Curiosity about other people’s experience is natural and healthy, and learning about other people’s experience leads to greater empathy and understanding. Just as with learning about any other group outside of your own experience your language and approach will go a long way towards determining whether you learn and the disabled person feels respected. If you are in public with your children and they ask about a disabled person, do not shame them or tell them they shouldn’t ask questions. While your embarrassment is understandable, their curiosity is more understandable. Telling them it is wrong to ask questions about disabled people contributes to the stigma of disability. A simple age-appropriate explanation puts disability in its proper place as part of the human condition. An adult should have the self-awareness to seek out the answers to their questions via the disability community on the web or social media. Of course, it is appropriate and welcome to ask questions during a public presentation. Those of use who speak publicly about our experience our often more open to questions any time, but don’t assume every disabled person is willing to be an ambassador. For the love of all that is holy and unholy, please don’t approach me when I’m in the toilet paper aisle at the grocery store. Finding the best buy in toilet paper is complicated enough without the distraction of trying to change the world. For now, let me satisfy your curiosity by talking about some of my least favorite accessibility and empathy fails.
I was diagnosed with glaucoma, a common comorbidity for people born with cataracts, at 26. Shortly after my diagnosis, I went to the Glaucoma Research Foundation in search of more information. I was dismayed to discover the website was not well designed for visually impaired people. Tim Berners-Lee designed the web with accessibility in mind and believes accessibility is a basic component of good web design. While there are certainly debates about the finer points of what makes for good accessible design, there has always been a baseline expectation of accessibility for web content. The expectation of accessibility is much stronger if you know, or can reasonably be expected to know, that you will serve people with disabilities. Since glaucoma is an eye disease that leads to visual impairment, I expected to encounter a website that was accessible. Since about 20% of the population has a disability, and that is likely an underestimate, nearly every organization can reasonably expect to serve disabled people. The Glaucoma Research Foundation has improved their website dramatically in the intervening years. It is now an exemplar of design that is both elegant and accessible. I frequently use it when needing an example of a site that does accessibility well.
I was attending a session on the interface of autonomous vehicles at a major UX conference when I asked the presenter how close they were in reality. “Don’t tease me, I can’t drive because of my vision. This would be life changing for me,” I said. The presenter gave me his assessment, and then another attendee, an engineer, said he thought disabled people were more used to “letting technology control their lives.” The look on my face must have been pretty good because the presenter told me to respond, only asking that I “keep it clean.” I made it clear that I resented the implications of what he was saying. The presenter did say it was a “very engineer” question. Having worked with, and even dated, engineers over the years I knew that to be the case. However, being an engineer is still no excuse for not understanding that disabled people value autonomy and dignity as much as any other person. We may use adaptive technology to accomplish certain tasks, but we are always in control of the technology.
I was told I was being laid off in late October 2019, and immediately began searching for another job. The American Library Association decided to redesign their jobs board. I found the site impossible to navigate with text magnification and complained to ALA, The person I spoke to apologized for the inconvenience. While this may be standard customer service speak, it is an absolute accessibility fail. The store being out of stock of your favorite cookies is an inconvenience. Not being able to access the main job board in your profession when you are facing a layoff is potentially devastating. The appropriate word to use in this case is unacceptable. “I am sorry. What you experienced was unacceptable and we will remedy the situation,” would have been a more appropriate response. ALA, quickly returned the website to the original design, and have not altered it since.
As in most situations where you are learning about people who have historically been, and continue to be, marginalized, listening to and not dismissing their experiences is one of the most important things you can do to practice allyship. Unfortunately, sometimes people do just the opposite. I have some experience with display design because of my background as a special collections librarian and from briefly working in a museum in my college days. When I was working on my masters in human factors, I really wanted one of my internship projects to be an accessibility audit of museum exhibits, so an internship was arranged with a local museum. I met with the museum director to discuss my goals and talk about the museums needs. I introduced her to the social justice model of disability and explained that it was humiliating for me to need to rely on someone else to read the museum’s exhibit cards. I knew that budget was a concern, but pointed out that there were low cost solutions that could improve the accessibility. During the course of the conversation the director told me that someone being willing to read to me was a “beautiful gift” and that I needed to work on balancing giving and receiving in my life. While I completed the requirements of the internship, I did not pass on my recommendations to the museum director. Why should I? She had shown me that she was not at all interested in accessibility because of her personal philosophy on giving and receiving.
I can hear the questions now. But, Angie, have you ever had an accessibility fail? Yes, absolutely! My favorite is my first attempts to put my college newspaper on the web. Good design has always been important to me and I was really starting to get a feel for the beauty of good kerning and leading all the other elements that make a good page layout. I couldn’t stand the thought of loosing them on the web. So, I saved the Quark Xpress layouts at JPEG and put them up on my college’s web server. In my three semester tenure as web editor for the paper, I experimented. Accessibility was not my primary focus. I have learned a lot since then. It would take me a couple of years the lesson I needed to learn from this. Good, accessible web design gives the user some control over the appearance of the final product, so it does not interfere with assistive technology or settings. If your website breaks when a user switches fonts or magnifies text, it is not accessible. I hope that as assistive technology develops and we understand more about human need, I will shake my head at some of the advice I am giving now. Accessible and inclusive design is not a destination. It is a lifelong process of trying to create and experience for disabled people that is close as possible to the experience for non-disabled people.