This episode contains discussions about sexual abuse, residential schools, and other sensitive topics. Audience discretion is advised. In this episode we take you to the 2024 Indigenous Disabilities and Wellness Gathering in Victoria, British Colombia, Canada. This event brought together voices and stories from across Indigenous communities to highlight resilience, cultural identity, and the ongoing fight for accessibility and healing. It also shone a spotlight on the idea that disability is a colonial construct. Host Shaun Proulx sat down with four Indigenous people, including an actor with cerebral palsy who faced unspeakable trauma in a residential school; a woman who is legally blind navigating systemic and cultural barriers; a Realize colleague who has borderline personality disorder, confronting stigma and finding her voice, and a mother’s fight for her son’s right to cultural and spiritual healing in a western hospital setting.
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Credits:
Writer, producer, host: Shaun Proulx
Audio and video editor: John Mackie
Graphic design: Alexandria Ditner
Special thanks to Julia McEathron and Alex Pennell for their great assistance in making this episode happen.
Executive Producers: Roger Mussellman and Janet London for Realize Canada
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Episode 5 - Indigenous Disability and Wellness
Shaun Proulx
This episode contains discussions about sexual abuse, residential schools, and other sensitive topics. Audience discretion is advised. Before we start, along with asking you to give this episode a five-star rating and review, it really helps people 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.
Stephen Lytton
The creators put me into this situation for a reason. And I'm going to go along for the ride. I don't see myself as disabled, but society deems it different.But when you look at today's society and its impact and what it's going through, all the situations we see in our communities, our society is more crippled than we are. We're disabled, but we're not crippled.
Sheila Grieve
If you look at the Cree word for autism, if you were to translate it, it actually means he, she, they think differently. That's all it means. It's a person who thinks differently.
AlexandraPennell
And he said, you know, have you ever looked at what you have as a superpower? And he said, because of all of the emotions that you can feel and how deeply, deeply connected it is to your body, your mind, everything, you can now understand, you know, majority of people at a level that not everybody can.
Lindsay Clifton
When I heard about it, I called the person who was leading this and I'm just like, this is not right. This is a colonial system that you're perpetuating. And she listened, she reflected, she stopped it.And then, you know, when moving forward, she's like, how can we do better?
Sue Sterling-Bur
Indigenous worldview matters and is important for the overall health and well-being of Indigenous people. That we, our views and our values don't align with Western societal views all the time.
Shaun Proulx
I'm Shaun Proulx. Welcome to 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. Today's episode takes us to Victoria, BC and the 2024 Indigenous disabilities and wellness gathering.
This event brought together voices and stories from across Indigenous communities to highlight resilience, cultural identity, and the ongoing fight for accessibility and healing. It also shone a spotlight on an idea we don't talk enough about, that disability is a colonial construct. In this episode, you'll hear from an Indigenous actor with cerebral palsy who faced unspeakable trauma in a residential school, a woman who is legally blind navigating systemic and cultural barriers, my Realize colleague who has BPD, borderline personality disorder, confronting stigma and finding her voice, and a mother's fight for her son's right to cultural and spiritual healing in a Western hospital setting. These stories illuminate the intersection of disabilities and Indigenous identity, showing the power of advocacy, cultural connection, and resilience in the face of systemic barriers.
Let's go now to Victoria, British Columbia.It's a grey November day and residents are on high alert as a bomb cyclone is predicted to hit the area. Our first guest is an Indigenous actor with cerebral palsy. Stephen Lytton's story takes us back to a dark chapter in Canadian history, the residential school system, and highlights his journey to healing through activism.
(Stephen) Okay, great. Oh my god. How are you doing, sir? Pleasure to meet you.
(Shaun) Nice to meet you, too.
(Kate) So, Stephen, this is Shaun, who I was talking to.
(Shaun) Would you be comfortable enough to sit here?
(Stephen) No, it's better if I sit here.I stay focused.
(Shaun) Great. Yeah, that's totally fine.I'll just move the camera over.
(Stephen) Because now I'm in the zone. If I get too comfortable, then I just sink in.
(Shaun) I get it.
(Stephen) In my mind frame.
(Shaun) I get it. All right, so I'm going to turn this around on us. Okay.Video as well as audio.
Shaun Proulx
We are here at the Indigenous Disability and Wellness Gathering. It's day one, Tuesday, November 19th. And I'm sitting down with the noted actor and activist Stephen Lytton.
And you just gave a terrific speech following the showing of a short film that was very, very moving. I want to thank you for coming on today, Stephen.
Stephen Lytton
Thank you very much. It was an honor to continue to present the Language of Love you just witnessed and watched today and was honored to shed light on our lived experience within the system of the residential school. And it's really brought to my attention that each time I look at it, I am encouraged that I'm able to continue to share and shed light on our past, not only our past, but our lived experience and moving beyond, thriving forward.I no longer want to survive, but thrive.
Shaun Proulx
I wonder what made you want to do the film in the first place? What drove you to it?
