Have you ever wondered what it's like to live with a disability - or more than one? Thought about what it’s like being a kid with disabilities? A teen? What’s making friends like? How about dating? Trying to find employment? Fighting against a world constantly telling you that you can’t? Eight million people in Canada 8 million over age 15 - that's 27% of Canada’s population - live with some sort of disability. On this episode, you get to meet two of them, remarkable people who live with multiple disabilities. You'll hear their stories, perspectives, trials and triumphs, and be inspired by the beauty of building a life that truly fits who you are.
Have you ever wondered what it's like to live with a disability - or more than one? Thought about what it’s like being a kid with disabilities? A teen? What’s making friends like? How about dating? Trying to find employment? Fighting against a world constantly telling you that you can’t? Eight million people in Canada 8 million over age 15 - that's 27% of Canada’s population - live with some sort of disability. On this episode, you get to meet two of them, remarkable people who live with multiple disabilities. You'll hear their stories, perspectives, trials and triumphs, and be inspired by the beauty of building a life that truly fits who you are.
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Learn more about Realize Canada.
Thank you to our guests this episode for their expertise and generous sharing of their stories.
Realize Canada fosters positive change for people living with episodic disabilities.
Credits:
Writer, producer, host: Shaun Proulx
Audio and video editor: John Mackie
Graphic design: Alexandria Ditner
Special thanks to Tess Kern and Addison Brash for their valued assistance in making this episode happen.
Executive Producers: Roger Mussellman and Janet London for Realize Canada
The Realize Podcast is sponsored by the Government of Canada.
Episode 7 -What It's Like Living With Disability (Two Stories)
Shaun Proulx
Before we start, along with asking you to give this episode a five-star rating and review, which really helps other listeners find us, we want to point to the quick survey we have in the show notes. It's super fast to do and will really help us in creating content that's meaningful to you, the listener. Please check it out when you're done listening to this episode.
A couple of years ago, I witnessed something I've never forgotten. I was meeting a girlfriend of mine in Toronto's West End and had hopped on the subway downtown to go see her. When I got off the train, I received a text from my friend saying she was stuck in traffic, and so to pass some time, I sat down in the subway terminal to people watch.
A lady trying to control a screaming brat, a child, struggled and made her way outside. Two young people in head-to-toe goth gear made out against a dirty wall. A woman in her 50s stared into space.
Next, a man in a wheelchair passed me, heading towards the subway elevator nearby, presumably to take it down to the platform and catch his train. I watched as he approached the elevator doors, stopped, and then lost his mind. Fuck!
He was livid, red-faced, screaming, arms flailing, F-bomb after F-bomb. If you know from Toronto Transit, aka the TTC, the reason why he was so angry won't surprise you. The elevator wasn't working.
The man was apoplectic. A heavyset staffer approached him. I watched, hoping it wasn't to make matters worse by telling the man in the wheelchair to calm down.
Nothing worse than being told to calm down when you're not calm. The man saw he was with the TTC and immediately demanded to know how long the elevator was going to be down. The staffer was clueless.
Three weeks? It's the TTC, I wanted to interject. How am I supposed to get to where I need to go, the man raged.
The man in the wheelchair was so frustrated is too small a word, beaten down by this incident, as if running into hurdles, blocks, and barriers were a constant in his life, and this, this elevator situation on a sunny Saturday afternoon, was the last damn straw. I got it. I watched him wheel himself furiously out of the TTC station to, to what?
I didn't know. To an Uber that could accommodate his wheelchair? I know there are taxi services that can, but don't they need to be pre-booked?
Did the man just give up on going where he was going? Did he abandon plans he was looking forward to, or did he need to be somewhere urgently, and now, because the world he lives in does so little in the way of accommodation for him and others like him, he couldn't meet that need? You might think, yeah, but elevators do break down, crap happens, but for most people listening to this, we can take the stairs or the escalator, we have options in a case like this.
We live in a world tailored almost exclusively for us. Most people with disabilities don't have options. They've been excluded in one way or another.
8 million people over age 15, 27% of Canada's population, live with some sort of disability, according to the 2022 Canadian Survey on Disability. I so empathize with the guy in the wheelchair. Hurdles, blocks and barriers were a constant in his life.
I know this because they are in the lives of everyone who uses a wheelchair. Hurdles, blocks and barriers are in the lives of millions of people with disabilities. That day at the subway stop, I could imagine myself in a wheelchair.
I would be screaming all the time. That was the first time I ever truly put myself into the shoes of someone with a disability. This occurrence happened back when I was on the board of Realize Canada.
So, knowing that, you might think I might have put myself in a disabled person's place by then, but I honestly had not. I did board stuff while I was on the board where we all had roles and expertise, second to motion. But since joining Realize as the producer and host of the Realize podcast, being in the trenches as it were, I have put myself in the shoes of someone with a disability often.
