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Inclusivity and the Legacy of Disability Advocacy in Indigenous Cultures

December 29, 2021

Did you know that there isn’t a word for “disability” across indigenous languages? Instead, there are different terminologies used amongst indigenous communities. If you’re wondering what inclusivity and advocacy for disabilities in Indigenous cultures look like, this episode is for you.

Today, Jeiri sits down with Jim Warne, who is the Director of Community Engagement and Diversity at the University of South Dakota’s Center for Disabilities Oyate’ Circle. The Oyate’ Circle addresses indigenous disability issues for South Dakota’s tribal nations. He is also President of Warrior Society Development, LLC., a consultant with the University of Arizona, and an Emmy nominated filmmaker.

In their conversation, Jim shares his motivation and his why behind the Oyate’ Circle and the work that they do. He also talks about the early stages of setting parameters of ADA and the growing pains that came with it. Jim shares what disability and disability advocacy looks like within indigenous communities, and how he has found the strength to pave the way for future generations to come. Tune in as Jim and Jeiri share personal stories about their advocacy,  families, and the legacy they hope to leave behind.

View all episodes and transcripts at http://www.aucd.org/podcast

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This episode was funded by the Administration for Community Living through technical assistance contract # HHSP233201600066C. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.


Welcome to AUCD Network Narratives, where we share real stories from our members. I'm your host, Jeiri Flores Advocacy Specialist at the Strong Center for Developmental Disabilities and the co-chair for the Council on Leadership and Advocacy. Join us as we hear from inspiring leaders within our network working to make a change.

Jeiri Flores: Today, we're here with Jim Warne and who is the director of community engagement and diversity at the university of South Dakota center for disabilities Oyate circle. Jim wrote several grants to establish the Oyate circle which addresses indigenous disability issues for the South Dakota tribal nations. beyond his work at the UCEDD, Jim is also president of warrior society development, LLC, a consultant with the university of Arizona and nominated filmmaker. Jim, thank so much for being with us today.

Jim Warne: Oh, wonderful to be here with you today. Thank you so much for the invitation.

Jeiri Flores: You were just telling us about some awards you just won for your films. Congratulations on that. I want to make sure we celebrate that first and foremost.

Jim Warne: Yes. I'm actually coming to you from Venice Italy. We attended a variety of film festivals throughout Italy and we actually won in Florence, which was wonderful.

Jeiri Flores: Can you tell me some about your motivations about when you were starting the Oyate circle?

Jim Warne: With my work in the past at San Diego state university, I worked there for over 20 years and started the circle for American Indian rehabilitation and education care, and that addressed continuing education services for tribal vocational rehabilitation counselors and administrators, as well as our non-Indian brothers and sisters working with state agencies that wanted to work better with their particular community that may have had a reservation or a high native population. So the 90% of my students were from Indian country, and that was wonderful to have that program that I developed at San Diego state university. And then I attempted retirement in 2015, to start my work in film and other advocacy work that I do for Indian country as well as with the disability culture. So that's a combination of two cultures that I see that have a parallel in terms of those two cultures, being our indigenous culture of the Americas, as well as our or disability cultures, they both tend to be misidentified or not included, just not even addressed in a lot of the policy and regulatory language. So I feel with those parallels of our cultures, it's really been a good satisfying career for me personally, so that I could work with two of the populations that mean a lot to me individually. My dad had MS for 37 years and used a wheelchair. So I was an advocate when I was a young person, still in seventh grade. And I didn't even know what an advocate meant, but I was for my dad who had a disability prior to Americans with disabilities act. So I was the one to go through the kitchen or the back doors to make sure we could get dad to the restaurant or to whatever location we're at. So, again, it's wonderful to be able to create programs, serving Indian country as well as disability.

