Today, Nicole Demos, a SENIA Europe Board Member and a proud disabled Third Culture Kid, and host Lori Boll chat more about Nicole and how she now accepts her disability as part of her identity. Nicole shares her experiences growing up with a disability, frustrations and disappointments she went through and continues to navigate through with society and the systems not set up for the disabled community. Today’s discussion is Part 2 of the “Don’t Dis My Disability,” that Nicole has done. Check out Part One in Cath Brew’s podcast Drawn to a Deeper Story here. Nicole’s words are so important and so powerful, it’s worth more than one podcast!
Resources mentioned on today’s podcast:
- Crip Camp Documentary
- Being Heumann: An Unrepentant Memoir of a Disability Rights Activist– Judith Heumann
- Demystifying Disability: What to Know, What to Say, and How to Be an Ally -Emily Landau
Nicole Demos is proud to be a disabled Third Culture Kid herself with over 30 years experience in the US and overseas. She holds an M.A in Education from the University of Connecticut, and an M.Ed in International Counseling. For the past eleven years, Nicole has been a Learning Support teacher for students in grades 6-12 at the International School of Helsinki. Advocacy, Inclusion and Social Emotional Wellbeing are core beliefs that Nicole values and implements daily. Previously Nicole has presented workshops at Nordic Network and CEESA. Spending time with loved ones and her toy poodle Sisu, singing, reading, traveling and cooking are Nicole’s hobbies when she is not at work. Nicole is a member of the SENIA Europe Board and is looking forward to presenting at the first conference in Bonn this Fall.
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 hours worth of content in under thirty minutes, leaving you with time for a true happy hour.
Lori: Hey listeners! I’m so excited to bring you today’s podcast – it’s with Nicole Demos who is one of our SENIA Europe Board Members and she’s just like… she’s just awesome. Our topic today goes beyond 30 minutes, so I just want to give you that warning now, but it’s actually not a warning because I think that conversation is quite rich and deep and Nicole has so much to share about her life as a disabled individual. She’s also a Third Culture Kid herself with over 30 years experience in the US and overseas. So she’s got tons to share and I just want to get right into it. So, onto the show. Hi Nicole and welcome to the podcast!
Nicole: Thank you for having me, I’m excited to be here!
Lori: Well, you are a SENIA star and we will talk about that later but just so happy to have you.
Nicole: Happy to be here.
Lori: So today, we’re going to follow up to that incredible podcast you did with Cath Brew recently and let me just explain this to the listeners – so Cath’s podcast is called Drawn to a Deeper Story and it’s truly phenomenal. Well, Cath is phenomenal. So no surprise there. Well, I’ve added this podcast to our shownotes and I recommend that anyone who’s listening pops off this podcast and listen to that podcast and then come back here so you can learn more from Nicole about not dissing your disability.
Nicole: It’s a great title, isn’t it?
Lori: Yes, it is. So Nicole, just in case we have some listeners here who didn’t get the opportunity to your interview with Cath, can you briefly describe your background and when you decided to identify yourself as disabled?
Nicole: Okay, sure. I’m a Third Culture Kid which is a big part of who I am and where I fit into the world. I was born with cerebral palsy so I’ve always been disabled. I grew up however, in Athens, Greece. My father is of Greek descent and mother is from the Netherlands so there’s a little bit of internationalism in my background. I was fortunate to go to the same school from Kindergarten to Grade 12, they allowed me to enter on scholarship and then they made accommodations. But all through that period, I never thought of myself as disabled. I tried desperately hard to fit in with my classmates, desperately hard to be someone I wasn’t and so that sort of carried me along to university and finding my first job and it was only just recently that I said, you know what, I’m disabled and being disabled is okay so this is my time to just speak out and fight for myself and for those people who just don’t have the strengths or the energy or the know-how. And so I think what inspired Cath when we first met was the fact that I use disabled as a part of my pronoun, and I think she was intrigued by that and so that started the conversation and so this is me. It’s taken me 50 some odd years to say it loudly and proudly and as part of who I am but that’s not all of me. And I think that that’s an area of struggle for many people and maybe sometimes for me, but it’s kind of the way things have happened. You know, I’m in a wheelchair, I now currently use an electric wheelchair for the majority of my day, I used to be somewhat mobile in my younger years so as I learned to embrace this next chapter of my life, I really need more people to support me. It’s okay. It still feels a bit strange at times but I know that again, I’m going to repeat myself, but it’s okay, it needs to happen so that I can be the beset that I can be on a daily basis and I’m fortunate to live in Finland where these types of programmes and resources and people are available and the support system is there. So I’m very very lucky. So that contributed to me being able to… I don’t want to say “come out” but… identify.