Stephen Lytton
What drove me to it? Well, my lived experience in residential school was the key reason for doing it. It was about talking about the issues of people with disabilities in the residential school system.
Their experience, be they men and women with disabilities or special needs within the system, are four times greater than that of the mainstream within the system. So when we talk about the impact and the effects of abuse, sexual abuse, or any other forms of abuse, could be subtle, could be minor, could be major, it impacts us differently. But when it comesto speaking about people with disabilities within the system who are impacted in manyways, their voice is not heard.
And when you talk, I can only give an overview of a woman's experience within the residential school and their impact of being abused in whatever form they were abused sexually. I can only give an overview of their experience. And in any case, we need to have female representation at the table when we're talking about disabilities or any other forms of issues that impact our peoples today.
Because the woman's experience is far different than the men's, and their voice needs to be heard as well. I think it's important that we have a balance. And as I grow and learn within our community, I wasn't brought up in my culture or in my traditions as a residential school survivor.
If you had a disability, you weren't brought out to the community. You weren't taught how to fish. You weren't taught how to hunt.
You weren't taught how to survive. But when I look at my experience as a residential school survivor, now a thriver, I see my experience as giving our people a hand up by building that bridge and building those relationships going forward. Because it's a must.
We were once considered apples. Red on the outside, white on the inside. And we were alienated by both systems.
But yet, the residential school survivors and those that continue to thrive today have taken the opportunity to build those bridges. And because of that, we're here today.
Shaun Proulx
One of the things that came up in my research that I didn't personally know is that for a lot of nations, disability was seen as a gift from creator. And then colonization came along, and we now see disability much differently. I was wondering what your thoughts were on that, if you could speak to that.
Stephen Lytton
My thoughts? Well, when you talk about the church religion and how its impact on people with disabilities are experiences, once again, different from that of the normal population within the residential school or our communities. Our experience of being impacted by the church, by our experience within the system, is far greater than that of the normal population within any system that's available today.
There was an experience I'd like to share that I had. There was an individual back home in my community, once asked me, said, Stephen, I have a friend that's coming into town. And he said, would you like to get healed?I looked at him. I spoke with him. I said, you know what?
After thinking about it for a few minutes, I said, thank you for the opportunity, but today I'm not able to. I have things to do, and I'm going to perhaps consider it at the next opportunity available. So a few months later, I come along.He says, Stephen, my friend's back in town. I'd like to give you an opportunity to come and get healed. I said, you know what?
Thank you again for the opportunity. I know you asked me before, and I never really had a chance to think about it. But thank you again.And perhaps another time. I kept procrastinating and delaying the process. But the third time he says, Stephen, I would like you to come with me if you'd like to get my friends back in town.I don't know how long he's going to be in town, but I would like to give you an opportunity to get healed. And then I said, you know what? I thought about it.I said, the creators put me into this situation for a reason. And I'm going to go along for the ride. And he said, okay, thank you.
And I see in that that my disability, I was born with a disability. I don't see myself as disabled, but society deems it different. But when you look at today's society and its impact, and what it's going through, all the situations we see in our communities, our society is more crippled than we are.We're disabled, but we're not crippled. We're physically impacted. We're invisibly impacted by our lived experience and our experiences.
But we have the will, we have the drive. We with disabilities have the opportunity to be role models, not only within our disabled communities, but to society as a whole. And we want to continue to build that relationship and see us as serious contenders, not pretenders, but to be at every table possible.And serious dialogue is a must for us.
Shaun Proulx
I want to ask you a question for the person listening to this right now or watching it right now who does not necessarily understand. Why is an Indigenous disability and wellness gathering needed?
Stephen Lytton
Because we're still dealing with the race issue. And our experiences with disability for Indigenous people are still not taken seriously. There are a lot ofour community members from our different nations.We're still impacted on our reservations. There's no job training. There's no opportunities for people with disabilities.We're just members, but we're lower. I feel that we're a lower class of society within our systems. We're not giving those opportunities of jobs or whatever.
And I think we need to be out there for them and for others that aren't where I am. I have had the opportunity. There's no opportunities for them to grow.If they want to grow, they have to leave the community. There's no resources available for them. If there is, it's very minimal.
And when you look at the issues of our governments within our system, the resources that they get, it gets thrown into everybody else's. We may have on the table a separate funding for us, but we don't get that. A lot of them don't get that for growth or opportunities to leave.A lot of the time, we have to leave to get what we want. My opportunity, I'll give you an example.
For me, the only option for me when I left in 1978, my nation and my community was to leave.The only option I had was to either be drunk, dead, or pitied. And I didn't want those options. So my grandmother and my mother was approached by the government of Canada back in the day.And the government said to my parents and perhaps my grandmother that I needed to be adopted. And my mother said, no, let me talk to my parents, then we'll go from there. And she did.
And my grandmother played a key role in not giving them the opportunity to enter, to adopt me. So she said, no, we'll look after him. You look after the ranch.My mother became her rancher because she was pulled out of residential school to become her parents' rancher. And that's how that rolled. So my mother and my grandmother were major role models, unbeknownst to them at the time.
