Valerie Fletcher has been Executive Director of the Institute for Human Centered Design since 1998. She currently oversees projects ranging from the national website on accessibility and inclusive design in cultural facilities for the National Endowment for the Arts.
Chrissy Casavant: Hi Valerie! Thanks so much for taking the time to be here with me today. I’m working on my thesis at Boston University. My thesis topic is inclusive design as a whole, but then I’m also looking into it from the lens of inclusive wellness and also inclusive healthcare. Those are two industries that are really interesting and important to me. So it’s more of an exploration, and part of that is conducting interviews.
Valerie Fletcher: I’d really like to speak to that issue of perception relative to inclusive wellbeing, wellness and healthcare.
C: Yeah! We can jump right into that.
V: Can we? We actually have developed a proposal for a research project that looks at the design of information and communication for BIPOC communities with the experience of disability. One of the issues is that there is almost no evidence that people in BIPOC communities are self identifying as having a disability whatsoever, even though they have the highest rates of disability. You can understand why that is for a variety of reasons: one is “what the hell’s in it for me?” White middle-class people have led the disability rights movement from the beginning, and it was based on the women’s rights movement and gay rights movement and to some extent the Civil Rights Movement, but it was really identity-based. For a white person, it’s easy to understand why one might choose an identity and then defend that identity as legitimate. Why would a person from a BIPOC community need another identity? They don’t necessarily associate with the dominant culture in our society, but they’re not looking for an identity, they’ve got that pretty well covered. At least in my very unscientific experience even people with what we would consider quite significant disabilities refer to their issues as health issues.
C: Oh interesting.
V: I think that that’s part of the key. “Disability” has gone off on a particular road that has worked for white Americans, but it has not served the people who have the highest rates of disability. The issue I think is to figure out the door to be able to talk about rights within a framework that starts with health and wellness. Does that make sense to you?
C: Yeah, that’s fascinating.
V: You know sometimes when you analyze things for a long time, it then seems self evident? It wasn’t self-evident to start, now it’s self evident. You can’t go down that road using language that people just object to.
C: Sure, I get that.
V: The inclusive or universal design movement really had the underpinnings of an original focus on the world’s aging population, on the lived experience, and the functional limitations or disability. Everyone doesn’t have the same attitude towards disability: with aging, by the time your life is over, you’ve experienced something of a function limitation because it’s just sort of in the cards. All parts of our bodies don’t last in the same way, so you have some experience in a physical or sensory or brain-based issue before you’re done. Those people almost never, I mean anybody really with an acquired disability over 70, would never self-identify as having a disability. My dad was blind, deaf, ate through a stomach tube, was on oxygen 15 hours a day and used a cane. And he would say “Honey, I’m not a man with a disability, I’ve never used a wheelchair!”
Chrissy Casavant: Hi Valerie! Thanks so much for taking the time to be here with me today. I’m working on my thesis at Boston University. My thesis topic is inclusive design as a whole, but then I’m also looking into it from the lens of inclusive wellness and also inclusive healthcare. Those are two industries that are really interesting and important to me. So it’s more of an exploration, and part of that is conducting interviews.
Valerie Fletcher: I’d really like to speak to that issue of perception relative to inclusive wellbeing, wellness and healthcare.
C: Yeah! We can jump right into that.
V: Can we? We actually have developed a proposal for a research project that looks at the design of information and communication for BIPOC communities with the experience of disability. One of the issues is that there is almost no evidence that people in BIPOC communities are self identifying as having a disability whatsoever, even though they have the highest rates of disability. You can understand why that is for a variety of reasons: one is “what the hell’s in it for me?” White middle-class people have led the disability rights movement from the beginning, and it was based on the women’s rights movement and gay rights movement and to some extent the Civil Rights Movement, but it was really identity-based. For a white person, it’s easy to understand why one might choose an identity and then defend that identity as legitimate. Why would a person from a BIPOC community need another identity? They don’t necessarily associate with the dominant culture in our society, but they’re not looking for an identity, they’ve got that pretty well covered. At least in my very unscientific experience even people with what we would consider quite significant disabilities refer to their issues as health issues.
C: Oh interesting.
V: I think that that’s part of the key. “Disability” has gone off on a particular road that has worked for white Americans, but it has not served the people who have the highest rates of disability. The issue I think is to figure out the door to be able to talk about rights within a framework that starts with health and wellness. Does that make sense to you?
