Perspectives of a Young Diné Caretaker

FormalPara Key Points

• As a caretaker for my father, I saw him experience structural barriers to accessing quality healthcare.

• Culturally appropriate healthcare is of the utmost importance. Access to a Navajo-speaking nurse provided my father with a sense of being cared for, acknowledged, and appreciated.

• We need more Indigenous researchers addressing Native health inequity issues to reduce negative health outcomes and help decolonize the cancer research space.

Yá’át’ééh shí eí Marc Emerson E níshyé’. I was born on Diné Bikéyah (Navajo Nation). My mother is Jemez, Ma’iideeshgiizhnii (Coyote Pass). I am born for Tsenahabgiłnii (Sleeprock people). My maternal grandparents’ clan is Ma’iideeshgiizhnii (Coyote Pass), and my paternal grandparents’ clan is Hoganłani (Many hogans).

This introduction identifies me with my ancestors and the natural world. Beginning with the Diné protocol is important and helps integrate my Indigenous identity with my personal and professional identity, which is a central theme to my current cancer-related work. Bringing my Native identity into my research grounds and enhances my work, which allows me to be more fully myself in an academic role. This practice, rooted relationality, and kinship are what my father taught me as I grew up on the family farm on the Navajo Nation.

My father was a brother, a son, a father, an Elder, a mentor, a relative, an observer of kinship, an artist, a writer, and a teacher. While I share these labels, I can hear him say that they are not needed for identity and permanence and that one’s identity is more rooted in knowing and expressing who we are via culture, language, and heritage. My father would say that he is Diné, and there is power in that—it makes him strong. For my father to be truly known, people would have to know that he was Diné. Using the Diné introduction was one way in which he spoke true to who he was and now I do the same. This quote from him exemplifies his thinking of strength (Fig. 43.1):

It is an act of decolonization to arrive at this place of beauty and to want to protect it. It is an act of decolonization to sense and experience the Great Mystery and the harmony, respect, and balance that ceremonial process offers. We decolonize when we embrace family members, friends, community members, and celebrate solidarity. It is an artful act of love and resistance to declare that colonialism, despite all its insidious practices of conquest, subjugation, and control, still did not or could not colonize such ancient feelings or methodologies that have a loving and compassionate propensity to restore the human soul and spirit in a very special way [Larry Emerson, my father].

Fig. 43.1

My father, Larry Emerson. (Photo: Family collection)

I grew up on the farm, playing and learning the Diné ways of knowing. I assisted my father in ceremonies and learned how to take care of the land, the plants, and the animals we had on the farm. It was his strong opinion that the Beauty Way teachings and philosophy were the best gift that he and the older Diné generation could give to the younger, upcoming ones. I remember he would get me up in the early mornings to run to greet the sunrise and put down our tobacco on the earth as morning prayers. I remember when I would return home, we would enter the hogan to share, sing, and learn (Fig. 43.2).

Fig. 43.2

Sunrise at my father’s sunhouse (left) and the hogan (right). (Photo: M Emerson)

During my cancer-focused epidemiology PhD program, my father was diagnosed with late-stage stomach cancer. As an only child, I moved home back to the family farm to be his caretaker until he passed. For much of the time I was his sole caretaker, it was difficult as it was also hard to care for myself. Additionally, because of our rural location, accessing care was difficult. It was only when we had a caretaking team of friends and family that the caretaking was more manageable.

During his care, we experienced many of the structural barriers to quality healthcare that exist in the Navajo Nation. The Navajo Nation is one of the largest Reservations in the United States. It consists of more than 27,000 square miles, which is roughly the land size of New Hampshire, Vermont, and Massachusetts combined. Yet despite its geographic size, it has fewer than 15 grocery stores and only eight Indian Health Service units. The delivery of care via the Indian Health Service is complex, fragmented, and limited due to consistent underfunding. When my father was receiving cancer care, all of his medical consultations and cancer surgeries were at the University of New Mexico’s Comprehensive Cancer Center in Albuquerque, New Mexico—210 miles from the farm. Even his subsequent chemotherapy appointments were a 28-mile drive to a border town.

Other environmental exposures exist here, including over 500 abandoned uranium mines and contaminated seep water that residents and livestock can drink. Like the Navajo Nation, other Tribal nations can face similar barriers, including geographic remoteness, poor infrastructure, limited transportation, and limited healthcare provider availability.

There are pathways to providing better care and promoting health equity. Culturally appropriate care is of the utmost importance. For my father, some seemingly small things made the world of difference. For example, the hospice nurse who drove to the farmhouse to care for my father (and check in on me) spoke Navajo. Under the relationality of the Navajo clan kinship, she referred to him as a family member. This seemingly simple practice made my father feel taken care of, seen, and valued (Fig. 43.3).

Fig. 43.3

Map showing travel distances for my father’s cancer care. (Map: C Lourenco)

The emotional impact of losing my father to cancer fueled my commitment to cancer prevention and control. Now, my professional goal is to combine my integrative knowledge of cancer epidemiology methods with Navajo epistemology to define health-related interventions that can help decolonize the cancer research space. We need more Indigenous researchers addressing Native health inequity issues to reduce negative health outcomes.

These efforts are not only an important part of how I contribute to diversifying the research community; they also are critical to my personal healing process. My father, himself an academic, was forced to suppress his Native identity at an early age when he and his siblings were forcefully removed from their family and sent to Indian boarding schools. This harmful, racist action against the Navajo Tribe was one of the many actions intended to disconnect individuals from their Native identity. I grew up seeing firsthand the lasting impacts of these traumas on my father and others. By reconnecting with his Native identity later in life, my father was able to heal and powerfully reverse these traumas by encouraging me to embrace my Native identity while remaining competitive in a modern, Western context. His encouragement was particularly meaningful since he fully understood both the context of my Native identity and the value of academic research, which is something I greatly value. I am committed to actively practicing my father’s values, applying the lessons he taught me, and doing my best to live out his legacy in my life and in my work.