The pandemic, latest travesties connected to police, hate-related shootings, and assaults on voting rights have elevated public attention to and support for equitable treatment of Blacks and other racial groups. That is good, but it is tragic that it took horrific behavior and deaths to get us to focus on and begin conversations and take actions that are long overdue. Attention increases visibility. Attention creates potential for power. The availability of data perpetuates both. It allows comparisons. It strengthens arguments for change. It increases credibility for positive directions.
Those who are disabled and those who advocate for disability rights must realize unless we push for disability-related data collection in all contexts aggressively, we will remain an afterthought and marginalized in the current social push for equity in health care, treatment by police, voting access, and other circumstances.
There are many reasons why people with disabilities are absent in existing data bases. Disability is not like race, age, socio-economic status, or sex. If we start collecting disability data in addition to other characteristics, it will cost a fortune, because disability crosses any and every other category. We don’t have enough time or money for collecting such data. Yet, without it, we don’t know what’s happening to people with disabilities.
Disability-related data comes with risks. If we collect it, we run the risk of being sued if the story it tells is a bad one. Yet, without it, we don’t have validated reasons for making decisions that make sense and bring needed change.
Designing surveys takes time. If we get input from people with disabilities, that will take more time and money because of the need of accommodations to ensure full participation in creating a survey. But, if we don’t do this, our attention to disability is absent, based on faulty assumptions, or handled in a superficial manner.
If we ask detailed questions of people with disabilities directly, then we may need to spend more time and money in getting their answers. Yet, if we do not do this, then the data we collect may have little use.
When disability-related data collection does occur, it is often separate, and includes modest samples, lessening the ability to do comparisons and reach wide reaching implications, especially in the area of disparities in varied settings.
We must change what is happening in data collection. We need to shape data points. We must push for as many as necessary data points to secure meaningful data. If we do not, then we will remain less visible, remain marginalized, and not be a force in America’s effort to become a fairer, more inclusive, less discriminatory landscape. There are 60 million plus of us. We need to take a seat at all data collection tables now. Sitting this one out or relying on others to remember and treat us as we should be treated, is not an option. This is a central disability rights issue that must be appropriately addressed in policy, including federal legislation, regulations, and guidelines, and in actions guided by these policies.