Breaking barriers: Unreserved marks Indigenous Disability Awareness Month

[UPBEAT POP THEME SONG IN - AND FADES] 

FALEN JOHNSON: This is Unreserved on CBC Radio one. I'm Falen Johnson. In Canada there have been great strides made to improve conditions for people living with disabilities.

In 2019, The Accessible Canada Act was passed, which prohibits discrimination based on disability. 

But when it comes to Indigenous people living with disabilities, it's much more complicated. 

NEIL BELANGER: We've seen all across Canada systemic racism in the systems that are designed to help us.

JEN DEERINWATER: There's just this idea kind of by the entire world that if you're just not work anything. 

MATTMAC: If you're struggling with a disability, for me, it took so much time, but eventually I got to where I want to be. 

CHRISTA COUTURE: May as well celebrate it. Like not just stop hiding, but why not elevate it and honour this thing that's actually kind of cool.

FJ: November is Indigenous Disabilities Awareness Month. So today on the show, we're looking at disability through an Indigenous lens. 

[THEME MUSIC FADES] 

FALEN JOHNSON: According to the British Columbia Aboriginal Network on Disability Society - or BCANDS -  around 30 to 35 percent of the Indigneous population in Canada, are people living with disabilities. 

When you think of that number and really consider it, it is exceptionally high. These groups are often generalized and misunderstood. Without attention given to specific nations, cultural practice, or regional diversity. 

That's part of what motivated the organization to launch the Indigenous Disabilities Awareness Month, which is now in its sixth year.

Neil Belanger is the Executive Director of BCANDS, and he joins me from BC. Welcome to the show. 

Neil Belanger: Thank you, Falen. 

FJ: So why did BCANDS want to start the Indigenous Disabilities Awareness Month? 

NB: So our organization is an Indigenous disability organization, of course, and we're the only organization of our type in Canada. We provide services both within First Nations and non First Nations communities available to indigenous individuals and families living with the disability. And throughout our work, we really see the marginalization of Indigenous persons living with a disability throughout all of Canada and even within the disability community itself, broadly, Indigenous disability was never a priority, and we were often on the bottom rung, even within the disability community. 

So we took it upon ourselves to start raising the awareness of Indigenous disability, to raise awareness of the unique barriers that people that we serve experience, but more importantly, to to highlight the overwhelming contributions that they bring to all communities across Canada as leaders, as employers, as employees and parents, and just the whole gamut. And just to raise that awareness and in the hope of providing more, getting more partnerships, more collaborations, and more curiosity about our sector so that we can look at systemic problems and create new solutions.

FJ: And can you tell me a bit about what you have planned for this month?

NB: So this month we've got a number of things planned. We have a series of webinars that we're going to be doing this month in relation to some of the core services that we provide. We've launched a lot of information through social media. We launched a new page on our website in relation to the month and asking communities and organizations across Canada to officially proclaim the month, as they can. We have a draft proclamation there for organizations or communities to use, or to send in their own. And they've, we've got a good response so far. 

FJ: And do you even got a message from Justin Trudeau? Is that correct? 

NB: That's right. We released a video that the prime minister had created highlighting the month and highlighting the contributions of Indigenous person with a disability in Canada. I think it's got about 6500 hits so far. We have some other videos that we will be releasing during the month as well. So it's been a good start so far. 

FJ: Well, let's take a listen to that clip of Trudeau that he recorded to recognize this month. 

Justin Trudeau: Hello, everyone. Bonjour a tout. This year marks the sixth anniversary of Indigenous Disability Awareness Month. Throughout the month of November, we celebrate the many contributions and achievements of Indigenous people living with a disability. 

At the same time, it's an opportunity to reflect on what more we can do to build a fairer and more inclusive Canada, because we know that people living with a disability face challenges and obstacles every single day. And for Indigenous people living with a disability, they often face additional barriers. That's why our government is determined to build back better. And that's why we're moving forward with a disability inclusion plan to help address the obstacles and be responsive to the needs of all people living with a disability, including Indigenous peoples. 

I'd like to thank the British Columbia Aboriginal Network on Disability Society for their advocacy and work on this important issue. For nearly two decades, you've been providing disability and health support to Indigenous people and organizations and making a real difference in the lives of so many. During this month of awareness, let's work together to highlight the voices of Indigenous peoples living with a disability and continue to fight for a more accessible and inclusive country. 

FJ: So governments and politicians are recognizing the month of awareness. Can you tell me how they're doing that? 

