Don’t ‘Dis’ My Ability – with Nicole Demos

What’s it like living with a disability? We might understand that a person uses a wheelchair as their legs, but what does that really mean on a daily basis?

This week Nicole Demos talks honestly about living with a disability. Nicole opens up, not only about her own emotional journey, but how she’s been able to uses her life experiences to better serve the students she teaches in special education.

In listening to Nicole, you will learn how to be inclusive about disability why visibility is so important, and when not to be ‘helpful’.

Nicole Demos is proud to be a disabled Third Culture Kid herself with over 25 years of experience in the US and overseas. She holds an M.A in Education from the University of Connecticut, an M.Ed in International Counseling and is currently enrolled in a pilot Social Emotional Behavioral Wellbeing Certificate also from Lehigh University. For the past ten 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.

Nicole is also a SENIA Europe Board Member and seeks to spread awareness regarding inclusion for all in education. 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.

Resources

DeMystifying Disability by Emily Ladau

Disability Stories by Alice Wong

Crip Camp – Documentary

Being Huemann: An Unrepentant Memoir of A Disability Rights Activist by Judith Huemann and Kristen Joiner

Nina Tame – The Disabled Step-Mum you never knew you needed 

Find Nicole at

Follow Cath at Drawn to a Story

Episode information

Music by Grant McLachlan

Transcript

Cath: you're listening to drawn to a deeper story. I'm Cath Brew from Drawntoastory.com. I'm an artist who illustrates and educates about marginalized experiences for positive change, with a particular interest in identity belonging, an expert. This podcast is about the lives that challenges and the difficult conversations around them.

It's a place to listen openly. To absorb people's truth and to learn how to show up differently, how to shop differently for the benefit of everyone. And that's you included whoever you are as a listener. Now you've all probably seen on social media and emails where people are stating what their pronouns are, whether that's she slash her slash hers.

Or he slash him or they slash them or he slept, they like whatever that mixed or pronoun, these were all used to seeing that now. And it's not actually that long ago that our colleague and friend put me in touch with someone who had a work inquiry for me. And on our first call on zoom, I saw that it said her name was Nicole

She slash her slash. Slash disabled. Now I'd never seen anyone use anything else other than their agenda in their pronouns. And I wanted to explore that more. It really got me thinking about what identity means and how we engage with our own identity. And I never thought about identity in that. And yes, we all have identities and they can all differ depending on our context.

And when we feel drawn to use them. And when we don't feel drawn to use them, maybe they're there all the time. But using this kind of way in terms of saying disabled as part of the program was new to me. So I asked Nicole to come on the podcast and let me introduce you to her. She is a proud, disabled third culture.

Herself with over 25 years of experience in the us and overseas, she holds an ma in education from the university of Connecticut, a M ed in international counseling, and is currently enrolled in a pilot, social, emotional behavioral wellbeing certificate. Also from. Lehigh university. Now I think I'm saying that correctly.

Nicole: It's good. Good.

Cath: For the past 10 years, Nicole has been a learning support teacher for students in grades six to 12 at the international school of Helsinki, advocacy, inclusion, and social emotional wellbeing, uh, core beliefs that Nicole values and implements that. She's also a board member of senior Europe, which is the special education and inclusion association.

And she seeks to spread awareness regarding inclusion for all in education. And when she's not doing all of that spending time with her loved ones and her toy poodle SISU singing, reading, traveling ankles. Uh, her hobbies and what she gets up to. So welcome to the show, Nicole, thank you so much for being here.

Nicole: Thank you so much, Cath for having me, I look forward to this conversation, so very, very much.

Cath: Yeah. Thank you. Me too. It's a pleasure to have you on and I'm, I'm very pleased that we met each other and it got a hold of thoughts triggering in my mind. And I thought it would be a really interesting conversation to have.

Absolutely. Can you tell us a little more about why you identify as disabled?

Nicole: Well, because. Me. That's who I am. I've always been disabled. It's part of my identity, but my journey to that point was a very long, complicated, winding process. And so as all of this, who are we? Where are we? What are we doing?

Came to the forefront. I decided that, you know, why not step forward and positively identify. Myself as being disabled and that there's no shame behind it. Absolutely threw the word out there and thought, well, it's not a dirty word. A lot of people have maybe thought that, or don't want to address it, or don't want to mention it.

But I figure, well, this is me. So. Um,

Cath: so what does living with a disability mean to you

Nicole: I guess in a very interesting way I've never really known life without it. Something has always been a struggle or a challenge. I suppose when I was younger, I didn't really think of myself as being different from my classmates or my friends, but there was always something holding me back.

