TedTalk – I’m not your inspiration, thank you very much!
Accessible Community Advisory Committees (ACAC) – Washington State
[00:00:00] Sarah: You’re Listening to Good Fit Poor Fit. A podcast that explores the interaction between people, design, and activity. Good Fit Poor Fit is part of The Universal Design Project, a nonprofit organization with a vision for every community across the USA to have a surplus of homes and opportunities for social participation that are universally and financially accessible.
[00:00:23] Learn more at universaldesign.org.
[00:00:27] Nate: Hello again listeners! Welcome back for another episode of Good Fit, Poor Fit Podcast. If you missed our last few episodes and are wondering who this new voice is, or just need a reminder, my name is Nate Pickett and I am an occupational therapy student who has been working alongside the folks at the Universal Design Project for the past couple of months. I would like to thank all the members of the Universal Design Project for allowing me once again to come on here as we chat about topics related to universal design in the community, and the growth of occupational therapy into non-traditional fields.
[00:00:59] In today’s episode, we’ll take a step back from the insides of the home and focus on a wider lens of universal design. The focus of this episode will be on the creation of accessible communities. The places that we live have extreme influence on each stage of our life. They determine what activities we are interested in and have access to, the type of people we are around, and the resources available to us as individuals or families. Some factors we can control, others we cannot. But a certain population of individuals have extremely limited ability to control any factors at all. To be exact, 61 million Americans are limited in their search to find a community that works for them. So, why 61 million, you may ask? Because according to the CDC, that is the number of Americans that live with some form of a disability.
[00:01:48] As we have talked about in numerous episodes, those with disabilities are often making unnecessary settlements in the places they choose to call home. Choosing between having adequate accessibility features, or ensuring that space is affordable, should never be a decision that anyone has to make. Accessible communities are very few and far between, and this is for many different reasons. But this is where new construction developments can make a lasting impact.
[00:02:11] However, before we dive into the many layers of this issue, I first wanted to discuss the aspects that make up the feelings behind a sense of community. Community is often defined as a unified body of individuals who occupy a common space with similar interests. So, with that in mind, I’d like to start the conversation by opening up with, what are some aspects that each of you look for or value in your own communities? And, if these feelings were disrupted, how would that make you feel?
[00:02:37] Sarah: What a great topic, Nate. The idea of community can take on a variety of definitions and as an OT that focuses on how people interact with their environment, I use the word community a lot. Most prominent is using the word as a collective community and the people in the town in which I live. In this way, I think of the variety of people of different cultures and abilities, and that ultimately makes me think of the homes they live in and if they fit their needs or not. I have lived in different locations in my community, from a more rural area to a more downtown area, and I can definitely feel a difference in how we participate in things, having everything within walking distance versus driving 15 minutes to get somewhere.
[00:03:21] I also think of community in regard to the specific group I am a part of, like a sport or a musical group, a group of people I connect with who have a common life experience, from disabilities to caregiving, to being a mom, or similar beliefs. Some of these groups are in-person and some of them are virtual.
[00:03:41] I think some of the feelings that keep me feeling like I belong are common life experiences, genuinely enjoying the people that I’m with, and what we’re talking about, as well as feeling like I belong by just being myself. However, as life circumstances have changed and my ability to participate in some things have adjusted, it has created some sadness and loss of things that once were, and a longing for some of those experiences and friendships to continue.
[00:04:11] Nate: Thank you for sharing that. I love the points that you make about how the word community can take many different forms, even if your location isn’t necessarily changing.
[00:04:19] So switching gears to talk about universal access in both homes and communities, I would again reiterate the point that place really does matter. As we talk about so often here at the Universal Design Project, there’s a difference between home modifications and universal design, in terms of how they’re approached. Home modifications are those changes that are inserted into existing structures. These are the solutions when funds may not be readily available to make large-scale changes to an existing space. While they’re helpful, they don’t always address inaccessibility issues down to their core. Also, it is usually only done to one area, space, or home, and is often only implemented as needed. Therefore, accessibility on a neighborhood level as a result of home modifications… Really can’t be called accessibility!
[00:05:03] Users who require accessible features for access are limited to the boundaries of their home, stripping them of social opportunities to visit others in the neighborhood, which is a common activity that helps create a feeling of community.