NB: Sure, so it's kind of ironic this year, because of the elections in B.C. and Saskatchewan, they both have declared the month, but because of the election, they couldn't really do a lot now until they get their cabinet and everything in place. So they are two provinces that have declared it. The Assembly of First Nations have declared it a number of years ago. B.C. Métis Nation, First Nation Summit, the Council of Yukon First Nations and hundreds of other organizations and communities across Canada. And typically we work with the governments. They'll do some recognition within the legislature. 

If people want to go to our Twitter site, they'll see we have a number of photos posted from the Northwest Territories where we have the premier and cabinet ministers and general members of the assembly wearing our pins in honour of the month. We've got acknowledgements from different politicians. We have senators that are asking us to provide them with some speaking notes that they're going to talk about it in the House, in the Senate. And also in the House, we have some MPs asking for well. 

So we're moving forward with good recognition, and of course, our goal is to have it recognized nationally by Canada, which is a recommendation that the United Nations Committee on the Rights of Persons with Disabilities made to the government in 2017. It's been, it's going to be a good year, and we're hoping that next year, we will see it recognized nationally and on an annual basis. But it's good to note that this is the only Indigenous disability specific proclamation and an acknowledgement anywhere in the world. So this is the first time it's ever been done. So we would encourage other countries to do the same. But first, Canada, of course. 

FJ: Mm hmm. And I know you mentioned your work with the United Nations. And I know in 2018, your organization took part in the United Nations Convention on the Rights of Persons with Disabilities. So you've seen firsthand how disability rights for indigenous people are recognized, you know, around the world. So how's Canada doing? 

NB: Well, it's doing better. I mean, the Liberal government here has taken more of a look at disabilities than perhaps previous governments have done. I mean, there's certainly always work to do. And with the Covid-19, well, it has really highlighted for all persons living with disability in Canada, the government has taken note during the initial stages of it, but there wasn't a lot of support for persons with disabilities, and I think that's been highlighted across the country. But now through the throne speech, they have announced that there will be a creation of a new federal disability benefits, and that's what we were working for. So, yeah, so we're looking for a better day, but it's going to take a lot from provinces as well. It can't just be the federal government.

FJ: So what barriers do Indigenous people with disabilities face?

NB: So, of course, we have multiple barriers, you know jurisdictional issues is one of the big ones, whether it's provincial or federal and how the two systems work together. We have some capacity issues within some of our communities, transportation, housing, you know, systemic poverty. And of course, recently we've seen all across Canada systemic racism in the systems that are designed to help us. So, you know, particularly the health system, within the justice system. You know, when you're living with a disability and accessibility is a problem, your community might not be accessible, you know you're reluctant to get health care because you're afraid what's going to happen when you get there. It's often a very difficult life. And as a nation, we have to change how we think about things, and how we do things.

FJ: So working for BCANDS and working alongside the United Nations Convention on the Rights of Disabilities, are you seeing improvements to the rights of indigenous people living with disabilities?

NB: It's like anything else when the government, the federal government does stop, does impact our sector as well. And same within the provinces. In B.C., we had a very progressive minister, unfortunately he has chosen not to run. So he's no longer a minister there. So it all depends upon your province or territory, it depends upon the leadership there that wants to effect good change. Federally we have a government now that's more in tune with the disability community that's never been there before. So we have seen some changes. 

You know, the Accessible Canada Act came out of the work with the U.N. and some of the recommendations made to Canada, but right now we're unsure how that will affect First Nations in Canada, so 630 First Nations plus. So accessible is a huge thing, right? If you are living with a disability and you can't get around in your community, you can't be part of the cultural or community events, if you can't take part in the government structure, I mean, it leaves you in isolation. So that's a huge barrier that we're facing now and we don't know how that's going to be addressed. So there's been good things, and there's been things that haven't really moved. 

FJ: Well, thanks for talking to us today, Neil. 

NB: No, thank you. It's been great. Neil Belanger is the executive director of the British Columbia Aboriginal Network on Disability Society, or BCANDS. November is National Indigenous Disabilities Awareness Month. 

[UPBEAT MUSIC FADES IN - AND OUT]

FALEN JOHNSON: Indigenous people with disabilities often face double strikes against them. They are discriminated against for both their race and for their disability. That's what Jen Deerinwater believes. She identifies as an Indigenous spoonie living with multiple disabilities, many of which aren't visible. She's a journalist, a citizen of the Cherokee Nation of Oklahoma and the founding executive director of Crushing Colonialism. I've reached her in Washington, DC, which she identifies as occupied Piscataway land. Welcome to Unreserved.