And that's something that. Not being able to join in physically in activities or special events, but I always tried, cause I was always raised to think, well, you know, go for it where your support network will stop you from hurting yourself. We'll be there when you fail. So I didn't really think about it in that sense.

It was almost as if I felt like picked to be disabled. So yeah, there it is. You know, no worry.

Cath: How do you think it makes it different for someone like you, who identifies with being disabled from light? You say you'd never not known it compared to someone who then has to learn to manage it because of accident or medical condition or anything like that. How do you think that's different for you?

Nicole: I mean, it's different in the sense, because, you know, it's something sudden it's something that's beyond your control. Something's happened. That's led to you not having an ability to do something that you maybe took for granted prior to that.

But I think in any way, it's a mindset hurdle, you know, no matter how you look at it, that's where it's similar. You have to, at some stage find the strength to say, this is what. Whether it was now before, or possibly in the future. So what do I need to be still myself and what can I share with others so that maybe they can learn from my experience.

So by being myself, I think, you know, what do I need to be able to function, you know, on a daily basis? Yeah.

Cath: And do you think that that's got better over the years? Because we know very much that the shortcomings of society. Access to buildings and things. How things have changed over the years, particularly in terms of physical disability, my grandfather had Ms and had struggled walking.

And in that day it really was difficult in terms of his life being out and about. And people's attitudes. How do you think that the external context and environment in which you live has had an impact on how you have coped or not coped?

Nicole: I'd be naive to say that it's been roses and everybody's little.

My being disabled in a positive way and that's wrong because it hasn't been, and that will only change if people become educated and aware of how to treat people regardless of how they identify. You know, I think a lot of misconceptions with being physically disabled is that, oh, well, there's a ramp so you could make, or there's a door, you know, and you can push the button.

There's limits to that just because there's a physical ramp doesn't mean that a person in a manual wheelchair can access it more readily than someone in an electric wheelchair. And if weather conditions are poor, how, if it snowed, then that doesn't necessarily mean that the ramp has been cleaned. You can access it or the door doesn't open the right way.

So I think the best way to combat that is to have someone who's physically able to, you know, sit in a wheelchair and see how challenging it is to go up a ramp or open a door when you can't use your hands or your arms, or you need someone to help you do it. So I think of course it varies where you are.

Some countries and cities are more aware of what needs to happen, but possibly in other cultures and other places that doesn't even exist. You know, I've been fortunate to very carefully, maybe in some way, subconsciously look at where I want to be in various stages of my life to sort of been sure that, well, maybe I can get through it, but at the same time that can get through.

But then you find out that you can't gets really tiresome. And really, I don't want to say deprecating. That's not the word, but it's, it takes a toll. Yeah. It takes a, it takes a toll. And at one point you're like, oh God, why, why do I always have to say, well, can I use the bathroom or can I get into the building?

Or can I join you? You know, at the pub when I can't even see over the bar because it's too high or I can't get there because there's 20 people in front of me. Yeah.

Cath: So actually, although there's a physical disability, there's so much more that comes with that in that your autonomy gets taken away, the loss of freedom and independence, things that other people might just take for granted.

It's so much more than yes. I'm in a wheelchair or yes, I'm deaf or yes, I'm blind or like, whatever. The disability is, I'm not sure people see all the complications that come with that.

Nicole: And to be fair, I don't think I saw those complications as a child because I always thought, well, I can get through it.

No I'm going to get to it. And it was only honestly, just recently where I really faced a lot of challenges physically and emotionally that I had to take a step back and I had to really say, but I'm not like everyone else. I can't put myself in that category anymore. I need to stop trying to be like everyone else.

g to say, you know what, it's:

You know, I'm very lucky to live in Finland. So there's situations and resources that are available. But if you don't know, they exist, allow yourself to feel that you have autonomy over your own identity. Does that...

Cath: yeah. Yeah. That makes sense entirely. And as you were talking, what came to my mind was people see physical disability or the, or you ask them about it?

I think an image that would come to mind most often is someone in a wheelchair. International symbol for disabilities is that person a wheelchair. I was at a conference a number of years ago, and there was a guy who wasn't in a wheelchair, but he had sticks and he had trouble walking, but he was able to walk and he was frustrated.

He was talking to us cause he'd asked for the disabled room. And the assumption in that hotel was that therefore I think that someone was in a wheelchair because he was on the ground level, but his room was at the very, very far end of the corridor. And he said, How ludicrous that was that for him, with his abilities, it would have been easier to go up a flight of stairs and have a room right there than have flat and go right to the end of the corridor.