Jeiri Flores: You know, the crazy part is that there's still places where you have to come in through the back door or through a kitchen to get to a restaurant. Something I relate to that you just said is, you know, I felt like I also was an advocate before I even knew what the word was that there even was a word that existed. so my parents migrated to the states from Puerto Rico and they don't speak English. So being one of the technically I'm a first generation American. And so being the one that speaks English automatically made me the translator, because if I didn't translate that my mom had no voice in the room, you know? And so we became invisible and people made decision for us. so I feel like in some shapewear or form I've been in some sort of advocate all my life. So I can relate to that on such a high level. And I can't even imagine the world without the ADA right? So I'm 31. So I was born right at the cusp of when the ADA, I was born in June the ADA passed in July. So like, I never knew a world without it. but the world doesn't necessarily mean it's super accessible, cause I've definitely gone through kitchens and back doors. And I mean, I don't now off of principle, but that definitely has sometimes been my reality.

Jim Warne: Yeah, of course. Generally people start with working with specific cultures without including individuals from those cultures. So they usually get it real on with their first attempt and then realize, oh, maybe we should include people with disabilities to help us get the parameters of ADA set. So obviously we had to go through those growing pains in the early years of ADA, but now there's a lot of leaders that are individuals with disabilities that are making great impacts and still a need for improvement. My wife was in a car accident and she was in a wheelchair for two years, even with all the ADA and all the knowledge I had of the law. It's obvious that certain states or certain organizations will do a minimum standard If that, and others will be a little bit more attentive to those access issues. So there's still more growth needed. But fortunately we have something, as you said for the past years that there's at least a law that protects from that discrimination.

Jeiri Flores: You said something about how folks are necessarily included. What does disability look like within the Indian culture? What does that look like?

Jim Warne: Yeah. From an indigenous perspective, none of our languages have a word for disability. So there's different terminologies that we utilize so that we can kind of explain to our traditional that may be English second language that you're obviously aware of yourself. By trying to identify a concept or a term that does not exist in our languages. So we are more literal in identifying the circumstance of that individual so that it falls under the umbrella of disability into English language. So many of our programs are titled like finds their place or finds their way and things of that nature where we kind of incorporate our indigenous perspectives of disability. So that there's that natural indigenous inclusive element because since we didn't have a war heard for disability, we did not discriminate against disability. So in the Lakota language, maybe huestay (7:04) which means lame or limp or hurt we may use that as a reference to let's say a warrior that got hurt in battle and only has use of one arm with still be that warrior, but would accommodate if you will using today's language to be able to instead of use a bow and arrow, but maybe a lamp with one arm. So again, when we see that disability as a language concept does not exist in any of our indigenous languages. Obviously there can be misunderstandings for particularly people that still live on the res and Indian communities where English is still a second language to many people. So we have to kind of explain disability from an indigenous perspective. And that's why I'm glad that I start these programs that are focused on indigenous Indian country in the United States so that we can address disability better because the unfortunate reality with Indian country is we have the highest rate of disability than any other cultural group in the United States. And a lot of that has to do with funding of Indian health service only being at 60% capacity. So obviously with healthcare only at 60%, there's going to be disabling issues with the healthcare system and emergency access. And my wife for instance, was on a reservation when she was hit by a drunk driver head on at 90 miles per hour. So it took quite a while for both the tribal fire department, as well as the state fire department to work together to get her cut out of the car and sent to the hospital back in town. So these are some similar challenges for rural communities, but it's even more so of a challenge because we have the highest rate of disability than any other cultural group. And a lot of that has to do with the isolation of reservations and the distrust for various programs, either in healthcare or disability services. So those are the unique challenges that the Oyate circle addresses in South Dakota.

Jeiri Flores: I think that's wild in my opinion, right? Because I can't imagine, and maybe this is cause this is my job, right. As an advocate, I feel like I'm always explaining something. But then when I think about like, when I speak in Spanish, I'm like nothing that I do makes sense in trying to find ways to describe people in a way that doesn't make them seem less than is a little more difficult for me personally, cause I'm not, maybe other people who speak Spanish better than I do. Maybe they have better ways of describing things.