Lori: Yeah, identify! So, can you just briefly explain why you think that you didn’t identify as disabled when you were younger?
Nicole: Yeah, I think it was because I just so wanted to be like everyone else – I didn’t see anyone else like me at my school, you know. The community where I lived in Greece, you did not see disabled people. They locked them up in mental institutions, that was the norm. Granted, this was 1970 and I would want to say that it’s changed, but it’s people’s lack of awareness and education and what should happen and simultaneously, I had that fear maybe hidden somewhere within me, and my parents were so super supportive and super advocating for me and they chose to stay in Greece where there were no services for children like me to the demise of our family in the United States who were all like, no, bring Nicole here! She can go to a special school. And my father who was an educator was like, no. There is nothing wrong with my daughter. She needs to be in a regular classroom and whatever support she needs, she’ll get it. So I kinda got a bit of both, but I think in my mind, I want to be like everyone else. I want to run. I want to do PE. I want play with my friends… and so I think it was an internal battle for so long, you know, and then I got on this kick like, you know.. I’m special. Well, yeah, I wasn’t using “special” in the right term, like I said, I didn’t have any role models, I didn’t have any examples, we did the best that we could. So when I finally did go to the United States for university, I was like “okay, everything is going to be accessible, everything is going to be great, my disability is not going to be an issue, I’m gonna drive a car and I’m gonna get a job and do all those things that I couldn’t do in Greece because the infrastructure was there, wasn’t there…
And then suddenly, I got to the US, I got to university and I was hit with “I can’t get into this building” or “I can’t drive a normal car” or “I can’t get any help because I don’t understand what I need but there’s nobody there to guide me”. You know, my parents are still living in Greece, they’re doing the best that they can, and my family in the United States is busy with their own lives, so again, it was that battle. It was that, “you know what, suck it up, Nicole. Put that stiff upper lip up, you’ve got that resilience, you’ve got that Mediterranean, you know, just go for it, you know. Your mom and dad will support you, they’ll be your safety net, which they were and they are but I didn’t realise. I just was like okay, I’m going to do whatever it takes to be normal and that was my word.
Nicole: Normal. I’m going to be normal, you know.
Lori: Your words, resilience and stiff upper lip, that really resonates with me because when we watch, we watch news stories or things where they’re celebrating what an individual with disability has done, it’s always that individual had so much resilience, you know. They push through. And it just makes me wonder, why? Why do we have a system set up where they have to have that resilience? You know, it’s just contant work instead of… yeah.
Nicole: Yeah. Yeah, and I think that, that’s the hardest thing for me to kind of deal with. I’m tired of working so hard, you know?
Nicole: I’m tired of working, I’m tired of having to prove myself time and time again, ten times over, see me, hear me, look at me for who I am. It’s more than just the person being in the chair, you know?
Lori: Yeah, yeah.
Nicole: And now I think it’s time. I mean, okay, it might’ve been time earlier but this is my time and if I can serve as a mouthpiece even for myself and say let’s do something, let’s change, let’s include, let’s just try… and if we fail, that’s fine, but if it gives us the impetus to keep trying again, you know. So in many ways when I look back, I’m grateful for not wanting to be disabled in the sense because it gave me a different drive but reality suddenly reared its ugly head and it was like.. Ugh.
Nicole: you know, and that was one of the reasons I chose to be an international school teacher. Because I didn’t… somebody gave me a chance, right? It’s that chance. Somebody looked at me for my qualifications, my interests, my personality, my drive, my education and said, you know what, we want you. We want you for you even though we don’t know what that is right now. And that’s what happened, you know.
