A Call for Better Data: An Overview of Data Gaps Affecting People with Disabilities in Hawai'i
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2023-04-14
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Theoretically, data has the potential to bring about many benefits for marginalized people, especially people with disabilities (PwD). However, the control of and benefits from the tech and data revolution disproportionately excluded disabled and other marginalized groups. Andrejevic candidly summarizes that “the asymmetric relationship between those who collect, store, and mine large quantities of data, and those whom data collection targets” is a crucial source of “power imbalances in the digital era”. PwD are particularly likely to be on the “wrong” side of the digital divide, as life opportunities become linked to ability expectations regarding data production and consumption. “Data ableism” has been described by Charitsis and Lehtiniemi as “data (in)visibility [which] refers to the ability to produce data that render people visible to the system or conversely the ability to hide from it [… and] data (un)desirability relates to the ability to produce desired data that are deemed valuable”. In addition, owning, using and understanding data and tech have become necessary prerequisites for accessing many resources and services, often without considering appropriate accessibility features.
There is a dearth of systematic efforts to collect data about the lives of PwD in Hawai'i and elsewhere. This leads to research agendas, services, and policy planning that overlook the needs of PwD. The most suitable existing data sources for studying disparities experienced by PwD are government-run survey data, but they have significant limitations, in particular in in terms of identifying PwD and measuring disability, and they lack sub-state geographical identifiers which are critical for teasing on differences in outcomes and access for PwD across the islands. Importantly, none of the existing data sources ask about PwD’s unmet needs, services gaps and accessibility of services and infrastructure. Based on these critical data gaps, we urgently need to advocate for more adequate data vis-à-vis government agencies and invest in research studies that conduct systematic, long-term, community-driven data collection about outcomes and experiences of PwD in Hawai'i.
References:
Andrejevic MB. The big data divide. International Journal of Communication. 8(1):1673–89.
Charitsis V, Lehtiniemi T. Data Ableism: Ability Expectations and Marginalization in Automated Societies. Television & New Media. 2022 Feb 22;15274764221077660.
Description
2023 Symposium for Caring for Data in Hawaiʻi Presentation
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data management, disabled persons
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20 minutes
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Video
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