Disability status is often missing from data collection efforts, even when we see frequently see demographics requesting identification of data such as
race
ethnicity
age
gender
primary language
employment status
student status
community type (urban, rural, etc.).
Collecting disability data is crucial for promoting equity and addressing disability related priorities.
It enables the identification of disparities, informs policy decisions, and guides the allocation of resources to ensure equitable access to services and opportunities.
There are formal methodologies like the Washington Group Questions and the Model Disability Survey that provide detailed disability data related to specific functions or activities, those these are not without criticism.
More informally, disability status can be collected with a single question in the same way other demographics are collected, with standard answer options of Yes, No, Don't know or Prefer not to answer.
Below are a few variations.
Do you identify as a person with a disability and/or other chronic condition?
Do you identify as disabled and/or a person with a disability?
Do you consider yourself disabled and/or a person with a disability?
More information can also be linked to the question if needed. For example, the State of Washington's Office of Financial Management provides their employees a page along with their human resources information that asks "The Employee Engagement Survey includes a question asking if I have a disability. How should I answer?" and goes on to explain examples of what is commonly considered a disability, benefits of reporting disability status and who their employees can contact for questions.
The International Disability Alliance also provides significant resources on disability data. Their Disability Data Advocacy Toolkit provides basic knowledge on data collection, analysis, and use of data for advocacy to influence policy and decision makers.
Learn more about the Disability Data Advocacy Toolkit on the International Disability Alliance website, versitions are availible in English, International Sign, Spanish, French, Arabic and Easy Read.
Additional Resources
A Need For Disability Data Justice by Bonnielin K. Swenor
Why We Ask Questions About Disability by the United States Census
Producing disability-inclusive data - Why it matters and what it takes by UNICEF
Strengthening the collection of data on disability by World Health Organization (WHO)
Charting Equality: Why Demographic Disability Data is Good for Everyone by National Health Law Program and Disability Rights Education and Defense Fund
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