C: Yeah, that’s fascinating.
V: You know sometimes when you analyze things for a long time, it then seems self evident? It wasn’t self-evident to start, now it’s self evident. You can’t go down that road using language that people just object to.
C: Sure, I get that.
V: The inclusive or universal design movement really had the underpinnings of an original focus on the world’s aging population, on the lived experience, and the functional limitations or disability. Everyone doesn’t have the same attitude towards disability: with aging, by the time your life is over, you’ve experienced something of a function limitation because it’s just sort of in the cards. All parts of our bodies don’t last in the same way, so you have some experience in a physical or sensory or brain-based issue before you’re done. Those people almost never, I mean anybody really with an acquired disability over 70, would never self-identify as having a disability. My dad was blind, deaf, ate through a stomach tube, was on oxygen 15 hours a day and used a cane. And he would say “Honey, I’m not a man with a disability, I’ve never used a wheelchair!”
C: There you go.
V: There you go! But that’s fairly normal. There’s actually a very tiny proportion of people who would self identify as disabled. And they tend to have conditions that are congenital or acquired in early adulthood or childhood. More often, those that identify are particularly evident, so you can see a white cane, or a service animal, or wheelchair, and that’s actually only a tiny proportion. 26% of adults in America are considered by census to be people with disabilities. Only 1.4% use wheelchairs. So you can see how it’s kind of problematic. In the last 20 years, brain based reasons for disability are rising to be number two for all adults. They are absolutely number one for children and have been for two decades. Of course, children grow up, so it’s the primary reason for functional limitations for a young adult in America. We finally, maybe, are going to deal with that from the perspective of health and wellbeing. In a post COVID environment, if nothing else, we now have a kind of awareness about mental health issues there’s never been there. No stigma, these are realities, how dare we ignore them. So it’s a fascinating moment so I’m delighted that you are looking at these.
C: I feel like inclusive design is something that gets pushed to the side in traditional design education and it’s something that I think is personally important so I’m trying to educate myself and learn as much as I can to be the most sensitive designer I can be.
V: That’s really terrific.
C: I’m trying to learn as much as I can. Obviously there’s an end date to my thesis, but I want to keep learning and reading.
V: And there’s not a ton of information on graphics, it’s not so easy, but it’s really important.
C: That’s actually how I found you guys. And you happen to be in Boston, which is coincidental. I was trying to do research and find guidelines and in the history of inclusive design and I found so many resources that I was able to use from your website. I absorbed a lot really quickly.
V: Oh good, I’m glad to hear that.
C: Could you tell me a little bit about yourself and what your career path was to get to where you are now? It sounds like you’ve had a lot of unique experiences.
V: I’ve actually run the organization since 1998. That is by a long stretch the longest I’ve ever done anything. My career has remained divided between the two things that drive me. One of them is social justice, and the other is design. I did them separately, so I ran a studio business and I would then decide I couldn’t do design because it was too indulgent, it wasn’t moving the needle, it wasn’t changing the world and I needed to do that. The two things that have been the overriding focus of my social justice work have been racial discrimination and mental health.
C: That sounds like me in a lot of ways.
V: There you go! But that’s fairly normal. There’s actually a very tiny proportion of people who would self identify as disabled. And they tend to have conditions that are congenital or acquired in early adulthood or childhood. More often, those that identify are particularly evident, so you can see a white cane, or a service animal, or wheelchair, and that’s actually only a tiny proportion. 26% of adults in America are considered by census to be people with disabilities. Only 1.4% use wheelchairs. So you can see how it’s kind of problematic. In the last 20 years, brain based reasons for disability are rising to be number two for all adults. They are absolutely number one for children and have been for two decades. Of course, children grow up, so it’s the primary reason for functional limitations for a young adult in America. We finally, maybe, are going to deal with that from the perspective of health and wellbeing. In a post COVID environment, if nothing else, we now have a kind of awareness about mental health issues there’s never been there. No stigma, these are realities, how dare we ignore them. So it’s a fascinating moment so I’m delighted that you are looking at these.
C: I feel like inclusive design is something that gets pushed to the side in traditional design education and it’s something that I think is personally important so I’m trying to educate myself and learn as much as I can to be the most sensitive designer I can be.
V: That’s really terrific.
C: I’m trying to learn as much as I can. Obviously there’s an end date to my thesis, but I want to keep learning and reading.