Jim Warne: I think it's more just a human exclamation of explanation if you will, of what the person's going through with their particular disability. Fortunately, we're still, we're not using handicap anymore because that's an old English from the UK. They called people begging in the streets, handicapped because they had their hand in cap begging and many had disabilities. So by no means, is that a positive reference. it's improved with dis-ability, but again, it's still a label. I prefer to just identify the individual and maybe the circumstance from an indigenous perspective.

Jeiri Flores: For sure. I, I mean, I think that that's a really good way or different way to look at it, especially as, you know, you think of how people an age in life and the way people's legacies play out, you know what I mean? So when you, you get to a point where you're reflecting on someone's journey, it's better to talk about them in a way that highlights who they are, not what you know was wrong or, or whatever.

Jim Warne: Yeah. It's more human.

Jeiri Flores: For sure. And I think people with disabilities are actively working to achieve for personhood. So I mean, I think that's one of our bigger struggles personally that we are fighting for every day.

Jim Warne: And we must keep up the good fight as our elders.

Jeiri Flores: For sure. Can you tell me, how did the Oyate circle come about in what do you do there?

Jim Warne: Yes, essentially kind of a sub-center if you will, or a native F center for disability under the umbrella of the school of medicine and the center for disabilities. Dr. Wendy Parent Johnson was the former executive director for the South Dakota UCEDD. And she saw my film that I presented in South Dakota and she had me present it at the symposium for disabilities, cause I addressed some disability issues with historical trauma and things of that nature and my first film, seventh generation. And after she heard I was retired from San Diego state, she indicated that she wanted to hire me on at university of South Dakota. And I had just retired from academia and was going to concentrate on film, but she did convince me to do a part-time contract to help her create something similar to what I created at San Diego state university. So that is why I was contracted to write a few grants and fortunately all of them got funded. And then that provided a foundation for what we now have as the Oyate circle with various funding streams. One of them for instance, is I just got off of a zoom with Sisseton tribal vote rehab. We were addressing doing an advocacy and leadership training for families with disabilities. So we'll be doing that during the tribal nation veterans powwow and we have many veterans in Indian countries. So we felt that would be a great opportunity to utilize the powwow and everybody in the community being there for that celebration as well as holding a training regarding advocacy and leadership with disabilities.

Jeiri Flores: For sure. I mean the whole community is there, right? So there's so much opportunity for growth as a community and to share those kind of skills and, and the power of storytelling of advocacy. I think that would be so dope. I would love to just watch. as I've grown in this advocacy position, you know, you start to pick up different things and what really works best and what feels good for you so that when you finish, you feel like you've done a great job. So that would be so dope cause you already have all the people there.

Jim Warne: Yeah, it's wonderful. And I go, Hey, let's go where the Indians are. You know, that just seems logical. Generally, we try to schedule our meetings and trainings when there's other native events, for instance, every year there's the Lakota invitational and it's a basketball tournament that's grown into a multi-sport tournament, a language bowl, an art competition. So it's just youth from all over the, from Indian country gathering for sports arts and education. And so we do our tribal vocational rehab annual meeting during Lakota national invitational so that we already know there's going to be a lot of native people there. And then we set up our booth and our table advertising disability services for all the community members attending, whatever the event that they want to attend during that time. So we try to piggyback, if you will, to, when we know there's going to be a lot of native people in a particular area.

Jeiri Flores: How much do you feel like you've grown in this work and how much has it changed you and what are some things you wish you knew early on that now, you know it, and it just kind of makes it easier for you to do what you do?

