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A full transcript follows.
As a young man, Dr. Mark Bookman developed a love for philosophy and Japanese culture through anime, which allowed him to engage with more cerebral and philosophical issues. This interest in Japan propelled him forward to travel to Japan as a high school student, a university student and again as part of his PhD scholarship. Mark was born with a rare degenerative muscle condition that very few people in the world have, and through his love of Eastern philosophy he was able to elucidate the intersections between Buddhism and disability. It was an honour to interview Mark, and listen to his stories of his experiences with disability in Japan, and hear his words of wisdom on issues of accessibility and inclusion that affect everyone.
In this episode you’ll hear:
- How Mark first came to Japan as a high school student after developing a love for Japanese culture
- How as a philosophy major, he studied Buddhism to understand his own experiences with disability
- His experiences as a university student in Japan finding most campuses and accommodations to be inaccessible
- How making spaces more accessible and inclusive for a diversity of abilities benefits everyone who uses those spaces
About Mark:
An esteemed enjoi Japan thought partner and collaborator on projects intersecting with accessibility, Mark Bookman is a historian of disability policy and related social movements in Japanese and transnational contexts. Currently a Postdoctoral Fellow at Tokyo College, Mark holds PhD and MA degrees from the University of Pennsylvania as well as a BA from Villanova University. Mark’s research has been supported by numerous grants and awards, including a Fulbright U.S. Student Fellowship to Japan and Japan Foundation Doctoral Fellowship.
Mark’s scholarship on disability inclusion can be found in peer-reviewed journals such as Japan Focus: The Asia-Pacific Journal and public-facing media outlets like The Japan Times and Japan Today.
Outside of the academy, Mark also works as an accessibility consultant. He has collaborated with government agencies and corporate entities in Japan, the United States, and Canada, as well as the International Paralympic Committee and United Nations, on projects related to inclusive education, equitable transportation, and disaster risk management for diverse populations of disabled people.
Useful links:
Accessible Japan website: Accessible Japan – アクセシブルジャパン (accessible-japan.com)
Connect with Mark:
Website: https://bookmanresearch.com/
Connect with Jackie:
Website: https://en-joi.com/
LinkedIn: https://www.linkedin.com/in/jackie-f-steele-phd/
Facebook: https://www.facebook.com/enjoidiversityandinnovation
https://www.facebook.com/jackiefsteelephd
Instagram: www.instagram.com/enjoi_diversity_innovation/
Transcript
Welcome to Diversity rocks innovation! Today, we have an amazing guest who I will be introducing in a little bit, but allow me to first situate and lay the scenes. My name is Jackie Steele. I’m a long time Canadian political scientist, living and teaching here in Japan and also the CEO and founder of enjoi Diversity and Innovation.
Today, our guest is also someone who is with enjoi Diversity and Innovation. So you’re hearing and seeing Mark Bookman here on screen with me. Hello, Mark. Thank you for joining today.
Mark: Hey Jackie, thanks for having me.
Jackie: We’re going to have a fun discussion today. Of course. A little bit about enjoi, we’re a Japan based global facing business, working in English and Japanese and French, and we’re committed to providing fun, engaging, and evidence-based diversity, equity, inclusion and innovation training, and also consulting supports to leaders.
So of course Mark and I know that diversity rocks innovation and we believe that inclusive innovation is really what we need to be building out. Working with leaders, with companies, with organizations, so that innovation is really supporting equity, equality, and it really is powering our people systems.
And so this live stream is shining a spotlight on all the different individual thought partners in the enjoi diversity and innovation network. And we thought partner out loud for about an hour. We come together without our business cards. So just as two human beings and we learn from each other’s experiences, our worldviews, our lived realities, our identities, and of course, all of our diversities.
So today’s show featuring Mark Bookman who started out as an enjoi thought partner. And I will give a shout out to Josh. Josh Grisdale is actually the person who brought us together last year. He had been featured on a global summit panel that I had been organizing around changing the face of inclusive diversity or inclusive leadership.
And so Josh was featured there and as we were talking more and more, Josh said, oh really, Jackie you need to, you really need to meet Mark. I think you and Mark are going to be two peas in a pod. And so he kept saying, I need to get you two together. So thank you to Josh for connecting us.
And I must say it’s been such a pleasure in what, six short months really have some amazing mind melds. So welcome to Diversity rocks innovation! Volume 11. And Mark, today’s a special day. Today’s a really special day. So first off maybe we can talk about today is your, can I give away your age?
Mark: By all means.
Jackie: Okay. So today’s your 30th birthday. I have, I brought it. I have, oh, no you can’t see it. Oh, I wonder if you can’t see it. I’ve got a hat on and you can’t see it. There it is. There’s the hat. I don’t know if it shows that, but anyhow, this is a happy birthday hat and congratulations on, well, in 30 short years accomplishing very much.
And can I call you doctor?
Mark: You can, and now officially.
