- By: Janet Roche & Carolyn Robbins
- Edited by: Andrew Parrella
- Guest: Valerie Fletcher
What is the state of disability in America today, and what does this mean to Inclusive Designers… especially in this time of Covid?
IDP sits down with Valerie Fletcher, Executive Director of the Institute for Human Centered Design (IHCD) in Boston, MA. She is an advocate and world think leader in all things Inclusive Design. Her research focuses on integrated social and environmentally sustainable solutions for multifamily housing, healthcare, culture, workplaces, and the public realm.
We discuss with Valerie the research paper and documentary she recently completed for the IHCD called The Changing Reality of Poverty in America: 2020. The project reexamines the experience of disability in America and shines a light on the stories of those all too often left behind. It also includes some eye-opening conclusions for Inclusive Designers.
Other topics include: ADA, toxic environments, Poverty in America, definitions of disability, functional limitations, neo-diversity and, of course, Inclusive Design.
Valerie Fletcher is Executive Director of the Institute for Human Centered Design (IHCD). She writes, lectures and works internationally. She currently oversees projects including the development of a new national website on accessibility and inclusive design in cultural facilities for the National Endowment for the Arts, as well as a wide range of consultation and design services to public and private entities in the US and globally.
Valerie’s career has been divided between design and public mental health. She was the former Deputy Commissioner of the Massachusetts Department of Mental Health, and has been a Special Advisor on Inclusive Design to the Open Society Institute and the UN Department of Economic and Social Affairs. She is the North American representative on the Board of the International Association for Universal Design (IAUD) in Japan.
“Inaction is a civil rights exclusion”
~ Valerie Fletcher, https://humancentereddesign.org
Matthew Brault, MPP; PJ Moynihan, Digital Eyes Film; Dr. Erica Walker, HPHS
“Not everything that is faced can be changed,
but nothing can be changed until it is faced”
• ADA Wheelchair Stats-There are currently about 2.7 million wheelchair users in the US
Designing for: The Changing Reality of Disability in America
Guests: Valerie Fletcher
(Music 1/ Show Intro)
Janet: In this series we will be discussing specific examples of design techniques that make a positive difference for people living with certain human conditions.
Carolyn: The more a designer understands the client and or the community the more effective and respectful the design will be.
Janet: Welcome to Inclusive Designers Podcast, I am your host, Janet Roche
Carolyn: and I am your moderator, Carolyn Robbins…
Janet: In this episode we will be talking to the amazing Valerie Fletcher, who is, among other things, the Executive Director of the ‘Institute for Human Centered Design’ in Boston, Massachusetts.
Carolyn: Valerie Fletcher has built her career advocating for the disabled. Her research focuses on integrated social and environmentally sustainable solutions for multifamily housing, healthcare, culture, workplaces, and the public realm.
Janet: We originally wanted to invite Valerie to talk about the 30th anniversary of the ADA, which is the American Disabilities Act, about its past, present and future, and we did… but Valerie being Valerie, there was a lot more to discuss than that.
Carolyn: Recently, Valerie and the IHCD released a new documentary video, and paper, called The Changing Reality of Disability in America: 2020. It highlights the correlation between poverty and disabilities.
Janet: We discuss everything from neo-diversity, poverty in America, functional limitations, the definition of handicapped, our toxic environments, and finally how COVID is changing the face of Inclusive Design.
Carolyn: We also explore how design is a civil right, and look at the role the infamous ISO, or International Standards Organization, plays in refining the standards to keep up with our ever-changing world.
Janet Here is our interview with Valerie Fletcher…
(Music 2 – Interview)
Janet: Hi and welcome to Inclusive Designers Podcast. I’m your host, Janet Roche. I’m here today, along with my moderator, Carolyn Robbins, and otherwise known as my producer, aficionado, expert, and what have you. And today we have somebody really special on the show. Somebody who I deeply admire, and someone who is such a champion for people who are very underserved in our built environment. Valerie Fletcher. Welcome, Valerie.
Valerie: Thank you Janet, thrilled to be here.
Janet: Thank you for so much for coming. Now, I want to talk about the paper you just did as well as the video, “Changing Reality of Disability in America, 2020” but first I want to tell you, how you told me about this. This was last year. This is a true story, and it was that, we were at a cocktail party for Mahesh Dass, who was just being, had his in vesture that morning and you had your audience around you. And so I waited patiently behind everybody to, like get in to see you. I kept trying to like create eye contact, like don’t leave, don’t leave.
And so finally, you know, everybody had had their piece of you and then they left, and you were gracious enough to hang out and talk to me. And I said, you know, “Hey, I’m going to be doing a podcast, you want to come on?” And you’re like, “I’m really busy. I’ve got this thing. We’ve just got a grant. We have this incredible grant to talk about, poverty and how it affects disability. And it’s incredible. And it’s going to be just like this incredible thing.” And I’m like, ‘oh my God’, you know, just when I think I’ve caught up to you, like you’re already in some other stratosphere of thinking and forward thinking and advocacy work. So that’s where I first heard about this project that you’ve now just finished. Do you want to talk a little bit about it?
Valerie: Sure. You know, one of the hard things about anybody who runs a design firm, and I’m fortunate enough to run a nonprofit design and educational, a global nonprofit. So we’re very fortunate on so many fronts, but we look a lot like a firm because we do consulting and design services as our bread and butter, mission driven.