Lori: Yeah, somebody gave you a chance.
Nicole: I may not have gotten that chance if I had stayed in North America, sadly.
Lori: Yeah. Unbelievable, actually… So you know well and most of the audience know that I’m a parent of a son with profound autism and there’s just been so many times where I felt that society has let him and they’ve let us down. And like you said, I’m tired. It’s that tired of constantly having to advocate for and fight for what my son deserves and…
Lori: And society has kind of let us down with either negative interactions with people, judgemental looks, comments, or just the system and how it’s not really set up for individuals with disabilities.
Nicole: No, it’s not set up at all.
Lori: So what are some frustrations you’ve felt throughout your life?
Nicole: I think for me, it’s the lack of connection with people because they either don’t know how to act around you, they don’t know what to say, the judgement, the pre-judgement, if I’m with someone, they’ll address them before they address me…
Lori: Oh that happens all the time… Ask him!!
Nicole: Yea, and I’m like, I’m the voice! Ask me! If I don’t want to answer, I won’t answer, you know?
Nicole: And some people have said, well, do you mind if people ask you questions and I’m like no. I know that some disabled people do and that’s their right but for me, I would rather you ask me 10 questions if you walk away with a better understanding of where I’m coming from at that present moment. So I think that that’s always been my frustration, still is my frustration, but now I have a personal assistant that accompanies me to school… they address her sometimes or they disregard her and address me, and well, there’s two of us now…
Lori: Right right…
Nicole: So you address us both equally because if it wasn’t for this person, I wouldn’t be here right now.
Lori: Right right. That shadow, we don’t address shadows, I get it…
Nicole: Right? So that whole thing with, oh well you want to do x, lesson x, but the room is not accessible for you to get into. Well you know what, if you wanted me to do this, then you would make the room accessible. You know? If you wanted me to join you on your outing, I wouldn’t have to call the restaurant in advance to find out where is the nearest bathroom, are there stairs, can I get in, the assumption of a ramp… unless you’re sitting in this wheelchair whether it’s a manual or an electric wheelchair, you won’t know. But why do I have to fight even before I get in the door or then say sorry Lori, I can’t join you because guess what.
Lori: It’s not accessible. Yep.
Nicole: Yeah, it’s not accessible. I know that some countries in the world don’t have accessibility avenues to make things work and I appreciate that and I know that but I’m talking about places in Europe and North America that have laws that say, you know what, what is it, the IDA, or whatever that is still not accessible. It’s unacceptable. It’s 2022.
Lori: Yep. Well sometimes, they have ramps but the ramps are so steep that someone may not have the arm strengths to get up that ramp without support. I mean, just…
Nicole: Exactly. So it’s the lack of accessibility, the constant having to prove myself, not being treated as a human being. At the end of it all, if you strip it away, I’m a human being and I have feelings and I have wants and I have needs and I want to belong and I want to be helpful and I want to be friendly. But if you look at me from the perspective of “oh, we’re not going to look at you because you’re a waste of time or you’re wasting my time”… that’s the biggest and I want to be naive and say I wish it would go away, but until we educate people about how important it is to be kind and treat people with respect and give them what they deserve, it’s not going to change.
Lori: Yeah, I get the what’s frustrating for me a lot of the times is when I’m in a room and people start talking to me about what my son has done and he’s in the room with me and it’s generally a negative thing in their eyes and I always have to say, can we go to a separate room? He doesn’t like to be talked about. You know, in front of him. And it’s just that disregard that this person, although he doesn’t have the verbal language to express it, that he doesn’t have feelings.
Nicole: He feels!!! Of course!!
Nicole: In fact, I’m pretty sure he feels more than us, you know, to compensate for the fact that he has no words. And why can’t you start a conversation with a positive rather than a negative? Because I’m sure that you must be feeling like, enough with the negative, tell me something good!
Lori: Right. I already know he does all these things – that’s not new to me, right? But I’m getting off the topic of you…
Nicole: that’s okay!