When we covered relentless suicidal ideation in episode one, anxiety and depression from loneliness in episode two, crippling arthritis in episode three, I really grew to understand how very difficult things most of us take for granted can be for others. You can't help it at Realize. Seeing the very good work your colleagues do or producing this podcast, you learn a lot.
So, riddle me this. Assuming you aren't living with a disability, have you ever imagined being disabled? Thought about what it's like to be a kid with disabilities, a teen, what making friends is like?
How about dating? Having to learn how to advocate for yourself on a constant day-by-day basis, trying to find employment, fighting against a world constantly telling you you can't. Well, right now is your chance to step inside the world of not one, but two people, each living with several disabilities.
Today, you're going to hear the stories from two remarkable people, people you're going to like right away, as I did. Two people whose life journeys as people living with disabilities might just boggle your mind and give you an appreciation for the resiliency and tenacity and strength of those with disabilities, and you might very well, as I am, be inspired by them. I'm ShaunProulx, and this is the Realize podcast, nurturing potential inclusion and belonging, the podcast dedicated to exploring the strength, adaptability, and determination of individuals facing the ever-changing landscape of episodic disabilities.
So, for the past five years, Realize Canada has held an extremely successful event, our National Summit on Episodic Disabilities and Employment. This year, a few days later and for the first time ever, Realize also held a Youth Day version of the Episodic Disability and Employment Summit. Episodic disability experts, leaders, and researchers in the community on youth issues shared fascinating information and emotional stories, and panels on community, disability in the arts, and navigating employment with an episodic disability took place.
It was an informative day, but also a very moving one, with two standout presenters sharing their stories. Let me introduce you to the first, Julie Emeade, a passionate advocate, graduate student, and someone who's faced more medical challenges before age 21 than most do in a lifetime. Diagnosed with general dystonia as a child, Julie later underwent deep brain stimulation surgery, yet still found the strength to compete college with honours and give the good news I'll let her share in a moment.
In our conversation, Julie gets candid about the barriers she's faced in education, employment, and dating, and how she's reshaping narratives around disability, self-worth, and success. I really want to educate employers in society, Julie says, about how it's not only hurting the disability community not to be accessible, but hurting our society as a whole. From fighting stigma to advocating for universal design, from being underestimated to becoming unstoppable, this conversation will leave you moved, inspired, and rethinking what it means to truly belong.
Julie Emeid
My name is Julie. I'm 32 years old. When I was born, I was fine.And then at 10 days old, I had the doctor find a hole in my heart that normally closes. So mine didn't close. Um, so at six months old, I had heart surgery to close the hole in my heart.And then at 10 years old, I started to limp and I was diagnosed with generaliseddystonia. By 14 years old, I started having my involuntary movements and they got progressively worse until I got to grade 12. And by the time I turned 21, I underwent deep brain stimulation surgery where there's two electrodes in my brain and a battery in my chest and that's controlling my movements.
Shaun Proulx
That is an awful lot for a young person to go through. Talk to us a little bit about that experience, what it was like.
Julie Emeid
So for me, education was so important. Um, after high school, I started in college. However, it was very difficult to sit still due to my dystonia.And now to take time off for my brain surgery, I was very excited. My parents, however, were terrified. I was 21 an adult.Ultimately, it was my decision and I'm beyond thankful that I had the surgery because I'm not tremoring. And I finished college with honors in social services. I am currently in my last month at Toronto Metropolitan.
Shaun Proulx
And you got some good news recently.
Julie Emeid
Yes. So I will be graduating from my bachelor's in June, and I got accepted into York for the Masters of Social Work.So your never to old to keep learning. Thank you.
Shaun Proulx
You're welcome. Congratulations. Um, what does going through these kinds of experiences, what does that do to you in terms of your character, right?The really rough experiences, you're a young person going through them. It made you what?
Julie Emeid
Um, so my dad often says, you're strong, you're tough. And I feel like my character is to be very stubborn and stay in school. If I get a no, I prove people wrong.And it's really both my character and my confidence to go to university and make amazing friends. I'm so grateful for the friendships I made, the networking, the jobs I've gotten, just overall great experience.
Shaun Proulx
Now, does the rest of the world that you navigate through, do they see you as tough and strong?
Julie Emeid
I think at first they see me as young and fragile. A lot of people assume I'm a lot younger than what I am. Again, 32, and I take it as a compliment. It's amazing to look young. However, once they get to know me, they notice I'm a hard worker.I'm dedicated and passionate about disability and mental health awareness policy reform.
Shaun Proulx
We did a pre-interview and you talked about the challenges that you faced in terms of employment and getting work as a disabled person. Can you talk to us a little bit about that?