JEN DEERINWATER: It's wonderful to be with you today. 

FJ: So first off, for those who might not be familiar with the term, what is a spoonie? 

JD: So a spoonie is a term that was created under something called the spoon theory. And so the spoon theory uses spoons as a unit of energy. So it's basically sort of a way that chronically ill people try to explain the energy levels that we have. So we'll say you start off each day with ten spoons. Well, you know, one spoon can be gone just from getting up and making your breakfast. You know, you lose your second spoon when you have to make phone calls and argue with health insurance companies. It's basically everything that we do throughout the day uses a spoon of energy and eventually you're just out of spoons. So it's kind of one of the easier ways of trying to explain what it's like to have, you know, chronic illnesses and have such a low amount of energy and what it's like to try to not just work and socialize and have a good life, but also just to do the basic activities of your daily living. 

FJ: Yeah, it's interesting. I, I'd never heard it before. 

JD: Mm hmm. 

FJ: So you identify as disabled. Can you tell me about some of the challenges that you have faced? 

JD: Sure. I mean, it's, it's a variety of things. So I have mobility issues and I suffer from chronic pain as well as some autoimmune diseases and some other illnesses. So some of the issues I've had is trying to find disability accessible housing that's affordable. There's discrimination in employment in the U.S. We have something called the Americans with Disabilities Act, which was passed in 1990. And it does provide us some protections, but not nearly enough, and there's no, you know, oversight body. So basically when the ADA is broken, it's upon the shoulders of disabled people to try to rectify that problem. And, you know, disabled people, at least within the U.S., tend to live below the poverty line, have higher rates of homelessness. 

So, you know, trying to fight an employer or let's say you're trying to access a grocery store, there's just like a whole host of forms of discrimination under something called ableism that disabled people just run into all the time. And it varies greatly depending on the type of disability that you have, because obviously there's different types of disabilities and as such, there's different accessibility needs.

FJ: So from your perspective, what is life like for Indigenous people living with disabilities today? I mean, I know you mentioned some examples of things that you face, but can you tell us anything else about that?

JD: It's pretty tough. So the Indian Health Services, which is a federally funded health program for those of us here in the U.S., it's a trust and charity responsibility the United States government has to us. But it's one that, like all of its other trust in treaty responsibilities, it does not honour. So for Native people in general, getting health care is really tough. It's so grossly underfunded that in 2016, the Federal Bureau of Prisons actually put several thousand dollars more towards the health care of incarcerated people than the government put towards Indian health services. So even when you're trying to find Native health care, it just, it's not really there. It's not very good quality. And then within the non-Native medical system, you run into a lot of issues with, like, a lack of cultural competency. 

It is not uncommon for me to go to doctors appointments and have doctors just say really racist things about my last name, about, you know, my Indigeneity. There's a lot of really horrible assumptions that get made just just in the healthcare system, let alone, you know, going about your daily life.

You know, Indigenous people in the U.S. per capita have the highest rates of police brutality and death. And disabled people in the U.S. have some of the highest rates of police brutality, as well as considerably higher than that of able-bodied people. So, I mean, you combine those two things and you can only imagine what that situation is like. Disabled women within the U.S. also have incredibly high rates of sexual assault and domestic violence, which, you know, as I'm sure you're aware, it's very high for Indigenous women here in the U.S., just like in Canada. So there is just, there's a constant overlap of all the various forms of isms and oppression that disabled Indigenous people face in the U.S. 

You know, I mean, if you even think about just some of the basic accommodations that are available to some non-Native disabled folks in the U.S. like paratransit, well, if you go out onto a reservation, we'll say the Navajo Nation, for example, they don't even have proper roads. So if you're in a situation where you don't have clean drinking water, you don't have proper roads, you know, you don't have those sorts of things, then disability accessibility just isn't going to happen, even if it's a priority. Like, you can't make that happen if you don't have your basic daily 

FJ: And I know that, you know, as an Indigenous person and I think this sort of, it goes across the borders, that frequently we're not believed. If you were not feeling well, like if you're approaching a healthcare professional and you're trying to tell them about, you know, something that's happening with you, sometimes you are not believed or just outright ignored. 

