Collecting disability status data is not sexy or exciting. But that doesn’t mean it’s not important.
There are a lot of movements to make the data world — and the world in general — more inclusive for minorities. We march for women’s rights, hold parades celebrating the LGBTQ community, and champion multiculturalism and all the benefits it brings to our community.
That’s not to say it’s not vital that we focus on better data collection for these minority groups; only that the need for improved efforts here are well-documented and apparent.
One group that is frequently overlooked in data collection efforts is the disabled. Many disabilities are entirely invisible. Efforts to resist categorizing people by what they can’t do rather than what they can do have also discouraged many nonprofits and social sector organizations from collecting disability status data. But there’s a distinct and important difference between categorizing people based on their abilities and understanding the challenges they face. Once you recognize that, you’ll realize why collecting disability status data is so critical for your nonprofit.
Disabilities Can Be Hard to See
We’ve all heard — or even experienced — horror stories where someone is berated for taking advantage of an accessibility service (using handicapped parking, taking the elevator instead of the stairs, sitting in accessible seating) only to be forced to reveal that they do, indeed suffer from a disability that validates their need for special accommodation.
Depending on how you interact with the population you serve, it’s entirely possible you might never identify the disabled members in that community. And as I’ve said in our previous posts on collecting social identity data, the best way to optimize the services or programming you offer for the people you want to help is to get to know them. Understanding the challenges they face can include knowing their gender or ethnic background, but knowing if they face other physical, developmental, or psychological challenges is also very relevant.
Accidental Discrimination is Still Discrimination
I’ve worked with a lot of incredibly well-meaning teams who simply weren’t aware of the ways the work they did was inaccessible to certain groups.
- Do you require people who access your service to visit your office or a specific location to access your services? People with mobility issues may be excluded if alternatives are not available.
- Does your organization provide users with written information, either on paper or online? Those with vision problems or learning disabilities may miss critical details because that information eludes them.
- What if your program requires participants to perform regular activities (attending classes, workshops, or training, for example)? People with chronic pain might be able to participate one day and then miss the next — are they excluded because of that?
By collecting disability status data, you can accurately identify and understand the unique needs of the people you serve, and how you can accommodate them — whether it’s by changing the way you communicate, offering alternative programs or services, or simply allowing participants more time or space to access what you offer.
Knowing is Half the Battle
The World Health Organization has said that “valid, reliable, and relevant disability data are essential for evidence-informed disability and rehabilitation policy.” While governments and large social sector organizations have not yet standardized what disability status data they collect (or how it is collected), action plans are in place to encourage international standardization.
So how do you know how to start collecting disability status data — or how it’s collected in the area you’re working?
- Check with local governments. Most countries will have a standard for collecting disability status data. The US Census, for example, gets most of its data on people with disabilities from the American Community Survey (ACS) and the Survey of Income and Program Participation (SIPP).
Canada’s census includes a section on disability status, which looks like this:
- Carefully plan and implement your data collection strategy. UNICEF has created a helpful booklet for organizations collecting data on the disability status of children, but many of the steps are equally relevant for those working with adult populations.
- Ensure your collection methods protect privacy and aren’t intrusive. Asking the right questions in the right way is critical whenever you are collecting any kind of social identity data.
Start Collecting Disability Status Data
There’s no time like the present to start collecting social identity and disability status data — even if your organization is small, your efforts to include underserved and overlooked populations can make a huge difference.
If you’d like to learn more about how to start collecting data on social identity factors like gender identity, sexual orientation, race, ethnic background or disability status, the team at Datassist is here to help. Get in touch with us for more resources, valuable tips, or hands-on help.