Jackie: Okay. I know graduation isn’t until what, like June and then sometimes people get fussy around that. But Dr. Mark Bookman, congratulations Mark, who just defended his doctoral thesis as well. And is now joining the circles and we’ll be having hopefully a book soon to be published, featuring all of the research you’ve been doing over the years to make that milestone happen.
So congratulations on two counts. And maybe we can dive straight in and learn more about your background and how is it that you identify and situate your own core identities and your own passion projects.
Mark: Sure. Thank you so much, really, for the introduction, for the congratulatory remarks, and for having me here today.
So in terms of myself, I view myself professionally as a historian of disability policy and minority of social movements in Japanese and transnational context. That research and identity comes out of my personal experiences, living and working in Japan and the United States as a disabled researcher.
And more specifically as a wheelchair user with a rare muscle condition that affects around six people on the planet. And essentially makes my body weaker over time. So you mentioned that today is a special day. And let me pick up on that note as a story, into my own, or as a starting point into a story about my own identity and how I’m coming to sit here before you today.
So today is my 30th birthday. I was not supposed to live past 30 days, let alone 30 years. I was born 16 weeks early, back in 1991. My body length wise was roughly as long as my dad’s wristwatch. He could fit his wedding ring around my thigh cause I was very premature and very small.
And for that reason alone, since I was very young, a lot of my body did not work in the way that we might expect a young healthy child to be able to function. So I had muscle issues. I was always very weak as a child. And because of that for a while the doctors thought, well, okay, it’s his prematurity, he’ll keep reaching milestones, it might be a bit slower than everyone else, but otherwise it’s fine. There’s nothing wrong.
That began to change when I was around eight. By that point in time, we realized not only was I going slower, I was actually going in reverse. My muscles were getting weaker.
Jackie: So it wasn’t just an issue of being born premature, they started to tune in to realize there were some other complicating factors.
Mark: Exactly. And so they began to expect a number of conditions, things like muscular dystrophy. I was put through a battery of tests when I was in my eight, nine years old time.
But really it was when I was 10 that the full reality of the situation became known. The muscle disease that I had, which was still unclear, still under investigation had come to my heart. And started to weaken my heart to the point where I needed to have a heart transplant, when I was ten.
Jackie: And at this point, did they have a name for this condition?
Mark: They were calling it glycogen storage disease or some variant thereof, which is in and of itself a rare set of muscle diseases where the body cannot break down glucose into energy. So you would store it in the muscles and therefore can not produce as much energy as you might otherwise.
But it didn’t quite fit in terms of both genotype and phenotype. The way the disease was progressing didn’t really line up with the known conditions and it didn’t really fit into genetically what they would expect to see when they’re doing this type of diagnostic test. So it wasn’t one of those conditions, but in any case, it was bad enough that my heart was affected, I had a transplant.
And I had to spend really almost a year…
Jackie: Major for such a young, I mean 10. Obviously all of the battery of tests alone at age eight and nine are fairly traumatic, and then to move from that to a whole heart transplant at age 10. My daughter is 10. That would be terrifying to live through, for me as a mother too.
Mark: You can imagine, right?
Yeah. So props to my parents for making it through that. I’ll say for me, it was a really transformative moment. And the reason why I’m singling out the heart transplant here is it made me… to deal with rejection issues, you know my body attacking the foreign organ, I had to start taking immunosuppressive medications from that point on.
Which meant for almost a year, I was not allowed to go outside. I was not allowed to play on the playground with my friends. I was not allowed to see people really.
Jackie: You’ve had a whole pre COVID experience of this. Living, being indoors, confined to not having any contamination from others.
Mark: Exactly. And as a 10, 11 year old child, for me that experience was certainly traumatic, but it was also transformative in the sense that it made me start to explore my identity a bit. The way that I put it, everyone else was outside in the playground and I was inside reading Kant and Hegel, trying to figure out, okay, what makes me different?
Why am I going through this? What is my disability doing to my perspective? And it’s roughly at this time that it comes out that I find my first kind of foothold into Japan in Japanese anime. As this thing that I could watch at home where I’m able to engage in this other world, unlike American cartoons, it’s somewhat cerebral.
I can do philosophical exploration through anime in the early 2000s that I would not have been able to do with Tom and Jerry or the Flintstones.
Jackie: No kidding. Certainly by comparison, what you can, the surreal kind of invitations of the anime world that are so much more expansive than Saturday morning cartoons.
Mark: Exactly. From that perspective, I started getting an interest in Japanese studies or Japanese culture, I should say. Certainly not even remotely considering academia at this point, but I’m starting down the path. And by the time that I got to high school, my body is still weak, but I’m able to walk at this point.
And I decide I’m going to go to Japan. This is actually another funny story. Speaking about family dynamics, I was a junior in high school, and I had decided that I wanted to do guitar lessons over the summer. I told my dad this and my dad said, well, you have two options, you’re going to summer school and you’re getting a job, but guitar is not one of them.