JD: Mm hmm. Yeah. I mean, that's happened to me so many times. I've gotten them 'well, it's just all in your head,' or 'this is just a mental illness.' I've gotten the, 'well, you must be a drug addict and a drug seeker,' you know, and I and in particular, somebody that suffers from chronic pain, that's really difficult. Like how do you get pain management care when that's the immediate assumption that everyone has about you? So it's just, it's difficult. It's frustrating. And you know, in the racism in the medical system, I know it's bad in Canada. I mean, I know about what happened to the relative in Quebec when she went to the hospital. You know, it's a common story, unfortunately.

FJ: Do you believe that there is a complete lack of Indigenous cultural competency in health care?

JD: Absolutely. I'm constantly amazed at the things that get said to me, and in the situations in which they get sad as well. I you know, I had back surgery in 2017 and while I was laying there on the table, like waiting for them to put me to sleep and start the surgery, one of the people that was in the surgical room, you know, just trying to take my mind off things, was talking to me about my tattoos. And one of them, I don't know if she was a nurse, I'm not sure what her role was, but it was a white woman just all of a sudden said, 'well, that's a prison tattoo.' Just like a sense of disdain over a stick and poke tattoo that I have. And it's not a traditional tattoo, but because it was a stick and poke and it's on a Native person, then it must be a prison tattoo. You know, and this is what's being said to me before I'm about to be put under and have back surgery. And then after that, I had people coming into my hospital room, you know, like I made it very clear to them. I said, I do not want you coming in here wearing any of the Washington, D.C. football team merchandise because of the very racist name and imagery. 

Well, that was somehow taken as, 'oh, I'm just a super fan of another football team.' So that had people coming into my hospital room calling me the R word and making jokes and thinking it was funny. You know, on top of having a white nurse who refused to give me the pain medication that the pain management team had prescribed, you know, I'm laying in there in horrible, agonizing pain after back surgery. I should be focusing on resting and healing. But instead, I had to have an hour long conversation with the interim director of patient experience at the hospital because the racism was so vile and so blatant.

I ended up leaving the hospital about two days earlier than I probably should have because it just reached the point where I was like, you know, I will probably be safer at home all alone than I am in this hospital. And that's just one example. You know, I have 41 years of examples of racism and sexism and ableism and whatnot in the medical system. 

FJ: And so this can all seem or sound quite dire. But you are an activist and an advocate. So what do you think is the path to improving health care for Indigenous people living with disabilities?

JD: Oh my goodness. I'm going to speak to the U.S. because this is what I know personally. But I think that there is a lot of similarities in the way in disabled and in particular disabled Indigenous people get treated by the colonizer. But in the U.S., one, we need to turn healthcare into a human right, not a for profit business. You know, we need a complete overhaul of our healthcare system here. The way it's set up, the corporations are really the ones that make the decisions, the insurance companies, the lobbying organizations for pharmaceutical companies, like we need our health care to be turned into a human right that everyone has access to, not just a few people. So that's that's number one. Number two, the Indian health services, including urban Indian health care, must be funded. 

Tribal leaders have said we need at least ten billion. That's billion with a B dollars just to get the Indian health services to a similar quality. Is the rest of the health care in the United States. That's just to get to meet up with other health care systems in this country, which are already not good enough, which we are clearly seeing under the Covid-19 pandemic.

FJ: Yeah, I can imagine that's only highlighted sort of some of the shortfalls of the healthcare system.

JD: Absolutely. I mean, many of us who are disabled and chronically ill, we're going without our regular medical care right now. Some of the people I know, I have some disabled Indigenous friends that are going without a particular type of prescription they need because Trump is going around making all these false claims about this medicine, working to cure covid and that medicine, you know, where we're being left to die. You know, in Washington, DC, we are in dire need of more home health care aides. You know, we have such a home health care aide shortage here that the disabled community here, you know, we're going without the care we need.

FJ: So how hopeful are you that things will improve for Indigenous people with disabilities? 

JD: Hmm. I wish I felt differently, but I'm not very hopeful about that, you know, I mean, I'll say that I am seeing some positive signs, some change in growth. You know, since Standing Rock happened, I am seeing more of an effort by non-Native community organizers and activists to try to include Indigenous people. And I'm seeing that in the disability justice community here in the so-called U.S. It's still a very overwhelmingly white-centered and white-led movement. But there's some change I'm seeing. I have a little grain of hope, but there's still so much we need to do, including within the Indigenous community. You know, ableism is not just a problem by non-Native people. It's a problem in Indigenous spaces. You know, there's so many events that I can't go to because they're not held in disability accessible spaces. There's just this idea kind of by the entire world that if you're disabled, you're just not worth anything. You're just meant to be thrown away, to be put in a nursing home or some kind of institution and just to, you know, die quietly out of the line of sight of the abled. And unfortunately, some of that mentality is alive and well within Indian country in the U.S.