So there's this marginalization it's society saying. We see, we think we see you, but actually

Nicole: you don't

Cath: don't have a bloody clue.

Nicole: Well, I can fully, fully appreciate what that man was feeling. Cause it's happened to me before being permanently in a wheelchair. I used to use those same words. You know, my backpack used to be full.

I would go into a hotel and I'd ask for a disabled room and I'd be on the fifth floor right by the elevator. And I'm thinking, well, if there's an emergency, how are you expecting me to climb down five flights of stairs when elevator. You know, are you going to come and take you by the hand? Or,

Cath: you know, I, I shouldn't laugh, but I'm just laughing at the ludicrousness of it. It is just

so not thought out.

Nicole: The assumption, Well, we have a ramp or we have an automatic door or, you know, we have braille on the elevator buttons. Well, yeah. What difference does it make? The person who actually needs to use them and should use them, can't get to them. And through that process of, oh, I have to ask someone else for help.

I think that was my biggest hesitation when, when I had to make the. Whether or not, I would still be able to physically walk in whatever capacity I had left or get into the wheelchair. Oh, I have to renew my way of thinking and ask for help again, still not going to be the right fit for me. Yeah.

Cath: And I think that's really important for people who aren't disabled to actually reflect on, because I know. Like all of us, we have days where we're feeling great and we're on top of things and we're loving life. And then there's other days where we're okay, but we're a bit down and we just want to hide away. Or we want to just go and sit in a coffee shop or whatever. And I can do that without having to interact with anybody.

But someone like you, there's that level of having to put on that face and interact and ask for help and be. Just asking for help, must be incredibly tiring all the time.

Nicole: It's hard. I suppose I can say I used to joke about it previously when I'd say, well, you'd know when I need help. Cause I get a certain look on my face and apparently I do forget the fact that I'm of Mediterranean descent and we, we have done our emotions right away.

No matter what I mean, that's. But even having to put on that look, or even getting to the point of complete total exhaustion before you get to that look asking for help getting the help, but then feeling so. Drained after that because, okay. It might be great for, you know, half an hour or an hour, then that little tiny little, like nudge in your, in your body goes, oh, I'm going to have to ask for help again.

We'll ask the same person. Do I ask somebody else who I suck it up and try to deal with it and then get frustrated. Um,

Cath: I feel like you might be being a bother, even though they wouldn't hesitate.

Nicole: Right. It's, it's, it's that whole thing. And these are even with, you know, friends and family, you know, I don't, I don't want to bother anybody, but now I have to.

So even though it still might hurt me, even though I might have those fleeting thoughts of, oh, I'm a bother. I'm just going to do it now. My survival depends on it. Yeah. And so, I don't know. I think hopefully, you know, in the future it will be easier for others to just find the courage, to just identify. So maybe some of those, you know, we've come a long way with disability awareness, uh, you know, case in point just recently best office.

Went to the movie Coda with, um, you know, death, um, actors, which I think is wonderful. It's about time, you know, the world is changing. So now you'd, let's all find the courage to strike when it's hot, when the iron's hot and then surround ourselves with people that genuinely care about us, but carefully.

Everyone else in that process of finding who they are and what it means, um,

Cath: and what people need without people having to ask for it. Like, I think it's also everyone else's responsibility to see people and to, to step in so that. You don't have to ask that someone might say, can I help? Can I help you?

Are you okay? Would you like some help or that kind of just knowing that it's a safe space for someone to ask for help.

Nicole: Yeah. And I understand that it's, it's, there's a hesitation that comes with asking for that help. And a lot has to be with, you know, the tone of voice when they use, when they say, can I help you?

Because sometimes it can be bothersome as well. Tell me more about that? Well, what can I help you? Can I help you? Well, no, let me try it first, myself, I guess, is that stubbornness, but it has to, it's almost like don't ask, just do it, I guess for me would be my thing, open the door for me or cause I'm going to be grateful even if I don't say it.

Yeah. Yeah. I guess it's finding the balance. I mean, I suppose. I don't know, it's, it's hard, but, but just see me seeing me as, but also see me as an individual outside of the wheelchair. And I identify as disabled. There's a lot more aspects of me. I'd like you to get to know as a person that's also the opposite that happens, you know, we get so fixed on, oh, what are you look like to the rest of the world?

We see you, but then we don't bother trying to get to know you because we may have a misconception that maybe you can't speak, or maybe you can't sink the way I think, or maybe you're limited in some other way,

Cath: or even just, simply someone might be saying, I've never spoken to someone in a wheelchair and all these ideas of stuff comes up in their heads.