V: And there’s not a ton of information on graphics, it’s not so easy, but it’s really important.
C: That’s actually how I found you guys. And you happen to be in Boston, which is coincidental. I was trying to do research and find guidelines and in the history of inclusive design and I found so many resources that I was able to use from your website. I absorbed a lot really quickly.
V: Oh good, I’m glad to hear that.
C: Could you tell me a little bit about yourself and what your career path was to get to where you are now? It sounds like you’ve had a lot of unique experiences.
V: I’ve actually run the organization since 1998. That is by a long stretch the longest I’ve ever done anything. My career has remained divided between the two things that drive me. One of them is social justice, and the other is design. I did them separately, so I ran a studio business and I would then decide I couldn’t do design because it was too indulgent, it wasn’t moving the needle, it wasn’t changing the world and I needed to do that. The two things that have been the overriding focus of my social justice work have been racial discrimination and mental health.
C: That sounds like me in a lot of ways.
V: Well, my grandfather was Algonquin Iroquois and I had an early understanding of the irrationality of racism. That pervasive societal attitude that people with mental health struggles are somehow like other beings, that these are realities to be ashamed of. In my family I have bipolar illness on both my mother’s side and my father’s side, so I had a grandfather, an uncle, a cousin and my brother, and I saw that kind of distortion of mental illness as something to be ashamed of. So public mental health was part of the arc of my career and I was very fortunate that I had an opportunity to start in direct care and end up as the Deputy Commissioner of Mental Health here in Massachusetts, and led the largest planning process ever undertaken in the State Mental Health System. So I’ve been lucky, and the opportunity for innovation was amazing. The opportunity for the engagement of people: amazing. But you know, state agencies are highly political. I left and I was doing consulting briefly. I realized I do not want to travel constantly by myself, peddling an idea that I really valued but it’s really just peddling. You’re not really staying long enough to do anything.
C: Right, that’s hard.
V: A friend was on the board of directors of this organization, which was then called Adaptive Environments. I had been running a budget that was almost 560 million dollars. So this budget was tiny, but I thought there was something there that I needed to pay attention to. It was the early days of universal and inclusive design, because the principles had just been published that year. I looked at it and I just started plowing through the state-of-the-art information at the time. And this organization was very much at the forefront of those early days. We published the first book with 22 case studies on strategies for teaching universal design in 1995. This is design that matters, this is design that actually recognizes what design can do. I think I had an appreciation of that partly because I was a textile designer and the reality is most textile designers end up as fashion designers because that’s how you make a living. I had to make it work. I ended up with a very expensive line, I was very lucky that I made a living from the get-go and I had a wonderful client base. Not surprising, the people who can afford very fancy clothes are older women.
C: That makes sense.
V: So part of my expertise was really figuring out what clothing design worked best on older women to make them feel great about themselves and look good. It’s really that power of design to really shape directly human experience, at a very small scale. But it’s not just how it looks, it’s what it can do. So I’ve never looked back, Chrissy. I was very lucky. We ran the first international conference ever six months after I started. Then we did four more, every two years. We did one in Providence with RISD in 2000, and 2002 we went to Japan and did it with students in Yokohama, Rio de Janeiro two years later in 2004, in 2006 back to Japan in Kyoto. And then I kind of looked up and said “I don’t want to run conferences for a living.” The movement had very rapidly exploded and it was partly because there’s power in bringing people together and we had an average of 32 countries. So there were people from all over the world and they were all kind of having the same idea at the same time. The excitement of being able to cross fertilize was unbelievable, and I made that decision with my eyes wide open but I also had a great deal of guilt about the environmental cost of what we’re doing.
C: Right, that’s hard.
V: A friend was on the board of directors of this organization, which was then called Adaptive Environments. I had been running a budget that was almost 560 million dollars. So this budget was tiny, but I thought there was something there that I needed to pay attention to. It was the early days of universal and inclusive design, because the principles had just been published that year. I looked at it and I just started plowing through the state-of-the-art information at the time. And this organization was very much at the forefront of those early days. We published the first book with 22 case studies on strategies for teaching universal design in 1995. This is design that matters, this is design that actually recognizes what design can do. I think I had an appreciation of that partly because I was a textile designer and the reality is most textile designers end up as fashion designers because that’s how you make a living. I had to make it work. I ended up with a very expensive line, I was very lucky that I made a living from the get-go and I had a wonderful client base. Not surprising, the people who can afford very fancy clothes are older women.
