Across Turtle Island there are many Indigenous families who are raising children with a disability. Personal stories can create culturally safe platforms for Indigenous parents raising what Blackfoot Elders have referred to as Sakakiitsimaitapiiksi (our treasured children), to add voice to their experiences. The purpose of this article is to share the personal stories of two mothers parenting their children with the Blackfoot teaching of Akomimoksin (love). Mothers are givers of life and often assume the primary role of caregiving, educating, navigating and advocating for their children's holistic needs. When a mother wraps her arms around a child she creates a circle and located within the sanctity of this shape is the individual she would do anything to protect. It is within these responsibilities that the intersectionalities of Indigeneity and disability are discussed and choices are made. The stories of two mothers formulating decisions designed to reclaim and reculture for the sake of their disabled Indigenous child is shared. These stories will also address similar themes that have predicated systemic encounters, transformed perspectives, resonated hope, and developed awareness that may guide others on a parallel path. It is through Akomimoskin that disability has been able to become ability.
A circle is a powerful symbol within Indigenous communities. Its shape is a representation of wholeness and interconnectedness, with individuals viewed as equals, whether able bodied or not. It is the conceptualization of strength that has allowed us mothers to embrace, love and advocate for our Blackfoot children with disabilities. Indigenous parental practices are distinct and diverse based on the location, culture and language of the community. Traditional child rearing and worldviews are taught through the methodology and concepts of storytelling, traditional teachings, spirituality, land connection, language, ceremonies, songs, and role modeling by the knowledge keepers of the community and family members (Bastien, 2004; Little Bear, 2000). Indigenous parents demonstrate resilience in adversity when raising a child with a disability, although those stories are sparse in the representation through literature (Durst et al., 2006; Lindblom, 2014). Indigenous storytelling is an alternative in addressing deficit-focused literature; it identifies challenges parents have turned into strengths to raise their children with disabilities in their community (Lindstrom et al., 2016; Muir & Bohr, 2014). Utilizing storytelling highlights parental perspectives and changes the narrative of pathology to empowerment, and fosters cultural continuity through reclamation and honoring Indigenous knowledge through sharing stories of community members, Elders and Indigenous parents (Archibald, 2008; Blaeser, 1999). The personal stories we share stem from the Blackfoot teaching of Akomimoksin (love) as they are our lived experiences in raising our Sakakiitsimaitapiiksi (treasured children).
We locate ourselves within this article to show the cultural perspective we are grounded in, our accountability in and respect for the work we do in our community. We are both mothers, scholars and teachers who advocate for the wellness of our children, youth, students and families. My name is Pearl Yellow Old Woman and I am rooted in two Indigenous communities in Canada. My paternal family are Blackfoot and my maternal family are Oji-Cree people. I am a mother of three children with one adult child diagnosed with autism. My name is Stacey Running Rabbit. I am a settler who married into the Siksika Nation in Alberta and have lived in the community for over half of my life, thus having earned our nation members referring to me as ksiksinatatsi Siksikawa (white Blackfoot). My Blackfoot name is Miisammipiksaaki (Long time sacred bird woman) and was given to me through ceremony by an Elder Knowledge Keeper. I am a mother to seven children, with my youngest child diagnosed with diplegia cerebral palsy. Non-Indigenous and Indigenous scholars can work together with their worldviews that empower and work towards fostering relationships that contribute to reculturing perceptions of parenting within a circle of Akomimoksin. Reclaiming who we are within the broad context of indigeneity thus allows us to inform through the Blackfoot way of life (Siksikaitsitapiiysinni) philosophy, to honor in a truthful way with good spirit.
