Building Up Communities, Breaking Down Data: A Community Partnership for Data Disaggregation
A blog post in collaboration between LCHC staff, Rosa Flores, Paola Ilescas, and Building Up Communities, Breaking Down Data Partners
As the daughter of immigrant parents from Puebla, Mexico, my first language was Spanish. Later, after second grade, I learned to read, write, and speak English. However, growing up, I remember often trying to keep up with a different language my parents spoke while cracking jokes at the dinner table with my aunts and uncles or while making their coffee in the morning — Nahuatl. Specifically, the variation of Nahuatl spoken in Tepatlaxco de Hidalgo, Puebla where my family is from. Whenever I’d inquire about what my parents were saying, they’d smile big and proudly say, “We’re speaking our language.” They’d try to teach my three siblings and me different words and phrases so that when we visited our grandparents, aunts, and uncles who lived in Puebla during the summer, we’d be able to understand even just a little.
Like many people who migrate from Mexico to the U.S., my parents have a rich and nuanced relationship with language. For too long, there has been a false narrative that Spanish is the only language spoken by people who have roots in Mexico. CBDIO, CIELO, MICOP, and LCHC are trying to dispel the narrative too often perpetuated for entire communities in Mexico and further south of the country. Ultimately, the narrative is harmful and contributes to the invisibilization of people who speak Indigenous Mesoamerican languages, including those who live in Guatemala, El Salvador, Honduras, and Nicaragua.
What happens when people migrate to the US? There is a lack of institutional understanding of the vastness of languages spoken by folks making enormous cultural, political, and economic contributions to our nation. Language is not only a linguistic issue but also a human rights issue. When languages are systematically erased, inequities are created, and communities are further marginalized. Furthermore, disparities occur due to a need for more information and data when looking at the Latine community as a monolith and simply focusing on securing that information in Spanish. This rich diversity in the Indigenous and Latine communities requires data disaggregation or the separation of compiled information into more detailed pieces to uncover and understand underlying trends and patterns within different Indigenous and Latine communities. In the context of public health, if we are to keep all of us healthy, we must understand where opportunities and challenges lie for specific communities.
In 2024, LCHC committed to advancing health equity through data disaggregation in Indigenous MesoAmerican and Latine communities through community power-building and policy change. In a partnership between Centro Binacional para el Desarollo Indigena Oaxaqueño (CBDIO), Comunidades Indigenas en Liderazgo (CIELO), and Mixteco/Indigena Community Organizing Project (MICOP), and LCHC, we are seeking to exchange experiences and knowledge of our communities and the systems we operate within to take on data disaggregation at the statewide level. Understanding that the case for data disaggregation is also the undoing of the “Spanish-only” or “Spanish is enough” narrative that has been widely accepted by many public institutions with systemic decision-making power. The Building Up Communities, Breaking Down Data group, made up predominantly of leaders who identify as Indigenous, is discussing topics such as positionality, colorism, white-dominant culture, and racism as a public health issue not only theoretically but as problems that are constantly lived through and experienced.
Carlos Maldonado, an active group member, has shared, “During my time working with California Rural Legal Assistance, I realized the difference that many people of Indigenous origin [experienced when] obtaining medical and public services. On many occasions we had to intervene so that people received services, the reasons they were denied is because of speaking different languages and sometimes because of racial identity.”
The Building Up Communities, Breaking Down Data partnership kicked off at the beginning of this year and runs for 8 consecutive primarily virtual, bilingual sessions and one day of action in Sacramento. Our four organizations represent various parts of the state, such as San Diego, Los Angeles, Oxnard, Santa Maria, Salinas, and Sacramento. The inaugural group consists of 11 community leaders with vast experience in providing direct services and directly engaging with Indigenous and Latine communities. With this experience, we look forward to sharing what is learned in this incubator with broader communities, including Indigenous and Latine.
Juan Carlos Diaz, Community Advocate with MICOP and an inaugural member of the collective shares about his experience, “Me gusta porque conectó con algunas de las historias de los compañeros, y porque es importante que se colecten los datos ya que mucha de nuestra comunidad necesitan poder tener acceso a idiomas en los servicios públicos al cual ellos acuden para apoyo para que puedan tener una buena calidad de vida.” (“I like it because I relate with some of my colleagues’ stories and because the data must be collected since many in our community need to be able to have language access for the public services to which they go for support so that they can have a high quality of life.”)
One of the group’s end goals is to engage in elected and administrative decision-maker education and advocacy to pass SB1016. SB1016 would take the critical and necessary first step to address underlying health inequities for Indigenous MesoAmerican and Latine communities by requiring the collection and sharing of data on folks from Meso-American nations and Latine subgroups.
This partnership will ultimately build community in spaces that can often feel siloed and re-energize members as they need. The space serves as a container to hold necessary conversations as partners and affirm experiences as leaders. While there is tremendous pride in amplifying the strengths and needs of communities, the weight of the work can be heavy. We need each other and our different experiences and points of connection to ensure sustainable, systemic change. As members of the group have consistently shared, the other part of this work is remembering that through our very existence, we acknowledge those who have come before us. Their tenacity and perseverance are in us, and as generations before, we will continue to fight to remember who we are through data disaggregation and other ways. It is this level of self-determination from each group member that reminds us that Indigenous Meso-American communities were not only meant to survive but to thrive.
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About LCHC:
Latino Coalition for a Healthy California (LCHC)—the only statewide policy organization with a specific emphasis on Latinx health—was founded by health care providers, consumers and advocates in 1992 to impact Latino health by focusing on policy development, providing enhanced information, and community involvement.