C: That makes sense.
V: So part of my expertise was really figuring out what clothing design worked best on older women to make them feel great about themselves and look good. It’s really that power of design to really shape directly human experience, at a very small scale. But it’s not just how it looks, it’s what it can do. So I’ve never looked back, Chrissy. I was very lucky. We ran the first international conference ever six months after I started. Then we did four more, every two years. We did one in Providence with RISD in 2000, and 2002 we went to Japan and did it with students in Yokohama, Rio de Janeiro two years later in 2004, in 2006 back to Japan in Kyoto. And then I kind of looked up and said “I don’t want to run conferences for a living.” The movement had very rapidly exploded and it was partly because there’s power in bringing people together and we had an average of 32 countries. So there were people from all over the world and they were all kind of having the same idea at the same time. The excitement of being able to cross fertilize was unbelievable, and I made that decision with my eyes wide open but I also had a great deal of guilt about the environmental cost of what we’re doing.
C: I spent time planning conferences, so I relate to that.
V: People flying thousands of miles to come to this event and was that really necessary? At the time, it was 2006, it was a moment of reckoning, in which people suddenly said “Oh my God, designers are really at the heart of an environmental crisis, they don’t care at all about the environment.” And I felt that it was irresponsible, and I also thought we’d just keep doing it digitally. And it hasn’t actually worked like that. Though we do a monthly webcast now and get people from all over the world, I’ve become one of a handful of people in the world who go from one country to another in keynote conferences, where they are way too often reinventing the wheel. Not going way beyond where they’ve been before. So I have a tinge of regret. I know the power of bringing people together, but it means that there’s been a great deal of time and energy wasted on replication. And discovering things over again that should have been shared and understood so that you go beyond them. One of my biggest regrets now is that we do a particular kind of research with real people, and you would enjoy this, it might be something that if you stay in the Boston area we would welcome you to observe this.
C: Ooh yes! That sounds great.
V: It’s contextual inquiry, so real people, real environments, real service design, and we learn what works and what fails. But we have failed, as has pretty much everybody else, to figure out how to organize that in such a way that we can build shared knowledge. So that instead of project-by-project, we build data about human experience that informs the design of the project. We allow it to roll forward and make it available to anyone, so that’s a big priority for me now. So that you would know, for example, what are the perceptual issues of neurodiversity? Or of low vision? How pervasive is it, what do people see? That’s the variety of that experience. Where does color vision enter? Who has difficulty with it? If you had that to work with, given your interest, you’d run with it. I think it would reinforce the inherent creativity of always going farther, always learning more, the next lesson. It is so far from accessibility, in which the usual response is “just tell me what I have to do,” because people don’t think it’s about creating. It’s a curse, and if we allowed inclusive design to land in that space, who would care? It’s got to be understood as deeply creative, that you are uncovering new insights on design that work.
C: And how do you fix that problem of attitude and also shared knowledge?
V: The shared knowledge thing, I am working on that now. I’m looking at GIS: geographic information systems have become a huge thing, so you can get in any physical environment, you probably can pull up data on the environment, on economics, on health, on education. It’s kind of staggering, what’s out there. I’m interested in learning about people’s sense of their needs and wants about design at that level, particularly the least advantaged among us. So looking at the poorest communities and people of color, and really learn about housing, school design, parks, playgrounds, street sidewalks and access to transit. Those are a population of people who don’t think of that design, except maybe they care about fashion, but other than that, design is something they learn to live with, because they don’t have a sense that somebody’s making decisions about this. Somebody does this, this is their job, but I’ve worked a lot in communities that really had no idea.
C: Sure.
V: People flying thousands of miles to come to this event and was that really necessary? At the time, it was 2006, it was a moment of reckoning, in which people suddenly said “Oh my God, designers are really at the heart of an environmental crisis, they don’t care at all about the environment.” And I felt that it was irresponsible, and I also thought we’d just keep doing it digitally. And it hasn’t actually worked like that. Though we do a monthly webcast now and get people from all over the world, I’ve become one of a handful of people in the world who go from one country to another in keynote conferences, where they are way too often reinventing the wheel. Not going way beyond where they’ve been before. So I have a tinge of regret. I know the power of bringing people together, but it means that there’s been a great deal of time and energy wasted on replication. And discovering things over again that should have been shared and understood so that you go beyond them. One of my biggest regrets now is that we do a particular kind of research with real people, and you would enjoy this, it might be something that if you stay in the Boston area we would welcome you to observe this.