And my mother and my grandmother planted that seed, and watered it, and nurtured it, and they watched it blossom. So I have a responsibility, not only to my community, but to my legacy, my ancestry, to continue to where we are today. And one of the reasons, one of the greatest challenges in life I think we have to all face is that we grow when we're challenged.
And to this day, you see who I've become. We stand for moving forward and changing the paradigm and the vision. And where we go from here is up to us.We can do it alone, but we'd rather do it with other organizations and build those meaningful, true relationships through honest dialogue.
Shaun Proulx
Stephen Lytton, it's been an honor to have you on today. I appreciate you so much.
Stephen Lytton
Yeah, that's great. I really am honored that I was given the opportunity to be the keynote speaker that states to me that we are finally coming to the table and have to be at our own table and shed light on why it's important that we must be the leaders within our communities and for people that can't speak for them. And I think it's very important that we continue this, but we need honest, meaningful dialogue going forward.
Shaun Proulx
Thank you so much, Stephen. Through Stephen's advocacy, he not only confronts his past, but also paves the way for future generation of Indigenous people living with disabilities. Next, we meet Sheila Grieve, an early childhood educator who is legally blind and has the episodic disability of arthritis.
She has faced significant challenges navigating both systemic barriers, barriers in the workplace, and cultural perceptions of disability. Her story is one of resilience and advocacy. Sheila, welcome to the podcast.
Sheila Grieve
Thank you. So happy to be part of your podcast. I really appreciate the work that you're doing, the time and the effort that you're putting into really listening to different voices and viewpoints.
Shaun Proulx
So why is a conference like this important, focusing on Indigenous disability and wellness?
Sheila Grieve
I think that it's really important on multiple levels. First off, there are a lot of people with disabilities in the world. And when we think about making things better for people with disabilities, we often make things better for everybody.
You think about some of the universal access things that have been made, whether it's the sidewalk cuts, or electric toothbrushes, or all of those different things that have been created to help people that need a little extra support. They also go on to help other people in community. As we know, when we look at statistics, we don't even actually know how many Indigenous people with disabilities there are in Canada.
We can't tell for sure, it's a guesstimate. But we do know that it's a lot higher in Indigenous populations than in the general population. And so when you combine disability and being Indigenous, you have extra barriers sometimes that you need to overcome.And sometimes you have different viewpoints than what the experts might be telling you. And you have different sorts of supports that maybe aren't recognized.
Shaun Proulx
Tell us about your disability and give us a picture and a sort of day in the life sense what you deal with.
Sheila Grieve
Well, I believe that you focus in a lot on HIV and episodic disabilities, whereas I am low vision, legally blind, which is a daily lived condition. I spend a lot of time doing eye drops, believe it or not, because I do a lot of those throughout the day. Because even though my eyes don't work well, you have to still take care of them.
I tend to stick to places that I know well, spaces that I know well. And I have a very adapted environment so that I can succeed at my work and my home life. For episodic disability, I do have arthritis.And that will sometimes flare up, particularly in weather changes, cold weather, damp weather. And so suddenly stairs, I work at a place where there's a lot of stairs. And so suddenly navigating those stairs becomes difficult because I need my guide cane and I need to make sure that I've got support as I try and make it down those stairs.
It becomes difficult just to get around. Sometimes it's very challenging because I can't tell. Like, even to come to the convention center today, I had to cross a bike path.
And then I had to cross the street proper. And there's no real assistance in crossing the bike path. There's no lights that make a noise.There's no way to know if bikes have stopped or not, or if there's bikes coming. There's always something that will catch your cane and you'll suddenly kind of go, oh. For me, I'm really lucky in that I often take the same routes that I know my way well.And not always, but often when you're on your own, there's going to be somebody who's happy to say, hey, can I offer you assistance? If you're looking a little bit lost. Not always, but.
Shaun Proulx
Now, you're Métis and for some nations, disability was seen as a gift from creator. I wonder what you say to that.
Sheila Grieve
So I would say that every child that is born is a gift to the community. And every child brings a gift. And as adults, it is our job to discover the gift of that child.What is the gift that they are bringing? What are we meant to encourage in them? How do we discover what their gift to the world is?And every child really does bring a gift. And I think that one of the things to really remember is that language and translation are not always, they're not always perfect. So if you look at the Cree word for autism, if you were to translate it, it actually means he, she, they, think differently.
That's all it means. It's a person who thinks differently.
Shaun Proulx
How does one reclaim that? How do we get it so that people in general are thinking along those lines more and that Indigenous people have that woven back into their culture as opposed to having had it taken away?
Sheila Grieve
I think that starting to reclaim language, as many youth are doing, and starting to think about it not simply as a translation, but as thinking within a language, right? What does the word for goldenrod mean? It means plant that makes you sneeze.What does the word for mint mean? It means good tasting beaver plant, right? Because you're describing where it comes from.So when you start to reclaim and relearn your language, you're starting to get right into the heart of things, right into the heart of thinking processes and the heart of who you are as an individual, as part of a family, as part of a community, as part of a nation. And I also think that we need to start trusting ourselves to know the strengths, to know, to recognize the strengths and to really allow people to be who they are.