So in response to this ultimatum, I said, you know what, I’m going to go as far away as possible. I love Japan. I’m going to apply for a scholarship and not tell him. And I’m just gonna go. So it turns out I got the scholarship. Around a month or two before I have to go, he gets a random phone call from the Minister of Foreign Affairs or someone in the ministry and says, we have some questions about your son’s application.
We see he’s disabled, can you talk to us about that? And of course not knowing that I applied, he’s like what is this?
Jackie: Did you have to forge their signature and to get it in?
Mark: It was a recommendation letter from my high school Japanese teacher actually, that got me the position.
Jackie: The co-conspirator.
Mark: Yeah, exactly.
I didn’t have to involve them. So anyway, let’s just say that my dad and I had a long talk, but I did manage to go. And when I was in Japan in high school, I was walking slower than everyone else. I had difficulty with stairs, but I was able to navigate them. And I had host families who really cared about me.
So for the most part, I wasn’t really aware of the disabled experience at that point in time. I was more interested in, how do I get to play at my favorite arcade? Where is the closest bar? Cause they’re not gonna card me.
Jackie: The usual concerns of a young’un.
Mark: Exactly right?
Jackie: And you’re experiencing, I guess what is more of a usual… you’d survived a heart transplant and I guess as long as you were going at a little bit easier pace on your body, then you could largely experience maybe things as per usual.
Mark: Yeah. That’s really what it was. I’d developed enough sort of knowledge base around who I am, what my limits were physically, what my limits were emotionally, where I could and couldn’t go.
And by the time that I was 17, I had a pretty good idea of how to navigate the world around me. Well at least I thought I did, I was very arrogant and brash, as you might expect a teenager to be. But I wasn’t thinking about; huh, I wonder how a wheelchair user would get around Tokyo. I wasn’t thinking about it. If anything, honestly, it was the opposite.
I was in denial for a very long time about my disability, because I was getting slowly weaker over time. I didn’t want to see the changes. I didn’t want to think about going into a wheelchair. Because for me that was a sort of existential dread at that point. It’s only later that I realized how much of a boon and how much of a gift being disabled would actually be for my identity.
Let me talk a little bit about that. So when I got to college, I wanted to go back to Japan. I did my college in the U S, but studied abroad again. And when I was studying abroad, this was 2012, I went in a wheelchair.
Jackie: That’s your second trip to Japan?
Mark: Yeah. So I was able to walk a little bit, but for most of the long distance stuff, I was using a wheelchair.
And I realized at that moment that even though I went via a study abroad program that coordinated all of my accommodations from my housing, to my train, to my in-school classroom accommodations, a single step up was enough to keep me out of the bars and the places that I was going in high school.
And no matter what the school did, no matter what the people around me were doing, they weren’t necessarily able to help me overcome all the barriers that I was facing in everyday life. At the time I was a philosophy major and I was really interested in the sort of dynamic of what separated me as a disabled person versus someone else.
So I decided to explore that, alongside or through some of the courses I was taking actually. Far from a disability studies angle, far from the necessarily like Japan angle, I was looking at Buddhism actually, as I was trying to figure out what my identity was.
Jackie: That’s from Hegel to Kant and then over to the Eastern traditions with the Japanese Buddhist traditions of existential thinking.
Mark: Exactly. I had, on the one hand I had these lived experiences of barriers that were inconveniences, but every inconvenience was enough to get me starting to think; wait a minute, why am I experiencing this? Let me turn to Kūkai, this ninth century philosopher who talks about the way that different bodies are shaped and how do you get to enlightenment this way or that way.
And I was doing a lot of exploration. I got home to the US after that experience in college and decided that I had to keep this research going. I wanted to know more about, what Buddhists thought about disability, what Buddhists thought about the experiences that I was having.
Because again, I’ve been sheltered in this study abroad program where they had designed everything. I knew there was a world outside. I’d seen the barriers, but I wasn’t fully immersed in them. I wasn’t fully knowledgeable about them. I wanted more
Jackie: During that second trip in 2012, did you already start attempting to visit the temples and realizing that it was not so accessible to your wheelchair?
Or was that later?
Mark: So that was my third trip, which this is a good bridge. As I mentioned, I came back home and I wanted to do more. When I graduated college, I did a Fulbright grant to Japan, where I was going to study the connection between Buddhism and disability. My first trip was supposed to be at Koyasan University.
Which, for those listeners who don’t know, imagine a pristine monastery on top of a secluded mountain in the middle of nowhere. That was basically where I was supposed to be. Which, historically secluded Buddhist monasteries are not the most accessible places for wheelchair users. And at that point in time, they were very generous. They’d offered to build me a house to be able to accommodate me.
Jackie: On top of the mountain?
Mark: Atop the mountain.
Jackie: With like an elevator rise that would get you there?
Mark: There was like a cable car and everything, but it would not have worked for a number of reasons. There wasn’t accessible food nearby, for instance.
So I had to decline and say, okay, if I can’t go there, where else can I go? I started applying to different schools. This was in 2014. So I applied to a bunch of schools in Kyoto. Places, I won’t name individual names, but those programs at that point in time, were not legally required to provide accommodations for disabled students.
