Why people with disabilities deserve better than the ‘checkbox’ approach

If you want a better world for people with disabilities, just make some laws and enforce them, right?

But as you might imagine, that’s only part of the story.

I asked Embry Owen about this. She has lived with her own disability — caused by a traffic accident — for the past few years. She now works in web design and accessibility in Philadelphia. 

“Standards engender a ‘checkbox’ approach in designers and developers. The idea is that ‘if we hit the standards, we've done access,’” Embry told me. “The reality is that, if we’ve hit the standards, we’ve just begun to consider access and inclusion for disabled people in space.” 

Put another way, it’s the classic problem of the letter of the law versus the spirit of the law. The Americans with Disabilities Act put together an incredible framework for how people with various health challenges should be treated and included, but it could not possibly account for all situations and circumstances, especially in our rapidly evolving world.

One great suggestion that Embry makes is to consider whether people with disabilities have actually been included in the planning of a particular building or space, or if accommodations look like an afterthought. 

“Planners need to connect with disabled people and understand our diverse needs so that these can be built in from the beginning,” she told me. 

Remember that a person may not have a physically obvious disability. Sometimes these are referred to as non-apparent impairments, hidden disabilities, or invisible disabilities.

The Center for Disability Rights has a useful discussion on its site:

According to the Americans with Disabilities Act of 1990 (ADA), an individual with a disability is a person who: has a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment. Employers are required to provide accommodations to people with disabilities at their workplaces. It is up to individuals with hidden disabilities to disclose their needs to their employers. However, some people with invisible disabilities often prefer to not talk to their employers about their needs, which is entitled under the ADA law, due be worried about prejudice.

The whole use of terminology can be fraught as a journalist. The terms that are used in this space are frequently changing, and you should always ask the people in your stories how they would like to be described. For me, a word like “hidden” implies that the person is hiding their disability, while “invisible” suggests that that it is out of sight to everyone, including the person experiencing the impairment. This is why I like “non-apparent impairment.” On her blog, Embry uses the term “illegible,” which is also nice. It puts the onus on the person reading the situation. You can’t see that someone else has a disability, so that impairment is illegible to you.

So what are some of these non-apparent impairments or illegible disabilities?

They could be learning disabilities, brain injuries, chronic pain, arthritis, degenerative brain diseases like Alzheimer’s, mental health conditions like anxiety, or diseases such as diabetes and Crohn’s disease. 

When a person living with these conditions encounters a building or space designed without these conditions in mind, it can have a limiting effect, to use the words from the ADA. Again, words matter here, and so please don’t assume that people with disabilities are always being held back, cut short, or blocked by their own bodies. As many of them will tell you, one person’s disability is to another just a difference. It’s not necessarily the condition that is the limitation, but rather how it is viewed. As the Canadian Association of the Deaf notes on its website, people who identify as “Deaf,” using a capital “D” see being deaf as a distinct culture with a preferred mode of communication: sign language.

When writing about disabilities and access, try to gain a deeper sense of how well a given space or set of social norms are working for people with a wide range of needs. A checkbox is one thing. Understanding what it really means for access to be universalized is another. I’ll leave you with these words from Embry writing about her own experience:

Since my accident in late 2017, I have continually wrestled with how to assert the differences that have felt overwhelming in my brain and body, but are often imperceptible to the naked eye. At times the changes have been noticeable in my slowed speech and gait, my stutter or my poor balance. But in most circumstances, especially for those who didn’t know me well before or met me after the accident, the needs that felt alarming inside of me were truly invisible. Though I didn’t have the vocabulary for it yet, I was trying to navigate illegibility.  

There are millions of people trying to navigate illegibility around the world. They, like Embry, have differences in their brains and bodies that are truly invisible. To fully live up to the spirit of the ADA, we need to keep that in mind as we enter the 30th anniversary of the ADA becoming law. Find those stories about how the law is holding up three decades after its implementation and consider not just the strictest sense of what the law requires but also the more generous view of the world the law tried to call into being.