Jim Warne: Well, obviously time and the working many years, I call them knowledge highlights my gray hair. But as a result of just that life experience and growth, working with various organizations, particularly the federal governments and the other state governments, municipalities, and then of course the multitude of tribal governments that I work with. So that multi governmental sovereign nation agreements that we have is key and integral to success with working with Indian country. And I feel I was born to do this just because of being the son of a strong res woman I say, she's from pine Ridge reservation and a very strong person. And she still teaches nursing at a South Dakota state university at 82 years old. Her only failure in life I say is retirement. Cause when she retired from Arizona state university nursing and moved back home, South Dakota state found out she was there and asked her to help. And now suddenly they have the native American nursing education center and they went from four native nursing students to of 40 native nursing students. So that's something that my brother and I both kind of follow in her footsteps as an advocate and an educator and as elders in training, my brother and I both work in the university's medical field as well. So we are kind of following mom's footsteps in honor of are people not only the Lakota, but my dad and the disability culture when he went through Ms. That obviously was a big impact on the family.

Jeiri Flores: I get that, my mom is my star player. She is top of cream of the crop. Like there is no one on earth in my opinion, like my mom. So I get that.

Jim Warne: That's kind of a tribal perspective if you will. That roots of representing our past generations, like having my mom here in Italy for the first week of our film festival tour was wonderful that she could join us. And so many people are impressed with her and her indigenous knowledge and ways of knowing. And they can tell that she's special. I'm obviously biased with that, but she is someone that makes a difference and just growing the nursing students tenfold in four years is a Testament to her strength.

Jeiri Flores: I mean, I think that's amazing as a person who loves my mom and has also have had the opportunity to travel with her and for her to watch me work, I just feels huge. Like you feel it in your heart, right? Like you're like, look ma, I made you proud. Like I did it. so I get it.

Jim Warne: Yeah. I was fortunate with both Dad shown me what true strength was when he was living with MS and the progressive nature of the disease. And, you know, just more of those quote unquote disabilities that he would encounter year after year. But he kept working as long as he could, take him an hour to get from bed to the bathroom, to get ready for work, where he would just inches way through. And we made our house accessible without any ADA knowledge. And so these things just were part of my life growing up. And then obviously it just made me want to advocate to be more inclusive. I was just kind of sharing that in kale, Italy, we just came from the kale film festival and that community is one of the most accessible communities I've seen in the world. And it's wonderful to see so many folks using wheelchairs or walkers or whatever assistive technology they may be using, but they're able to get to the beach. They're able to get over to cobble stones. It's just amazing to see a community that without ADA per se, is just more naturally accessible. That was another reality that I got with comparative of international access and value of people with disabilities. I feel that COVID 19 showed a very bright, ugly light on our culture in terms of valuing minorities and people with disabilities and preexisting conditions. And elders seem to be folks that no one cared about. And COVID 19 hitting all these populations harder than others should have been more addressed. Obviously I'm biased once again, being a native person with a disability and dealing with some of these things. But now it's really become even more of a motivator for me to leave more good footprints for this generation. because our philosophy is we have to represent seven generations behind in terms of our family and our people, our Oyate as well as seven generations ahead, the ones we will never meet. So what a wonderful philosophy and responsibility that I think all of us as two legged as human beings should follow to say, are we representing our ancestors in a good way, as well as our future in a good way. And that's, I think a bigger picture philosophy.

Jeiri Flores: I wrote a paper on self-determination last semester. I included the seven generation piece because it's so important that, you know, we be knowledgeable and conscious that we're building a tomorrow that's not for us. And, but we also have to celebrate those who brought us this far. That's exactly how I look at my parents. That's how I look at my mother, especially just because, so I said this to someone I'm not even my ancestors wildest dreams. Like, yes, that might be a thing, but I'm just even my elders. Like I'm their wildest dream because of how much I've been able to accomplish as a woman with a disability who also happens to be of color. You know, I've come a really long way. I mean, I have so much more to do, but for right now, like that just feels good to really be able to be in that space.

Jim Warne: Well, it's a wonderful situation. And to again, lead the footprints or the will print or the Walker prince, whatever prints you make is you must leave those prints for the future generations in a good way. So that's exactly what you're doing as an advocate, as a woman with a disability of color, all these additional challenges that you face, you are obviously a role model to others. And now that you're an elder in training, we'll call you even as a young woman, but those young ones are watching you and you're showing them what can happen. And that is where I think the peer aspect of having more of us as people of color with disability in the field is important so that we can be those not necessarily role models, but at least examples of what can be for the next generation.