And one of the hardest things to do—and I know you understand this because you’re a designer making your living doing what you know how to do—there is no time to do something that you don’t have any money for. You are so client driven that things that are eating away at you that need attention and time never get to life.
So I was very, very lucky that, the widow and two sons of a colleague who died very suddenly, in Vermont actually, 20 years ago, Alan Myers, who was a professor of public health and very much an early pioneer in looking at the role of the built environment in public health.
Janet: I hadn’t heard about him before I read this program that you wrote. And I was like, ‘dang’. I was like, ‘where was he, you know, going through school’, like he was amazing. Right?
Janet: He was an amazing, you know, fore thinker of some of these issues.
Valerie: Absolutely. Absolutely. And he was, you know, he was really on a quest, but he died. He died very suddenly. And so there was a fund set up, a Memorial fund. And his wife and sons asked, what would I do if I had some resources from the fund? And it was, it was such an extraordinary opportunity, you know, going and begging federal government or a big foundation, you know, to pursue something like this would not be likely. And there was a real public health angle to it. So extra good fortune that we were able to pursue this with private funding. And it was really out born out of faith that we would align with Alan’s values and that’s how it was born. Of course, it was born before COVID so…
Valerie: before the world changed …
Janet: or in some of these social justice issues had come about…
Janet: So, I mean, again, you got to remember when we, you and I were talking about this a year ago…
Valerie: It was December…
Janet: Right, it was, to me, I was, it was mind-blowing. I mean, I knew it, but it was mind blowing and, but now I watch all this stuff going down and I think like, bam, like Valerie was on it again.
Valerie: (laugh) so I was able to put a team together and that team included; a documentary filmmaker, who is our producer for our video on and webcast kind of work. PJ Moynihan from Digital Eyes Film. And he was all over it right away, which was very lucky, and was a core member of the team. It wasn’t like the video was, you know, the documentary was over here and the everything else was over here.
And then two other core players and one of them is a woman with a Doctorate from the Harvard School of Public Health, the Chan School, and that is Dr. Erica Walker. And we knew Erica because many years ago she was an intern of ours and got bitten by notions of the role of the environment, how significant the role the environment is. And she went on to earn a doctorate in public health, and this was an opportunity to bring her in. She actually has done most of her research work, her Doctorate, was in issues of noise. Noise that you cannot control as something that is a risk to mental and physical health. So really interesting work.
So Erica was part of the team. PJ was part of the team and the other key member of the team was a man named Matthew Brault. So Matt is a former point man on disability at US Census. So really deep experience and knowledge. And there just aren’t that many people. And I had already had the experience of working with Matt over a number of years. He’s been a consultant to us in really helping us to tell the story about— ‘what are the demographics? What is the fact of the experience of a functional limitation in America today?’— because I knew it was fundamentally different than people presumed.
You know as a designer, what do you know? You know you’re primarily oriented towards the standards of the Americans with Disabilities Act and the codes of the state you’re working in. And what do those codes and standards look at primarily? They look at wheelchair users. Because the challenge on the built environment is so obvious that people have come to think that disability and wheelchair use are very nearly synonymous.
Janet: And that is the only disability that people have, right? I mean, I mean, it’s something like, it’s crazy, like what, 10-percent of all Americans have some sort of, or use some sort of wheelchair or was it…
Valerie: oh no, it’s, so 26-percent of the adult population have a disability, only 1.4-percent. use wheeled mobility, ten times that number have difficulty walking. And we had known all of that because Matt has been working with us on demographics for New England. It’s been extremely valuable. We run the new England ADA center and it’s been extremely helpful for us to be able to disseminate, this is who we’re really talking about.
And, and more often than not, designers are looking at the standards, but they aren’t looking at the regulations. You know, the regulations are narrative, but the regulations are central to understanding the intent of the ADA. So the regulations define who has rights and who has responsibilities. And architect, licensed professionals in particular, have a very special type of responsibility and the client has a responsibility.
So that’s where that’s captured. And over the years, the standards have changed some and you know, there was new new requirements in 2010. It was modified and made coherent, at least to a large extent, with four other sets of standards so that they could talk to each other, which hadn’t been possible before.
But what had also changed is the definition overall had changed.
So there’d been a period of time at the very beginning when the ADA was passed in 1990. And at that point there was a number of 43-million adult Americans have a disability. Nobody can really back into that number now, but that was what was used in 1990. It was literally in the legislation. And then the courts began to hear cases relative to rights under the ADA and shrank the definition, quite aggressively shrank the definition of who has protections under the law.
And then in 2008 Congress passed something called the ADA Amendments Act. And that actually restored the original intent of who is covered. And it looked at the original concern for Activities of Daily Living, you know, ADLs, which you’re probably familiar with, but it also looked at bodily functions. So we were for the first time understanding that our systems, whether that is, you know, the GI tract or, you know, any number of systems, the cardiac system and the reproductive system, all of that is actually a system that if it is impaired, makes you eligible to be covered under the ADA.
So it had expanded quite substantially, back to the original intent and by 2020, we’re looking at 61-million American adults are people with disabilities. Overwhelmingly that number of people have conditions that you cannot see, that the majority of them acquired those conditions over time, that congenital limitations are still happening, still real, but they are a small percentage of the total.