Shaun Proulx
And in what way are the disabilities you've described to us today gifts for you?
Sheila Grieve
Oh my gosh, in so many different ways. For me, I think that some of my disabilities have really allowed me to learn how kind people can be. I mean, again, as I said, there's still people who will take advantage of you because you're blind, the cabbie who will add 10 bucks to your bill, because they think you can't read.
Shaun Proulx
Stop doing that cabbies.
Sheila Grieve
Most don't. That's one in a hundred. But there's a lot of people out there that are very kind and want to learn more and really care about the people that are around them.And I think that seeing somebody with a disability can bring out the caring side in people.
I think the other thing that I've really appreciated is when I go to Indigenous gatherings and non-Indigenous gatherings, the difference in the way that I feel in a sense of belonging. When I'm at an Indigenous gathering, I have a greater sense of belonging and I have a greater sense of autonomy at the same time.Because if I'm at a non-Indigenous gathering, sometimes people just overhelp or force help. And when I'm at an Indigenous gathering, people wait and they see if you actually need something before they offer. So if I stand near the coffee and I'm holding an empty cup, somebody's going to come over and say, can I help you with that?Yes, please. Because I don't want to pour it on my hand and I'm not familiar with this coffee machine.
Or, I was at a gathering a couple of years ago and it was just lovely talking with everybody and spending time.And what I noticed is that there was heaters because it was early in the spring. And when I started to go sit down and it was near a heater, somebody says, oh, take my hand, you're near a heater. So I'm just going to guide you around the heater.And then they just sort of pass me to the next person and the next person. And they said, okay, you're safely past the heater. Pick where you want to sit now kind of thing.Does that make sense?
Shaun Proulx
It makes total sense. The idea of forced help is one that I've heard come up a few times before with people that I know who have different disabilities. Can you help the people listening and watching this understand the difference between forcing your help upon somebody and the right moment to offer the help where it will be accepted and appreciated?
Sheila Grieve
Forced help is where you get something for somebody and go, here, I got you this. And you don't even know if I want it or like it. Forced help is insisting on doing something even when you say it's okay, I got this.Whereas,it's okay to offer help or to say, let me know if you need anything and then step back and wait. Because trust me, if I want some help, I'll be signaling or I'll, you know, I'll ask.
Shaun Proulx
What do you want people to know who are listening and watching this who don't know about disability or just learning about disability?
Sheila Grieve
Oh, no pressure. We're people. We're people and we have things that we like and things that we don't like and we have friends and we deserve to have the best life possible, just like anybody else.And because my actual research is in learning from the land and plants and outdoors, I would like to say that everybody has the right to be outside.
Shaun Proulx
Really nice to talk to you today, Sheila. Thank you for your time. I appreciate you.
Sheila Grieve
Thank you very much for all your time and effort. Hi, hi.
Shaun Proulx
Sheila's story reminds us that accessibility isn't just about infrastructure, but also about creating inclusive communities. Our next guest happens to be a colleague of mine for Realize Canada. Alexandra Pennell shares her experiences living with borderline personality disorder and the challenges she's faced.
Her journey highlights the importance of sensitivity within the workplace, the value of coming together at events like the Indigenous Disability and Wellness Gathering and the need to end stigma about suicide and suicidal ideation.
Alexandra Pennell
I'm Alexandra Pennell. I work as the stakeholder and membership relations officer at Realize. I also work as the operations manager for the Indigenous Heritage Circle, which is a non-profit where I serve our board of directors who represent Indigenous nations from coast to coast to coast, while we look to create a hub for those working in Indigenous heritage and cultural rights across Canada.And my background, my mom is from Guyana and so she immigrated to Canada when she was 21. She's been here for over 30 years now. And on my dad's side, he is originally from Winnipeg and we are mixed, settler, specifically Scottish and Red River Métis roots.
I am from Toronto, born and raised, but I now live in Lévis, Quebec, so just across the river from Quebec City.
Shaun Proulx
And tell us a bit about your disability that you work with every day.
Alexandra Pennell
The major one that I find I live my life with is borderline personality disorder. And so for those that don't know, borderline personality disorder is a personality disorder and it is a mental illness that of course, its symptoms can, of course, aggravate your physical health. But it is similar to being bipolar.The only difference, or one of the major differences is that for us, when we have our moments of instability or where our emotional states can really fluctuate, it happens a lot more frequently than those living with bipolar. So instead of days or weeks of being in a manic state, we can switch within an hour, we can switch within a couple of minutes. And it's incredibly destabilizing, you know, when you're constantly sort of, just sort of along for the ride with your emotions and, you know, you could be having a great day and all of a sudden hit with a level of chronic emptiness.
