Indigenous Peoples and Disabilities: Navigating Everyday Life in a Pandemic
Shekoli, my name is Margaret King. I’m a Tribal member of the Oneida Nation, a federally recognized Indian Nation in the United States. I live in my community, otherwise known as a reservation, which is located near a growing urban area in Wisconsin. I am an Indigenous single mother of five children and grandmother of three. I grow our own Indigenous food seasonally, which is important to our family. I am a member of the Lotinuhsyu?ní (People of the Longhouse) and belong to the Turtle Clan.
For work, I’m a Tribal Disability Benefit Specialist with Great Lakes Inter-Tribal Council, which is an Indigenous-led nonprofit organization in Wisconsin. We support Indigenous people with disabilities to gain access to food, housing, and economic opportunities through government benefits. My job has allowed me to connect Indigenous Peoples from all Tribal backgrounds in Wisconsin to appropriate social and human services to meet their basic needs. This includes food and housing, in addition to regaining cultural identity and language that sustains self-preservation.
While I wear a few hats both personally and professionally, my most important job is taking care of my son, who has special needs. During this pandemic, it has become more challenging as our entire household is mandated to stay home. I am both a mom and an employee in the same space, serving my clientele from home, facilitating my teenager’s online education and other daily activities. I teeter on the needs of work and teacher at any given moment in time. Most days I say, “School’s open, at home!”
Margaret King’s son, Hudson Francour, collecting maple syrup, a traditional food for Oneida people.
I first prepare my son, who has autism, to organize his education. This is more than checking his email and reading it together; it’s picking up on social cues to see if he can sit or concentrate. If he is not feeling awkward, overstimulated, or just tired of everyone being home, we work together to finish his schoolwork. Checking in on emotional and readiness cues and validating them are now a part of our daily opening. His emotional health is more important than getting things done. I often ask myself, Is he happy? What can be done to build his confidence? Recently, he’s more relaxed and not so anxious. His work comes before mine as we lay out his schedule in his home workbook, glancing at the next online reading assignment, school video chat, exercise, and of course, our chore chart at home.
My son grew up nonverbal, and in order to get him to a place where I felt he could function among us, I put him in therapy so he could learn to speak and communicate his needs to function in society. This meant years of outcome-based treatment and attaining “correct” language. He is not able to fully communicate his needs as someone is always there to correct him or prompt him on appropriate responses. In between these times, he also had much anxiety. My anxiety was heightened also as I wondered who would accept him and how he would be able to work in society.
Hudson Francour in his graduation gown. He will graduate this year from Syble Hopp School, Class of 2020.
Today, he has limited speaking abilities but often looks to me to assist him on how to respond to questions. I am working on freeing him of this “correcting” and allowing him to give whatever response he wants. I can imagine in his mind the freedom that will exist to be himself without a concern about how he’s being perceived. What if he’s thinking, “Whatever I say might be taken wrong, so I’ll just be quiet and let someone else say what’s needed?” What a huge burden to carry everyday. I had never thought about how this affects his self-confidence.
Our Indigenous youth with disabilities need the confidence to be who they are without being continually corrected to fit into our society norms by strict therapeutic methods. They need to have laughter, joy, creative expression, and confidence to ‘just be.’ Our job as parents and teachers includes learning about our world and ourselves, but also to acknowledge our children’s emotional health and confidence.
A beautiful joy of expression and belonging came to us this past winter. My son became a manager for a local boys Indigenous school basketball team. For years, he played basketball for his own home team with disabilities and received an opportunity to help our Nation’s basketball team by getting water, documenting statistics, and videotaping games. He told some of those players about his own upcoming games. Soon enough, a few of those boys started talking about how they should come watch my son play. Before long, they all showed up at his game and he was so proud that they came to his school to watch him play. Later, the coach from the team my son manages said that was the least they could do for him: “We appreciate how he volunteers for us. He is truly a team player!” My son and I were very proud that day. It was a true testimony of how we, as Indigenous Peoples, take care of our own and foster confidence and belief in one another. Some words in our language that describe this are Kahletsyatlu’sla (the heartfelt encouragement of the best in each of us) and Kanolukhwa’sla (compassion, caring, identity, and joy of being).
Selecting an occupation in the disability field and having a child with disabilities is a handful, yet rewarding. Recently, I helped my community by sharing information about an agriculture group that’s delivering cheese and milk to food pantries. As a result, our Tribe’s access to food is improving to serve those marginalized by limited housing, inability to work due to the pandemic, or limitations of physical or mental disability.
A client of mine recently shared with me their physical challenges of pneumonia while being encumbered by diabetic ulcers and depression. They experienced more challenges when learning that their aunt passed away as well as that their uncle attempted suicide. They told me that he was the only one helping deliver food to their house as they couldn’t get out of the house with their condition and the COVID-19 stay-at-home order. Recognizing it is our way to help one another, I researched local grocery stores in search of those who can access food directly to their doorstep and connected them with that resource. They were grateful because they felt like their health was crumbling and had no positive outlook for tomorrow.
My reason for helping Indigenous Peoples with disabilities is clear. I work for them so they can catch a break. This includes accessing food or helping them with their mental health or securing financial stability through a government program that helps pay for food and housing. In addition, processing paperwork for government benefits requires that my clients have medical providers that provide substantial and consistent care. Getting to a doctor regularly isn’t easy when you are unable to get out of bed, shower, or even leave your bedroom. My clients’ mental health causes them to sometimes think someone is watching them or even to hear voices that aren’t really there. Transportation is another issue they face. On our reservation, cars break down, friends cannot always give a ride, and local transportation is often late. Getting to and from appointments isn’t as easy as one might think. Our people face roadblocks like these in addition to poverty, alcohol/drug abuse, and the disruption of our cultural identity, which is a result of hundreds of years of colonization.
I also refer clients to mainstream counseling at a clinical mental health facility that uses talk therapy and prescription drugs. Separately, I enable clients to use traditional counseling at A.se wa?ethitsistu.ny^hse? (We make new, we make their fire), a program that uses our traditional ways of being and knowing to promote healthy relationships, medicinal plants, cultural stories, and ceremonies to encourage healing.
Days during this pandemic are monotonous and long. The cold, rainy, and cloudy days of April in Wisconsin add to the dreariness. Fortunately, my daughter attends our Tribal school and shares with us daily motivational messages from her Principal to keep our spirits going and reminding us that encouragement is about Ka?tshat^sla (strength of belief) and remembering our core values: Kahletsyatlu’sla; Kanolukhwa’sla; Ka?nikuhliyo’ (The openness of the good spirit and mind); Kalihwi:yo’ (The use of good words about ourselves, our nation, and our future); and Yukwatsi’stay^ (Our fire, our spirit within each of us).
Supporting and empowering my son for the last 18 years has fueled my passion to support other Indigenous Peoples with disabilities. Their needs are often neglected, forgotten, or are under-supported. At times, they lack the social, political, and economic power to make good decisions that impact their well being because the systems we are forced to operate in do not support them. Let us remember to extend love, compassion, understanding, and gratitude to our relatives who struggle with disabilities. When we uplift the most marginalized, it makes our communities even stronger.