Lori: So now, how do you cope with disappointment now that you’ve embraced your disability identity?
Nicole: That’s still a tough one, you know?
Nicole: Because I know outside of my disability how educated I am, how qualified I am, how engaging and supportive I am, and yet, when it has to do with a job or it has to do with something outside of… it hurts still, because I’m not given that chance. When words are said like, “oh you don’t have experience”, I’m like, have you seen my resume? Like, I didn’t start being a special education person just yesterday… there’s a track record here. So how do I deal with disappointment?
I’m very emotional, as if you couldn’t tell.. I do the tears, the tears come, I’m learning very hard to not let them show in front of other people and I don’t know why I feel like that… the reflection, maybe because I’ve been told “you’re too emotional”. I’m sorry, in my job as a learning support teacher, I am going to be emotional because I can advocate for my students til doom’s day, for the lack of a better word, but I can’t advocate for myself. And that’s still what I’m trying really hard to learn, but i don’t know if I can fully change my personality. I feel. I feel with my heart. I’m a Mediterranean. I, you look at me the wrong way, I’m gonna cry. And if I’m not gonna cry, I’m gonna scream. I don’t know which one is better! So you know, I’m fortunate that my mother is still alive, my biggest cheerleader is watching me from above and he fought for me and if he could see what I’m doing now, I think he would be so proud. But you know, I have good solid friends, I’ve made new friends and new connections who support me beyond belief and I’ve never met them in person. I take that as a glorious gift and I say okay, I’m lucky. And if I can just give back, just a little, even a little smidge to someone else… see, I’m getting emotional!
Lori: No, I’m glad. You should have feelings and you should feel…
Nicole: That’s what it means right now and if there’s a lesson that I’ve learnt, it’s that it’s okay to sit with my feelings if I need to cry, I’m going to cry. If I need to scream, I need to scream. If I need to go and meditate, then I’m gonna go and meditate. If I need to, you know, practice self-care, then I’m gonna do that. And if that’s offensive to someone else, then you don’t need to be a part of it, you know? If that means that my friendships will get smaller… disappointment is hard. It doesn’t go away no matter how old you are, what you’re doing, it’ll always be a struggle because…
Lori: Yeah, of course.
Nicole: Because it’s… it’s human nature to be disappointed and I’m trying to learn how to deal with it in a more powerful, productive way, and maybe this is a platform for me to deal with it, is to take all that disappointment and say, you know what, I don’t want a little girl sitting in a wheelchair somewhere else having to go through what I went through. If she can take something from hearing me or seeing me or learning about inclusivity and what it means to treat people kindly and fairly, then that’s wonderful. That’s a start.
Lori: Would it be fair to say that when you do experience disappointment, you might come at it through the lens of “this is due to my disability happening?”
Nicole: Could be.
Lori: Right. And there’s no judgment there, I just…
Lori: It’s your identity, right?
Nicole: Right! And I think you know, maybe on some level, going back to that whole issue of I’m tired of fighting, I’m tired of disappointment. So when someone else who doesn’t really know me says wow, we really want you to be part of… we really want you to be part of SENIA or you know, can you help me with this, I’m like, oh yeah, of course, thank you! You’re giving me a chance. You don’t even know me but there’s no judgment there, it’s just genuine like, we want to hear from you. And that sometimes takes me aback. These are people that don’t know me, but how warm and wonderful it feels because I feel like I belong to something. I feel like I’m a part of… it feels really good. And then you get to say, well, why can’t everybody see that. I mean, I’m not saying that I deserve everything but why can’t there at least be some sort of acknowledgement that you know.. So that’s why I’m really focusing on the adventures and the tasks that bring me joy outside of teaching.
Lori: Well, and I think your voice is so essential – you know there’s that whole phrase of nothing about us without us. That you know, how can technically we be advocating for individuals with disabilities when none of us have disabilities. We may have children with disabilities or we teach children with disabilities and I think that it’s so important that we know we’re their advocates but to have your voice and people with, individuals with disabilities’ voices, we have to hear them. Otherwise, we’re… we may be advocating for the wrong things.