FJ: Well, I want to thank you for chatting with us today. It's I just feel like there are 7000 mic drops in that tape. [laughs]

JD: [laughing] Well, thank you, though, for reaching out to me. I'm always happy to try to speak and try to help elevate these needs in these issues.

FJ: Jen Deerinwater is a journalist and founding executive director of Crushing Colonialism. She's also an Indigenous spoonie, a term coined by disability activists, which refers to people living with disabilities that aren't visible. We spoke to her from her home in Washington, D.C. 

This is Unreserved on CBC Radio One, Sirius XM 169 and Native Voice one, I'm Falen Johnson. Today on the show, we're marking Indigenous Disabilities Awareness Month. 

MATTMAC: My name is Matthew Monias also known as Mattmac. I am a blind recording artist and music producer from Garden Hill First Nation. So I've been singing for a long time. I'm 20 years old now and I've been at this for, I guess, 17 of my 20 years of life. I enjoyed singing gospel music as a kid. For me, it was definitely a chance to develop my voice at such a young age. And yeah, I loved it growing up as a blind person in the reserve. It's quite interesting. I remember around seven or eight, that's when I realized that I couldn't see, and that really kind of affected my ability to sing and affected my ability to do a lot of the things because I was just so overwhelmed with sadness and depression. 

Basically, depression hit me at such a young age. So that was kind of like one of the things that really stopped me from doing music for a couple of years. So I remember like my early teen years, I just, I wasn't really doing anything crazy. I wasn't really doing much music, but I was slowly getting into technology and I was slowly discovering about assistive technology like screen readers, which is a software that reads stuff on the screen. And I was really kind of getting into that because by age 13, I got an old laptop and that's when I kind of really got into, like the technology aspect of music. And from there I started playing the piano. And that's what really kind of helped me out of that little depression I was in. 

I really took those three years to actually develop my piano skills. And that's kind of how it all started, just by playing the piano. And then eventually I picked up the guitar at 15. And also around the time I was also teaching myself how to play the drums in the kitchen. 

[MUSIC, uptempo hip hop]

So my music is, it's inspired by a little bit of everything. I obviously grew up listening to gospel from my mom, rock and rap from my siblings, my music has so much inspiration to it. The vocal is so pop but it's like has trap driven beats. So I feel like that has a different feel like that has a sound to a lot of it. I do it on my own, right from the beat up to the vocal recording lyrics and vocal mixing down to like the final vocal mix in the final song mix. For me, when it comes to music, I feel like it's my most creative process and it's also a way for me to express more. 

The video for Paradise dropped like a month ago now, and ever since then there's been so much attention to the song and it's just, it's been doing crazy numbers. I've never thought I would imagine so soon, especially if it's like my debut single. Paradise has been getting radio play across Canada. And a lot of people have been just coming up to me and be like, 'hey, I really like your song.' And I've just been getting so much, like, support. So it's been absolutely crazy for the last month or so in a good way. 

[MUSIC, uptempo hip hop]

Knowing that people are inspired because of my story, knowing that they feel encouraged a certain way, or I've had several people tell me that I inspired them to start picking up on an instrument. And just that alone made me feel accomplished. I'm like, I just want to serve as that person to inspire somebody. If you feel like, if you're like, struggling with a disability. For me, it took so much time, but eventually I got to where I want to be and I'm still okay. Obviously, I'm not saying like I've, like, made it or something like that, but I'm at that place where, like, I can accomplish my dreams and get stuff done and have some success. And that requires a lot of time, patience and effort. If you're struggling with your own disability. My message to you is just don't give up and you'll get that place where you'll find your passion or whatever you like to do or find something that'll help you cope with whatever it is that you're dealing with. 

[MUSIC - Paradise by Mattmac]

FALEN JOHNSON: That was Matthew Monias, AKA Mattmac, and Paradise. His debut album, 20/20, will be out on November 20th. 

This is Unreserved on CBC Radio One, Sirius XM 169 and Native Voice One. I'm Falen Johnson. Today on the show we're marking Indigenous Disabilities Awareness Month. Coming up, we'll hear from Martin Heavy Head Jr., who grew up surrounded by sign language. But not ASL — Plains Indian Sign Language. 