Janet: I know we’ve had a side conversation about this, but the use of the universal wheelchair, and people tend to think that that is what disability is. And people have a hard time when they see people maybe with a placard, having a disability and using one of the, like those parking spaces. Somebody told me that they had had some sort of bypass surgery and they were able to get like a placard just to help them with the ADLs. They couldn’t walk very far. And some woman came over and yelled at him because he wasn’t in a wheelchair. And, he was angry as all get up. And I said, look, I said, here’s the good news is, is that at least she was trying to care. She was misinformed, but she was trying to care for the people who she believed really needed it. I think people are starting to understand it a little bit better, but I think something like the universal sign for a wheelchair is a little misleading for people with disabilities
Valerie: it’s one of those things where, shorthand language is hard to create and it’s hard to sustain. So I don’t know that that’s going to go anywhere. And it’s been reinforced a number of times. It’s been around for, we’re probably closing in on 70 years now. It’s not new. So I think that that’s part of the issue. and I think it’s that people are still unfamiliar with it.
So when, when we’re looking at these things, we’ve really tried to break it out. So people understand, what are the reasons for disability today? So that was the big question, we wanted to do that. And we also knew that there was a pattern in which inequity in America was a big driver of disability, but there was nothing really telling that story.
Janet: and this paper and this video completely covers that I think is pretty groundbreaking. So I’m sorry, I didn’t mean to interrupt…
Valerie: no, so part of it, part of it is that- it’s telling the story about the truth of what constitutes disability. Which doesn’t mean, that you have to self-identify as a person with a disability. You know, you’re being counted, whether you would ever adopt an identity of that. And I think for people who acquire a functional limitation over time, it’s really hard to say, now I’m a person with a disability, you know, you’re somewhere on the continuum. And some day you wake up and say, Oh, I’ve now arrived, I’m a person with a disability. And that, that is unusual. It does not happen. And for many people it’s why would I do that? What is the advantage for me?
Valerie: And when people think about disability, it’s very hard to sort of grapple with what does that mean when you’re talking in many cases about, degenerative conditions or conditions, chronic health conditions talking about the enormous issue of the brain and all of the conditions there.
Janet: Right. And that the whole brain part is just beginning to get explored.
Valerie: Yeah. So. Let me take a second to talk about this issue of ‘where does the brain fit’. So those of us who swim in this water every day know that for children in youth, say age 3 to 22, the norm for many, many years has been the dominant reason for a disability is brain-based. That is the norm among children and youth.
If you look at higher ed, and of course, we in Boston look at higher ed and, you know, understand, disability services is something that some people knock on the door because they need an accommodation. They have to now self-identify. It’s not the school’s responsibility, it’s your responsibility to ask. So we know overarchingly, we are looking at people who are served by disability services are overwhelmingly people with brain-based conditions. And you’re very different from one another. so, it might be mental health. It might be learning disabilities, which is the largest single category.
Janet: …count me into that one.
Valerie: You’re not special Janet…
Janet: no, I’m not…
Valerie: It could be developmental, intellectual limitations and different kinds of developmental delays. I think everybody is hyper aware of conditions like neuro diversity, which includes, but isn’t limited to autism. I mean, that’s become such a big topic. And then, the other issues that we don’t think about as often, brain injury.
Valerie: Really big deal. If you’ve ever known anybody with brain injury, it’s powerfully, imposing on essentially your entire self, your sense of self, your ability to function at every level. And then the rising tide of neurological conditions, which are, you know, growing very rapidly.
So at this point in time, we’re looking at mobility limitations remain the number one reason for disability among adults, but it’s mostly difficulty walking. So it’s walking distance and climbing stairs. And what is that about? That’s partly about the fact that we’ve got an aging population. We’re a lot older than we were – (Janet: We’re a lot older…) – 30 years ago as a nation…
Janet: …was it 2030 more people in the history of the world will be over the age of 65 than ever…
Valerie: Yes. And, in that case, it’s a lot of people who have conditions that they have acquired over time that get a lot worse after 65. But the brain, that whole spectrum, whether we call it cognition, it’s very difficult. There’s no standard terminology, is number two and rapidly rising, it’s not only the child and youth story, it’s the adult story. So really important that we recognize that this is now something that is impossible for us to ignore and to recognize it as legitimate. in the first days of the ADA, when the legislation was in progress, there was a big, a big challenge of getting parody between mental and physical reasons for disability.
It worked, it worked, but that was groundbreaking work. It was then reinforced years later at the international level by two things. One was The World Health Organization and the international classification of function, disability, and health. It took ten years to do it, to get global buy-in because you can’t, you can’t issue a policy without the member nations agreeing to it.
And this was radical. This was no longer the world health organization saying if you have this, then you are a person with a disability. Instead, it was this notion that it was contextual. This is where the big opportunity for designers comes in.
So the World Health Organization established this new measure of how do we think about these things? So they said, looking at global aging, they said ‘now functional limitation is a universal human phenomenon’. We are all going to get there unless we’re unlucky enough to die young. So functional limitation will be part of our life experience.
The second thing they talked about, again, was parody between mental and physical reasons for a functional limitation. But for those of us who design, the really big idea was that, so those things are now universal for all of us, we will all experience it at some point. It’s not about them over there in a fixed condition, it’s about the human condition.
But this notion of context was about a person with a functional limitation, interacts with the environment and they understood the context. You know, context and environment are kind of equal and the environment is the physical. And in 2001, when we were not quite so technology addicted, they still knew it was communication, information, policy and the all-important attitude.