Julie Emeid
When I was younger, I really internalized not gaining them from it as a problem within me. Oh, I'm disabled. Oh, I'm not smart enough.However, going to college, going to university, about to get my master's in September, really helped build my confidence in my academics. And now my lens is shifting from I'm a liability to I'm an asset.
Shaun Proulx
In episode five of this podcast, I was in Victoria, BC at an Indigenous disability and wellness gathering. And I learned there that many nations see disability as a gift. The idea of disability is a colonial construct.I wonder what you say to that. Do you see disability as a gift?
Julie Emeid
My mom would definitely say that.
Shaun Proulx
Why would she say that?
Julie Emeid
I think she's very spiritual. She feels like disabled people are important for God when we die. For me, I find that yes, we are a gift, but everyone's a gift.We all have different perspectives. It's important to hear people out.
Shaun Proulx
Tell us about a time when you weren't heard out, when your perspectives weren't acknowledged.
Julie Emeid
Definitely, if I can narrow it down.
Shaun Proulx
I was about to say, I could see the answer coming out of your mouth right away as soon as I asked that question.
Julie Emeid
Yeah. So, I would definitely say going back to high school when I was streamlined into taking essential courses, instead of applied or academic. And, regardless of me getting A's, I remained in the essential courses and was directed towards going to a vocational program.
So, I really felt like even though my hard work of getting A's was evident, no one was listening to me when I said I would go to college, except for my loved ones. And if I didn't have that support, I could have ended up down a different path.
Shaun Proulx
What do you think that is? Why do you think people do ignore and discount the perspectives and the abilities of a disabled person? Was it fear?
Julie Emeid
I think it's a lot of stigma and ignorance. I've had a lot of individuals approach me with very ignorant comments. For example, I use a wheelchair and a cane.There has been times where I was using my wheelchair and I got up and a gentleman accused me of faking my disability. However, afterwards, I-
Shaun Proulx
Not really a gentleman.
Julie Emeid
No, no, not at all.But I did get very shocked and I showed him how I walk with a limp and he apologized. And that's why I'm so motivated and passionate to educate people to eradicate the stigma of disability.
Shaun Proulx
Talk to us a little bit more about stigma and what stigmas you face. You just described an incident with a gentleman calling you a liar. What kind of other stigmas have you faced?
Julie Emeid
I think a lot of it has to do with in the workplace for me. Every time I received a placement on a job, I noticed employers were underestimating my physical and cognitive abilities. For example, I did a placement where I was given a fake job of writing letters and giving it to the clients, A, B, C, to kind of fake check.And I was very bored, to be honest. And I advocated for myself to work with the clients more one-on-one. And once I did that, people saw, oh, she's actually capable of doing other tasks.So it's a-
Shaun Proulx
That must drive you nuts. That must just drive you absolutely nuts that you put through these challenges and tests for people to finally believe that you're capable.
Julie Emeid
Definitely. I think, again, that's why I'm a workaholic. But yeah, I love to work.I've seen my dad working my whole life owning businesses. And, just, I always first noticed I had to prove myself. In high school, I got A's.In college, I got A's. In university, I got A's. But when I go get a job interview and they say, you're not qualified, there's a disconnect between my CV and what they're saying.I'm clearly qualified. What else is going on there?
Shaun Proulx
It seems to me that people don't want to bother hiring people with disabilities because they don't want to have to deal. Is it as simple as that?
Julie Emeid
I really think it's a question of accessibility rather than accommodations. If the organization is already accessible, there's less need for individual accommodations. And I really like this on this concept of universal design.For example, the cut-curb was designed for wheelchair users such as myself. However, everyone uses it from parents with strollers, people with carts, people with luggages.
Shaun Proulx
You're talking about the way a sidewalk is no longer raised, but slopes down and meets the street. That's what you mean, right? And so it was made for people with wheelchairs, but obviously someone on a bike can use it.Someone with, as you said, a stroller with babies in it, people with luggage. What other kinds of universal accommodations do you know about?
Julie Emeid
So I watch a YouTuber named Molly Burke. She's a blind YouTuber, very impactful. And she's where I learned about universal design.And I was aware that texting was made for people that cannot hear, so they could text. However, now texting has become the norm.
Shaun Proulx
It's so fascinating. What accommodations do you ask for in the workplace? And have you always received them?
Julie Emeid
So for me personally, other than ramps and elevators, which should be standard, really the major accommodations I need, which again, universal design, if there is an elevator, if there are ramps, I wouldn't require that accommodation. But truthfully, I do get worried about disclosing my disabilities during an interview due to the fear of discrimination. And although I do have some invisible disabilities, such as anxiety and panic disorder, I can hide that, but I cannot hide using a wheelchair or a cane.So that's why I really really, I really want to shift the narrative towards seeing disability as a deficit to seeing disability as an asset to the organization. So now if I don't get a job, I don't get as upset because I know I'm qualified. I know I'm intelligent.They lost an amazing employee.