That then makes them feel awkward. That then actually stops them from doing anything or makes a really awkward conversation. And actually you end up being the one that suffers rather than them.

Nicole: Right. And I, but I think, you know, kids are so resilient nowadays. I love it. When children ask me questions or they'll come up to me and say, Well, why are you in the wheelchair?

And I'll say, well, you know, my legs are not as strong as yours. And that simple explanation is enough. Cause you're like, oh, okay. Have a good day. See you later, you know, no big deal, but it's funny how it's the adults like, oh, don't, don't ask that question. You know, look away or so I think that, you know, if you, if you have those conversations because they are going to be difficult and I'm trying to understand that it is going to be my reaction to something will be varied and taken differently by certain people around.

Yeah, I have to be open to that too. Just as they should try to, you know, ask me questions. I'd rather ask questions than just assume something

that's completely....

Cath: yeah, absolutely. I think from the stuff I've heard and what I've observed as well. Is that people, they see the difference. They don't see the similarity, so they get fixated on the difference.

And then they don't realize that they actually ignore the person like you. Like you're saying, I mean, people who, who just, I mean, I've seen, I mean, I don't need to tell you, you know, that I've seen some awful behaviors over the years where it's all about the disability and they're so awkward. It's like, don't mention the war, but they can't get their heads out of talking about that one thing.

And actually it just objectifies someone hugely, and you don't see more? They don't see more

Nicole: no. It's funny because I, I, um, I have a personal assistant that comes with me on, you know, my outings or when I go to work to sort of be my support person on an immediate level. And for me at the beginning, that was really, really hard because that was a person that I had to trust, you know, 110%.

But it's funny how many times we'll go somewhere. And someone will speak to her instead of addressing me. And I'm like, I'm right here. Like, you know? Yeah. But that's all part of the journey. And I think that one of the biggest gifts that I think I've given myself is to be able to say that word out loud, you know, I'm disabled.

This is what this means for me. It might be different for you, but how am I going to now? Share my journey. That's taken me 50 some odd years to, to just say it proudly and loudly without. Oh, you know, is someone going to judge or is someone going to say something that I'm not going to agree with?

Cath: Yeah, exactly.

And also, why should you be the one that's permanently having to justify your existence or, I don't know. There's just something that, I mean, you, you and I both follow Nina tame on Instagram and for listeners who don't know her, she's a disabled person who doesn't offer a lot of work in fighting. And she's wonderful and she's, she's quite in your face, which I liked.

And so that was something I wanted to ask you with, with knowing her approach and how she looks at things. How much do you feel that you have to tolerate ablest views? Or do you educate, or do you,

Nicole: I try to educate, but I wish I had known about Nina sooner because when I was growing. I didn't have those positive women, men role models that took disability at its core and just were like, this is.

You know, listen, and I think that that's so empowering and you know, I'm a special needs teacher. So my role is to advocate for my students, no matter what, but yet at the same time, what a contradiction, I wasn't even advocating for myself. And I didn't do that. And I look back on it now and I'm like, what was I even thinking?

But I'm so grateful to still have that chance now and to be working on certain projects so that I can. Be much more of a positive role model for someone in my school, in my community, online with my posts or whatever I do, because you never know what one word or one gesture or one conversation will have on someone else.

Just being visible. Yeah. I, you know, I fight ableism every day wrong,

Cath: you know, you just get on with it. Cause it's your reality.

Nicole: Every day, taxi has to take me to school in the morning now because here in Finland, it's still snowing and it's been crazy, but you know, we have to get on the sidewalk so that I'm closer to the entrance of my school, but yet able-bodied people are talking and they're not moving out of the way.

And it's like, well, you see that there's a van. Backing up. I mean, what do I need to add bells and whistles and you know, that kind of thing. But

Cath: I think that's what I mean about, um, it's our, all of our responsibilities to see people, whatever their stuff is, like whoever they are. And because I think whether someone's disabled or not to say, but it's common decency.

To me personally, anyway, that's how I view it is just to be aware of other people around you and engage and try and help them. But also maybe, I dunno, maybe if you don't know, then it's about asking and saying, can I do something to help rather than like, there's those awful stories of hearing people who've just wheelchair gets kind of moved in there.

It's terrifying because they're suddenly taken across the road and they have. We now off permission and then not wanting to go that way. And someone just takes, I mean, that, to me, that's a horrendous abuse of someone taking control of the wheel. That's your means of transport? I mean, that's scary.