Nicole: Yeah. And I mean, everyone’s situation is different, everyone has their own obstacles that they have to face and we all have our own stories and we have to find ways to tell them, and it’s important that we tell them and it’s important that we give hope to others around the world that you know, maybe for cultural reasons can’t say anything or that you don’t have the technology or whatever. It’s so important. And that’s why I’m so grateful.
Lori: Well, like all of us, you know, we’ve had times in our lives we wish we could go back and do it all again. Have a better response to a situation where somebody treated us poorly or whatever, have a witty comment in response, you know, I’ve gone back and had many conversation where I should’ve said this. If only I would’ve. Do you have any of those moments?
Nicole: Oh yeah. Tons. I mean, I’m sure I could probably list them all and we’d be here all night, not that I would want to do that… but I think the biggest take away from that is that it’s okay to have those moments of reflection where I say, I should’ve… why wasn’t I brave enough? Why didn’t I say what I should’ve said? Or why didn’t I speak up even when I knew what to say? Why didn’t I just say “Oh I’m not sure” so I think that’s why maybe I’m more energetic now than I was before because enough is enough.
Lori: Enough is enough.
Nicole: Enough is enough.
Lori: You know, just the other day, so I play on a softball team, and I don’t know the people that I’m playing with and a man, we’re really bad, the team is terrible…
Nicole: I’m sure you’re not!
Lori: I didn’t say I was!
Nicole: If it wasn’t for you, there wouldn’t be a team, right?!
Lori: The team is terrible… but one man, he was joking, and he said gosh, I feel like we’re that special ed class where all the others in the school feel sorry for us. And I sat with that for a moment and I was just like. “Oh no. This is not okay.” And I don’t know him. And I just had to say, “can you think of a different analogy?” Like, I have a child with special needs, this type of comment is very hurtful and very disrespectful.
Nicole: What was the reaction?
Lori: He was. He very much apologized and said “I’m sorry, I was just trying to be funny” and I said “Yeah, yeah, I get that. It’s just not funny”.
Nicole: No, it’s not funny…
Lori: But that type of interaction for me is so hard. I’m a staunch advocate for my students but it’s really hard when you’re in a social situation or whatever, to just be like… you know, like, the R word… I will automatically say “no, we don’t say that word” like, I say that any time I hear it – No, that word is not okay. But in these other situations, the joke always was the short bus? Do you know that?
Nicole: Yeah, I’ve heard that. We don’t have that where I come from.
Lori: Yeah, it’s not a funny joke. So, it always just shocks me that it’s such… it’s such basic humor. Like, can’t you be funnier than that? Can’t you be a little more… use more of your intelligence to come up with a funny joke?
Nicole: Right! And I don’t know if the people that hear it are stunned at the remark and they’re compelled to laugh because everyone else is laughing or they’re like so ignorant to the fact that that’s hurtful… it just…
Lori: Yeah, right, it goes back to that whole thing we have to educate our society about what that is and how hurtful that is.
Nicole: Yeah, so in answer to your question, I have a lot of things I wish I could do over but maybe the fact that I did them the way I did just helped somewhere within me, just build that fire. One of my favourite songs actually that I shared with Cath was, I don’t know if you’ve heard of the group, The Script, well, their Superhero song. I have fire in my soul – that’s what I’m feeling now. And of course. That’s going to be my next tattoo so yeah. But you know, that’s what I’m feeling so I’m going to stick with it. I’m gonna bring people along for the ride.
Lori: I love it. Fire in my soul.
Nicole: The fire’s not gonna burn out.
Lori: You talked about earlier, you talked about not having anyone who was like you in your school or growing up. So I’m curious about role models – did you have anyone to inspire you growing up?