So that holistic idea of the environment really was what they were talking about when it was contextual. What’s the deal here. So it means the intersection of a person and the environment, which means that those of us that create environments create the human context, you know, the social art of design, have an opportunity to minimize the negative and amplify the strengths of people with functional limitations. So that they construed disability as a negative that occurs at that intersection of the person and the environment.
Janet: Right. In terms of talking to designers, this is something that really sometimes irks me. Because I am a designer for human health and this is what I do and I have other designers, other architects that call me up and go— “Hey, I’m doing X, Y, and Z of a project, and I’m basically calling you to figure out how to get around the codes and how to try to figure out like, how can I pass my test without putting it in any of the work?” – and I thought it would be great if you could talk a little to designers out there that look at that as, they look at it as they try to tick the boxes. You know what I mean? Like, they’re just trying to tick the boxes. They’re not trying to come up with some real clever design ideas.
Valerie: I think it’s legitimate to acknowledge that one of the things about the challenge for designers is that they have requirements at the state level. You know, you’ve got to hit those, and at the federal level and on certain kinds of environments, it’s, it’s a nightmare. It’s very difficult in Massachusetts in particular and especially around housing. So that is, I want to legitimize the frustration. It’s fair to complain that it’s very, very complex.
We’re currently doing a little brochure on inclusive multi-family housing, but we’re doing it with illustrations that, excruciating detail in terms of this meets fair housing, this meets ADA, this meets MAAB, and this is what Inclusive Design looks like. So part of the problem is that sometimes when it gets too complex, you have essentially gutted any potential that somebody is going to be interested in doing more, in having this sense of what I can do for people.
Janet: Right. I think that’s where designers do have frustrations, the complexity of everything.
Janet: I mean, I don’t think there’s any dubious kind of thought process going through this, or they’re trying to kind of get away with things. I think it is, they’re just trying to figure it out. What do you say to those critics? I, we kind of touched on it a little bit, but what do you say to those critics that say, well, you know, it’s too difficult. We’re being kind of like a nanny state. Do you have any, I’m sure you have some choice words. (laughs)
Valerie: Private homes can be built any way you want, and people do generally do that though it’s often wise to think about the people with the most money who can pay the most to designers to invest in their homes, tend not to be young. And it’s often wise to give them features that will serve them well over time.
Valerie: No one wants to retrofit a fabulous home because it doesn’t actually work for them for very long. So just, just a thought. I think part of it is the way we teach people. Janet, I have a big problem with the way we teach people, that too often, issues of accessibility are taught with the plumbing and the electrical code. So if you are trained to think, just tell me what I have to do, that is where you go. You don’t think of it as part of the design process. You don’t think about, I’m designing for people. You know, I’m, this is really about the extraordinary role of designers in having a big influence on our lives.
I’d have to say, not to, not to impugn the electrical code and the plumbing code, but I never look at those without having to look them up. You know, I don’t ever incorporate those. But I think this notion of design for people, and I think part of what we’re frequently talking about is that this is, it’s not code, you know, at its core, the Americans with Disabilities Act is not code. It’s civil rights and civil rights in America, how to extend to design if you were going to make it work for people with disabilities, because design was such a factor. If functional limitation is the, you know, is really the definition. Then if you didn’t design things differently, you were excluding people. So inaction is a civil rights exclusion. So this was the first place in the world that actually incorporated design as a civil and a human right. And that has made an enormous difference across the world.
Janet: yeah, it’s so true. And, for myself. So, full disclosure, Valerie Fletcher and myself, we know each other from the Boston Architectural College in Boston and she’s on the board of trustees. And, she knows though, that I went through a particular program, which was one of the first of its kind in the United States, called Design for Human Health. And we look at designing in a more empathetic approach, and you talk about this in your paper, we look at the psychological, the sociological and the biological parts of the built environment and it’s, it’s an important piece.
And, and it’s funny, because it kind of goes back to the whole wheelchair conversation, is that when I would tell people that ‘this is what I was doing, and I’m very excited about it, I can’t wait to start helping teach other people about this’, and people were like, what do you need to know about people in wheelchairs? Like, try to explain to them that we’re looking at the environment as a whole on how it affects not only the person, but even how they looked at it in terms of society. And that goes back to the whole economics justice piece of what you’re talking about. Right?
Valerie: And, and I think even if you, you unpack the requirements relative to people who use wheelchairs and, you know, we’ve created all kinds of changes in the society because of, you know, the ability to use wheeled mobility to get around. I mean, when I was a kid, we didn’t have wheeled suitcases, you know, that had wheels, you lifted them up…
Janet: I may have dragged one through Europe. Yeah.
Valerie: Right, right. I mean, think of the fabulous array of wheeled mobility for babies and toddlers, you know, all of that is facilitated by level everything. You know that you can get around, you can make your way down on the street without thinking about it. And that’s been great. I mean, even if you get to bikes and scooters, you know, it’s made life much easier for bikes and scooters.
And there’s been many benefits for the very large population of people with difficulty walking. Also, it’s not literal wheeled mobility usage, but the standards are even limited there because they’re really focused on people with good upper body strength, which is not the story for everybody. If you know anybody with quadriplegia or MS or ALS, they are, they are using a chair with a far more restricted level of function than somebody with a paraplegic condition where they have good upper body strength. So the reach ranges are all presumed to be paraplegia.