Nicole: Yeah, but also, I mean, you know, realistically it's okay to not, not want to deal with it too, as the bystander, you know, that's okay too, but just treat me the way you would want to be treated.

I mean, that's the old adage, right? Like if you want respect, then give respect back. I would prefer genuine empathy over. Oh, hi. How are you? I feel so bad for you actually. Do you, have you actually sat in this when you can't get through a door or you can't put your socks and shoes on in the morning or you need help accessing the bathroom or your tray in the cafeteria?

You know, every single thing, every single thing, like you said, if you could, if I could hide under the covers every day and say, okay, today I'm not. Frustrated today. I'm not going to bring myself down today. I'm going to have a genuine smile on my face and be, unfortunately, it doesn't happen, but it's getting better.

I'm choosing to believe that with everything that's happening in the world and us being more aware and having access to things like social media and books and conferences and role models. It's changing.

Cath: That's where my hope is that it comes in, that other people are starting to learn. And it's part of the reason I do this podcast is to, to have these conversations about things that people might not like to hear.

But what you've just said is perfectly understandable, because if you think that you've spent your whole life having to explain, having to ask. It puts you on a back foot. Like I imagine the, the how impacts your self-esteem and confidence and that transition to actually, no, I'm not going to do this anymore and I'm not going to feel sorry for it or apologize for it or whatever that that's a massive transition to, to embody

Nicole: scary at the same time that it's so empowering.

I'm not going to pretend anymore. I feel awful. I'm going to feel awful. If I'm going to be adventurous, then I'll go be adventurous. Why not? If I'm going to create something to make somebody else more aware, you know, more power to me, then I'll reach out to those people that think like me and want to be part of this whole movement.

And that's why I was so pleased that we connected because I thought, well, here's the person who works to promote. You know, marginalized people heal and that's me. And so, I don't know if you remember my telling you this when we first had it, like, that was just such an eye-opener to me, because it was like, it's okay.

It's really genuinely okay. To admit that, all right, this is me. So how am I going to move forward?

Cath: Scary, because it also means that you're fully visible. There's no hiding. There's no, it's like, this is me. And then. You then obviously have to wait and see what comes off. Right. And that can be scary because if you have two things, there's a sense of you're able to control what and protect yourself.

But if you're out there and like, this is me, it's like, oh, what's that what's going to happen. And that, that can be scary. Cause it's

Nicole: important. Yeah. It's important. Cause you know, will I, will I lose friends over this? I hope not. You know, will I send family members will hopefully not, you know, will this put any future career aspirations?

On the back burner while I hope in a positive way, you know,

Cath: that was going to be my next question. Surely all of this is your superpower. How does it being disabled? I mean, it must make you a better learning support teacher because you're actually, there's a whole other conversation and level of experience going on and how you encourage.

To keep going to, to find that resilience, but also to just have a crappy day, if they

Nicole: are, there's an authenticity to that. You know, my most ultimate goal when I walk into any learning environment that I have, or, or if it's someone else's room, I want to create that safe space. You know, Kath, sorry, who's got dyslexia.

I know you don't, but who's got dyslexia and has had a crap day in math and science and English to be able to come in. Even if it's for five minutes, sit down and be like, I need to chill or I can't do this or I don't get it. Or, you know, Ms. Brown doesn't like me because I didn't turn in my homework again, just to have that conversation because I'm coming.

Maybe I'm not dyslexic, but I know what it feels like to not be seen in that classroom for that, not look at you and go, okay, what am I going to change in my teaching strategy with this child? How am I going to get tasks to feel like she can be successful where she's at at that moment, whatever that home it is.

Cath: Yeah, it's the, it's the impact? Not so much. The issue itself is where your power is.

Nicole: one of the struggles is, you know, teachers are so focused on the end result. You know, we have to get there, we have to cover the material, which I certainly like appreciated and understand, but maybe the way you've done it for five, 10 years, doesn't work for this particular student because they're coming in with issues and baggage that we're not even aware of.

And maybe they're not even aware of, you know, and, and we're living in a world now where there's so many outside factors that. Taking control over how we feel and how we react. There was a lot to be said in how you create that safe space. Yeah. And so that's where that superpower of advocating for them is what I feel I do best, you know,

Cath: it's good. They're very lucky to have you.

Nicole: Thank you. And I'm very lucky to have them. It's a mutual, respectful relationship because I learned from them. And then I realized in my way of doing things that maybe I can rethink. A strategy or a technique, or just to give them space,

Cath: just validate how they're feeling that day.