In the early hours of a rainy summer morning, I became a mother at the young age of seventeen. There were many mixed emotions stirring in my spirit as I heard her cry when she entered this world. I felt happiness, joy, and relief—all overshadowed with a sense of shame for becoming a teen mother. Post-partum set in and I didn't want to hold my child despite the encouragement from my mother who was present through it all. The weather on the third day after her birth was gloomy, dark, and windy which amplified the spattering of the raindrops against the hospital room window. I was alone with my thoughts when I heard soft cooing noises from the bassinet placed beside me. I peeked in and there she was, my beautiful daughter who was not crying but cooing with happy baby noises looking up at me. I picked her up, smelled her, snuggled her close and Akomimoksin connected our spirits. There were many hardships for us both as I struggled with learning how to parent as a teen mother, in poverty and finishing school, and accepting my child being diagnosed with autism. Our Blackfoot Elders often say that our children with disabilities should be called by their names as the label does not define their spirit and they are sacred from the Creator. Living on the reservation presented numerous challenges in pursuing equitable education, health services, specialized services, accessibility, and funding for respite or family support resources. The barriers stemmed from systemic discrimination in governmental policies, such as the 1876 Indian Act that made us a 'federal responsibility' due to us being 'status' Indians and living on reservation lands. A jurisdictional battle of funding for services ensued between the federal and provincial governments over the next few years. I had been advised on many occasions to surrender my child to children services so that she would be able to access funding and services. I argued that there is no better service for a child than a mother's love. Unfortunately, my experience in encountering structural barriers for funding and resource allocation were common for Indigenous parents residing in their communities raising a child with disabilities (JPWG, 2015; Johnson, 2015; Shackel, 2008). In fear and desperation, I made the decision to leave my family, cultural supports, community and home to move into the city where we reside to this day.
The systemic racism and oppression in our new urban setting were continuous as I advocated for specialized educational, health, and family supports. We encountered refusal of services due to funding or structural policies that created barriers in maintaining the supports we had in place. This eventually led to my child being heavily medicated and hospitalized. When I looked at my then fifteen-year-old daughter sitting and drooling in a wheelchair, my heart broke. My child who loved to ride horses, go to camp, laugh and smile was not present; she had a faraway look in eyes; her heart, mind and spirit had left, leaving only the physical being of her holisticness. The health professionals stated she was medically stable and could go home but this was a different child. I wanted my daughter back. I contemplated giving her up to children's service. I felt defeated and exhausted. I was tired of fighting the system, doing it all alone (my family supports were burnt out), and enduring all the hardships that accompany the label of autism. On the day I was going to surrender her to children's services, I kneeled down beside her, held her hand and looked into those lost eyes. I gently and repeatedly called her by her spirit name with tears in my eyes. As I was going to leave, I saw her spirit return in her eyes, she came back to me, through her groggy medicated state she stared right at me. This was the day that changed our lives forever for I learned that the spirit was stronger than any medical diagnosis or label of disability. My daughter showed me how to be strong and persevere in her ability to live on her own terms. Today, my child has her own supported living situation, receives resources and funding, and engages in music, art, and equine therapy. Most importantly, she is happy and defines what autism is to her in the journey of life. Although we left our Blackfoot community, we still carry the teaching of Akomimoksin in our hearts and one day we will go home as we are Siksikaitsitapi (Blackfoot people).
My upbringing was middle class in an urban center in the province of Alberta. We were a single-income family, as my mother was a stay-at-home parent, with my father working to support us. After graduating from high school, I immediately attended post-secondary school, earning my first degree when I had just turned twenty-one and returning to do my second bachelor's shortly after. I have been an educator now for over twenty years, having worked in both the federal and provincial systems. Along the way I met and married into Siksika, moved into the community and became a mother. Our youngest suffered a medical episode when he was just 6 weeks old. He was in the Neonatal Intensive Care Unit for 4 days, three of which he was in a coma. On the last day in this unit as he was awakening he started to have seizures, lasting minutes in length and during which he would quit breathing, therefore requiring a respiratory team to be bedside to assist. Our stay in the hospital lasted three weeks, during which time we were separated and isolated from our extended and immediate family. There was a great sense of loneliness as we sat helplessly by watching multiple medical specialists trying to provide a formal diagnosis for what our son was experiencing. After being seven days seizure free we were discharged and thus began our journey of parenting an Indigenous child with a disability.