C: Ooh yes! That sounds great.
V: It’s contextual inquiry, so real people, real environments, real service design, and we learn what works and what fails. But we have failed, as has pretty much everybody else, to figure out how to organize that in such a way that we can build shared knowledge. So that instead of project-by-project, we build data about human experience that informs the design of the project. We allow it to roll forward and make it available to anyone, so that’s a big priority for me now. So that you would know, for example, what are the perceptual issues of neurodiversity? Or of low vision? How pervasive is it, what do people see? That’s the variety of that experience. Where does color vision enter? Who has difficulty with it? If you had that to work with, given your interest, you’d run with it. I think it would reinforce the inherent creativity of always going farther, always learning more, the next lesson. It is so far from accessibility, in which the usual response is “just tell me what I have to do,” because people don’t think it’s about creating. It’s a curse, and if we allowed inclusive design to land in that space, who would care? It’s got to be understood as deeply creative, that you are uncovering new insights on design that work.
C: And how do you fix that problem of attitude and also shared knowledge?
V: The shared knowledge thing, I am working on that now. I’m looking at GIS: geographic information systems have become a huge thing, so you can get in any physical environment, you probably can pull up data on the environment, on economics, on health, on education. It’s kind of staggering, what’s out there. I’m interested in learning about people’s sense of their needs and wants about design at that level, particularly the least advantaged among us. So looking at the poorest communities and people of color, and really learn about housing, school design, parks, playgrounds, street sidewalks and access to transit. Those are a population of people who don’t think of that design, except maybe they care about fashion, but other than that, design is something they learn to live with, because they don’t have a sense that somebody’s making decisions about this. Somebody does this, this is their job, but I’ve worked a lot in communities that really had no idea.
C: Sure.
V: It’s lousy public schools, Boston is full of lousy public schools. They’re horrible in every way. They have bad light, they have bad acoustics, they have ugly space, they have bad materials, they mold. And yet, the teachers and the students feel like their job is to figure out how to make this bad environment work. We do a lot of work in museums, so I don’t know if that’s an area of your interest, but we are working at any given time on a half dozen projects at a museum.
C: What sort of projects at a museum do you do?
V: It could be everything, so we’re doing an evaluation of existing conditions, but more often than not we’re working on exhibits.
C: So making the exhibits as inclusive as possible?
V: Yes, in every way. One of our projects in the past year was exhibits at the new Olympic and Paralympic Museum in Colorado Springs. And that actually was pretty remarkable in terms of pushing the limits. There are some things that have happened there that have never happened anywhere.
C: Like what sort of things?
V: If you need, for example ASL, or if you need captioning, or if you need audio description, or if you need Braille, every exhibit you go to when you arrive gives you that. It’s pretty seamless.
C: That’s very cool.
V: It wasn’t us that invented this, it was a group in Manchester England that we’re working with. It’s the idea that it’s seamless and it’s cool. It’s not clunky, it’s not weird, it’s not going to isolate somebody. One of the things we learned quickly is that you can’t use paralympians as user experts. You can use them a little, but they’re so unusual in their abilities that you have to mix it up with just folks.
C: What sort of projects at a museum do you do?
V: It could be everything, so we’re doing an evaluation of existing conditions, but more often than not we’re working on exhibits.
C: So making the exhibits as inclusive as possible?
V: Yes, in every way. One of our projects in the past year was exhibits at the new Olympic and Paralympic Museum in Colorado Springs. And that actually was pretty remarkable in terms of pushing the limits. There are some things that have happened there that have never happened anywhere.
C: Like what sort of things?
V: If you need, for example ASL, or if you need captioning, or if you need audio description, or if you need Braille, every exhibit you go to when you arrive gives you that. It’s pretty seamless.
C: That’s very cool.
V: It wasn’t us that invented this, it was a group in Manchester England that we’re working with. It’s the idea that it’s seamless and it’s cool. It’s not clunky, it’s not weird, it’s not going to isolate somebody. One of the things we learned quickly is that you can’t use paralympians as user experts. You can use them a little, but they’re so unusual in their abilities that you have to mix it up with just folks.
C: So what does your design process look like for a project like that, where there are so many varied abilities?