So left and right I was getting turned down. I’m sorry we can’t accommodate you. We don’t have the facilities. It’s not even that we don’t have the desire. We don’t have the infrastructure right now to make it happen. And I really, I went through a list of seven or eight schools.
Couldn’t find an affiliation. And even after I did and got on the ground, I was in Tokyo, I could not find housing. I had to look at, I believe the number was roughly 270,000 apartments on one of the sort of main rental sites. You click on the barrier free or accessibility option. You get maybe 700 and each of those 700 was accessible to someone, but none of them were for me because I came with this big foreign power chair.
I came with my own medical conditions, my rare disability that no one else had. So no one knew how to accommodate it necessarily. So I was having trouble finding a school, finding housing. And then as you mentioned, when I finally got on the ground to go do my research at these temples…
Jackie: So many hurdles, you’ve already, just so many hurdles just to, okay, you’re now, ready, you’re ready to start doing some research and get out there and visit the temples.
Mark: Exactly, and everywhere has stairs, everywhere. And I couldn’t get in the front door.
But so here’s where the value of disability comes in. At some point I start saying, wait a minute, I’m asking the wrong question. Why do I care what monks think if I can’t get in the front door, why can’t I get in the front door? And if I can’t, maybe someone else can’t, maybe that’s affecting their experiences.
So why was I having these problems? Finding housing, finding transportation, finding access to my research archives. I became really interested in this question during my year of Fulbright research and decided, you know what? I need to get an answer. I need to figure out what resources are out there for access in Japan.
At the time, you mentioned Josh Grisdale at the start of this call, Josh’s website Accessible Japan was one of the few resources around. It gave him a database of different tourist attractions, different services that might be available for a short-term stay, but there was nothing about long-term life with access in Japan for someone like me.
And that’s what drove me to start my PhD, was to answer this question because I couldn’t find anyone else who talked about it.
Jackie: Correct me if I’m wrong, but I would imagine from a Canadian perspective, I would imagine that in some ways providing the baseline information about accessible housing is going to come back to the legislation requiring different buildings to one, be built to certain codes and accessibility codes, and then how they are labeled. And then in the rental community, how those rental units are publicly and transparently listed. And what are the criteria that you have to transparently show in your listings.
So much of that I would imagine comes from government led regulations and providing transparent information to the population, and in support of citizens and residents who have disabilities. So in that sense, is it completely left unregulated and left to a private sector actor like Josh Grisdale with his largely not for profit effort of his own precious time going into research this.
Is there not a more holistic Japanese national government public information offering that’s trying to standardize this information for Japanese citizens and residents here?
Mark: So there are different legal systems that have regulated standards. So for instance, Japan’s first accessibility law for public transportation that mandates access was passed in 2000. In 2006, that law gets expanded to include certain public facilities.
By the time that I was doing this Buddhist research in 2014, that was the year that Japan ratified the United Nations convention on rights of persons with disabilities, which institutes its own requirements and standards. But even though these standards exist, they are first off, not hard and fast. There’s a lot of room for negotiation.
So for example, the term that often gets thrown around today, reasonable accommodation in facilities. What counts as reasonable? Who gets to decide what reasonable is? Is it, are we building a facility for a big wheelchair or a small wheelchair? Put another way, I’ll go to one of my favorite examples here, just to illustrate this point.
I came to Japan in a huge foreign wheelchair. All the toilets were way too low. I could get onto them, but could not get back off when I wanted to get into my chair. This created problems cause I couldn’t go outside and use facilities really. Meanwhile, my Japanese friends who went to the U S in their smaller Japanese chairs could not use the taller toilets for the exact opposite problem.
So the standards are there, but who were they built for? Why are they built that way? What flexibility do they have? What accommodations do they have? Even in one space, so the bathroom for instance is tough, but now trying to imagine coordinating that across different parts of society. So let’s say we’re talking about employment.
If you need access to employment, just fixing the workplace is not enough. You need the educational qualifications to get that job, which means fixing the school, but fixing the school is not enough because you need access to the transit system to get there. And if the transit system is, it spirals out.
So even though there was some government regulation in place, what I was experiencing was a mismatch between the government sectors in each of these spheres, the private actors who are operating with good will, everyone trying to build access in a way that helps people, but not necessarily coordinated.
And I was in the middle of it, trying to deal with these ambiguous and liquid understandings of what was accessible for who.
Jackie: And I think we see that across so many different, and we’ve had fruitful conversations about intersectional diversity and recognizing the diversity within each social group, within each identity group. And so when you talk about the diversity of wheelchair users and the diversity of wheelchairs, I mean that alone, understanding and making sure that the legal framework and the guidelines are even acknowledging that there isn’t just one cookie cutter definition of a wheelchair.
There is this full diversity of not only the users themselves, but also the wheelchairs themselves. And then thinking that forward into the build-out. And that would be the same, when I’ve looked at feminist advocacy movements that are working across so many different issues, and like you say, there’s so many different pieces of the puzzle that building out that ecosystem to really capture all the core elements and coordinate it through some formal recognition of those full diversities is challenging.