Nicole: I remember my father talking about a book he was given about a young girl that had cerebral palsy and the book was titled Karen, it was about a young girl in the late 1960’s, I think Karen Kilaleo was her name, and she had cerebral palsy, and my father said when he read that book, he knew instantly that that book was talking about me. Like, he made connections to some of the things he had read. I don’t wanna say that she was my role model but that was the only mention I had. I mean, I didn’t have any library books I could check out that talked about kids in wheelchairs or anything like that and I wanna say I thought my father was a role model because he was my biggest cheerleader but outside of those two people, I didn’t have anything else. I mean, I didn’t watch any TV shows that highlighted the strengths and challenges of someone with a disability, I didn’t know until later on in life about programmes like the Special Olympics. You know, all these things and maybe some of that was because I wasn’t living in North America, you know. And I was living in Greece. But still. Now I’m finding out that meeting and learning about all these powerful men and women who are just advocating for themselves, people like Judith Human, like I didn’t know her story and the movie Crip Camp and I don’t know if you saw that documentary, which just opened my eyes beyond belief. I was just like, why didn’t I know?! That kind of feeling. It was just amazing. People like Emily LeDao, on demystifying disability, just amazing amazing powerful people who are just saying, you know what, it’s okay to be just like us. So I think most of my role models now are coming later on in life. And I’m so happy but I wish, you know, I wish I had known that there were people out there who were struggling, just like me. You know, I wish I didn’t have to walk down the street and get spit at when I was on crutches and be told how dare my parents let me out of the house. You know, it’s things like that that still sticks in my head. So what was my response? I was not very nice to that elderly lady.
Nicole: But she didn’t speak to me like that again! But it caused me more hurt than it did her.
Lori: Yeah, so you’re now… you’re now reflecting on yourself and your reaction rather than the totally inappropriate things that she said.
Nicole: Right. I was proud of myself – I walked home by myself, yes, it was 500m away from home but I did it myself. Put the groceries in my backpack. That was huge for me! For somebody else, maybe not, but then, here’s the woman who spit at me. An elderly woman who literally. Ugh. Anyway… So like I said, my role models came later on in life. And I hope that I’ll find more. I’m sure there’s more but
Lori: Well, there’s more. But I hope you know that you’re a role model.
Nicole: Thank you.
Lori: Do you consider yourself a role model?
Nicole: Not yet. Not yet.
Lori: Well, you are to us.
Nicole: How about a role model in the making?
Lori: Okay, fair….
Nicole: That’s all I can handle right now. But I think… I still have a long way to go and a lot to learn. But I appreciate that.
Lori: Well, I think all role models have a long way to go and a lot to learn… And, you’re… you’re a board member of SENIA Europe and you’re also a frequent contributor to our newsletter. Because you read an awful lot.
Nicole: I do, I love to read.
Lori: Yeah, you’re a reader and you give us so many articles about, for, under the title of “What We Are Reading”. I mean, yeah, you’re constantly learning but you’re sharing what you’re learning and that makes you a role model. Sharing about your story, sharing about other stories. So, you may be in the making but aren’t we all?
Nicole: Yea I’ll take that. I’ll learn to take that.
Lori: Just take it! Pat yourself on the back. So, you are a board member of SENIA Europe and we are so thankful for all your contributions. How did you get involved with SENIA and what does SENIA mean to you?
Nicole: For me, it just brings about that feeling of belonging and knowing that you’re fighting for a common goal which is to be inclusive, to educate, to make people aware of everything that should be a right to everyone regardless. And I think it came at a time in my life, first, it was during COVID so you know, everyone was struggling for a variety of ways but I had applied for a couple of internal positions and I didn’t get them and I was feeling.. Really just down on myself. I really wanted to find something that would give me purpose. And I saw something on Facebook or somebody shared something about SENIA and I looked into it, you know, I went on the website, international website, I looked at articles and past things and then I somehow connected with April. April Remfrey. And then when the notice came that they were looking for members to be part of the Europe board, I thought, yeah. Why not. Let me give it a go. I’ve got nothing to lose, just do it. And it gave me focus, you know. Okay, what am I going to say? How am I going to interact? What am I going to do? And then it was funny because when she told me “no we’d love to have you on board”, I was like “are you… serious?!”
