Beyond Representation: Partnerships, Intersectionality, and the Centering of the Disability, Family, and Community Lived Experience

Authors

Lydia Ocasio-Stoutenburg, The Pennsylvania State UniversityFollow
Julieta Hernandez, University of MiamiFollow
Douglene Jackson, GIFTS InstituteFollow

Abstract

The COVID-19 pandemic introduced a public health crisis, overlaying the disparities in healthcare access, treatment, and outcomes that were already prevalent in Black and Latino communities across the U.S., particularly persons with disabilities (PWD) at the intersection of racial and ethnic identities. In addition, the concurrent social and political climate mirrored the pandemic in its action of magnifying existing systemic inequities for historically marginalized populations, calling for institutions to galvanize efforts toward diversity, equity, and inclusion (EDI). Our University Center on Excellence in Disabilities (UCEDD) serves a range of families whose children have disabilities or complex health care needs and strengths within a widely diverse cultural, linguistic, and socioeconomic region of the southeastern U.S. We have also committed to professional development of diverse faculty, community providers, and inclusive leadership pipeline programs across multiple disciplines.

While our existing efforts have had an impact prior to the pandemic, gaps in information about COVID-19, limited access to needed supports, vacillations in services, and disruptions to family- and community-life have called for us to develop more responsive strategies. We discuss the development and implementation of new interprofessional and inclusive community approaches, building on community partnerships and using participatory-action research as a model. Beginning with a series of town halls to address the medical, social-emotional, support, and disability specific needs among our families, we transformed our practice by co-constructing panels with the community and within our UCEDD. We further amplified the voices and centered lived experiences of parents, PWD, teachers of children with disabilities and complex health care needs, as well as community organizational leaders in a conference and throughout our programs. Community partners contributed rich perspectives and expertise on the pre-pandemic conditions, the impact of the coronavirus on the self and community, as well as ways in which they pivoted, created synergies, and co-constructed initiatives. Outcomes from these events underscore the need for (1) community-engaging vs. community-facing discussions, (2) the creation of sustainable action plans that center the community and disability lived experience across a range of sociocultural and linguistic identities, and (3) moving beyond mere representation in EDI efforts toward authentic and equitable partnerships.

Plain Language Summary

COVID-19 highlighted health disparities that existed in Black, Latino, and disability communities. In response, institutions galvanized efforts toward diversity, equity, and inclusion (EDI). Our center serves families of children with disabilities and complex health care needs. It is in a diverse southeastern United States multicultural community. The center developed responsive strategies to address disparities and access to services.

We created the 5R Method as a tool to analyze these responses. The 5 Rs are: reflect, review, represent, revise, and respond. We assessed our internal and external EDI efforts, including community-academic partnerships. Also, we evaluated how the center included lived experiences and amplified diverse voices.

We recognize our positionality and call for individual and organizational reflective practices. The findings revealed the need for authentic community engagement and equitable action plans. Intersectionality, including disability, must be a part of institution's EDI initiatives. Strategic actions should be responsive and empower the community.

Creative Commons License

This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 License.

Recommended Citation

Ocasio-Stoutenburg, Lydia; Hernandez, Julieta; and Jackson, Douglene (2023) "Beyond Representation: Partnerships, Intersectionality, and the Centering of the Disability, Family, and Community Lived Experience," Developmental Disabilities Network Journal: Vol. 3: Iss. 1, Article 10.
DOI: 10.59620/2694-1104.1062
Available at: https://digitalcommons.usu.edu/ddnj/vol3/iss1/10