And it takes a lot of thought leadership of both governments and private sector and nonprofit sector, the nonprofit sector, all ramming in the same direction with a more sophisticated paradigm. And certainly for enjoi, we’re trying to build knowledge and literacy about intersectional diversity for that purpose, because it’s such a powerful tool.
But definitely I can just imagine how then, and in Japan and like yourself, so many individuals are in this maze of piecemeal, disparate initiatives, or in the corporate workplaces, we’re seeing that as well on so many different pain points, be it gender, LGBTQ inclusion, accessibility, racial inclusion.
Mark: And part of the problem in you run into here, and I really encountered this during my most recent trip, my current trip to Japan where I started as a visiting researcher at the University of Tokyo in 2018, is even if you are able to navigate all of these disparate accessibilities and you’re able to get the education and the employment and the transportation and the home care and the medical care, and somehow carve together a system that works for the individual, the individual may not even be able to vocalize their problems to all of these different actors.
They might not know where to start. If I want to fix a barrier for myself or for someone else, who do I talk to about that? Should I be talking to the government? Should I be talking to corporate stakeholders? Should I be talking to another disability advocacy individual or organization?
Figuring out who to talk to, how to talk to them, how to create an environment where those conversations can occur. And people feel comfortable talking about accessibility or inaccessibility. These types of issues are extremely delicate and require a lot of background knowledge, honestly.
So what I came to realize through my doctoral work and through my lived experiences as an accessibility and disability consultant, is there’s a very long history to the reasons why Japan’s access looks the way it does. There’s a very long history behind the reasons why I was experiencing the particular problems that I had and my friends and the disability community were experiencing their own problems.
And we mentioned intersectionality, some groups have had power, some groups haven’t. Some groups have been privileged, some groups haven’t. Thinking about who’s in power now, and what could be done to level the scales a little bit so we can create an equitable space for conversation around accessibility, around intersectionality.
That’s one of the big missions I think we have at enjoi. And one of the big missions I think we have as members of a global society. Whether we’re talking about Japan, the US, or Canada, the access coordination I was talking about earlier. The barriers that I faced at temples, you may, if you’re living in the US you might be thinking about them in relation to your local church, in relation to your local school, your local business, whatever it might be, there is a similar type of problem occurring in many cultures around the world right now. And not just in these different spaces. If I could highlight one thing, it’s the fact that different countries’ access systems affect other places as well.
So for instance, the technologies that Japan is building right now, let’s talk about caregiving robots ahead of the Olympics, these are gonna get sent to Germany and change how caregiving works in Germany. And the developments of Germany are going to get sent to the US. And we’re all interlocked and helping each other, and potentially hurting each other a little bit in the sense that if the technology doesn’t necessarily match up, we’re actually reinforcing barriers instead of getting rid of them.
And that can create some economic difficulties that can create physical hardships, medical hardships. So one thing that we have to think about is what are the local and global implications of our actions and how do we optimize that system?
Because at the end of the day, and this was something that I really want to stress if I can end my personal narrative and move into the sort of the filtered end of it is to say, I think if there’s one thing that I’ve learned recently, and I’m going to pull us into the coronavirus moment, because that’s where we are.
It’s that leaving anyone behind leaves everyone behind. So right now, For a number of reasons, disabled people are being disproportionately affected by the coronavirus. People who can not necessarily go out to get resources, whether it’s because they’re susceptible to infection or because they have to rely on caregivers to help them do so.
But for whatever reason, disabled people in a lot of cases are susceptible to infection. And when someone gets the coronavirus then everyone’s at risk, right? That same logic of infection or a spreading hardship or difficulty applies to every element of access making, whether we’re talking about the education system.
So let’s say that I need to get access to schooling to get a job, if I don’t get that schooling, then someone is going to have to help me navigate life in another way. And that affects their life. So we talk about care economies or the way that people are interlocked working together and I think that if I’m trying to say anything here it’s simply that; we need to think about what we’re doing, how we’re helping other people, how we might be disadvantaging other people, and what we can do to optimize that system, because it has real physical, emotional, and perhaps above all to a lot of different people, economic benefits.
Jackie: I think absolutely, I couldn’t agree more. And certainly now we’re dealing with COVID, but certainly I guess from my perspective, when I was in Sendai in 2011 and experienced the triple disaster and then built those connections into the research I was doing across, where are the gaps in policy making for not recognizing the diversity of family formations who are now not being supported post disaster.
You realize the concept of resilience has to be a collective concept. If it’s not a collective definition, then resilience is empty because individual resilience is not going to make our economies bounce back and recover quickly. Individual resilience and survival is not going to be the key to community revival and wellbeing, and relations of trust across neighborhoods and families, and having a sense of normalcy again, or psychological safety within our societies and workplaces.