V: We try to find the overlapping solution. We’ve got a new project that we’re working on for a college. This time we’re looking at 3 dormitories, and a dormitory has got to accommodate people of all sorts over the course of its life, and it probably won’t be renovated for 35 years, so it better look down the road. And today, if we’re doing dormitories we’re always looking at patterns. So it isn’t that you’re looking at an individual, but you’re looking at trends. One of the trends, for fairly elite schools, is that we have a far higher proportion of people who are neurodiverse. On the dormitory side, there are very significant design implications. These are people who are often hyper-alert to sound and light. You want to be able to allow an individual to tailor the sound and light in their room, but protect others around them from the sounds they might make. So the acoustical conditions are really important. We also have learned over time that that population should always be allowed a private room. Sharing a room with a neurodiverse person and forcing a neurodiverse person to share a room is not a good idea. The level of stress and the likelihood of time and energy spent resolving things isn’t worth it. One other single issue that has made a big difference in a lot of schools, regardless of the school’s pet policy, is that dorms allow pets of any kind. Those are the kind of things that really make a difference.
C: I hadn’t thought of that before.
V: If you haven’t come across it, one key concept is that we’ve really moved beyond the idea of barrier removal, that’s an accessibility idea. The World Health Organization redefined disability as a contextual variable. Function limitation is a fact that disability is a negative thing created at the intersection of a person and their environment, and importantly that’s physical information, communication, policy, and attitude. Think about that in your healthcare experience. The individual experiencing the environment doesn’t care whether you’ve got a responsibility only for graphics, if they’re having a bad experience because the place is so noisy. They just want the environment to be better. The goal is to create a facilitating environment. I think that’s a much more creative and open-ended kind of conversation to have. What does a facilitating environment mean for someone with an anxiety disorder? Or for someone with a chronic health condition that involves fatigue? I think it’s much more aspirational.
V: We try to find the overlapping solution. We’ve got a new project that we’re working on for a college. This time we’re looking at 3 dormitories, and a dormitory has got to accommodate people of all sorts over the course of its life, and it probably won’t be renovated for 35 years, so it better look down the road. And today, if we’re doing dormitories we’re always looking at patterns. So it isn’t that you’re looking at an individual, but you’re looking at trends. One of the trends, for fairly elite schools, is that we have a far higher proportion of people who are neurodiverse. On the dormitory side, there are very significant design implications. These are people who are often hyper-alert to sound and light. You want to be able to allow an individual to tailor the sound and light in their room, but protect others around them from the sounds they might make. So the acoustical conditions are really important. We also have learned over time that that population should always be allowed a private room. Sharing a room with a neurodiverse person and forcing a neurodiverse person to share a room is not a good idea. The level of stress and the likelihood of time and energy spent resolving things isn’t worth it. One other single issue that has made a big difference in a lot of schools, regardless of the school’s pet policy, is that dorms allow pets of any kind. Those are the kind of things that really make a difference.
C: I hadn’t thought of that before.
V: If you haven’t come across it, one key concept is that we’ve really moved beyond the idea of barrier removal, that’s an accessibility idea. The World Health Organization redefined disability as a contextual variable. Function limitation is a fact that disability is a negative thing created at the intersection of a person and their environment, and importantly that’s physical information, communication, policy, and attitude. Think about that in your healthcare experience. The individual experiencing the environment doesn’t care whether you’ve got a responsibility only for graphics, if they’re having a bad experience because the place is so noisy. They just want the environment to be better. The goal is to create a facilitating environment. I think that’s a much more creative and open-ended kind of conversation to have. What does a facilitating environment mean for someone with an anxiety disorder? Or for someone with a chronic health condition that involves fatigue? I think it’s much more aspirational.
C: How do you go about doing your research to find all of these potentially excluded people and make sure that they’re part of the process?
V: We have over 500 people here in Boston, they range from late teens to late 80s. We call them user experts. They all have lived experience with either physical, or sensory, or brain based issues, and they’re all paid for their time. Last year was rough, because for the most part these people are defined by being vulnerable. We did as much as we could, and we actually have a webcast event doing it virtually. We worked with the Smithsonian doing some virtual reviews, and of course we do our digital reviews, which can be done virtually anyway. We are going to be closing our big space down by North Station for a smaller storefront, maybe 2,000 square feet. We want to prioritize our research and our library. It’s not a circulating library, but since we have things that nobody else has, I want students like you to be able to visit and see state of the art of the literature, as it’s not all available digitally, and much of it is from outside the US. We’d also use it for public education, hoping that one day the public can actually interact. Things like having the screen facing the street with webcasts and other things of interest.