Martin Heavy Head Jr.: I'm even doing it right now — I don't even notice it, but I'm speaking with my hands while I talk. It's often spoken along with verbal language so that you're communicating with your hands along with your voice at the same time.

FJ: That's coming up. This week at Unreserved, to acknowledge the barriers some face accessing our show, we're making it more accessible. Head to our website cbc.ca/unreserved to find a complete transcript of this episode.

[MUSIC — Heavy drums, tense, active]

FJ: A few weeks ago, I sat down with musician, author and broadcaster Christa Couture. In her new memoir, How to Lose Everything, Christa talks very openly about a major loss she experienced when she was just 13. That's when her leg was amputated above the knee following a cancer diagnosis. 

After using a prosthetic leg for years, Christa said words of wisdom from a drag queen inspired her to cover that leg in a flowered pattern … and flaunt it. 

CHRISTA COUTURE: Years ago, I had been at drag bingo in Vancouver, and Joanie had — I don't even remember what she was speaking about — but she said, "if you can't hide it, decorate it." 

So I had seen a prosthesis that would … or cosmesis is the word ... a cover that was made by this organization group called the Alternative Limb Project. And it was painted from, you know, foot to hip in these flowers and I thought it was so beautiful and it just kinda was in the back of my mind that you could do something decorative with a fake leg. Because it was like, "Yeah, I can't hide that I only have one leg." I tried. For 20 years, I tried to pass for a two-legged person. I am not a two-legged person. It's never going to work. 

And so, I was like, "Right, I can't hide it. I might as well decorate it. I may as well celebrate it. Not just stop hiding, but why not elevate it and honour this thing that's actually kind of cool, you know? I made this change, and I, you know, thought "OK, that looks cool. I kind of like it." 

I was a bit self-conscious at first because it was a bold choice. [laughs] The first place I went was Shoppers Drug Mart. God knows I just probably needed some toothpaste or something. And I was walking down the aisles, kind of looking around, wondering if people were just going to stop and stare at me, feeling pretty self-conscious, actually, and not totally sure if I was ready to be so visible. But I got a couple glances, and no one stopped and stared, no one was weird about it. [laughs] I paid for my things and I walked out of there and it was kind of my … it felt like my coming out party in the Shoppers Drug Mart. 

Now strangers come up to me and tell me, you know, that they think it looks amazing or, you know, "I'm not sure if I can say something, can I say something?" or "Could I take a picture?" or "How did that get made, and how does it work?" And all of this curiosity, not about my disability — because before, the questions were like, "Oh, what happened to you? Gross." Whereas now, it's like, "That's so neat!" 

And they just want to learn about it. They want to learn about how it was made. People think it's hand-painted but it's actually just a piece of upholstery fabric that's laminated onto the fibreglass which is a really simple technique but I know has this cool result. And I didn't know that would happen. I didn't know that I would start having conversations with people who thought this thing about me was so cool that I was like, "Yeah, I'm coming to terms with it and I'm starting to accept this part of who I am." 

And now I'm getting all this feedback — and I know we shouldn't rely on what people think about us, but actually it was like, incredibly transformative to have people come up to me, you know, every day and say, "I love that. I love that about you." So it was actually kind of healing to put a neon sign to my disability and have all these people go, "Yeah, I like it."

[MUSIC - Lovely Like You by Christa Couture]

FALEN JOHNSON: That was Christa Couture with Lovely Like You from the album Long Time Leaving. If you want to hear my extended conversation with Christa that aired a few weeks ago, find it on the CBC Listen app or wherever you get your podcasts. 

This is Unreserved on CBC Radio One, SIRIUS XM 169 and Native Voice One. I'm Falen Johnson. 

Jordan River Anderson would have turned 21 last month. But died when he was five in a hospital in Winnipeg, more than 800 km southeast of his home community, Norway House Cree Nation in Manitoba. 

Jordan had a rare muscle disorder, which kept him in the hospital all his life. As federal and provincial governments argued over who would pay for his home care. That's because, for First Nations children, health care is paid for by the federal government, not the province. 

Jordan's story motivated Indigenous child advocate Cindy Blackstock to fight for equal health care for First Nations children regardless of where they lived, or what types of health services they required. 

Here she explains how Jordan's disability was treated differently, just because he was First Nation. 

CINDY BLACKSTOCK: Because he was First Nations, Manitoba said 'Well, we don't pay for status Indian First Nation kids whose parents are on reserve, that's a federal responsibility.' And Indian Affairs and Health Canada couldn't agree which department should pay. So all three of these government bodies were arguing over everything related to Jordan's services. In the end, Jordan died of a broken heart. He slipped into a coma just before his fifth birthday and he passed away at the age of five, never spending a day in a family home because he was First Nations.