And the emptiness is so severe that, you know, it is often coupled with suicidality or impulsiveness. And so it can be really dangerous for folks like myself living with it because you really are at the whim of the condition if you don't have the skills in place to handle it. And so, you know, there's mornings I wake up and, you know, you wake up with, you know, this chronic suicidality and it's tough to get through every day.
And there's weeks where I'm thriving and I'm doing great, but all it takes is one bad day for me to be almost completely set off. I even go so far as to say one bad day and, you know, I could potentially take my own life. It's really a heavy thing to live with.And I'm really fortunate to have been able to have access to some great therapists who have given me the skills that I have to this day, but I recognize that not everybody has access to that. And so for those living with BPD, as we call it, it can be very scary and taking it day by day.
Shaun Proulx
Our first episode of the Realize podcast focused on a woman named Sandy Lubert, who taught me something that now I understand about people with suicidal ideation. And that is that the will to live is not a given. Most of us wake up every day with the will to live like we wake up with the breath we take.And so can you talk to us a little bit about not having the will to live in those moments when you don't have it?
Alexandra Pennell
Yeah, so it's really hard for people to understand because as you just mentioned, you know, many people think that this desire to survive is a natural animalistic thing. And, you know, in many ways it is true. I, of course, have my, you know, flight or flight - fight or flight instincts as well if I'm in a moment of danger.
But it's tough when you live with a condition that is really impacting your brain and the way that you see the world. And so, you know, for example, I often find that I'm battling with myself. You know, there's the part of me that wants good for me and wants me to do well, and it wants me to live truly.It wants me to live and get to experience the world that we have. And I often find that I'm fighting against this other side that interestingly enough, and this is something I came to realize recently, that this side that encourages those suicide ideations is actually a part that is trying to protect me in many ways. And many people can't make that distinction.They can't understand that a part of you that's telling you maybe it's better off if you don't live any longer is actually trying to protect me from the harm that I experience in my day-to-day life. And so for me, when I hurt, I hurt really, really, really bad, you know, and it's part of the condition. I feel things that much more intensely. And so the parts that, you know, encourage those suicidal ideations are often trying to protect me, and it's a very confusing thing to come to terms with.
Shaun Proulx
How does a conference like this one, the Indigenous Disability and Wellness Conference, serve you, help you, help others in situations like yours? What is this conference doing for someone like you?
Alexandra Pennell
You know, I think as Indigenous peoples, and this is often, you know, where a lot of my passion lies, because of the history of colonization and, you know, the genocide that's been committed against our people here, we're all often at different stages of trying to understand where we belong in our community and how to reconnect to our cultures. And so, for me, I'm somebody who really learned of our Red River Métis connection later in my life. And conferences like these and other conferences that really have an Indigenous focus allow me to learn from those that have had the opportunity to either reconnect already, or been born into it, or just, you know, have that really strong connection to their teachings and their communities.And so, getting to meet people from, you know, the over 500 nations we have here in Canada, people need to remember, Indigenous people are just not Indigenous, we are our own distinct nations. There are over 500 First Nation communities in Canada, 300 of them in BC alone. And we all have our own distinct culture, we all have our own distinct teachings, we have our own distinct governance, language, everything.
And when I get to come to conferences like these, I get to have both my reality of living with a disability be addressed and get to learn from others that are living with similar things, but then also get to learn from other Indigenous peoples. You know, I also love to run around looking for cousins to see if I can find anyone who's related to me. Métis people know, you know, we all come from a couple family names.
And so, it's important because this is how you build your own community for those of us that grew up off reserve, that grew up not knowing of our teachings or knowing of our culture. It's conferences like these that give us the opportunity to learn, and it's really where we can thrive and make connections. And so, that's why these are so important to me.It not only teaches me about my Indigeneity, but also what it's like living with a disability.
Shaun Proulx
We've talked about this in a broad sense, but I want to zero in on the workplace and what that's like for you and what needs to change in the workplace environment in general across the country.
Alexandra Pennell
So, that's a great question. It's a big policy question, you know, almost. And I think it is important.
I think one thing that has always made me really proud of Realize, for example, and I always been very proud of Realize because we view disability as more than just living in a wheelchair or having vision loss. We view disability as episodic and knowing that it can exist at the physical level, at the mental level, that it can result in weeks of debilitating pain and symptoms and then weeks of, you know, you're doing okay. And just because I have weeks where I'm doing okay doesn't mean that I don't need access to accommodations.
And so, that's one of the major things I've been proud of Realize for doing. And so, one thing that Realize does and that my other work at the Indigenous Heritage Circle do or does is understand that I'm not just an employee of an organization. I'm not just a worker.I'm, you know, I'm not just a cog in the machine. I am a person and I'm going to have bad days. And those bad days are quite frankly, you know, not something that I need to tell, you know, my company or my place of work what's going on with my health because quite frankly, it's often not any of their business.