So it’s important for us to, and to think about the polio epidemic was very significant in the development of early standards because it was so, such a devastating impact on the world population. And certainly, in the United States, many of the people who were leaders in the original movement were people who grew up with, as polio survivors. And so, you know, their needs were paramount and very obvious.
Janet: Right. They definitely were. And I have some friends whose parents, were really affected by the polio. So that brings up a good question: How do you see COVID changing the landscape in terms of design, in terms of people with disabilities. You know, because I think we’re going to have, I think it’s something that doesn’t get talked about about much and I might be wrong, but just as— I’m not a doctor, I just play one on my little podcast— it seems to be, there’s not a lot of discussion around the idea that there’s a lot of people that have had a lot of long-term effects with Covid and I know that it’s starting to come out. I did see a couple of articles actually just recently, but can you speak a little bit to, what do you see how that’s going to change things…
Valerie: I totally agree Janet, that, that it’s going to make a big difference. And I think that your work in Design for Human Health notions of fit well, wellbeing, the WELL building standards, all of that is more relevant than ever. And you may know people who, are suddenly very clearly people who aren’t going back to the workplace at all, because they have a condition they’ve never talked about before, because they didn’t have to, they didn’t need an accommodation. And we talk about that in the paper. So one of the conditions that is grown exponentially are people with auto-immune disease.
Janet: Right, because I mean, then there’s those invisible diseases and invisible conditions, I have a lot of friends who have all sorts of these invisible conditions.
Valerie: And we don’t know what causes them. But we do know that there’s a vulnerability related to the environment. We just don’t know exactly what it is, but certainly in a time of pandemic, they are not going back to the office or back to school. And I think part of the COVID response is that we need to think differently about how we are designing homes for one thing.
And there’s not much question that we have not got solutions in hand, and it’s much easier for people who have, you know, a private home where they can, ideally a private home where they can also spend some money, but this is not an easy situation for the thousands and thousands of Bostonians for example who are living in our 8-to-10 story rather new apartment buildings where there’s an emphasis on shared space, tiny living spaces. And if you’ve got roommates in that tiny living space, you are severely hampered in your ability to work remotely at home anyway.
And I think when we look at, we look at learning at home and kids— kids in public housing, kids in large families, kids in poor neighborhoods— are disadvantaged in a, in an obvious way. You know, it’s difficult for them to have any private space. They might share a bedroom with two or three other people. Parking yourself at the kitchen table is probably going to be noisy and disruptive. And your parent is going to hear everything you say. My brother’s a college professor who said, you know, the saddest thing for him was the first generation to college kids who, when they were in your classroom could for the first time in their lives, say things they’d never said before. Well, those aren’t going to be said at the kitchen table, if your mother’s behind you, (Janet: Interesting). You know, that transformation isn’t going to happen.
Valerie: And I think just to, just to add to the complexity of ‘how do we do this remote work, remote learning and remote medicine’. if you are not a privileged person with a lot of private space. I mean, who wants to visit their doctor in a shared room or in a communal living room,
Janet: And then that also gets, you know, gets into the whole HIPAA conversation. (Valerie: Yeah.) It’s, it’s a, it’s kind of incredible. I mean, yeah, I think we kind of understand at least for people with poverty, what they’re going through, but do you have any future…
Valerie: We actually think that there’s an opportunity because of Covid. So the pandemic…
Valerie: … is an opportunity that we haven’t seen in multiple generations to really look hard at, what’s not working anyway. And what do we need to change in order to have a future where I think the whole issue of equity becomes a much bigger story. And I think the Black Lives Matter movement coming on the heels of COVID and the killings, you know, brought a level of a coherent sense of shared understanding that hasn’t really been there. We’re all living the same experience of a global pandemic and in America, and actually shared around the world, this notion of outrage at racism. And I think inequity in America is something that can be demonstrated, can be documented. We got the data to prove that we are in worse shape than we were 60 years ago in terms of equity, in terms of equality of opportunity. And it has alarming ramifications for us, if nothing changes.
Valerie: And I think what, what we have now, however frightening our current situation, given a lack of resources, you know, just at— at the individual level, at the community level, at the city and the state level— you know, resources are a source of tremendous anxiety because we don’t know how things are going to be managed. But I think we have to recognize that this is our best chance at taking a hard look at how we do things and that we have to figure it out.
Janet: It’s an incredible opportunity. despite the pandemonium that seems to be part of this. It’s kind of like an, an incredible moment in time where we have to, and we have to as designers, we have to start stepping up and, and doing our part.
Valerie: Well, and I think, I think part of what we’ve allowed to happen without talking about it, is we don’t acknowledge what it’s costing us. We don’t acknowledge that at all. So at this point, now we spend more than anybody in the world on healthcare, 3.5-trillion dollars, and 90-percent of that is going to chronic health conditions and mental health conditions, 90-percent.
Janet: So we’re basically putting a bandaid on things. Right? I mean, and, but meanwhile though, there’s like a gusher, right?
Valerie: Well, and we’re doing it at the cost of systemic population health. So the reason we live longer now is because systemic population health was a priority. We invested in public health, which allows us to get past polio, get past smallpox, get past diphtheria, you know the kinds of things that were so dangerous to life in its early years, that for generations, people didn’t even name babies until they survived for 6-months or a year, because it was so risky. So, we’ve lost, we’ve lost the memory of that. And we’ve tied personal care is really where it all goes.
