Empowering Indigenous voices: The fight for data sovereignty

Gwen Phillips is a Ktunaxa Nation activist and advocate for the Data Values Project and the Data Values Manifesto, supported by the UN Foundation’s Global Partnership for Sustainable Development Data.

In the mid-1990s, I embarked on a career in education with the genuine belief that I could make a difference in the lives of First Nations children. Little did I know that a profound experience would lead me down the path of advocating for Ktunaxa data sovereignty, forever changing the way I viewed the world of data and its impact on Ktunaxa and other First Nations.

At that time, I questioned the effectiveness of the data used by provincial and federal governments to monitor First Nations students’ success. I felt the data being collected did not truly address the root causes of the challenges faced by our people. What was driving our children's success rates or lack thereof? This question echoed in my mind and eventually led me to collaborate with university researchers to uncover the truth.

Our journey began by collecting data on all school-aged Ktunaxa children and teens. What we discovered was both eye-opening and disheartening. 40% of Ktunaxa children exhibited signs of foetal alcohol exposure, a figure far higher than the Canadian national average. Yet, the official classification of Foetal Alcohol Syndrome (FAS) remained as a "high-cost, low incidence" educational disability, disregarding the stark Ktunaxa reality.

It was a turning point for me, a moment when I realised that the conventional metrics employed by the Canadian governments failed to reflect the struggles and strengths of Indigenous Peoples. The very system designed to inform wellbeing policies for our people was, in fact contributing to feelings of worthlessness that often led to self-destructive behaviours like alcoholism and addiction.

The impact of this flawed system became even more personal when a young woman, a participant in our study on foetal alcohol exposure, returned to request documentation of her disability in her mid-20s. Her intention was to apply for employment support, but we soon discovered that the records had been destroyed, as they were treated as research records rather than personal health records. It was a heartbreaking moment when I had to explain to this young girl that I couldn't retrieve her records.

This experience was the catalyst for the Ktunaxa Nation's journey to assert our right to own and control our own data. The ability to determine what to measure and how to use that information is a fundamental aspect of our right to self-identify and self-govern. This struggle brings us to the core question:

Who has the right to define you?

The Canadian federal government's reliance on a top-down approach to data collection and extractive reporting processes has perpetuated the devaluation of First Nations' strengths, culture, and diversity. Control over metrics, from data collection to analysis and policy formulation, is vital for our identity and self-determination. Setting the standards for data collection and usage is critical. The Ktunaxa Nation and other First Nations have worked tirelessly to ensure that our sovereignty and autonomy are preserved through data.

The journey of the Ktunaxa Nation has been about defining values and measurements that align with our vision for a stronger, healthier, and self-sufficient community. We have developed measurements that reflect progress toward these goals. Measurements should be attached to the things you value. If we value thriving, healthy, and strong communities, then it's time to shift our focus and measurements in that direction.

I have had the privilege of working alongside other First Nations and officials at various levels of government to craft data policies that respect and honour the rights of Indigenous Peoples. Our struggle is about reclaiming our identity and dignity, asserting our sovereignty, unique cultural heritage, and showcasing our profound knowledge of the local environment. We have the power to control our own narrative.

In the past year, I refused to answer Government of Canada census enumerators who arrived at my house, even though it was illegal. For years, the Canadian federal government promised to recognise Indigenous data sovereignty, but there was little evidence of real change. Instead of silently complying, I registered my complaint and asked someone from Canada's National Statistical Office to contact me. To my surprise, someone did, and we are now working with Stats Canada to establish First Nations data sovereignty principles for census data.

This is the lesson I wish to share with marginalised communities and those facing historic oppression: you have the power to make change. Assert your data sovereignty as individuals and as a collective. It is through this assertion that we can redefine our identity, regain our dignity, and stand proudly as distinct and thriving Indigenous Peoples with unique cultural heritages.

In a world where data drives decisions and policies, Indigenous data sovereignty is the key to preserving our culture, heritage, and identity. It is a journey of empowerment and self-identity, and it is our responsibility to seize this power, write our own narrative, and control our own destiny.