You know, I am a human being and I'm going to have bad days. I'm going to have days where my physical health, my mental health are not there. And that just needs to be understood.You know, I don't want people, for example, living with borderline personality disorder to feel that they need to speak to their directors or their managers and explain what exactly they're going through because it's not easy stuff to explain. If I tell my manager, hey, I'm, you know, I hate to be crude, but hey, I'm feeling like killing myself today. I'm not going to come into work.You know, they're often, there often comes a perception of me now or I have to share with them something that's really, really sensitive and that's just not okay. I think workplaces need to understand that we're human. We're going to have days like these.We don't need to explain ourselves. You know, I don't need to give you detail on this, but I think it's really normalizing that. And also, I think another really great thing and I've seen this with some of my work is knowing not to pity us as well.
I sometimes find that when I tell people that, again, I live with suicidal ideations, they look at me and they're like, I'm so sorry. And I'm like, thank you. But you know, I don't need your sorry.I don't need your pity. This is something that I've just come to terms with. This is something I live with.
Shaun Proulx
Do you think we can reach a place in the overall workplace environment in this country where these kinds of accommodations are possible? Do you think that's a realistic expectation that we can hold?
Alexandra Pennell
I tend to be more cynical. But a lot of my hope and optimism has come from meeting other Indigenous people who, despite everything that has happened and despite everything that is still happening, not only to Indigenous people, but, you know, to our queer community, those living with disability from other marginalized communities, whatever it is, you know, those that are very much othered in society or have been put down because of the way that they are.
It is those people that are really giving me the hope that by connecting back to our culture, by connecting back to the land, and by really taking the time to get to know yourself rather than, you know, stow it all away, I think as long as we can continue to encourage that, I do think eventually we can get to a place where we do see these things as normal and they're just built into our systems. But unfortunately, when we don't give people like this platforms, we don't let them have seats at tables. And, you know, it's being done systemically.You know, unfortunately, we're going to continue to be in this cycle where we continue to perpetuate that colonial, patriarchal, white, cis, able-bodied mentality. And so, I think so long as we can continue to fuel those that are doing the good work, I think eventually, yeah, we probably could. Cynical, but I think we can.
Shaun Proulx
I've got one more question, but the lights went out on us. So, I'm just going to, oh, they're back on. We're expecting a cyclone bomb here in Victoria later on today.Maybe this is the beginning of it. Oh, didn't you know? This afternoon, a cyclone bomb, like incredible winds, rain.
I don't know. So, I'm going to word this question properly now because of what you taught me. In my research, I came away thinking that Indigenous people had once been taught that disability was a gift.And you said, no, it would vary from nation to nation. So, different nations have been taught that disability was a gift from creator. And I wonder what your take on this is.Colonization came along and ruined all of that. We see disability as a negative now. What do you have to say about all of that?And how do you see your disability as a gift if you do?
Alexandra Pennell
I'm really fortunate that you had these conversations with me, Sean, because I think a number one or one of the major priorities that Indigenous peoples really have is to make it clear that we are distinct, that we are not just all one people. Sure, maybe, you know, deep down, I know we're all related, all living things are all of our relations, but that the nations have their own teachings and they have their own way of understanding the world. And so, I'm fortunate that you were open to hearing that because many people are quick to just sort of lump things into Indigenous and that's it.But that's not true.
There are many, many nations and many beliefs. And so, for me, unfortunately, I'm not sure what my teachings are, what the Red River Métis teachings are when it comes to disability.
But I have heard that there are nations that, as you said, believe that a disability is a gift from the creator. And I do very much agree with that in many ways. You know, it was actually a colleague of mine at the Centre for Indigenous Studies at U of T in my last year of undergrad.I believe he was a Cree Two-Spirit Métis person. And so, I remember he came and saw me in my office and we started having a chat. And it's very easy for me to be open about my struggles.And we got to talking about that. And he said, you know, have you ever looked at what you have as a superpower? And I do think superpower is kind of a cliche.
But he said, because of all of the emotions that you can feel and how deeply, deeply connected it is to your body, your mind, everything, you can now understand, you know, majority of people at a level that not everybody can. I can relate. You can start telling me something, and I can immediately connect with what you're saying.And I can immediately understand. And there's no pity. There's no shame.There's no, you know, ignorance. It's, you know, of course, I'm here to learn. But I can also provide people with the support because I know what it feels like to feel, you know, to live with extreme pain and to live with extreme instability.
And again, I'm not saying I'm the spokesperson for all things pain. But, you know, we tend to have really strong levels of empathy. And that's really important because I know what it feels to hurt.And because of that, I don't want others to feel the hurt that I do. And I do see living with borderline personality disorder as a gift in that sense, because I can make sure that others have the tools and skills they need to not feel, you know, what the negatives are of life. And yeah.
Shaun Proulx
Anything you want to say I have not asked you?