Shaun Proulx
When you were talking about elevators, it reminded me of something I saw once. I was at a subway stop and the elevator was down and a man came in and he was in a wheelchair. And it meant for him that he couldn't go where he wanted to go.And he was like, livid, screaming. I think his frustration made me feel really bad for him because I could go where I was going. He could not.
How do you manage that? How do you get around? Because the world isn't cooperative for someone in a wheelchair, obviously.
Julie Emeid
So what I find interesting is when I'm out with friends, they actually get more angry that the world is not accessible. I'm so used to that that I've adapted. So if an elevator is down, I think, okay, what buses are running?How can I get to my destination? So that's worrisome because I've adapted to the normalization that the world isn't made for me. And that's why within my social work practice, I really want to educate employers and society about how this is not only hurting the disability community to be not accessible, but hurting our society as a whole.
And just to add on that, anyone can become a part of the disability community, with old age, with an accident.
Shaun Proulx
That's what one of the speakers here at the Youth Summit said this morning, was that everybody becomes disabled at some point through aging, like if you live a long life, something's going to happen to you. We talked about your work life, which meant if we talked about your personal life. So how hard is it to get a date?Are you single? Are you spoken for?
Julie Emeid
So I am single. I'm 32. But yeah, dating has been another obstacle, struggle, again, due to stigma.I've had a lot of fun interactions online. For example, in my profile, I wrote that I walk with a limp. And an individual, he asked me what happened.And I said shark bite, and he believed me.
Shaun Proulx
So you're fucking with everybody.
Julie Emeid
Hey, I've come to the realization that if a man is gonna judge me for a disability that I don't have that much control over and not look at me as a whole, then next.
Shaun Proulx
Next. What about friendships? And you said you've got a lot of great friends.
Were they easy to make? Or do you face stigma? Do people, you know, ignore you or discount you when you could be their next best friend?
Julie Emeid
So in my younger years, in my 20s, I had a lot of trial and error with finding friends, a lot of people saw me as the tokenistic, disabled friend. However, being 32, being in university, I really feel like I've grown as a person. And now I have amazing friends.I'm hoping to convince my dad to have a grad party for all of us in the backyard.
Shaun Proulx
Dad, let her have a party.
Julie Emeid
Hopefully, because I made so many friends in my university, so much support.
Shaun Proulx
What do you want the world to know about you, who you are as it relates to disability?
Julie Emeid
So, I want them to know that I don't give up. My parents, they raised me as a quitter. In fact, my mom was told that if I survived, there would be a vegetable.
And this vegetable got into York University. So I want other disabled people to know that if someone is rude to you, think of it as they are uneducated about disability and it's up to you whether or not you want to share your story or not. You don't have to.
So, I personally like to educate people and I don't mind sharing my story. But I really want to change how society views disability and that includes mental health issues.
Shaun Proulx
Well, thank you so much for sharing so much of yourself. You really are a light. And I've loved talking to you, both the pre-interview that we had, that long chat we had, and right now.
Thank you so much, Julie.
Julie Emeid
Thank you for having me on the podcast, my first podcast. Very exciting.
Shaun Proulx
You said you always wanted to be on a podcast.
Julie Emeid
Check. Masters check.
Shaun Proulx
Masters check. Yeah.
Julie is proof that grit, humor, and heart can get you through the toughest circumstances and right into the spaces you were told you didn't belong.
From being labeled and sidelined in school to rising above stigma in the workplace and beyond, Julie reminds us that disability is not a deficit. It is a perspective, a strength, and a story worth hearing. Julie, thank you for your courage, your candor, and for letting the Realize podcast be your first ever podcast experience.
We're honored to be on your bucket list. And hey, to Julie's dad, throw that grad party. She's earned it.
And we'll be right back.
Mental health, arthritis, some cancers, HIV, long COVID. These are just some of the countless examples of episodic disabilities. Episodic disabilities are chronic health conditions characterized by fluctuating degrees of illness and wellness, and they impact over two million people in Canada.
That's why there's Realize. For over 25 years, Realize has been fostering positive change for people living with HIV and other episodic disabilities. For more information about us, visit realizecanada.org.
Shaun Proulx
Welcome back. Now we're sitting down with a second panelist from Realize's Youth Day, the remarkable LyssaClare, an artist, advocate, and deep thinker living with a complex mix of disabilities, including physical conditions and mental health challenges like OCD, PTSD, ADHD, and more.