So the amount of money spent in the last couple of years of life for very long lives, you know, enormous investments of money, but we aren’t doing very well on preventive care. We aren’t really looking at some of the systemic issues that are costing everyone a fortune. On the ‘Center for Disease Control’ website, there’s a breakdown for every state and territory of how many people with a disability and what are you spending.
And part of what is so frustrating is that by doing nothing, by not allowing people to be independent, to work, to contribute, to participate, it’s costing money. It’s costing everybody money badly spent, because nobody actually wants to be in that dependent situation. And that’s part of what we’re trying to argue needs to be reversed. And if we’re going to have people contribute, then we’ve got to invest differently in housing and school and work at minimum.
Valerie: And certainly healthcare.
Janet: Yeah. again, your, your, your paper and your, your video is called ‘Changing Reality of Disability in America, 2020”. I’ll have it on, my website. And obviously you can go to…
Valerie: you can get the report and access to the documentary film from our website, right in the middle of the homepage. It’s www.humancentereddesign.org … two Ds, centered, and design.
Janet: One of the things when, when you and I met up last year, you did say that, the problems with poverty. And again, as we have an opportunity for change. So as, as designers, we can use some of this information that’s in this report and in the documentary to help support designer’s decisions to make some of these changes. So they can say to their clients or whomever, they could point to that information.
Valerie: We draw out one of the realities that I think is an important integration with notions of social and environmental sustainability marriage. And we use in the documentary, the story of Flint, Michigan, because it’s so well known. So, bad water, triple the rates of learning disabilities among those children. It turns out that the day that we aired the preliminary version of the documentary, there was a giant lawsuit that was won to give 600-million dollars to the children of Flint, Michigan to try to give them the supports that they need, now in at a desperate level, because of the harm caused by bad water.
But the interesting thing, and the heartbreaking thing is that there’s 2600 American cities whose water safety is worse than Flint, Michigan. And those are mostly places with high rates of poverty. People who aren’t poor won’t tolerate that. And it is not a neutral phenomenon. It is a phenomenon that will result in lifelong issues. In most cases, it’s the learning disabilities and the whole variety of where it intersects with the brain. It also tends to cause problems with pregnant women and the children they bear. So life term problems. Bad water, bad air. We didn’t do a specific segment on bad air, but poor neighborhoods in America are besieged by bad quality air.
Janet: Well they are usually places that are closer to like the airports, the ones that are closer to the highways. They’re the ones that are closer to…
Janet: right, right, right…
Valerie: Indian reservations, Native Americans have the highest rates of disability in America, they’re a very small population, just 1-percent now of all Americans. 40-percent of Native Americans have disabilities. And those are environments that are often, there, at least the reservation environment are built over mining sites. So toxic environments and high rates of all kinds of things related to those environmental risks that they live with. So the highest rates are among people, 65 and over and native Americans. And then the highest is among black Americans.
Janet: Right. Yeah, no, I read that in your report. So it was, for me, that was an eye opener. I mean, I think I know a lot of what’s in your report, or to a certain degree, but that was kind of shocking.
Valerie: And in the documentary, we wanted to tell stories because people remember stories much more than they remember data. And we wanted to tell a story around homelessness as another category. So we had the kids in Flint. Homelessness is a phenomenon that, you know, I’ve had the opportunity to be involved in and work on over the years, never adequately. I had a career in public mental health and the intersection of mental health and substance use is a very strong corollary for homelessness.
And the numbers are heartbreaking in terms of the number of people. Once upon a time, people thought that it was related to, we closed state hospitals, the community wasn’t adequate. Most people who are out there now never saw the inside of an inpatient unit. You know, these are people who just have the thinnest connection to support and care. And so the whole behavior health spectrum of substance use and mental health is huge in that community.
We also looked at prisons and jails where, kind of sickening reality of people with disabilities in prisons and jails is a big national story, but not one that is much talked about. So there’s a good project in the state of Washington that’s really looking at this. There’s occasional projects, research projects with individual cities or states, but we still have very poor data. We do know that more than 50-percent of people who have been killed by police are people with disabilities. We do know that extraordinarily high rates in many states, over 50-percent of people in solitary confinement are people with disabilities. And these are people for the most part with the brain-based spectrum. And in some cases, those are things that are misdiagnosed or never diagnosed until they were in prison.
Janet: It was too late, or thought to be too late, because we have an opportunity to still take people who maybe have done something, and we can still rehabilitate and help them. It’s funny that you should say that. We’re going to be doing the next BAC talk is going to be on, ‘Transforming Correctional Design for Justice’. And so we’re going to talk, we’re going to open up that subject because it’s an important subject.
And to your point, it doesn’t really always get talked about, but we can also talk about trauma informed design and trauma informed concepts.
That’s another topic I feel like that people don’t always look at and people could be kind of flip about it, just like they are with the, the wheelchair, right? That’s the disability, people who are in jail while they shouldn’t have done something wrong, I think it’s just kind of flip, you know. Like it’s just, it’s not taking into consideration, all the other aspects and all the other things that seem to kind of go on. And to your point, I mean, it can even be something as like, it’s got the bad of the water, and then you’ve had some sort of trauma in your life and you’re living in poverty and you can’t get a job. And…
Valerie: Well, and, and then there’s things that we don’t diagnose very often, or at least the, the likelihood of a wrong diagnosis is high. Many people of color, including Black Americans, have a generalized behavioral health diagnosis as young people. And I think it is some regularity that that is actually a condition that would more likely be diagnosed as a neuro-diverse condition, perhaps autism, if they were in a more privileged setting. There’s an assumption that it’s a behavioral health issue. So that’s one of the issues.