[00:05:15] In opposition, the concept of universal design at the Universal Design Project focuses on structures being built from the ground up. This concept pairs extremely well with the need for accessible communities. As new construction begins and new neighborhood developments are planned, principles of universally designed homes should be considered, not just as needed, but inserted into all homes to address a larger societal barrier.
[00:05:38] Now, the neighborhood becomes universally accessible! No matter the disability one faces, their needs are met in not just their own home, but homes throughout the neighborhood. Now, users can experience a feeling of community, something they were missing when they were making unnecessary settlements on homes.
[00:05:54] Thinking in terms of individuals living in this hypothetical, universally designed neighborhood, what benefits do you anticipate a project like this would bring to them?
[00:06:01] Sarah: Nate, this is my dream! New neighborhoods popping up that are actually entirely universally designed. That’s when we know all of the education people have been doing on this topic is sinking in. We do need entire communities like this, versus homes here and there that have some functional features. While they’re helpful, it doesn’t move the needle a lot.
[00:06:24] The benefit of a family knowing they could go to any home in this certain development, complex, or neighborhood, and not have to hunt around for the elusive one that might meet their needs, would be amazing. Sometimes, there’s just one or two accessible units in a complex, and if they’re occupied, then the family looking for those features are out of luck and must either continue looking for an accessible option, or compromise on an available non-accessible unit in the same complex.
[00:06:55] Currently, I know many people don’t really get to pick the neighborhood they want to live in because they just have to find a house that they can easily modify or make work for their needs. A universally designed neighborhood is a game changer. I’m on a lot of spinal cord injury groups on Facebook, and a question that pops up quite a bit is, what is the most accessible town in the US?
[00:07:16] That’s a really loaded question! Because you have to think about housing as well as access to all the stores, medical care, and ease of transportation as well. I don’t wanna talk about too much on this topic quite yet, because I know we discuss it more in-depth later in this episode, but the point I’m trying to make here, is that all of these factors play into where we choose to live, but because it’s hard to find housing that’s accessible in general, we often have to compromise on some of these other pieces.
[00:07:44] But to get back to your original thought here Nate, hypothetically, easily locating an entire neighborhood full of completely universally accessible homes, close to a thriving extended community, it just makes my heart smile.
[00:07:58] Rebecca: It makes my heart smile too, of course, and it makes me think about what we can do to take a first step towards this pretty lofty dream neighborhood that is universally accessible. Unfortunately, as you noted, Sarah, we’re pretty far from that at this point, with so many communities having no, or limited availability of accessible spaces that are often deemed as such, based on regulations like the Americans with Disabilities Act, the ADA, which in reality, doesn’t lead to true universal accessibility.
[00:08:30] So how can we get from where we are, to that imagined future that you guys are talking about? I know that here at the Universal Design Project, we see some of the first steps as educational. Talking about what universal design is, going beyond ADA compliance, and considering a wide variety of users with different abilities in design.
[00:08:50] But what else do you guys think are some necessary steps in this journey?
[00:08:54] Sarah: I mean, honestly, I think money is a big factor here. As well as some big community champions or organizations to get behind these concepts. Education is a big piece for sure, and that is why we are focused on that. But I think having people in the community actually experiencing real universal design in an entire home is necessary.
[00:09:17] This is one step beyond traditional method of education. I’m talking about a home that has programming for people to spend the night in the home, and to immerse themselves in the features to make a meal, get ready for the day, and just enjoy the home in general. In addition to other community programs that engage more than just tourists, but community members, professionals, and students. By experiencing UD while doing daily tasks, I would hope this could help show the benefit to people personally, as well as for the broader community. Nate, do you have any other thoughts on this one?
[00:09:52] Nate: I think that you hit the nail square on the head, Sarah! Universal Design can be a difficult concept to fully grasp if you’re not familiar with its principles, and you’re only hearing or reading about them. But experiencing them, that’s a different story. No matter the type of learner you are, once you experience UD hands-on, it really all clicks. It makes access easier for everyone, and that’s how it clicked for me!