FJ: Cindy Blackstock worked with the family to create Jordan's Principle. The goal was to ensure that First Nations children living on and off reserve would have access  to care equal to that of all other Canadian children. Including health care needs tied to disability. The bill passed unanimously in the House of Commons in 2007.

But Blackstock said the government hadn't lived up to Jordan's Principle.So, she took Jordan's case to the Canadian Human Rights Tribunal. And won.

CB: To give you an idea of the depth of the number of families that were in need, since May of 2017 when the tribunal ordered Canada to implement the proper definition of Jordan's Principle, over 250,000 services and products have been provided to First Nations children across this country thanks to Jordan and his family and the many people who stood with him. 

FJ: Cindy Blackstock says the government still has more work to do, and she continues to fight on behalf of First Nation children across Canada.  To learn more about Jordan's story, acclaimed filmmaker Alanis Obomsawin's documentary Jordan River Anderson, The Messenger is out now. 

[MUSIC — powwow, active, leading]

Falen Johnson: American Sign Language is the most commonly used one. But there are Indigenous sign languages, there's Plateau Sign Language spoken by communities on the West Coast, there's Inuit Sign Language, and there's Plains Indian Sign Language, spoken in the prairies. 

Martin Heavy Head Jr. is not deaf, but grew up speaking Plains Indian Sign Language. He's a member of the Blood Tribe of the Blackfoot Confederacy in Alberta. And he joins me from his home in Kainai. Welcome to the show, Martin.

MARTIN HEAVY HEAD: Hi, how are you? 

FJ: I'm well. How are you? 

MHH: Very good. 

FJ: Great. So what is plains sign language and how is it different from the more commonly used American sign language? 

MHH: Generally speaking, people didn't understand one another's languages, so there had to be a universal language among the Plains Indians. So this included the Sioux, the Crow, the Gros Venre, the Cree. Originally, you know, other people's languages are pretty mysterious to us, even historically. Though, there were people who would go marry into other tribes or go live with other tribes, and so they might learn Crow or Gros Ventre or Cree. And it was used a lot in intertribal meetings. So when we were going to be making a treaty with, let's say, the Nakota or the Lakota or, you know, the Plains Cree, the people up during the Peace Hills Treaty with Poundmaker, when the Cree had came in to stay in our territory, that was the language that was used because, you know, we didn't fully understand each other's languages, but everybody spoke Plains Indian Sign Language. I'm even doing it right now. I don't even notice it, but I'm speaking with my hands as I talk. It's often spoken along with verbal language, so that you're communicating with your hands, along with your voice at the same time. 

FJ: And I've heard that American Sign Language actually originates from Plains Indian sign language. Is that true? 

MHH: I've heard that as well. That's something that was told to me that it was an inspiration, though I also understand that the French had had a kind of sign language. 

FJ: So you're not hearing impaired. Why did you want to learn the language? 

MHH: Like I said, people spoke with their hands all the time. So it's not that I wanted to or didn't want to learn the language. It just came along as time went, because growing up, there was George Heavy Head Tsotsi, he was my father's uncle, and there was George Day Rider, and both were either born deaf, or they became deaf at a very young age. So they exclusively spoke Plains Sign Language, which is why I was able to understand quite a bit of it and use it growing up because, you know, to communicate with these older men.

I grew up in the middle of the plains, so my dad would take me along with them, we'd go haul water to the house together, we would go hunt. I would go along with them throughout most of his day, and he would go visit elders. And as they spoke, they would be speaking Blackfoot, but they'd also be using sign language at the same time. It's, it's just sort of second nature to a lot of older people as they spoke, and even today, to like to create emphasis of one on telling a story people will still use and signs to really get the point across, get the point home, you know.

FJ: Wow, that's cool. It's almost like learning two, two things at one time.

MHH: Yeah, well, I think it's kind of more came about because as we're growing and as you're immersed in the culture, it's being absorbed sort of second nature. It wasn't an imposition or extra effort. It's just something that happened along with being around my people. 

FJ: And so how does it feel to be able to communicate with your family using this language? 