In this raw and vulnerable conversation, Lyssa shares how they've navigated a world that often isn't built for bodies and brains like theirs, from the shame and isolation of childhood to the burnout tipping point that changed everything to the powerful decision to become their own ally. They open up about disability, identity, art, love, community, and the long, often lonely, but deeply transformative journey of self-acceptance. This is a conversation about pain, yes, but more than that, it is about resilience, reclamation, and the beauty of building a life that truly fits who you are.
Lyssa Clare
My name is Lyssa Clare. I am 30 years old, and I live with some episodic disabilities, some learning disabilities, and some physical disabilities. And they would be anxiety, depression, OCD, ADHD, which is autism and ADHD together, as well as PTSD, and learning disabilities like dyslexia.And I've had brain damage in the past, so also dealing with the aftermath of that, and physical disabilities. So I have, it's called torso coalition in both my feet. And it's in the bone, so it's really hard for me to be mobile, and it's something that you're born with, and it just kind of progresses throughout life.So I'm also maneuvering life with that too.
Shaun Proulx
It's a lot to live with.
Lyssa Clare
It's a lot to live with. There's a lot going on in my body. Yeah, yeah, yeah.
Shaun Proulx
So how do you manage it?
Lyssa Clare
Oh goodness, how do I manage it? I feel like that is definitely an ever going process. I did not manage it well as a kid.
I think, well, I didn't know a lot what was going on. And unfortunately, a lot of the time, when you don't know what's going on, or you don't know how to advocate for yourself, or you don't even have the words, a lot of shame gets put on you. And a lot of people assume things for you when you're still just trying to figure it out.
And I didn't do well with shame, and I isolated, and I put it on myself. And I think that manifested in some of the start of my depression also. Into adulthood, learning as much as I possibly could about what my disabilities were, how they affected me, how they affect how I exist in this world, has helped me be able to manage it.I'm still very much figuring it out. I feel that will be an ongoing process for the rest of my life. But I do feel like I'm in a place where I'm able to be my own ally more.And I truly think being able to do that inner work has helped me be able to manage all that's going on, because it's hard. It's hard with one of the things, but to have so many different things going on in your body in a world that is not really set up for it, and in a society that doesn't really accept it, or have space for it is really hard and hard to go into the world with that. But I think it also just gives you a very individual perspective that I wouldn't change for the world.
So I'm also very grateful for that.
Shaun Proulx
Tell me more about that.
Lyssa Clare
I wouldn't be who I am without all the stuff that my brain and my body goes through. I don't think I would be able to communicate the same things through art or through writing.
Shaun Proulx
So tell me more than about navigating the world. Let's start with the workplace.
Lyssa Clare
Navigating the workplace. Yeah, work, the workplace and the workforce has never been easy for me from a very young age. I was starting with school, obviously.I went through high school and college, and it was very rough and very hard. And in my second year in college, I had to be pulled out of school because my mental health was doing not well at all. And I didn't know at the time, but my physical disabilities were getting a lot worse, and it was taking a very big toll on my health.
So I had a doctor pull me out of school, and that was terrifying. I didn't want to. I know I needed to.I know that my body was starting to give up, but I was so scared to not have the credits or not have the things behind my name and not be able to be given the same opportunities or be able to be hired because you need all these things to be hired at a lot of places. And there's just, yeah, there's a lot of shame in, there's a lot of shame in that. And there is still.And I think,
Shaun Proulx
I can imagine there's a lot of why me?
Lyssa Clare
Yeah, yeah. Yes.Yeah, there is. Yeah, there's a lot of why me. So a lot of why me and also like, I don't also want this to happen to anyone else and maneuvering the world seeing not only just yourself, but the community around you or friends or strangers also go through such bias and prejudice as a disabled person is heartbreaking and hard.And like, no wonder we come together in community because sometimes we only really get what that feels like and the opportunities that are taken from us or not even on the table in the first place. Yeah, there is a lot of why me? And I think that was oddly not a thing right now.I think there's a lot of acceptance that I've been able to do. But at an early age, it was a why me without even knowing what was going on and a lot of harshness of myself towards my own brain because I couldn't keep up or I wasn't doing everything that everyone else is doing or I was behind my peers. I wasn't reaching the same goals that my peers were in the same amount of time.
And that is isolating and scary and heartbreaking and lonely and so lonely. And it's so lonely and that doesn't help at all. That doesn't help with the depression or the anxiety.I think it absolutely heightens things and it makes you feel like it's all you. There's a lot Yeah, I would say not only just a why me, but is it my fault? Did I do something wrong?Did I not go to enough appointments? Did I not get the right health care? Did I not work hard enough on this or treat my body well?It was a lot of my self-shame of what did I do? What did I do to make this happen to me or have this happen to me or why can't I keep up? And that is awful.