One of the other issues that we never talk about is Fetal Alcohol Syndrome. which only recently in a federally funded studies, basically saying, ‘gosh, we’re missing a lot of this and misdiagnosing it as something else’. And this is a lifelong condition that happens in utero, you know, it happens, the mother is drinking. And those children have an extraordinarily high likelihood of violence, and we’ve got to start looking at it because if those studies are accurate from the last couple of years, the phenomenon of fetal alcohol syndrome is higher in the population than the phenomenon of autism, which gets so much attention.
Valerie: There are things you can do, but you need to know what you’re dealing with, and you need to start early. Just like you would with autism, but you, you better know what you’re dealing with. Those are the kinds of things. I mean, not just to, to call out a place that does very good work—and I think you might’ve worked with them at one point Janet early in your career— is the Department of Youth Services here in Massachusetts.
Janet: I did.
Valerie: They’re doing a terrific job with kids with disabilities who are overwhelmingly kids with brain-based conditions. And they’re really trying to figure out how do we address the near universal trauma experience of those kids, and then all the diagnostic issues that will help them to avoid being part of the jail and prison population. You know, how do we give them what they need? So we’re working on a primer for retrofitting some of the DYS facilities. They need some issues to just be compliant, but they really need whatever tools they can come up with to create environments in which those kids restore themselves and get on with their lives instead of just going on a slick track into the adult system and that, you know, they were remarkably committed group of people.
Janet: That’s good to know. for the listeners out there that don’t know, I worked at, as a social worker in Roslindale for juvenile delinquents, and in an incarcerated facility for young boys. And I always, one of the reasons why I think I burned out so quickly was, I felt like we were just holding them until we would put them back into their society, and that majority of them came back. So you knew that we were just prepping them at that point to go to the real prisons and some of them would end up there already when they were 17… 17! Like, if not even 16, because they would get out and they would do something even more horrendous, and people would be like, well, well, you know, we’ll try him as an adult.
Just so we’re clear, I mean, I appreciate the system and it actually, this was early, well, mid to late 80s. So it’s been, a few years, but even at the time we were considered one of the world class leaders in taking care of them. So I’m glad to see that things are starting to change. And again, I think with the pandemic and Black Lives Matter and starting to realize a lot of the social justices out there, we’ve just been sweeping them under the rug for way too long. And so now we have an opportunity to start fixing some of these things.
Valerie: and I think if nothing else, COVID suspended us from some of our habits. It suspended us from being so distracted that you really couldn’t think about much of anything. You know, that every day was just utterly clogged with, you know, one minute to another. And I think, you know, a level of, of segmentation of what people connected to and paid attention to, you know, that notion of constantly tailoring experience and information to what you care about really broke our ability to relate to one another if people aren’t like one another.
You know, that I am not in your small subset of people who, you know, like A, B, C, and D, and that had gotten very extreme very quickly. This is partly the internet. It’s partly, you know, it’s partly Facebook. It’s partly all the social media, and all of the distraction that so characterizes modern life. And I think the pandemic broke that, at least for a while. and I think allowed people to see things in a fresh way, you know, to connect to things that people could recognize, at least some people could recognize, as fact, not as, you know, this truth versus that truth.
Janet: You’re making me really think this is why I love you. So like, how many times would you like look at social media and you know, and it’s like, ”Oh, everybody’s partying, everybody’s having a good time. I’m living this, my fabulous life type of lifestyle” and you kind of forget that there are people out there that are not.
Valerie: And that, you know, there’s only so much bandwidth, there’s so many, so many hours in the day, (Janet: literally) there’s only so much attention. And I think, part of what we have to work with is that some of that’s broken.
And maybe, you know, more things are sort of evolving now to pick that up. But I think, I think it was a chance for people to feel a level of interdependence, at least some people to feel a level of interdependence. I mean, as a nation, the whole idea that we are interdependent upon one another is pretty central to our ability to be what we intend to be, what we claim to be, what we aspire to be. That that interdependence is really this tension between individualism and community, that goes out of balance on a daily basis, maybe, certainly over the course of time.
And this in some ways, because we are in a pandemic, we are vulnerable in a shared way. And it’s an opportunity for us to recognize that. I realize that a lot of people are struggling with that, and they, they see themselves as outside of that. But it’s kind of undeniable that we are interdependent on each other’s behavior. But I think an interdependence that we’re, that we have a stake here that is a shared stake.
And that’s, that’s part of what we’re looking at, is to, so much of what is so inequitable about what we’ve been looking at has high costs and that high cost of tying it to issues of disability is basically saying, we’ve created pretty intractable situations for a lot of the population.
And how do we now insert a corrective that basically says stop dismissing those people as no longer part of the scene, no longer part of the story, but that notion that we can create a context that anticipates those truths, those realities, and to design a world that, that makes it possible for people to be fully part of the society. You know, that’s, that’s an opportunity that doesn’t come around a lot.
Valerie: I think that I don’t actually long to change the ADA. And part of what we’re really looking at now is the International Standards Organization, the ISO, that Americans unique in the world pay no attention to. We never talk about the ISO. And the ISO is the international organization with representatives from across the world who participate. And here’s, what’s so interesting is that they actually reassess every standard every 5 years. So they are actually taking things out, refining it, adding to it, changing it every 5 years. So there’s a quality of being more timely.