MHH: Well, George and Tsotsi died quite a few years ago now, and they were the last people that I know of who spoke Plains Indian Sign Language exclusively. But, that being said, we still use it like, you know, maybe we will be at a ceremony and my dad's on the other side of the room. And I can't, you know, just talk to him. Then I'll have to kind of like, make, make some hand signs so he'll understand what I'm saying. Or even when I want to be discreet, you know, like I want to borrow 20 bucks from my mom, but I don't want to ask anybody that I'll make the hand sign for, "can I borrow money?" 

FJ: But you owe somebody 20 bucks who's in the room. 

MHH: Yeah, yeah, yeah. It's terrible. 

FJ: So people are concerned that Indigenous sign language is like other Indigenous languages are at risk of extinction. Is this something that you're worried about with plain Indian sign language? 

MHH: Yes and no. Yes, because as far as I know here, there's nobody that exclusively speaks it anymore. The two Georges spoke it out of necessity, and we're not seeing a lot of people, like if there are people who are born hearing disabled or become deaf over time, if that happens in American Sign Language is pretty well what is spoken. Like there is one of my cousins, his ex-wife, her and her children speak American Sign Language, so it's not, it's not a Plains Sign Language, and that does, it does make me a little sad, but at the same time, not because it's still being, being spoken along with Blackfoot and English today, I don't think to the full extent that it could be used. But people still use a lot of the hand signals today, especially in greetings. You know, you're far away than greet somebody. You take your hand, your right hand extended out flat and sort of like a 90 degree over your chest and from your heart and then go down with your hand in a sort of a swift motion toward, you know, a 45 degree angle.

FJ: Oh, yeah, I'm trying it. I'm trying it right here.

MHH: That greeting is good, you know, like so you could greet people. And then another for saying hello, you clasp your hands together and hold them, and then from the center of your chest out, and then kind of shake your, you know, like how when people would celebrate they shake their fists over their head. Instead of that, it's from the chest out in front and shaking your two clasped hands together.

FJ: So if I'm ever if I'm ever on the plains, I can try that out. 

MHH: Yeah. I think my favorite sign, though, is you put your fists to the side of your head at your temple and raise your thumbs, both thumbs, and then wiggle them. And that's the sign for baby buffalo. 

FJ: Oh, that's adorable. 

MHH: Yeah. And my dad, we were talking one day and he showed 'good.' Where you take your hand, extend that down into a 45 degree angle, and then did 'bad,' where you're throwing something away and you, you have your hand in a fist and then extend your fingers as if to throw something away. So that's 'bad.' 

FJ: Mm hmm. 

MHH: And then you take your hand and cover your face in a circle motion and then throw that away. And that's 'ugly.' 

FJ: [laughs]

MHH: Oh, so dad taught me the good, the bad, and the ugly.

FJ: So this show is about disabilities. And some people in the deaf community say that being deaf is not really a disability. What are your thoughts on this? 

MHH: There's always a way around, working around whatever. A very explicit value with Blackfoot people is that now that we are here in this world, in this reality, you have the right to be here, and we have the responsibility or accountability to be with you and also for you to be with us. So when talking about disability, it almost seems as if disability was an arbitrary kind of categorization to, to separate, manipulate and, you know, push people away. 

FJ: Hmm. So I just have one final question in Plains Indian Sign Language is pointing with your lips or chin, does that mean anything? 

MHH: [laughs] So one of my friends pointed this out, Terrill Tailfeathers pointed this out. He said, yeah, in Blackfoot they give a lot of flack for Cree to point with their lips. And I saw that growing up. You know, my my mom's from Maskwacis Cree, and so I saw everybody pointing with their lips. But in Kainai, we point with our foreheads, "over there."

So it's so it's kind of like, you know, being half Cree, half Blackfoot, pointing with my forehead, pointing with my lips, all over the place 

FJ: Just aim for the middle of the face, go with your nose. [Laughs]

MHH: [Laughs] Yeah, maybe that's a nice medium point. [Laughs]

FJ: Yeah. Yeah. Thanks for taking the time to chat with us today, Martin. 

MHH: Yeah. Thank you. It was an honour. Thank you.

FJ: That was Martin Heavy Head Jr. on speaking Plains Indian Sign Language. He's a member of the Blood Tribe of the Blackfoot Confederacy and Alberta. 

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Falen Johnson: That's it for this week's episode of Unreserved. If you want to get in touch with us, send an email to unreserved@cbc.ca . Or you can find us on Facebook or Twitter. 

This episode was produced by Stephanie Cram, Kyle Muzyka, Katie Toth, Logan Perley and Anna Lazowski. I'm Falen Johnson, niawen'kó:wa for listening.

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