That is an awful place to be and it was a really hard thing to come out of. And I still think I have that sometimes, but yeah, that's a very painful experience and it is so isolating. Even with other people with disabilities, you still go through your own individual experience and it is scary and hard and isolating.Yeah.
Shaun Proulx
What about your personal life?
Lyssa Clare
Personal life in what way?
Shaun Proulx
Well, making friends, creating relationships, you know, intimate relationships. What's the effect this has had on those?
Lyssa Clare
Making friends was hard. Making friends still feels hard. Relationships are hard.Intimate relationships were hard. I think a lot of that had to do again with not having the education enough about what it is that I was going through, what was going on or asking for help from healthcare professionals and them not knowing the answers.
Shaun Proulx
You're in a different place now. What was the tipping point?
Lyssa Clare
I think there was, I'm not sure if there was a particular time, but I know there was a tipping. No, actually, yeah, I would say when the pandemic really started, there was a tipping point of I have to figure out how to be my own ally or I'm going to die. And that sounds awful and harsh, but it like burnout can absolutely go to the point of your body just giving up.And my mental health was really bad and my physical health was really bad. And I was trying to keep up in ways that were not aligned with me and were not suiting me because it was what everyone else was doing and what I was watching everyone else doing. I had to figure out how to be my own ally and I had to, and I had been trying to do that for years, but still trying to keep myself at this very much from ego place, but trying to keep myself at this perfectionist place.Because I would say that a lot of people with disabilities have a hard time feeling like they have to be perfect all the time because when you are seen as less than you have to do more to be seen.
Shaun Proulx
It's a big burden.
Lyssa Clare
It is a big burden and not one that we should have to go through at all. I have had a lot of experiences with people, especially in hiring where one of the questions that they ask when I go into interview is, can you prove your competitive edge? And it's like, why do I have to prove I'm here?I've gone through an interview process. I'm a human being trying to do a job like everyone else. And you're only asking disabled people this and that, why do we have to go above and beyond to be able to have the same access or opportunities that those other people?And that's not fair. And it creates a really weird mindset, both I think for the other side and for ourselves. Yeah.And that's been very hard.
Shaun Proulx
What do you know about who you are, who you really are now through living through this, coming out to the side that you're on now?
Lyssa Clare
I really like who I am now, which is very interesting because I probably wouldn't have said that a while ago. I like who I am. I think in becoming my own ally, I discovered my needs.I discovered a lot more of who I am, a lot more of what I could do when I actually set the world up for myself instead of needing to follow everyone else's footsteps. I saw how I could project myself forward into things that I wanted to. I saw how I was able to show up for my people and myself.I saw the challenges that were coming up and how I was able to address them and the growth that I had worked on and being able to see that grow throughout the years and being able to see the outcome of that has been a really beautiful and humbling experience. And yeah, I think again, in becoming my own ally, I had to become my own friend and I had to learn how to, this world is so harsh to you already and you don't need that harshness to be coming from inside of yourself. At the end of the day, it is just you and yourself.And I think I want to always come from a place of love and deep care and I have to be able to do that for myself too. And that took a long time, but it was so necessary. And I think that is one of the loveliest things about me.And it is something I really, I'm glad that I continued to go through that journey of.
Shaun Proulx
Someone's listening to this right now and they're relating to the hot mess of what you were, who you were, what you were experiencing. You say what to them?
Lyssa Clare
Don't, this is going to sound cheesy. Don't give up on yourself. Do not give up on yourself.This process is hard. This process is long. This process is ongoing and don't give up on yourself.You are worthy of being able to exist in this world exactly as you are. This is like not even without job opportunities or like being where your peers at. You just deserve to exist in this world as you are and exactly as you want.And you, yeah, you deserve a place in this world. You deserve to take up space and that will take time and that's okay. And you are allowed that time and you deserve that time and oh, I'm going to get emotional.
Yeah, it's, I, you deserve that love from yourself and from the people that you choose to have around you and keep going forward with what you need. Keep asking for help. Keep advocating for yourself.Keep learning yourself. Keep being your own friend and don't give up on yourself because you are worth that. You are so worth that.
Shaun Proulx
Yeah. Has disability been a gift to you in any way?