You know and I think we’ve got to be building it through guidelines. I mean, the standards are a floor, but to move towards a much more vibrant and responsive set of guidelines that we can, you know, put out there, we could perpetuate, but that we can assume that we’re constantly evolving. That’s why we’ve changed to Inclusive Design from Universal Design because Universal Design, first of all, doesn’t mean much to people. A lot of people think it’s froth on accessibility and it’s not.
But it’s also, like your podcast, it’s really about a constant process of— “how do we include, who’s left out? How do we think differently now? What do we need to pay attention to?”— It is a dynamic process and that’s what I’m investing in. Believe me, I deal way too much with the federal, extremely slow process, of the federal government in United States. And they’re not paying attention to these things. So, I don’t want them to add more elements that are for too small a slice. When the work we have to do is for the people about whom there are no requirements, there’s no requirements in the ADA or the MAAB, those populations that are the largest populations now are forgotten.
Janet: No, it’s true.
Valerie: But just in thinking about this, there is, part of why we are invested in the constant global conversation is to learn from what others have done. We should not be reinventing the wheel. It, when we look towards the future, part of what we’re looking at is, who’s doing what around the world. We’re really facing very similar issues in trying to make a world in which we’ve really anticipated human diversity appropriately and designed for it.
Valerie: One of our efforts is always to know who’s doing current guidelines that are really worth looking at, what’s the ‘International Standards Organization’ doing in terms of a global entity that is, is not letting standards sit in perpetuity, but investigating every set of standards religiously every 5 years and changing them to respond to new information. And that’s what we need to aspire to. Reinventing the wheel is such a waste of time and energy. We’ve got to be looking at the problems we need to understand so we can meet them.
Valerie: You know, what we’ve been trying to do is to seize the moment and recognize that there’s an openness to hearing things that are hard to hear. That we can conveniently fail to notice. and all we can do is, begin the conversation. I mean, there’s an enormous amount of work that we need to inform, we want to inform. but we, we kind of opened this effort with a quote from James Baldwin which I think says it all— “Not everything that is faced can be changed, but nothing can be changed until it is faced.”— he just captured in short phrases, things that matter. And it’s just, you know, that kind of thing. “we can’t fix it, if we don’t know it”. So we’re trying to just talk about shared responsibility here to make life better for everybody. So designers, key roll the plan.
Janet: Valerie Fletcher, thank you so much. I just want to say, I always try to aspire to be just a little bit like you ever day, so…
Valerie: Janet, thank you very much. I really appreciate, your passion for this work, that you call, your, your podcast, Inclusive Designers, we are going to keep in this dialogue for a good long time.
Janet: No, it’s, it’s true. And, I hope to grow up to be just like you at some point…
Janet: I got a lot, I still got a lot to learn. Thank you so much.
Valerie: Thank you. Thank you for your time and interest, alright, be well.
Music / Show Outro:
Janet: You know, that James Baldwin quote Valerie uses always gets me.
“Not everything that is faced can be changed, but nothing can be changed until it is faced”…
Carolyn: Yes, and Valerie had a few good quotes herself. I liked when she said, ‘we have to have an openness to hearing things that are hard to hear’… she also said, ‘We can’t fix it if we don’t know it’ … that’s very timely advice that says a lot.
Janet: And how great is she? I think we can classify me as a total fan girl!
when she says my name, I think to myself, ‘Oh my God, Valerie knows my name’!
Carolyn: She’s very inspiring… I’m a big fan of hers now too.
Janet: You know Carolyn, this is an episode I will want to listen to again because she’s so remarkable. To Valerie’s point… as designers, we have to take these opportunities that COVID has ironically afforded us. And Covid has definitely changed our world. It’s forced us to look at everything from working remote to problems of social inequity. It’s also brought many of the so-called ‘invisible disabilities’ to light.
Carolyn: We definitely covered a lot of ground in this episode… with a focus on what changes may be needed moving forward.
Janet: Overall, as Valerie said, ‘it’s all about how a person with functional limitations interacts with the physical environment, and how we as designers can minimize the negative and amplify the strengths of the people with functional limitations.
Carolyn: To quote Valerie one more time, “Designers— key role the plan”
Janet: So, I’m thinking of making an ‘Inclusive Designers Award’ and I’m going to call it ‘The Valerie Fletcher Award’…
Carolyn: That’s a great idea…
Janet: And I am going give it to myself!
Carolyn: Only if you earn it.
Janet: Fair enough.
Carolyn: But for right now, you can practice your ‘Thank You’ speech.
Janet: Okay! so I’d like to thank my producer, Carolyn Robbins, and my mom and my dad, and, and…
But seriously, Carolyn and I would like to thank Valerie Fletcher for her time, her words of wisdom, knowledge, empathy, compassion, and passion, which we think comes across in this incredible show and we hope you agree.
Carolyn: We do also want to thank you, our podcast listeners, for listening. And now, in case you didn’t know, along with all the regular places you get your podcasts, you can also find us on YouTube. Just go to YouTube and look up Inclusive Designers Podcast. And of course, if you like what you hear, feel free to go and hit that Patreon Button.
Janet: And don’t forget our motto, as we say: ’Stay Well…and Stay Well Informed’. See you next time.
(Music up & out)