 

And then when I landed my job in recruitment, the first thing they said was you’re going to use LinkedIn and because you’re a sourcer, which means you just go find candidates for jobs and you interview them and things like that, I was having one to LinkedIn to find candidates. But what I actually stumbled upon was people talking about the disabilities. And for somebody who grew up, like I’m from Northern Ireland, not the sexy side of Ireland where they have the lovely accent, I’m from the North where I sound a bit rougher. But I grew up in rural Northern Ireland. There was no real representation of disability for me. There was nobody who looked like me. 

Yes, my uncles were disabled, but they were doing completely different things. They weren’t gay. They were often doing these things that I didn’t think I could do. And so I kind of felt quite isolated. And so for me, being able to…  find the confidence to talk about my disability happened in that workplace. And suddenly seeing these people talking about it, I suddenly felt like I was less alone. And then rather than looking for candidates, which I did do, I promise, I did do my job, but I also then started creating content around my lived experience. 

And what I found was people connected with me, reaching out and saying, I feel this too. I’m so glad you’re saying this, because everything we see is so positive about disability. And sometimes we wanna say, being disabled is not fun. It is a challenge and it is exhausting. And sometimes it’s okay to say that. And that’s what I started doing. I just started creating content and I built an audience on my LinkedIn. I think I’m just on the 38,000 followers now, but I still see myself as a little small fish in Belfast who hopped into the ocean and got swept away in the current. Because for me it is… a complete 360 of my life, like I didn’t speak about my disabilities before I got my first proper career, my job in recruitment. 

I didn’t want to be disabled and the internalised ableism I had had led to a lot of different traumatic experiences in my life. So to be then where I am today where I’ve been sharing content for the past four years I think, I think since the pandemic I think, since I’ve been sharing content since then, it’s like I can talk about my disability and I find this confidence, this empowerment and what it’s done is opened doors, like I’ve been able to go speak for global companies around the world, I have won awards for being a thought -leader in disability and I sit there and I’m like… That wasn’t who I ever thought I was ever going to be. The thing that I hated most about myself became my salvation. It became my empowerment. And I think that for me is probably what social media has done. It’s, yes, given me my self -employment and it’s given me my career. But it completely transformed my life. Because six years ago today, I would never have been a (audio distorted)  a disability. If you’d have mentioned it, I would have logged off. 

Lori: Well, you’re on LinkedIn. And we’ll put that link on our show notes. So everyone can go and follow you because your work is fabulous. And I also love the graphics that you create and put up to share. They’re great resources. And they always make me think. 

Jamie: You know, and I love graphics. I’m a very visual person which is really strange because I’m actually blind. I do have some sight so I should set this up for people are thinking, hey you’re blind, you can see. Blind does not mean fully blind. There is a spectrum of it. But for me, I always found, particularly when I came into the role within recruitment, DEI is such an important conversation. It’s diversity, equity, inclusion. And I always find it really complicated. It was like there was these big serious conversations and they should be serious conversations, but we weren’t breaking it down for people like myself who was autistic and ADHD. I like to digest information in short snippets and what I wanted to do was find a way that made this relatable to both young people and to adults because my experience is again, I look back in my past as a child and a teenager and I’m like if I could give my graphics to a young person about here, hold on to this and flip through it and find the one you need that day, I would give it away 100%. So for me, graphics have become a way to take that information that people tend to really struggle to comprehend, struggle to kind of wrap their heads around or afraid to have the conversation about. So that’s where my graphics come from. But if you are listening to this and you want to email me because I smile every school or a teacher messaged me and says I have your graphic in my classroom and they send me photos, I’ve had people send me and be like this is my little library and it just blows my mind because again, I’m in Dalphos, I haven’t even (video distorted), we’re part of the UK but everyone forgets about us so it’s fine. It’s nice and real and fine for me to think that those graphics have been seen and make a difference because I think myself as young, if I see one of those graphics, the difference I probably would have felt as a young person would have been incredible. 

Lori: I love it. I love it. And I’m just, I love them. And I’m so excited for everyone listening to follow you so they can get these graphics as well and just learn from you. And I want to kind of jump into being a non -disabled person ally. How can our non -disabled allies better support the entire disability community? Like, I know you can’t sum it all up, probably. And I mean, there’s so much we can do, right? But what are some things that we can do? 

Jamie: I think the first one is always to remember the diversity of disability. Because when you think of disability, we are all conditioned to think of one thing. And it’s a symbol on the bathroom door and it’s a symbol on the bumper stickers, and that’s on, that is a wheelchair user. Wheelchair users make up 7 % of the disabled community. So we’re missing out a whole 90, my mouth is so bad, 93 % of the people here who have diverse lived experiences. So I think the first thing to do is shatter that mental perception or that assumption or that preconceived idea of what disability is. Because if you’ve met one disabled person, you have met one. And take that person at face value. I wouldn’t be going up to people and being like, are you disabled? Ask them their name, not get into a conversation. Don’t automatically go up to them and be like, oh, what’s wrong with you? I see you looking really close to your phone or you’re using an adjustment, what are you doing? Treat us like a person. Have a conversation with us. 