Nicole: That's the most important. And then I can take on the battle with the teacher or the battle administrator or the battle with the parent. You know, once I have gained that respect from that student and I work with middle and high school and, you know, That's a very challenging age because your body's growing, your mind is growing.

You don't know where you stand and now we bring you in, oh, well, how do I identify? And I don't even know. And you know, my mom wants me to focus on school. My dad wants me to focus on this and I can't talk about this. And I can't talk about that. So, you know, no wonder we, as teachers are feeling like, oh, where do we, what are we doing?

Cath: Yeah. Yeah, absolutely. Yeah. I think amongst all of that is the external, like you say, with the parents, what they might want and then everything, the external pressures of society, there's so much of toxic positivity. I mean, I've heard people talk about, about autism or other neurodivergent things where people would say, oh yes, but there's all these positives and, and there are.

But also, it depends on who you are, your circumstance. And I know people who say that's actually really hurtful and offensive because their family member, their child has got severe autism. And actually the kind of positive thing, isn't quite the same for them as other people. And then you end up with this almost gaslighting virtue, signaling toxic positivity.

What do you want to share some views on that?

Nicole: It's so it's, it's painful. It's painful. It's so. How do we stop the gas lighting? And I think, I think the way we do that is we acknowledge where people are at and what a good day means or what success means or what games mean. You know, what's the ultimate goal for this family or for this person to experience, how do we get them there and how do we provide them with the resources and the services that they need to get there?

And how do we educate their family members or their friends around them to do. Acknowledged that everyone is different. Everyone has the same value. And what I may be consider important might not be the same as everybody else, but everyone should have equal opportunities to get there. Yeah. There's no excuse for it now.

Absolutely. If we say that we're an inclusive school, then let's be an inclusive school for all. With all. And if you don't have those people or systems in place or mindset in place, let's fix it and let's not play it.

Cath: So what would you say to, I mean, this is kind of you as a person, but also as a professional in your role, what would you say to a parent who might be struggling with their child who has a disability or they have higher expectations than the child is going to be able to deliver.

Nicole: First I would acknowledge the fact that I'm listening to their feelings, whatever those feelings are, whether it's denial or whether it's some other expectation. Cause I think that's really important because regardless of what they're saying, they have to feel the feels that they're feeling.

And then from that point, okay, now let's see. Let me show you the pre. Or the evidence that your son or your daughter is here, and this is what we can do as a school, to maybe meet some other expectations that maybe you haven't even thought of. And well, and some of the times the argument is, well, you know, we've waited for so long and our kids now at 16, and now we're being told that they have XYZ.

Well, okay. So now they're being told they have XYZ. How can we make the rest of their school life with us? The most successful, the most meaningful and how can we help you understand what that disability is and what it means for them, for your son or daughter, but also for you? How do you deal with that as a family?

How do you explain it? How do you still have expectations? Because you still should hold them accountable for stuff. You know, what's your child's passion, you know, what are they passionate about case in point, I have a wonderful student. She set to graduate in the next couple of months. I've been working with her since she was in middle school and the parents had expectations of her and rightfully so, and just recently, this young lady has emerged.

She's just blossomed and is become more confident. And she realized that. Quite artistic and really focused on environmental design and environmental issues. And now she's staying in Finland and she's going off to university. Yeah. Fantastic. Her parents were saying, thank you. I was like, well, no, thank you for the faith that you had in your child to come this far and the faith that you had in.

To support her and support you because she's found her passion and she's smiling.

Cath: Not about fixing or curing it it's about which can't happen anyway, but that kind of language is not helpful. It is about helping them find a path to their strengths and through to help them flourish

Nicole: and even, you know, finding that path, you know, it's just sticking to your, sticking to your mindset as that educator. Yeah. You know what, every time they come with. Oh, but what if I'm, what if I'm hearing you, what you're saying is you want, you know, Joe to become a doctor, but maybe he can be a different type of doctor. Maybe he can go to nursing school or he can still do things that would not necessarily require him to spend the next 10, 15 years at school.

Cath: If he's not able to function in that way, it's just not fair to the child. Like,

Nicole: and that's really hard. You know, but then also allowing the student or the child to begin to advocate for themselves to say, look, mom and dad, this is what I need, you know? And I think once they see progress, once they see that their son or daughter is happier going to school, then that begins to soften their sort of hard edges.

Cath: What I'm hearing you saying is that it's about thinking laterally and thinking outside of the box and. Completely out of a school context, but just thinking about globally mobile families and people who are moving around a lot and the spouse that hasn't got, the job that is actually creating their own lives and creating their own business or whatever they're doing and how it's those moments.

