Mark Bookman: an interview on accessibility across various cultures
Mark Bookman is a Ph.D. Candidate at the University of Pennsylvania and a visiting researcher at the University of Tokyo. His work is on the history and politics of disability in Japan and the United States, and that comes out of his own experience as an American wheelchair user living in Tokyo, seeing the differences in accessibility in both cultures.
Tell us about your story!
I was born with a rare muscle disease like ALS called Glycogen Storage Disease, which makes my muscles grow weaker over time. I was still walking until I was around 20, and then I started to use a wheelchair. Now, I use a ventilator and work with several helpers.
In the US, I had pretty much all of my accommodations set for me by friends and family. Thanks to their help, I did not face a lot of barriers in my everyday life. So I didn’t really think of myself as disabled. But things changed when I went to Japan for the first time. All of a sudden, I didn’t have the language skills to talk about my disability and medical needs. I also didn’t know where to ask for my accommodations or how to get around.
The first time I went to Japan, I was still walking, albeit with a limp (age 17 at that time). When I went back to Japan for the second time (age 20), I started to use a wheelchair. The experience was strikingly different: I recognized that the places I frequented in high school were no longer accessible to me. Still, since I went via a study abroad program, they arranged everything for me in terms of housing and accommodations, so I wasn’t fully aware of what it meant to be disabled without a support network. When I went back to Japan for the third time (age 24), I had to find my own housing and accommodations. I also had to learn how to navigate temples and other field sites because I was studying Buddhism at that time. Locating an apartment was especially difficult: I looked at around 240,000 rooms online to find 900 that said they were accessible, but none of them fit my large American wheelchair. At some point, I started asking myself, “Why am I interested in Buddhism and temples if I can’t even get inside? Shouldn’t I be focusing on the fact that I can’t find housing?” That insight became my gateway into disability studies.
What are some projects that you’ve worked on so far?
I’ve got a number of projects in the works right now. One of them called the “Accessibility Mapping Project (AMP) at the University of Pennsylvania.” You can imagine a mobile app like Google Maps where anyone can go in and in their own words describe “this place is accessible for me for these reasons…” or “this place is inaccessible for me for these reasons…” I built the app because I think it’s important that disabled people and others with access needs can express experiences in their own words. One problem that I had in Japan, for instance, was that everywhere that said it was wheelchair accessible was for a Japanese style wheelchair (smaller than an American wheelchair). Even though it said it was accessible, it didn’t work for me. Using that as a jumping-off point, I said we need to have accessibility, not just be a yes or no, and not just wheelchair good or bad. If someone is blind, let them talk about it in their marks. If someone needs access to a gender-neutral bathroom or a prayer room or some other kind of access feature, we need to map out that kind of accessibility, too.
I am also working on a video documentary series about the experiences of the students with disabilities during COVID-19 in Japan and the US, which allows students to share their problems and brainstorming solutions across cultures. Additionally, I’m working on a disability employment workshop series with the US Embassy, which asks how we can improve employment prospects for persons with disabilities in both Japan and the US.
What are the main distinctions between the US and Japan regarding accessibility?
When people ask this question, it’s usually “Which culture is better in terms of access?” To me, it’s never a matter of ‘which country is better’ so much as ‘which country is better for whom?’ Consider an example I raised earlier: I use a big American wheelchair, and when I go to Tokyo, none of the wheelchair accessible places work for me. But I have Japanese friends in smaller chairs who travel to the US and have the opposite problem. There are historical reasons why the targets of accessibility differ across cultures, and why some kinds of bodies and minds are more or less accommodated than others.
One major distinction between Japan and the United States is whether or not access is considered a ‘right.’ In the United States, access is largely treated as a right thanks to the Americans with Disabilities Act (ADA). In Japan, however, no such legislation exists. Instead, you ‘cannot discriminate against someone on the grounds of their disabilities.’ Typically, the US is thought of as having a stronger framework. However, even though Japan lacks the idea of access as a ‘right,’ it is still building accessibility at a rapid pace. This is in part because of local and global pressures such as the aging population crisis and the upcoming Olympics. Thus, Japan is a good laboratory for exploring accessibility. The US can learn from Japan in that way, just as Japan can learn from the US’s laws.
How do you think the Japanese government has approached the disability community?
The first law mandating access in any realm of society was passed in 2000 (although there were non-mandatory ordinances before that). From that moment, we’ve seen the rapid installation of elevators and different accommodations in bus stops, train stations, and other transit hubs. If a disabled person gets access to transit, that means that they may also need access at their destination. The more access people get, the more they want it elsewhere, and it grows and grows. The government has done a lot to promote accessible development recently, but the problem, in my opinion, is that they’ve been promoting it too much, too fast, and not connecting the people involved. Imagine an architect who builds a really wide room. If they don’t take the time to check with an engineer to see if the room’s door is wide enough to fit a certain type of wheelchair, it doesn’t matter how big the room is, the wheelchair will not be able to go inside. If you build an amazing accessible education system, but a disabled person cannot get on the train to go to school, it doesn’t matter how great the classroom is. When everyone builds their own idealized version of access and they are not coordinated effectively, then they’re actually creating more barriers than they’re solving. From my research, I’ve seen that the Japanese government is doing more harm than good in facilitating such coordination right now. Going forward, the government has to consider: “What can they do to change that?” With the aging population in plain sight, they need an answer soon.
What are your future goals?
In the short term, I want to work as a professor of accessibility in global contexts, talking about how different types of accessibility policies get created and implemented, and how Japan’s policies influence other cultures. For example, the Japanese government’s solution to the aging population has been to make caregiving robots, which are now being sent to Germany and changing how access operates there. I want to teach my students their role in such exchanges as people who support diverse access systems.
In the mid-term, I want to continue my work as an accessibility consultant with the Olympic Committee and UN, as well as numerous government and corporate entities. By keeping those projects going, I’ll try to make sure that policies get developed in an inclusive way.
In the long-term, I want to open up an accessibility research center, which will bring together scholars, activists, and practitioners from across the world to coordinate inclusive, education, employment, entertainment, transit, and other kinds of projects.
What is the best way for people to educate themselves on the disability community?
The short answer is to ask disabled people. One of the slogans of the disability movement in the US that has been adopted globally is “nothing about us without us.” Too often, people imagine what access means and don’t check-in with a person who actually needs access to see if it’s useful. The first step is to speak to disabled people and see what they want and not just ask one person. I recognize that no matter how much of an expert I am, I cannot speak to everyone’s experience. The question is, what can you do to speak to as many disabled people as possible? I think the answer to that is to start going to NGOs and large disability organizations that have access to many people with different backgrounds and listen to what they say to get yourself informed.
To learn more about Mark and his work, visit:
Website: https://bookmanresearch.com/
TED Talk: https://youtu.be/EUvkdhrIgsg
