Data equity can level the playing field for people with disabilities both in opening new employment opportunities and through access to information, while data inequity may amplify disability by disenfranchising people with disabilities.
In response to the U.S. Science and Technology Policy Office’s request for information (RFI) better supporting intra- and extra-governmental collaboration around the production and use of equitable data, CREATE Co-director, Jennifer Mankoff co-authored a position statement with Frank Elavsky, Carnegie Mellon University and Arvind Satyanarayan, MIT Visualization Group. The authors address the three questions most pertinent to the needs of disabled people.
They highlight the opportunity to expand upon the government’s use of accessible tools to produce accessible visualizations through broad-based worker training. “From the CDC to the Census Bureau, critical data that is highly important to all historically underrepresented peoples and should be available to underrepresented scholars and research institutions to access and use, must be accessible to fully include everyone.”
Reiterating “Nothing about us without us,” the statement notes that when authoring policies that involve data, access, and equitable technology, people with disabilities must be consulted. “Calls for information, involvement, and action should explicitly invite and encourage participation of those most affected.” In addition to process notes, the response addresses roles, education, laws, and tools.
Just having access to data is not enough, or just, when power, understanding and action are in the hands of government agents, computer scientists, business people and the many other stakeholders implementing data systems who do not themselves have disabilities.
The statement identifies access to the tools for producing accessible data, such as data visualizations, as low-hanging fruit and concludes with a call for funding of forward-thinking research that investigates structural and strategic limitations to equitable data access. More research is needed to investigate the ways that various cultural and socio-economic factors intersect with disability and access to technology.