Nicole: Yeah, I doubted myself. But from that, I was like… okay, this is this is what I wish would’ve been around for me when I was a student. You know. When I was struggling. When I fought to get that 5 extra minutes so I wouldn’t be late to class but I had to leave the other class early. You know. So I think for me, SENIA has just opened doors and just brought a common vision and it warms my heart. And I’m so grateful to you, and everyone else that just had the impetus to start something that is just amazing and it’s not to sound… this is genuine, you know, this is what’s needed. So.
Lori: To be clear, I didn’t start it… I joined about 9 years into it. You know, we’re 20 now!
Nicole: Yea, I know! But you know, I bet, like you were part of the early vision. And other people that just said “enough is enough”.
Nicole: You know, going back to that phrase. This is going to be the catchphrase of the year, right, “enough is enough”. So I’m just… it brings me such joy to just be able to be a part of something that is so amazing and so needed and so worthy a cause. But it shouldn’t even be a cause! It should just be… like a daily routine! You know? It’s just…
Lori: Yes. It should.. It just is. It’s just life, right? Yeah, that’s what it should be. Well, I hear there’s something very exciting coming along…
Lori: Collaboration that you’re doing with Cath Brew…
Nicole: Collaboration. Yes. It’s very exciting. I have been sitting on this project since I first got my Masters degree – it’s actually in gifted education but of course they don’t call it that, it was just education through the University of Connecticut, and we had a creativity class. And our task was to create something that we felt that we wanted to share with the world. So I wrote my story in the form of a children’s book. It wasn’t my real, there were certain parts of it that was very very real and certain parts that had to do with what I aspired to be able to do and it was great, I loved it, it was very cathartic for me, but I put it away. I put it away on the bookshelf, I’d gotten one of those… I don’t know what they’re called. They’re bound books that you can get and kids can write in them? I’d gotten one of those and done it and I typed everything up and my friend drew some pictures and I wanted her to do them in the style of young children, and so I enjoyed it and I appreciated it, but then as I was going through this journey of identifying as being disabled, you know, start presenting in conferences and stuff, I thought, what about my book? Let me do something about my book. And it was actually during the virtual SENIA conference this past December that I listened to Cath Brew’s presentation. And I don’t know, something was said and it just sparked that initial fire, and I thought, you know what, let me do some research. So again, I did some research, looked up what Cath was all about, looked up how she you know, talked about TCK kids and marginalised people and I thought… I wonder if she’d be willing to at least give me some feedback on my manuscript, because I had done the whole… send your manuscript to the publishers and gotten the standard “thank you so much, blah blah blah”. So I met with April, once again, and I said “do you think she’d be willing to check it out for me?” and she said “sure, give it a whirl”, so I reached out to Cath and immediately Cath said “let’s have a chat” and that’s when the whole idea of the podcast initially came out because of my identifying as disabled and then through conversation, she said “I really really like your story and what you’ve written here. What are your plans?” and I said, “well, you know, in the ideal world, I would love to publish it and I would love to send it out and have it be a part of international school libraries because again, it promotes disability in a positive light”, I’m not gonna give too much away of the story, and she said “let’s do it!” and I was like… “are you serious?!”
Nicole: You know, again, that doubting…
Lori: Yeah yeah.
Nicole: So that’s in the works. That’s gonna be a while…
Lori: Sure! Ahhhh! That’s so exciting!
Nicole: So, that’s the goal.
Lori: Wow, I cannot wait. I cannot wait.
Nicole: Then, one of the other things is focusing on publishing companies that deal with stories of marginalized people so you know, that’s… so if that for some reason doesn’t work, we’ll have some other avenues but I’m hopeful that, you know, it’ll work. And again, if it spreads awareness, if it brings joy, if it brings conversation, if it brings… you know, that’s what it’s all about. Just to share something. Yeah.
Lori: That’s gonna be great.
Nicole: I hope so!
Lori: I know you, I know you both and I just know it’s going to be phenomenal. Wow.
Nicole: We’re taking it at a pace that is good for both of us so it feels right and I said to Cath right away, this isn’t MY project, it’s OUR project, so let’s look at it as that.
Lori: Love it.