C: Has the pandemic changed inclusive design significantly? Obviously it’s changed your day to day work life, but has it changed what you’re actually doing?
V: It’s probably too soon to be sure, but I’ve got to tell you, we have been sought out by people at a rate unrivaled to any other year. We do no marketing and we get spoiled because people come looking for us, but the people who have come looking for us have been really interesting. Robert Wood Johnson Foundation came looking for us because they wanted to renovate their space post COVID, and wanted it to be inclusive. We are working with the state on a primer on the future of work through inclusive design review of all their principles and guidance. That’s a good thing! Mass General Brigham Health, our biggest health provider, has said that they won’t do anything anymore that we aren’t involved with, and we recently reviewed for them a model for an ambulatory surgical center, 60,000 square feet.
We’re working on the Holyoke Soldiers Home, again we’re the specialists, not the architects. The only time we do individualized design is in a facet of our work, which is not a dominant facet, but which I have been unable to not do, and that is do individual homes. On Monday I have a meeting with a couple in Concord, and they were referred by a widowed previous client who was fabulous. We did a model design build project with them. The husband had ALS, he was an affluent guy, he and his wife were both Harvard educated. When he got ALS he managed to get himself elected to the board of the ALS Foundation nationally, and then he quickly ended up as the president. And he wanted a house design that would give him the same advantages that having a really good physician and really good medication and a really good clinic would have. And there was no time to waste, because ALS is a horror. He did die, and the house was a success. It was a combination of physical and smart home design. It was all the tricks we knew for the physical house, so he could control heat, light, cooling, music, his elevator, windows and doors, and he could do it all with his hands or with his voice, and when he didn’t have his voice anymore he could do it with eye tracking.
C: That’s incredible! Wow.
V: We have over 500 people here in Boston, they range from late teens to late 80s. We call them user experts. They all have lived experience with either physical, or sensory, or brain based issues, and they’re all paid for their time. Last year was rough, because for the most part these people are defined by being vulnerable. We did as much as we could, and we actually have a webcast event doing it virtually. We worked with the Smithsonian doing some virtual reviews, and of course we do our digital reviews, which can be done virtually anyway. We are going to be closing our big space down by North Station for a smaller storefront, maybe 2,000 square feet. We want to prioritize our research and our library. It’s not a circulating library, but since we have things that nobody else has, I want students like you to be able to visit and see state of the art of the literature, as it’s not all available digitally, and much of it is from outside the US. We’d also use it for public education, hoping that one day the public can actually interact. Things like having the screen facing the street with webcasts and other things of interest.
C: Has the pandemic changed inclusive design significantly? Obviously it’s changed your day to day work life, but has it changed what you’re actually doing?
V: It’s probably too soon to be sure, but I’ve got to tell you, we have been sought out by people at a rate unrivaled to any other year. We do no marketing and we get spoiled because people come looking for us, but the people who have come looking for us have been really interesting. Robert Wood Johnson Foundation came looking for us because they wanted to renovate their space post COVID, and wanted it to be inclusive. We are working with the state on a primer on the future of work through inclusive design review of all their principles and guidance. That’s a good thing! Mass General Brigham Health, our biggest health provider, has said that they won’t do anything anymore that we aren’t involved with, and we recently reviewed for them a model for an ambulatory surgical center, 60,000 square feet.
We’re working on the Holyoke Soldiers Home, again we’re the specialists, not the architects. The only time we do individualized design is in a facet of our work, which is not a dominant facet, but which I have been unable to not do, and that is do individual homes. On Monday I have a meeting with a couple in Concord, and they were referred by a widowed previous client who was fabulous. We did a model design build project with them. The husband had ALS, he was an affluent guy, he and his wife were both Harvard educated. When he got ALS he managed to get himself elected to the board of the ALS Foundation nationally, and then he quickly ended up as the president. And he wanted a house design that would give him the same advantages that having a really good physician and really good medication and a really good clinic would have. And there was no time to waste, because ALS is a horror. He did die, and the house was a success. It was a combination of physical and smart home design. It was all the tricks we knew for the physical house, so he could control heat, light, cooling, music, his elevator, windows and doors, and he could do it all with his hands or with his voice, and when he didn’t have his voice anymore he could do it with eye tracking.
C: That’s incredible! Wow.