Alexandra Pennell
I just really want to give a shout out. And again, not a sponsored comment, but I really have appreciated your podcast, Sean, especially knowing that you did a talk on suicidal ideations, because those sorts of topics, people are often scared to talk about them or it makes them so uncomfortable. They don't like this idea that, you know, someone's living with suicide, suicidal ideations.And I'm really proud to know that at least somebody out there is willing to have the hard conversations and bring these realities, because these are realities for people, bring them to the light because they also need to be talked about. And if we don't talk about them, we just continue to shy away. We'll never be able to better support each other.
Shaun Proulx
That's really kind. Thank you. And thank you for this chat.
Our final story comes from a mother who fought for her son's right to spiritual and cultural healing while he was in the hospital with a brain injury. Sue Sterling-Bur and her advocacy journey sheds light on the importance of integrating Indigenous practices into healthcare.
Sue Sterling-Bur
I decided to attend the BCANS conference because I am an Indigenous researcher. So I work for the University of British Columbia as a manager for Indigenous initiatives. But personally, I'm an Indigenous researcher completing a PhD dissertation on Indigenous worldview, specifically Nłeʔkepmxworldview, where I'm from in the interior of British Columbia, for people with disabilities.
I've come to this conference to share some of the findings that I've been able to determine through my research, but also to share the impacts of being a mother who is supporting a young adult man living with a traumatic brain injury and disability.
Shaun Proulx
Why should non-Indigenous people care about a conference like this? Why should this matter to the greater population?
Sue Sterling-Bur
Non-Indigenous people need to care about a conference about Indigenous disabilities, because Indigenous people are the first peoples of the land here. And for them to be able to understand our Indigenous worldview, our Indigenous pedagogy, our Indigenous ways of knowing, being and doing for supporting people with disabilities is different than the Western modality of supporting people with disabilities. So it's really important for non-Indigenous people and allies to come in here and listen about our belief system, about what we hold to be true, to learn about our culture, our ceremonies, our spirituality, and how we would support people with disabilities, how they're contributing members of our society.And they are important and they are gifted in what they bring to us. So it's extremely important that we understand both sides of views. I have a couple of children who have gone through a learning disability process, through the school system, had psychoeducational assessments done through the Western model.And unfortunately, it's very deficit based. And it's always about what is wrong with a child in order for them to access supports and services. So we have to identify everything that they're not able to do, not capable of doing.And it just really tears down the child, but tears down the family as well. Because then you're wondering, did I do something wrong for this? Whereas on the opposite side of Western modality deficit-based is an Indigenous worldview for giftedness.
In that our belief system from the Nłeʔkepmx Nation is that when an individual is born with or acquires a disability, it actually means that they've sacrificed a piece of themselves. And because they've sacrificed their vision, or they've sacrificed their healthy lungs, or they sacrifice their hearing, that they have in turn been gifted with something in return. And it's up to us as the adults in the community surrounding that person to help them find out what that gift is.And then to build up that gift and build them up so that they're able to work, they're able to contribute, they're able to be a part of our community. They also share a perspective with the rest of the community that we don't understand. So that's one of the gifts that they bring for us too, is that they understand a different way of living and learning and seeing and hearing that we don't.
So it's important that we give them space to share their voice, so that we understand better of what they're going through.
Shaun Proulx
Can you talk to us a little bit about the research that you've done and the findings you presented on stage today?
Sue Sterling-Bur
Yes, I am currently researching Nłeʔkepmx, the nation I'm from, belief systems, values, ethics, laws on supporting individuals with disabilities, in particular for children and youth. We have our ancestral stories are called Spílexm, which identify our laws, identify how we conduct ourselves on a daily basis, and it shares everything about the communal environment and how we grow as an Indigenous community and nation. And then I've interviewed elders and knowledge keepers to gain a better understanding of what they were taught when they were children about people with disabilities or differences.And then I've taken my perspective with my journey of supporting my son who's living with a brain injury, and what I was taught from my elders and ancestors about spirituality, cognitive abilities, health and wellness from a cultural Indigenous perspective and ceremony, and pulled out all of the themes of what's important and what creates a strong foundation for supporting Indigenous people with disabilities. So I'm currently in the writing stage and compiling all of the interviews that I've conducted, and then reaffirming it with the Spílexm, the ancestral stories of what was captured in the late 1800s, to show that there is a different way of being able to support an individual with disabilities.
Shaun Proulx
How does that mesh or does it mesh with the Western philosophy, the Western belief, when you're a mother, and you're supporting a son in the situation your son is in, with the gifts your son has, but you're in a world around you that's dominantly Western, how does that jive for you as a person?
Sue Sterling-Bur
So essentially, I'm not sure how it will ever, if it will ever change the Western medical model, because there is a time and place for the Western medical model. It's triaging, it's ensuring that the individual that has the most serious injury is taken care of. With the model for supporting an individual with a disability, it's much more holistic, it looks at all areas of development, it looks at the importance of the self of the individual, the family, the community, incorporating the land, the animals, the medicines, so that we're looking at them overall as an individual and not just one specific area of what that deficit or what the disability might be. How they jive, I think that- (Shaun) Do they jive?