It has to be collective. And I guess I want to return to one thing you mentioned that really, I think is so, for me as a political scientist thinking, or I guess a student of democracy, or life, I think we’re always a student of democracy, but for me, when you mentioned that even if the individual wanted to try to help solve problems of access for themselves, knowing who to talk to, knowing how to talk about these issues, having enough education and literacy and understanding about the history of disability and accessibility in Japan, understanding what governments do, which government office.
Do you go to the gender equality office if you’re a woman with a disability, or do you go to the disability window, or do you go to the multicultural cohesion window because you’re a foreigner?
And so this is where our intersectional diversities all kind of bubble down to; if governments are acting and dealing with these pieces all in silos, the foreigners go to this window, the women go to this window, and the disability community go to this window. What if you’re all three, which window do you go to?
And that’s the very point of Kimberle Crenshaw’s pivotal work on intersectionality, of identifying that complexity of who’s falling through the cracks when we make these superficial groups and identities. And then think that we’re only solving for one at a time in a silo from the others. They have to be thought of, and these inequalities are cross cutting, but then to be able to even advocate, because what we’re really talking about is advocacy.
Being able to advocate for oneself, and for one’s freedom, and for one’s liberty, and one’s right to equality, and one’s right to have access. We’re all paying taxes. Why is it that I have more access than you? We’re all having this kind of role within society as contributing members and individuals as residents.
So then why are these chronic inequalities not being dealt with? And I find it interesting how much we take, I think, the logic of the social contract and democratic political philosophy really takes for granted that any individual can be a fully engaged citizen. And do advocacy and self represent coherently and competently, and know to which government to go and speak to, to go and call up your city councilor and just go have that conversation, and get her done.
We take it for granted. Political philosophy, right, this is one of the key gaps that I’ve been struggling with is democracy itself hasn’t been diversified in our theories to understand the complexities of all the different types of individual diversities and individual realities and competencies, that not everybody is a good advocate for themselves.
Not everybody wants to do advocacy for themselves. So then what? Who advocates, where does that role go? And it could be something, I think it’s interesting to think about your comment about in the United States, not being able to get access to your church based on disability and accessibility issues, that would be a core freedom of conscience and freedom of religion issue.
To be denied access, which maybe was not part of the framing of the conversation of how you were looking even at access to temples here. But how does that intersect with freedom of conscience within a free and democratic society? You can’t get access to go and preach, or to go and pray, or to commune with those who have a similar faith to yourself.
So many of these core issues of democratic self-government and then thinking about who cares, who can care about these issues, and who can care enough to advocate, and then do they have the competencies to actually go do that advocacy? Cause if they don’t, I think about, and certainly elderly communities and my mother’s experience of caregiving for my father when he was dealing with cancer for many years, my mother becomes the patient advocate for my father.
She’s the one who now has to go engage and just nonstop make sure that access is not being denied to my father, but you need a strong advocate working for you, right?
Mark: Yeah. And one of the key issues here, which is the burden that has to go somewhere. If it’s not on the marginalized individual, be they disabled, or have some other sort of intersectional marginality, it’s pushed onto the people who work in the communities around them, or the communities around those communities, and sent around the globe.
So there’s always going to be some push to create access on someone. But what you said reminded me of a point that I wanted to make earlier, which is the danger of assuming that we have that knowledge. The danger of assuming we know what access is or how to include people. Because the problem with that is, let’s say for example I’ll give you a case study here.
Let’s say we’re building accessible toilets in Rwanda, and those toilets are being built by a Japanese company. The Japanese company is building to Japanese standards. They’ve sent the toilets to Rwanda and they find out that they don’t fit Rwandan wheelchairs because they’re at the wrong height.
Well those toilets are essentially useless for the disabled people that might want to use them. But not only that, they give the publics around those disabled people the impression that the issue has been solved. We have access, we have these acceptable toilets. We don’t get to see the disabled experience. We don’t get to see that inaccess necessarily.
So we’re reinforcing a bad behaviour that then increases that burden I was talking about a minute ago, somewhere down the road. By creating inaccess now we’re basically saying we’ll pay more later to fix it, or there’s gonna be big problems.
So one of the things here is it’s not enough to simply have knowledge, it has to be knowledge soon in a way that guides our behavior so that we don’t have that big burden hanging over our heads 10, 20, 30 years down the road, especially in a place like Japan, where we have the world’s fastest aging population, roughly 30% over the age of 65. This is just going to get to be a bigger issue.
Jackie: Mobility issues become accessibility issues, become disability inclusion issues. We have, and simply thinking about the example you’ve given, there’s this idea that in the private sector with all of the hype around universal design and all of that, and keeping beta testing and agility, but beta testing for the minimum viable iteration of a product means that you’re doing the strict minimum.
You’re not actually saying, okay, we have a product that we want to test on 50 different types of people with disabilities, because we understand that people with disabilities have diversity and there is an internal breadth of competencies and abilities, and disabilities, diversabilities that we need to then also beta test for.