Lyssa Clare
Yeah. Yeah. I, I think I might've mentioned this earlier, but I, um, I think there's a very particular perspective that, um, I am able to hold because I live in this world with disabilities and I world, uh, lived in this world with disabilities from a very early age also.Um, and I think that allows me to be able to do what I do in the arts and be able to do what I do and how I show up for myself and for others. Um, there's just a, there's just a whole other world behind the scenes of people when you're not trying to fake it and you're not trying to, um, be professional all the time or be on all the time or be linear all the time. Cause that's not actually a sustainable thing.Um, I think it is a gift. I think it allows me to be able to see people differently. I think it allows me to be able to see myself differently.I think it allows for so much expansiveness and openness and, um, opportunities in, again, not just like jobs, but like in life and in love and in, and in like all the, all the fluffy lovely head things. Um, yeah, I, yeah, there are, it's hard. It is hard every day.And I wake up every day in pain and, and, and wishing sometimes the outcome was different, but I wouldn't change it for the world. I don't think I would be who I am without it. And I really like who I am and I've worked hard to like who I am.And I think who I am is important in this world. And I think I have something to say as well as every other individual. I think there is only something that you are able to bring to this world that comes from you and whatever that is, needs to be shared because we all need that we are not all the same.And that's exactly how it should be. I think living in a world with so many different perspectives and so many different narratives and beautiful minds is, is just what it is to be human. And it is one of the most beautiful things.And I appreciate the disabilities for giving me the space and time to be able to reflect on that and to hold that. And, um, and it also is the, the, the communities that I found in that has also been so beautiful. And I am grateful for that too, because we really hold each other.And I think, again, that is just one of the most human things in this world is to be able to hold yourself and hold each other.
Shaun Proulx
Tell us about art and its role in your life and its intersection with disability.
Lyssa Clare
I've always loved art. I've loved art from a very early age. It was a way of communication for me.It was a way of being able to see the world. Um, and when I was around, uh, seven years old, I was in an accident and I had, um, brain damage, the left side of my brain. Um, so things that were easy for me, like math and spelling and mapping and some memory stuff, uh, just vanished and I had to relearn a lot of things.And there was a lot of stuff that didn't come back. Um, and that is hard and it is still hard and it still affects me every day. Um, and in that, um, I moved towards art because it was something that was still there.It was something that I was still able to access. It was something that I was still able to communicate through. Um, it was just so much a part of me and, and I wanted to continue to, um, move that forward into life.Um, and it's hard. It is, art does not give good benefits. Art is a very hard thing to do sustainably.Um, especially when you're creative, right? Like things are not linear. Um, but it is everything.It is, it is, it is a way of connection. It is universal. It is, um, I keep saying this, but such a like important way to communicate for me, because as you can tell, words are sometimes hard.So being able to communicate through my art is, is how I am able to also like be in this world and exist in this world.
Shaun Proulx
I imagine it's cathartic as well.
Lyssa Clare
Absolutely. It absolutely is. And, and, and I, um, something I was talking about with someone earlier, it's, it was both a choice and not a choice.I think the way that, um, art is so connected into me, that wasn't a choice. And also the choice was, I go into the arts because that is the thing that I'm able to hold. I can't be an accountant.I can't be like a spell.
Shaun Proulx
Why would you want to be an accountant? No offense to the accountants listening to this, but why, why?
Lyssa Clare
Numbers are pretty, but like too many, too many. No, but it was, it was like also a choice because it, I, yeah, had to, I had to go that direction. I had to be able to, um, figure out a life for myself to be able to pay rent and to have groceries and going into the arts allowed me, again, not amazingly all the time, but allowed me to do that because it also just gave me my, um, oh my goodness, what's it called?It gave me space to be able to exist as I am. It gave me my autonomy. It gave me, um, that openness and expansiveness that I feel would be sometimes crushed in other places.Um, and yeah, it is. Yeah.
Shaun Proulx
What do you say to someone listening to this, who is disabled, who wants to be where you are now?
Lyssa Clare
Hmm.Um.
Shaun Proulx
Because it seems to me like you are happy relatively. Um, it seems to me that you have a level of confidence, uh, and that you like yourself and a lot of people disabled are not, would love those things. What do you say?
Lyssa Clare
Um, that is also an ongoing process. There are going to be a lot of days where that is not the reality. There are going to be not even just days.There are sometimes in a day where I like myself in the morning. And then by the end of the day, I'm exhausted. And I'm like, I'm too much for myself.Um, but we are in this world for a short time and we deserve kindness from ourselves and from others. And we deserve a place at the table, wherever that is, wherever we want to be. And trust yourself.And I know that's so hard. Trust yourself, trust yourself to be able to show up in the ways that you need to trust yourself and what you need, trust yourself in what you don't need.
Shaun Proulx
What's your fondest wish for yourself?
Lyssa Clare
Fondest wish for myself. Ooh, to not give up my myself either. I think, yeah, to not give up on myself either.And to, to continue it is to continue in what it is that I need to do and to be ever growing. I, I think it is such a gift to have opportunities to continue to learn and to grow in this world. And I would love that to continue for as long as possible.I, yeah, I, you know.
Shaun Proulx
Finish this sentence - Disability is…
Lyssa Clare
Disability is. Oh, disability is. There's so many words coming to my head.
Disability is expansive. Disability is real. Disability is a part of everybody.