That are there like pinch points where you've actually got to look at who you are and what your skills are, and there's no failing, or we can't do this. We can't do that. It's like, how do we do what we want to do with the skills that we have, what what's going to make that work the best. So I might be loving everything to do with an outdoor environment in one country.

Yeah. My knowledge and experience relation to that. And you go to another country and it's completely different. It's like, okay, well, I love these things. How am I going to then transfer that to a new country? What does that mean? How can I identify those things? And I imagine it's the same with special education.

Nicole: It is a same thing but also acknowledging that failure does not necessarily mean defeat. Just a chance to try something different.

Cath: Yeah. I hate that word fail. I didn't, that's why I hesitated. I didn't want to use it.

Nicole: I don't like it either, but that's what we use, you know, we use success and failure, unfortunately.

So, you know, let's just say, how many attempts is it going to take you to be successful? What do you need?

Cath: That must be hard though, within a school system where it's school. So much of it is about success and failure and just. Yeah, like it's, everything's scored and marked and you've got to get to a certain point and how a kid fits in that.

Nicole: But it also acknowledging that we have to change how we teach in what we teach to suit the students that we have coming in. So if we have our high flyers sure. They can access. We, we followed the international baccalaureate curriculum. We know what the upper school level, there are kids that just want a high school diploma, which is just as valuable, which will get some justice far.

So let's create those opportunities rather than pigeonholing them, rather than putting them into a class based on their ability. Just put them in class and let them flourish. It is a challenge, but I'm hoping that with the emphasis on inclusion, the emphasis of teaching to identity and teaching to diversity within your classroom, that that's going to change for the better space for everybody to base for everybody, you can go, am I, am I seeing every single student?

Every single day to the best of my ability as a professional. And if I can't do it, do I have other people, other resources, other ways in which we can all see each other in the most positive way. Yeah. Because we want them to be able to go out and be whatever they need to be for the world to make it better for those that are coming after them.

Cath: Yeah, exactly. Whatever their disability. Yeah. It's also actually prevent them from being amazing at particular jobs and neuro divergent. Who's very focused on, on data or a particular skill or something. Absolutely amazing. And I would hate something like that, but I know that I know that's not my skill.

It's almost like to me, it's like a magnet where you're, you're mixing and matching you where you're trying to find those games where you put a shape in the whole, it's just like finding the one that matches that child and then they're away. Like, it's just absolutely.

Nicole: Well, I know that space. So that's part of why, you know, this whole identity thing for me, I'm going to keep on this journey.

Now. I want to find where it's going to take me and what else I can do to, to share, you know, what I've. Without, you know, minimizing it or maximizing it for anyone else.

Cath: It's visibility, isn't it? It's just there living your life because you never know who, who needs to see it and who needs to hear it. Yeah. What would you say to someone that is newly learning to manage their diagnosis is struggling.

Nicole: My best piece of advice is sit with how you're feeling right now. Sit with it, digest it, see where it takes you. Don't be, don't be afraid to get angry or to be sad, or to want to forget about it. Sit with your feelings, acknowledge them, and then take tiny steps forward and find those people that you trust.

And then move ahead. Don't shy away from, from what it is you're feeling because there's going to be people that are going to get. To where you need to be, even if you don't know where that is at this point, don't be afraid to be raw, be real cry, laugh, you know, talk to people. Don't talk to people, you know, meditate, draw whatever tool you need to express yourself.

If you can't use words until you're ready to say, okay, I want to learn what my disability is. I want to learn how I can. Do my best. Just, just be with your feelings, don't lose sight of who you are, no matter what gets thrown your way.

Cath: Yeah. Yeah. One thing I wanted to pick out of that particularly was also when you're ready, there's no pressure.

It's like it has to be in on your own terms, which must be very difficult to if you're a, a child and you're being kind of managed by parents shall we say in the school?

Nicole: Yeah. I mean, cause and find those people that will support you when that pressure gets too much for you to be on top of everything right away.

Yeah. Fantastic. Part of what I'm doing as a process of sort of allowing myself to identify as that I'm, I'm working on a project, which I'm really, really excited about. It kind of tells my story as a positive way to bring to life. My journey and it's, you know, it's a work in progress and I'm very lucky to be working with someone.

Cath: You are able to talk about it if you'd like to talk about it.

Nicole: So that's what I was trying to get to. So you can act all that out. I wanted to mention that I'm truly grateful that you're joining me on this journey of promoting something that that is a catharsis for me is an opening for. Yeah. You know, here I am, this is me.