Jeiri Flores: So I think that this is a perfect segue into my last question for you as you've grown in this and as you've done a lot of work and as you've really honed in on what kind of future you want to leave, what have you learned about building authentic relationships so that it's a mutually beneficial exchange for not just you, but for also the folks that you are helping?

Jim Warne: That is key because we're such a multicultural society in America. And as a result of the George Floyd murder and the sudden explosion of cultural elements in America, that's also impacting the culture of disability and inclusion and just doing the right thing for our fellow human beings. So I think we're at a time now where I can do what I can in terms of sharing stories through the medium of film for Indian country, as well as disability, but also in curriculum development and getting more inclusion and not only being included by getting the correct information out there. I often say one of my future films is going to be titled ignorance by design. And that is addressing what Americans know about our culture as indigenous people. When I travel to Asia and Europe and I've been fortunate to travel a lot, Asians and Europeans know more about indigenous Americans than Americans do, and that's a result of our curriculum. So it's something that I want to improve upon as an academic that we at least have a better representation and more truth in our curriculum. So that my son I took to Ireland, so he could experience you know, an international trip. And I warned him that, Hey, you're going to have a good an experience as a Lakota in Europe. And he was going, what, you know, he didn't quite understand. And then after our trip, he goes, dad, they love us over here. Why don't they love us back home? And isn't that a kind of a terrible thing for my son to realize at a young age, but again, it's curriculum, if you're not going to tell all the truth about our history and do the comparative analysis of genocide, because as a result of Columbus being lost in the Caribbean, he never stepped foot in America. Many people don't even know that, but as a result of his contact, if you will, with indigenous America, over 90% of us died as a result in 400 years. So that is, and by any definition, genocide. but we do not address that in America. We address it in Europe and other countries.

Jeiri Flores: I think you're right. We shouldn't have to go anywhere other than home to feel love, to feel celebrated and supported. I'm glad your son had that opportunity.

Jim Warne: It would be wonderful if we would just know the truth in America about our people. My mom tells a powerful story. She lived in Indian camp in rapid city, South Dakota, cause in the early 60's Indians weren't allowed to live in housing yet. So there was a kind of a refugee camp along rapid Creek where Indians lived so that they could go to school or work at the lumber yard or in the kitchens, but we are not allowed in the stores or the restaurants. And my mom at eight years old is all excited to go to the town for the first time with grandpa, with holding his hand and then coming up to a store and she was just learning to read and she saw the sign, no Indians allowed. And at eight years old she asked grandpa [25:00 inaudible] why? And he very eloquently said it's because they do not know who we are. And in many ways, 75 years later, they still don't know who we are. until we tell the truth of our history, We cannot move forward together.

Jeiri Flores: I want to thank you so much for being here with us today for sharing your story, for sharing, you know, pieces of your mom with us. I truly appreciate that and appreciate the conversation that we've had. I think that's it for us. Thank you so much.

Jim Warne: Yeah. Just one more shout out to university of South Dakota and then our new director, Dr. Eric Kurt, he's been fantastic because he saw the need for us to be national. So he's really been marketing the Oyate circle to national organizations. So we're working with maternal child health. We're working with head start national program in DC. So we're doing national work now. And that's something that I kind of wanted for Oyate circle is to become that national hub for native disability issues.

Jeiri Flores: Well, I wish you so much luck, and if there's anything that I can do to help out feel free to reach out to me. I am down to help you in any way.

Thank you for tuning in to AUCD Network Narratives. If this story has inspired you to make a change at your center or program, use the link in our show notes for resources and tools to help you lead on. We'd love to connect with you. So visit the AUCD website and click on the submit your story button at the top. We hope to hear from you soon.

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