That’s not necessarily what we’re seeing coming out of a capitalist logic of do the strict minimum and just get it to market and test it for the average median person. And so the whole logic is not even attempting to acknowledge the diversity of each of those potential user groups that they think they’re designing and solving for.
Mark: And the most important thing is that it’s a losing proposition. If you think about the long-term economic benefits, it makes so much more sense to include those stakeholders from the beginning, because as we’ve been mentioning, the burden is going to fall on the people around them who have to make up the difference.
If you can have it be accessible for a lot of people from the start, have it be something that’s flexible, customizable, changeable over time, then they’re actually going to be in a position to support a lot more people, both physically, emotionally, but again economically. It just seems like the right move.
So there is a conversation around how do you do that? And this comes back to our earlier point, how do you get people at the table to know where to go, to know who to talk to, to know what to ask, to know if they can ask. This is I think one of the core issues. As consultants, as academics, I think this is one of the core issues that we grapple with is, how do you create that knowledge?
How do you create that space for having that conversation?
Jackie: And certainly one of the core elements for enjoi as a company, that’s committed to intersectional diversity as a core practice and a business model and a practice. It’s really been, I think for me, a journey over the last year and a half, setting up enjoi as a solo-preneurship with me sharing my consulting advice around that concept and that idea of intersectional diversity, I soon decided it didn’t work with the feminist ethic of wanting to have a team of 10 and even 15 different diverse colleagues each with a different lived reality and professional expertise that all of us can enrich each other with that sharing and that lifelong learning as we work together, as we reveal to each other and uncover the different kinds of blindspots that will be in all of our heads, because we can never close off all of the, we don’t know what we don’t know.
So we all bring in that depth of professional expertise, but we also bring in our lived realities so that we are thinking through, and I guess sometimes in the tech field they call this dog fooding.
If it’s not going to work for the enjoi team and all of the diversity of the enjoi team, it’s probably not going to work in a corporation. So we want to test what we think to be a good practice of thinking about all of the blind spots of those complex, the complex build out of what we need to be agile around and thinking around the maximum range of individual users or individual contexts and the workplace context that we’re solving for to maximize equality.
And maximize access so that we know how to then offer and recommend to other organizations how to do that. So it’s a conversation that’s constantly, it’s theory, it’s feminist political philosophy, it’s feminist legal studies if you will, and critical race studies brought into dialogue with queer theory, with the disability and accessibility studies that you’ve been pioneering in and all of that coming together also with our individual lived realities and our professional passions for this work.
Mark: Exactly. Just in the course of this conversation we have narrated my personal life history a little bit, I’ve spoken about philosophy a little bit, I’ve spoken about the different partners I’m engaged with from Buddhist monks to corporations, academics to engineers. I spend my time talking with, tomorrow I’m at the US embassy, the next day I’m at the Olympics, or the chamber of commerce.
And I’m speaking to these partners and trying to get them to see how their part of the conversation could work better if they include everyone in all these different spheres. And I think one of the things that we’ve been doing that I’m personally really passionate about and affected by, is this idea that we are combining our personal expertise with our policy expertise, with our partnerships with these different organizations and individuals, to really push the dial when it comes to the conversation around access and inclusion.
There’s so many steps left to be taken. And we’re talking about disability inclusion. I’ll give a little bit of history. I’ve been pushing it off, not wanting to go there, but I’ll say, in 2016 Japan implemented its first law for the elimination of discrimination against persons with disabilities. That was four years ago. The following year there was a cabinet office survey that said that 77% of the public didn’t know that law existed.
So awareness is just starting. That law allowed for accommodations in schools. What does that mean? If disabled students are getting an education, they might get employment. If they’re getting employment, they might be able to vocalize. And if they’re able to vocalize that will change how everyone thinks about access and inclusion.
So we are at the precipice historically of a major turning point in the conversation around access and inclusion. And I think if you are doing this work, whether you are a consultant, whether you are an entrepreneur, whether you are someone working with or around disabled people, and those in their communities, it’s such an important moment for Japan and for the world right now.
So it’s just that it’s really essential that we get this step right, and we start having these conversations.
Jackie: And we’re going to be, of course, as a team we’re developing teaser workshops, if you will, boot camps for people who are senior leaders, and middle managers, and learning and development professionals, everyone in between, who would be interested in having a bootcamp, a three hour workshop to get their feet wet in understanding the complexities of these issues. The opportunities really, the opportunities to build these into their systems and to think about getting it right from the beginning, because it is an economic opportunity, when we think about it.
And helping people see that economic opportunity is, I think, part of our mandate as our team. And then also combining that with the other workshops we’ll offer to help people think about, how do we deal with someone who might be lesbian, has a disability, and is a Japanese national, and is trying to integrate a workplace environment that is homophobic and not accessible and sexist towards women.
Those are a lot of different issues for that one individual to champion. Having teams that understand all of those different inequalities or challenges creates empathy and it creates potential for allyship. It creates potential for all of those different stakeholders in the company to move the dial together and build a better workplace environment for all of those different groups together.