Exactly.I mean, I don't feel like they jive, but it gives us a validated perspective that Indigenous worldview is valid, Indigenous worldview is important, Indigenous worldview matters and is important for the overall health and well-being of Indigenous people. That we, our views and our values don't align with Western societal views all the time. And I honestly truly believe that our culture and our spirituality is what helps to ground us to be better people.
Shaun Proulx
I wanted to ask you in your personal situation, how the knowledge base that you have has impacted your son and helping him be lifted up, if you don't mind sharing a personal answer to a personal question like that.
Sue Sterling-Bur
My son acquired a brain injury when he was nine years old, and he needed to be resuscitated. He was hit in the head with a fastball. He had a fractured skull, bleeding in the brain and the frontal cortex and left hemisphere.And he was in the ICU for a number of weeks. And during that time, I don't know if you've had experience of being in an ICU or having a family member or friend being in an ICU in the hospital, but it was, they have their regulations they need to follow one person, one visitor at a time, besides the parent. So, two people at a time.Lights need to be remained off, everything needs to be quiet, etc. So, when I had medicine people come in who are elders to the hospital, they wouldn't allow them to come in because they weren't family. They weren't blood related to me or my son.
And so, I needed to do some advocacy to be able to even have a medicine person come in and brush my son off, brush me off, because not only with the physical injury that caused trauma for him, but it was that traumatic experience of him losing his spirit is what we would call it, where because he was injured to the point where he left to go back to the spirit world, we need to call his spirit back to his physical shell.
And the medical system didn't understand that. They didn't want to even have a conversation with me about a medicine person. They are saying, you have medicine.This is the medicine that your son needs is to be in the ICU. Yes, absolutely. That's what he needed to save his life.But now we're helping him heal, utilizing our medicine people who have medicines in teas and ceremony that will help cleanse the trauma from him and cleanse the trauma for me. So, that's one example of when he was first injured, where they didn't mesh.
Shaun Proulx
Just looked at as woo-woo nonsense, isn't it? How hard was that to advocate to allow that to happen?
Sue Sterling-Bur
It was extremely hard. But we were in a location where I had worked for a very strong agency, Carrier Sekani Family Services in Prince George. And I was able to call an advocate there and they sent individuals to advocate on our behalf to make sure that the medicine people could come in.
Shaun Proulx
Would you want the average listener or viewer to this to know about Indigenous beliefs, beliefs of your nation, and why we should pay closer attention to them and what we have to learn from them?
Sue Sterling-Bur
I think I'd like the average person to listen to the different perspectives and the uniqueness of Indigenous peoples across BC and Canada. We can't be put into the same category as having all the same belief systems. We are actually very unique and distinct between the multiple nations across this country.And I think one of the commonalities that we have is that we have a holistic view of what's important as for each individual that's a part of our family, extended family, community. We live very communally. What happens in my family impacts my relatives, my cousins, my aunties, my uncles, my grandparents, and what happens in their lives impact our lives.
So there's this interconnectedness between us as individuals, but even interconnectedness between us and the land and the environment and the animals. So when one individual is born with a disability, it impacts the entire community because that individual has sacrificed a piece of themselves that we are here to learn from them. They're here to teach us.Instead of having an individualistic perspective of like, what can I do? What's for me? How am I going to advance?It's that collective communal perspective that we carry. I think that's one of the most important pieces is that what impacts me impacts my entire community.
Shaun Proulx
The lights just went out on us. That was a sign of some sort. Sue, thank you so much.
And I wish nothing but the best for your son and your family. Thank you. Very much.
That was great.
So as we've heard, these stories share a common thread of resilience and advocacy. They also highlight the systemic barriers that Indigenous people with disabilities face daily.
From accessibility to culturally sensitive healthcare, the need for change is urgent. Today, we've explored the powerful intersection of disability, trauma, and cultural identity through the voices of those living at its heart. These stories are a reminder that true inclusivity requires systemic change and a deep respect for cultural practices.
What can we do? Start by listening to and amplifying the voices of Indigenous people with disabilities. Support policies that promote accessibility and culturally sensitive care.
Advocate for change in your communities and beyond. These stories teach us that resilience is not just about surviving, but about thriving against all odds. Together, we can build a world where every voice is heard, every story matters, and every individual has the opportunity to heal and flourish.
Thank you for joining us on the Realize Podcast, nurturing potential, inclusion, and belonging in a production of Realize Canada. Please help us by taking that fast three-question survey I mentioned 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. Written, produced, and hosted by me, Shaun Proulx, audio and video editor, John Mackie, graphic design, Alexandria Ditner, special thanks to Julia McKeithren and Alexandra Pennell for their great assistance in making this episode happen. 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 HIVandRehab. 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 Podcasts and Spotify. It really helps other listeners find this podcast. Thank you again for joining us.
Until next time, what do you realize?
My name is Sam.
Hi, my name is Mo.
Hi, I'm May.
And I realize.
I realize.
And I realize.
That it is not my fault, but it is my responsibility.
About life, you gotta have to always keep your heads up.
Life is better when we work together.