Disability is not a burden. Disability is honest. Disability is allowed to have space for disability is love.
Shaun Proulx
You're such a light. It's been such a pleasure to talk to you today.
Lyssa Clare
Thank you so much for everything. I appreciate your empathy and your kindness and having patience with me as I also maneuver my first podcast and talking out loud.
Shaun Proulx
You did it. You did great.
Lyssa Clare
Thank you so much.
Shaun Proulx
And that was Lyssa Clare and what a journey they shared with us. If you've ever felt like the world wasn't made for you, if you've ever been made to feel less than because how your body or mind moves through the world, I hope this conversation reminded you you're not alone and that your existence exactly as it is, is worthy of space, love, and community. Lyssa reminds us that being your own ally isn't just survival.
It's a radical act of self-love and their story is a powerful testament to what's possible when we stop trying to fit into the world and instead shape the world around what we need. Until next time, take good care of yourself and each other.
Lyssa Clare
Yeah, it has been lovely meeting you today and I and I've loved listening to all your previous podcasts and getting a chance to just be with you and talk with you has is one of the best parts of my day and I really appreciate it.
Shaun Proulx
You're authentic.
Lyssa Clare
I worry sometimes as I can also with people coming out and say I just want to be able to finish a thought sometimes and hope that what I'm saying is accessible for everybody to understand.
Shaun Proulx
I think sometimes we tell ourselves something about ourselves and then we believe it to be true.
Lyssa Clare
Oh yes.
Shaun Proulx
And I think like on stage when you were doing the panel on art and disability you said you need people to be patient with your communication and stuff like that.
Lyssa Clare
Yeah.
Shaun Proulx
Yet I'm sitting there for my vantage point, my objective vantage point not knowing you.
Thinking this is an extremely articulate person.
Lyssa Clare
Oh thank you.
Shaun Proulx
Who is making 100% sense.
Lyssa Clare
Oh.
Shaun Proulx
And her thoughts are expansive and smart. And value-added.
Lyssa Clare
Thank you.
Shaun Proulx
And so maybe you don't want to tell that story about yourself too much more.
Lyssa Clare
You know what, that's fair.
Shaun Proulx
About me being a poor communicator.
Lyssa Clare
I like that.
Shaun Proulx
Because you've sat here and you've been excellent.
Lyssa Clare
Thank you. Yeah. I really appreciate that.No that's a, sometimes it is a struggle to see.
Shaun Proulx
Maybe you once were but you ain't anymore.
Lyssa Clare
I've grown through that.That's nice to hear.
Shaun Proulx
So dump that story.
Lyssa Clare
Thank you. I appreciate that check-in. That is, that is, again and that's why I love community for this because it is sometimes really hard to see yourself when you have this version of yourself that you're in and trying to work towards and go through.So I also appreciate that check-in because that is hard. It is hard to, especially when you're in your head and have anxiety and stuff. And I really appreciate that.Thank you.
It has been amazing talking to you and I appreciate both you in person and also getting to listen to you on the podcast. It is, it has been a gift to be able to have that.
So thank you so much for everything. Thank you.
Shaun Proulx
The pleasure is mine.
Lyssa Clare
Oh great.
Shaun Proulx
I'm lucky.
Lyssa Clare
So nice to meet you. Are you a hugger? Can I hug you?Is that okay?
Amazing. Thank you so much for everything.
Shaun Proulx
You're so welcome.
Lyssa Clare
Also you definitely have my favorite shirt of the day. You walk in I'm like, yeah, you're gonna be my new friend.Have such a good rest of your day. See you later.
Shaun Proulx
Thank you for joining us on the Realize podcast, nurturing potential inclusion and belonging, a production of Realize Canada. Please help us by taking our fast three-question survey found in the episode notes. Thank you to our guests this episode for their expertise and generous sharing of their stories.
Realize Canada fosters positive change for people living with episodic disabilities.
Writer, producer, and host, ShaunProulx. Audio and video editor, John Mackie.
Graphic design, Alexandria Ditner. Executive producers, Roger Musselman and Janet London for Realize Canada. The Realize podcast is sponsored by the government of Canada.
For more information on Realize Canada, visit realizecanada.org and follow Realize on X, formerly Twitter, Instagram, Facebook, and YouTube at HIV and Rehab. Be sure to subscribe and share this podcast with your friends, especially those with episodic disabilities on your socials. And please take a few seconds to give us a five-star review on Apple and Spotify.
It really helps other listeners find this podcast. Thanks again for joining us. Until next time, what do you Realize?
Hi, I'm Dana.
Patricia.
Hello, I'm Andre.
And I realize.
And I realize.
And I realize.
That love is love.
We are more fortunate than we know.
Good acts don't have to be big acts.