And then I think to add to that, I think as well is don’t assume what we need. A lot of the times people will come up to me and I do have some sight. I don’t have a guide dog. I have the opposite. I have a dog who chucks me up. She’s like this size, just tiny. Um, and you know, I have people who come up to me and be like, Oh, where’s your guide dog?  I’m like, you’ve assumed of a guide dog or people come up and take me by the arm and try to guide me. And I’m like, I’m actually really independent. And I hate being touched, I’m autistic as well. They don’t touch me unless you have my permission. Right. And people do it. And I know it comes from such a good place. You know, we have the best intentions. We see somebody who gets in a struggle. I need to help them. That’s a really great and that’s a really human thing to do. But I think with this, people who are disabled or disabled people, we have to remember that we are independent. We have, you know, we haven’t just suddenly got to bed that day and decided to go for a walk and brought a disability with us. We’ve, we’ve managed, we’ve had to navigate. 

And yes, so if you have acquired a disability or you have a situational or temporary disability as yourself has said earlier, you may have to kind of get through that there and kind of learn as you go. 

And in those instances, you probably are more grateful for somebody offering to assist. But if you’re somebody who has managed a condition for a sustained period of time, somebody just assuming that you need help kind of just takes away the fact of your independence. 

And then one final thing I think would be is to really consider accessibility, because we spent so much time thinking about how do we educate people about disability? How do we become allies? It’s such a big question. And I always think to myself, the best way to be an ally is to start teaching people about accessibility. If you’re making accessible changes in your day to day, you know, if you’re making your emails accessible, if you’re adding content on social media to make it accessible, if you’re a teacher and you’re giving out training material and you’re asking it to turn into formats, you’re already embedding accessibility into your day -to -day. So I think understand accessibility and if you don’t know where to start, go online. It’s so easy to look online. Go onto LinkedIn, there’s so many people talking about it. Or even if you’re using Microsoft product, just embed accessibility into what you start using. Embed accessibility into your every day because that to me is what real allyship is. It’s not having to do it because you’re asked, it’s doing it because it’s part of your day -to -day and that’s what accessibility should be. It should be part of your design and part of your initial thinking and it’s even the same when you’re having a conversation with somebody. If you’re having a conversation with somebody and they have showed they’re disabled, ask them, is there a more accessible way to communicate with you or is there anything I can do to make this experience more accessible. That alone just shows that you’re thinking about those needs rather than that person making the assumptions. 

Lori: Wow. I’m impressed. Here I thought you couldn’t cover a lot and you did. So that was great. You know, it’s really interesting when you think about context and an example is I’m going to be presenting at a conference here pretty shortly. And they’ve asked us to make the everything paper free, like no paper can be used at the conference, which is great for sustainability reasons. But when we think about some of our learners, it’s not a very inclusive way to teach some of the concepts that we need to be, you know, teaching. And so we’re struggling with that and have made the decision that we want to do what’s best practice for learners and not, you know, keep it completely paper free. But, you know, there’s just all these considerations when we’re thinking, as you said, people always want to do the right thing. And even if that’s, you know, saving the environment, which is very important. We also have to think about how that might affect learners. 

Jamie: 100%. And I think one of the easiest ways I always think about accessibility and different needs is there is an incredible lady from Texas, she’s called Meryl Evans. So if you’re on LinkedIn or any social media, follow Meryl Evans. She is a deaf advocate. She’s lived experience and she did a TED talk. And in the TED talk, she talked about accessibility and how we struggled to understand this concept of one size fits all doesn’t always work for everybody. And she said, imagine that you’re speaking to somebody. How many ways do you have to correspond with a person? And most people would think, oh, we’ve one, verbally, we’ll speak to him. Well, actually that’s wrong, because there’s different ways that we can communicate with somebody. Yes, one is verbal. Two, if you have a pen and paper and you write that down, that might be more accessible to somebody else. Three, if you are deaf or hard of hearing, somebody using sign language is an alternative way to communicate. Or finally, the final way is, if you don’t have pen and paper, we all carry our phone with us every single day. 

And those are different ways for people to engage because we have got into this habit of this really one size fits all. And we see it across different ways, but we have to remember, there’s no one right way to do something. And for disabled neurodivergent folks, we’ve had to find…  So many, I’m gonna say innovative ways to get around things. Like for me, if I’m in the shop and I can’t see something, rather than having to go ask for help, I will lift up my phone and I will be zoomed in to that there, or I will be get my partner to there for me, but I can kind of quickly to me. We have to find ways around things. So I think remember to be flexible. That is always a core of invisibility is be flexible. 

Lori: Awesome. Well, I have about 800 more questions for you, Jamie, but unfortunately we’re out of time for today. But I really wanna just thank you for your time and for doing the work that you’re doing. And I’m really excited to hear you, see you present at our virtual coming up soon. 

Jamie: Yeah. So excited. Thank you. I hope to hear most people laughing or see them. I’m not sure yet. But it’s very fun. 

Lori: Yeah. All right. Thanks, Jamie. 

Jamie: Thanks. 

[ Outro music plays ]

Thank you for joining us for today’s show. For more information including how to subscribe and shownotes, please head to our website. That’s SENIAinternational.org/podcasts. Until next time… cheers!