And I think that’s the win-win ultimately for diversity and inclusion and also for innovation. So to really think forward, innovation is exciting. Imagine killing five birds with one policy option and because you’ve thought outside the box about how these things are interdependent, I just think that’s absolutely exciting.
I realize maybe I’m a policy geek, but we’ve had so many wonderful conversations about this Mark, that I find so exciting because it’s exciting innovation.
Mark: Let me pick up on this for a second. So let’s talk about the innovation potential in real concrete terms. I mentioned COVID earlier, I’m going to come back to it.
When everyone went online last Spring. Many people, many corporations, were having such a hard time transitioning to zoom. They didn’t really know how to get us online or how to dislocate meetings. Meanwhile, members of the disabled community, who do not have physical access to a lot of spaces, have been using remote communications technologies like zoom for the last 20 years.
And these folks are the experts who can then use their knowledge to inform non-disabled populations’ behavior. To inform the way of building better business practices. And that doesn’t just mean that we’re getting a disabled alternative or disabled replacement.
We are getting synthesis and we are getting innovation. And that innovation is profitable for both parties, disabled and non-disabled.
Jackie: It’s interesting that you mention that example because I was on a panel for women’s leadership counts out of the United States. And we had one of the keynote speakers was the North American president of Itochu.
And her observation was when they went digital in North America. And they had to realize and figure out in some ways, all of the different work-life balance issues and challenges that this was throwing at all of their teams who didn’t know how to do team building remotely, they didn’t understand, how do you separate your work and your life when you’re always at work in life?
It is all in one location. And of course, what they learned from that was that of course, mothers and the parents, the active caregiving staff. They were the experts in that piece of how to juggle and carve out work-life balance. But no one when they were drafting their COVID response policy, thought to go check in with all of their working parents to say you might have some advice on how to do this.
And you’re used to flex work and you’re used to scheduling around homeschooling options or PTA meetings. Maybe we should bring you into the conversation because you’re experts in this. And it was such an interesting and vulnerable learning that she shared on that conference. That echoes exactly what you’ve said about how that was a learning for all the staff and employees at that point.
Mark: Yeah. And again, it comes back to the intersectional possibilities, not just local to Japan, but global. How is a 30 year old disabled American like myself gonna be able to add value to the conversation in Japan? And how am I gonna be able to translate that value back to the US?
Jackie: Yeah, I know. I know. You’re adding so much value. So much that we’re going to share, we’re sharing obviously today in this interview, but we’re going to keep sharing and certainly stay tuned. Cause we hope to have Mark hosting some of these live stream conversations also in the fall.
So we can share even further with his thought leadership in this area. And I would love to, if I could, Mark, we have a few minutes left. What would be your main key message to the audience listening out of your lived experience and your intense professional expertise on these areas?
Mark: I think to sum it up very briefly, disability saves non-disabled lives. Put another way, the world that we live in, the trains that we take, the schools that we go to, the workplaces that we inhabit, the entertainment venues that we spend our time at, all of these are shaped by access. That access built for many different people, with many different types of bodies and many different types of minds.
But we’re all interdependent as we’ve seen through this conversation. And I think that recognizing that interdependence and actively embracing it, actively starting from a disabled position, for instance, and thinking about, wait a minute, if a wheelchair user needs access to that kind of space, what can I do to make life easier for them and therefore myself, because I’m also embedded in that space.
That way of thinking can change the world. And I think that the idea that we need to invite people to the table, we need to get that expertise, and we need to act on it. That’s my sort of takeaway here is, if a disabled American who travels back and forth between Japan and the US, is able to in some way change and make life better for folks in Japan, well, my Japanese colleagues could do the same thing.
And I hope that going forward we’ll all do what we can to embrace diversity, to work towards innovation, and to make the world a more inclusive, interesting, and fun place.
Jackie: Exactly. Awesome. That is a fabulous takeaway. And I couldn’t agree more. So on that note, please allow me to thank you Mark, for joining today in Diversity rocks innovation!
This has been a really stimulating conversation and I am so grateful that you’re having your 30th birthday today and that you did pursue beyond the 30 days that you initially were told you might live so many years ago. And that you’ve pursued across so many different challenges through experiencing Japan first time with more full access.
Second time, a little bit less access, third time, again different levels of access. And the learnings that you bring forward out of that with all of your professional, obviously deep research and policy expertise on these issues, bringing that together is so inspiring to me. And so I’m very grateful that you’ve joined the enjoi diversity innovation team as a consultant and as an educator. I think you have a lot that we’re going to be sharing and that you are already sharing with our team and I feel very blessed.
So thank you for that. And of course we, as a team, have lots of things happening. We’re preparing actually for a pitch next week with impact tech accelerator that is funded by the Nippon foundation. And so our team is slowly preparing for that pitch. So we will be taking a break next Tuesday and also during the golden week period so that we can move forward and also engage in some self-care as a team.
Why don’t I do that for enjoi? And why don’t we do that about diversity and innovation? So that really was such an inspiration. Thank you Mark.