V: So this couple was referred by his widow. These projects are tailored to the whole family. If the spouse is anxious, and for example doesn’t want to be able to hear people who are working and taking care of her husband, she doesn’t want to hear them coming and going, so we deal with that stuff. We have a client who’s home we’re going to be renovating soon, and he had polio as a kid, and is one of the unfortunate people who have post-polio syndrome. There’s nothing you can do to exercise and build up your muscles so you can keep doing things. You’ve got only a fixed amount of muscle and energy left, it’s pretty scary. So of course we’re going to do that one. He’s our client, he’s my friend, and he trusts us and he doesn’t trust anybody else.
C: And that work is so fundamentally life changing for those people. It would be hard to say no, I can see that.
V: But if you did it every day, you’d have to close the doors because you couldn’t make enough money. It takes a lot of time because it’s very personal. You don’t have to hold the hands of a museum. If we’re working on a museum for example, physical stuff’s pretty easy. We might still test it, but it’s pretty straightforward. Once you get to the sensory and the brain based, there’s so little data on design responses to brain-based conditions, that we do extensive testing in that area. On the MBTA we’ve done extensive testing with sensory and brain based conditions because there’s nothing. One of the things we learned is how scary the Green Line is, and you’ll appreciate this. Picture not being able to hear. Oh my God! It comes in both directions on one track sometimes. So if you can’t see it or can’t hear it, you could easily be standing in the middle of the tracks looking for it. It’s really quite alarming. Now we’re working on green line transformation. Now we’re taking all that information and we’re applying it to the design of all the renovations to make the whole green line accessible and inclusive. We are committed to inclusive design.
C: Do you think that will become the standard for public places? Or is it sort of currently the standard?
V: Overwhelmingly, unless there is somebody really influencing how people think, accessibility is so stuck in a post-polio world, that imagined that wheelchair users were a big story. 1.4% of adults use wheelchairs outside of nursing homes. That should not be driving everything. I deal all the time with people who think “I want to make inclusive design in my multi-family housing development, I’m going to make every apartment wheelchair accessible.” You don’t need to do that. But let’s think about an apartment that is going to work for somebody with a traumatic brain injury, or an anxiety disorder? What does it look like inside an apartment where the acuity of their vision and their hearing is likely to diminish.
C: It’s fascinating! I’ve tried to do so much research on this and there’s just not a lot, so it’s great to hear you talk about it.
V: We’re sort of on the frontier of what people have no idea how to do. Those are the things that we’re really interested in. I tell you what, we haven’t run out of work!
C: And that work is so fundamentally life changing for those people. It would be hard to say no, I can see that.
V: But if you did it every day, you’d have to close the doors because you couldn’t make enough money. It takes a lot of time because it’s very personal. You don’t have to hold the hands of a museum. If we’re working on a museum for example, physical stuff’s pretty easy. We might still test it, but it’s pretty straightforward. Once you get to the sensory and the brain based, there’s so little data on design responses to brain-based conditions, that we do extensive testing in that area. On the MBTA we’ve done extensive testing with sensory and brain based conditions because there’s nothing. One of the things we learned is how scary the Green Line is, and you’ll appreciate this. Picture not being able to hear. Oh my God! It comes in both directions on one track sometimes. So if you can’t see it or can’t hear it, you could easily be standing in the middle of the tracks looking for it. It’s really quite alarming. Now we’re working on green line transformation. Now we’re taking all that information and we’re applying it to the design of all the renovations to make the whole green line accessible and inclusive. We are committed to inclusive design.
C: Do you think that will become the standard for public places? Or is it sort of currently the standard?
V: Overwhelmingly, unless there is somebody really influencing how people think, accessibility is so stuck in a post-polio world, that imagined that wheelchair users were a big story. 1.4% of adults use wheelchairs outside of nursing homes. That should not be driving everything. I deal all the time with people who think “I want to make inclusive design in my multi-family housing development, I’m going to make every apartment wheelchair accessible.” You don’t need to do that. But let’s think about an apartment that is going to work for somebody with a traumatic brain injury, or an anxiety disorder? What does it look like inside an apartment where the acuity of their vision and their hearing is likely to diminish.
C: It’s fascinating! I’ve tried to do so much research on this and there’s just not a lot, so it’s great to hear you talk about it.
V: We’re sort of on the frontier of what people have no idea how to do. Those are the things that we’re really interested in. I tell you what, we haven’t run out of work!