Nicole: It’s a collaborative effort, and you know, hopefully it goes beyond friends and family that want to support to the world. You know, it’s not about the monetary thing, you know, if anyone is like “oh, she’s…” but this is about just sharing a story, having a voice, hopefully giving others a voice…
Lori: I think most people that write books know that it’s not about the money… hahaha it’s not.. Very likely that you know…
Nicole: Yeah. And this takes place in Greece, you know, where I grew up for most of my life, so again, it brings things that are true and yet some things that may be a little bit embellished but it’s a story and it’s mine and I’m anxious to share it and it will be…
Lori: I’m anxious to read it! Well, finally, you, as you know, SENIA is all about inclusion. What tips do you have for us to educate and make others aware of inclusion?
Nicole: I think the most important is meet whoever where they’re at. Validate what they’re feeling, meet them where they’re at, be supportive, be kind, allow them to process because there’s a lot that goes with processing, be their advocate if you can… I know it’s more than 1 tip, but just… it’s a package, you know? It’s a package.
Lori: Yea, you can’t just do one thing.
Nicole: You can’t just do one thing. It’s not gonna happen when you want it, it’s gonna happen when that person is ready. When that family is ready. Or when those, when everything is in place, all the supports, all the resources, are ready and willing to go. And honestly, in education, it’s okay to not know what you have to do. That’s why we’re all collectively involved in something like this, you know. We’re not experts, but if we look at it from the perspective of “what’s the best thing for Nicole, for Lori, for Brayden, for Joey, everything…” what’s the best for them right now so that they can walk away from whatever setting they are in feeling like “oh, today was a success”. Or if it wasn’t a success, I tried. And my trying was okay. I think that’s the biggest lesson. That’s what I strive to do every day as a teacher and that’s why I, you know, I know, I wasn’t able to attend graduation this year but I got wonderful messages from graduating seniors who I supported for 6 years plus, that’s what I’m going to take away. That’s what I’m going to print off and put it in my little book.
Nicole: And when I have those moments of doubt or disappointment, I’m going to take those out and say, you know what, I did make a difference. I helped. If you’d asked me a couple of years ago, I’d be like “No, it’s the kids!”
Lori: Oh yeah.
Nicole: Yea, it’s the kids! But it’s also me. And everyone else that was involved in the education. So.
Lori: I call that my “smile file”.
Nicole: Yeah, I like that!
Lori: Yeah, just to… unfortunately, I lost mine… It was like, an actual file that I carried around with me… somewhere in my many moves, that smile file disappeared…
Nicole: It’s probably in a box somewhere…
Lori: Probably in a box somewhere, yes. You’re right.
Nicole: Well, now you can create an updated smile file.
Lori: There you go!
Nicole: And have a back up! And have it paper and digitally! I’m still an advocate of paper, all this computer stuff…
Lori: That involves a lot of executive functioning skills… that I don’t currently have.
Lori: Well, Nicole, I mean, what a great conversation. I hope we can continue to have these because you have so much to teach us.
Nicole: Yeah, I would be more than happy to continue. Thank you for the opportunity.
Lori: And I, yeah, my little challenge, well, it’s not little, but my challenge to everyone listening is to… if you’re in an international school that doesn’t have an inclusive mindset, either advocate for it or go out and find one because…
Nicole: Yep! A lot of us know how to help!
Lori: Yes, exactly. That’s why we’re here. We wanna help and support but yea, I don’t think I’ll rest easy until schools all over the world are inclusive so. I think I have many restless nights ahead, but…
Nicole: Me neither. We’re on our way.
Lori: We’re on our way.
Nicole: Every step, a wheel forward is, you know, it’s in the right direction.
Lori: I’m gonna change it to we’ve got fire in our soul.
Lori: Maybe that’ll be the theme of our next conference!
Nicole: We’ve got enough fire! We share the wealth of the fire.
Lori: That’s right. Alright, well, you’re the best and we appreciate you.
Nicole: Thank you Lori, I appreciate you guys as well!
Thank you for joining us for today’s show. For more information including how to subscribe and show notes, please head to our website. That’s SENIAinternational.org/podcast. Until next time, cheers.