This was my journey. Even though it's, it's written for, you know, young children there's, you know, never lose sight of who you are. Never be afraid to follow your dreams. And surround yourself with people who genuinely want the best for you and believe in you in those moments when you don't believe in yourself.

Cath: Yeah. We all need that, Gosh. So, yeah. No, it's my pleasure. I mean, for me, it's something, it's a, it's a meaningful project and it's that ability to illustrate what's in your heart is a huge privilege. It's really exciting. So I'm looking forward to getting stuck in

Nicole: me too. So look out world because the new, I don't know, do we call it, but do we call it a best seller when a seller is coming your way?

And I'm just, I'm super, super excited. And it just means a lot without me getting mushy. Cause I'm about ready to cry and I don't want to do that. Um, it means a lot to be heard and to be seen, you are seeing me in a way that is so beyond. Real. And so beyond my own expectations and it just speaks volumes and it just validates my journey that I've had over the past couple of years.

And I'm so eager and excited to have the chance to share it with someone else.

Cath: Yeah. And, and I think it's really positive for you because it also, it allows you to look back and realize how far you've come as well. Like it's even on your. Darker days or the difficult days, it's still, it's like a wonderful marker where you can actually realize how far you've come.

I look back and you look at your growth and you, and I think sometimes doing projects or. Even just this conversation, it makes you reflect on things in ways that you might not

Nicole: otherwise be possible. Yeah. I mean, cause like I told you, when we first started talking, this project had, I'd been sitting on it for awhile and it was only until I decided, well, you know what, no, this is going to happen.

And this is going to happen in the best way. I know how and with the best people around me, because. I have come a long way and I'm still have a way to go. I'm not stopping this isn't oh, well, you've identified yourself and you've put yourself out there. No, I'm, I'm, I'm here to stay.

Cath: There's a power that comes in. You being able to talk from a position of scars, not just wounds. And I'm not saying that there's no wounds because it's along with the lifelong process, all these things. But when you start to be able to. Heal some of those wounds and, and come to terms with things, the messaging and the way you talk will be very different as well.

Nicole: You know, it's not just the physical scars. I have those. I mean, you can see them, but I can now say, well, there was probably a reason for why I needed to have those scars. And there probably was a reason for me to have those emotional battle scars. Because they're part of me as much as maybe I would want someone to take that away from me.

Let me just embrace it and be like, I'm going to try to move on. Yeah.

Cath: Those emotional scars also there's a maturity of experience and wisdom that comes with that of living. Like all of us, whatever our things are like that, that lived experience that you can then help guide the children in your care on a daily basis and help them chart those experiences, which potentially are still going to be difficult.

But actually may just be that little bit less of an impact on them. Yeah. Actually with some foresight from you because of, you know, what it was like that you can help them through those wonderful.

Nicole: And at the same time, I'm still learning even through my experiences moving forward. Yeah. And I don't think I would be a teacher if I didn't.

Continue to be a lifelong learner.

Cath: Yeah. It's so interesting when you start to unpack it all and actually look at the emotional journey that is just your own journey. Let alone then what external environment has an impact on you and other people and then workplace and all of it. It's it becomes a particularly rich conversation.

Nicole: Thank you for this rich conversation. I'm sure I could probably talk for another hour.

Cath: Thank you. All right. I really appreciate it. I know from my early conversations with you, that it's massive having this conversation. It's all part of you being visible. So I really appreciate your openness to having a conversation and wanting to talk about it and be vulnerable because I know that that can be hard.

So, so thank you very much. I really appreciate it. And I know that for the listeners that it's, there's always something that comes into conversation that can help.

Nicole: Feel free to find me on LinkedIn, you know, all that stuff and ask me questions. Like, don't be afraid.

Cath: That's what I was going to ask you. How can people find you?

Nicole: My tag on Twitter is Nix Demos uh, look for Nicole Demos on LinkedIn. You'll find me. And then also. Um, on Facebook, if you see a lot of pictures of my dog, it's probably me. Um, and I work at the international school of Helsinki. So that's another way of finding me or through, um, sending you.

Cath: Fantastic.

Nicole: Feel free.... anybody reach out. Ask me any question. Personal professional. I'm not afraid to answer, and if I don't answer, just keep at me.

Cath: I'll put all those details of the show notes and people can find you. So thank you again so much. I really appreciate your time and good humor, but also your, your realness and just talk about what it's like.

You've been listening to drawn to a deeper story. Thanks for listening.

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