Language and discourse can at times dictate perception. Being Indigenous and having a disability can be considered a double whammy for many as you inhabit two distinct societies which continue to perpetrate marginalization. As one scholar has put it: "disabled people are an oppressed minority group facing a host of discriminatory practices" (Titchkosky, 2008, p.51). As a mother I envisioned a life for my child in which people accepted their uniqueness and viewed them not as disabled, but rather as the Elders called them: Sakakiitsimaitapiiksi (treasured children). Yet in a Eurocentric worldview labels prevailed. I faced numerous challenges as to how we could best meet the holistic needs of our children. Deep conversations about systemic barriers that we were encountering and what choices we should make were frequent in our household, as we resided in my husband's First Nation community. Numerous trips into our children's hospital and development centre started highlighting the discrepancies and inequalities that we were about to experience. There were jurisdictional barriers and a multitude of discussions relating to which services we were eligible for and those for which we were not eligible. Early intervention programs were not accessible due to our residence's location, and it was then that I truly embraced the need to become a voice and advocate for not only my son but other Indigenous children with disabilities who were still enduring marginalization, at the hands of our federal government. Choices were made by our family that we would not leave our community to seek equitable services that non-Indigenous children were entitled to, rather we would continue to reside where we were, where his culture and extended family would surround him, and I would engage in advocacy that appears to be never ending. It was imperative that voices which had been silenced by years of oppressive practices began to be heard.
People can assign negative stereotypes and connotations to disability, and as we reculture non-Indigenous professionals, educators and scholars, it is imperative to broaden the discourse so that it is more reflective of culturally appropriate. During a conversation with a provincial agency who was providing financial support to our son, discussions arose regarding respite care. In accordance with this agency's policies and procedures respite providers could not be a relative, yet within the Blackfoot ways, it is stressed upon that family cares for other members. How could I entrust an individual who knew little about my son's culture and traditions, to act in the role of a parent? This was not an isolated incident and required multiple dialogues that articulated and reinforced the concept of Indigenous child rearing. Through redressing expectations this agency's personnel gained a perspective relevant to our son and that potentially have the ability to impact the systemic barriers they have implemented. We have continued to advocate for our son. We have moved from a place where we were told that our son would have limited vision and probably never walk resulting from the brain damage he suffered from the undiagnosed medical emergency, and we were worried about his future. We see now that resiliency has prevailed. Our son's will and spirit remain unbroken. He still resides in our home community, and while there have been many travels into an urban centre an hour away from us for his countless and at times weekly appointments, procedures and one major surgery, they are not the whole of his life. Our son participates in para-sports, attends a mainstream provincial school and donns his regalia to 'dance' in our local powwows, too. My child continually reminds me what in life I need to value, and that is unconditional love.
Our Final Message
We have been gifted with Sakakiitsimaitapiiksi from the Creator and we are honored to receive these blessings. Through the Blackfoot way of life (Siksikaitsitapiisiini) philosophy, the rearing of our children takes the effort of all family members and our community, Elders call this Nistawatsimaan (raising our children together). In our journey of motherhood we have met other Blackfoot parents walking a similar path and the resilience in their parenting has greatly inspired us to share our stories.
The adversities we face are complex and as our family members remind us, it is through Akomimoskin that children labelled disabled in the Western perspective become Sakakiitsimaitapiiksi in our community. We are parents of children that overlook the label of disability and help them to embody their Blackfoot identity. We guide them to face their daily challenges, surrounded by our relations. Through our stories we have highlighted our difficulties, experiences albeit positive and negative, as well as overcoming barriers that are achievable, when Blackfoot ways of knowing are allowed to flourish within the sanctity of the circle of love. Transforming perspectives and creating open dialogue allows voice to be heard, actions to be taken, and implementation of Indigenous worldviews as a part of the reculturing process. Our personal narratives are a reflection of our journey, in which our vulnerability has been expressed in hopes that the Western world can reconcile their ideologies, through a lens which is not theirs, and so the parents of Indigenous children with disabilities are strengthened and given guidance through the traditional means of storytelling."
Not every shoe fits the same person, and in the case of Sakakiitsimaitapiiksi it is the moccasin. Each pair is unique, often hand crafted with meticulous and intricate details. They are symbols of dedication, indigeneity and love. They embody strength and wholeness that have wrapped and protected our children along their journey, just as our arms have encircled them with Akomimoksin.
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