[00:10:13] All the above brings so much perceived joy and solution to such complex problems. It seems so simple, right? But, too often, it really is not. One important topic to consider when discussing options in this area is the stigma surrounding life with a disability and structures built that fit these needs.
[00:10:30] It is an unfortunate truth in our society that stigma surrounds life with a disability. Many have been conditioned to believe that life with a disability is a factor that doesn’t allow people to live life to its fullest extent. While it is true that life may be altered, it doesn’t necessarily mean that quality of life needs to be impacted in any way, and disability is not a bad thing.
[00:10:50] Furthermore, society has illustrated a concept that life with a disability is inspirational, and simple life achievements are to be viewed with great respect. While this may be the case sometimes, oftentimes those with disabilities simply just want to be treated like their counterparts.
[00:11:04] A great TED talk, that will be linked in the show notes, discusses the objectification of disability. It goes on to explore how those with disabilities are often seen as inspirational for simply living, even if they haven’t done anything that makes them inspirational. In another point of view, people view disabilities negatively. This may have detrimental effects on the selling point of a universally designed home. If someone does not, understand the concept of universal design, design that’s usable by all disability or not, and they hold a preconceived notion about disability, they may hold a point of view such as, why would I choose to live in a house built for that?
[00:11:38] With this in mind, what impacts do you view this stigma surrounding disability has on the value of homes and a hypothetical, accessible neighborhood? Do you think this concept could steer people away from wanting to live in a universally designed neighborhood? And how can we help to deconstruct these stereotypes in our own communities?
[00:11:55] Sarah: The stigma of disability often does play a part in putting some of these universally accessible homes in our communities. If people really saw the day-in and day-out of what individuals struggle with to get ready and outside of the house with a disability in the mix, they’d realize that people living with this type of experience, don’t really feel inspirational. It’s frustrating to navigate a barrier-ridden infrastructure. Even if people out in the community do struggle with things physically or mentally, they often don’t want to be seen as having a disability, or have that label on themselves because, to some, it seems like it’s a weakness.
[00:12:31] In this mindset, why would they want to be in a home that’s marketed toward that group of people when they could just make do with what’s available. That’s why we see many companies and organizations marketing homes and those concepts, by adjusting the words they use like lifetime homes, livable design, age-friendly, and more, to kind of soften the word disability.
[00:12:54] I think you’re right in that people don’t think the features in UD homes have any benefit to them if they don’t consider themselves as disabled. However, it’s interesting how our perception changes when we find a solution to things that don’t function as well. I’m nearsighted and I’d be really impaired if I didn’t have my glasses, but glasses fixed my issue of seeing, and allowed me to go on about my day easily doing my work and driving. It’s the same with homes! When we fix these issues in the environment, having an impairment won’t be as prominent, because we’ve altered the way people complete the task.
[00:13:29] Rebecca: I couldn’t agree with both of you anymore, and I’m so glad that we’re sort of delving into these topics, which I don’t think we’ve covered in exactly this way before, on the Good Fit Poor Fit Podcast. Our society, first of all, definitely still grapples with some serious, serious ableism and stigma surrounding disability.
[00:13:49] So you’ll see lots of tiptoeing around the words as you said, Sarah. In my opinion, disability is not a bad word! And I could soapbox about that for an entire episode, and I won’t listeners, but I just have to get that out there.
[00:14:03] What I will say is that, to Sarah’s point, it’s important to acknowledge that disability is a part of the human experience. Anyone can become disabled at any time, and most of our lives are already impacted by disability in some way. But the beautiful thing about universal design is that, though it has roots tied to accessible design, it’s not specifically for people with disabilities. Universal design isn’t designing for disability.
[00:14:31] In fact, universal design has goals that are far more expansive than designing for disability. It seeks to create features that are flexible, simple, approachable, and logical for people with all different backgrounds, disabilities, cultures, and experiences. So when we really think about universally designed homes, it means homes that are the most functional for the most people.
[00:14:56] And that’s something I think we can all get on board with.
[00:14:59] Sarah: Yeah, that’s a really great way to put it, Rebecca. It’s part of the human experience. We can all use additional convenience in our lives, and we really don’t know when life circumstances will change for us, to actually need features for us or friends or family that may visit. So why not just design this way in the first place?
[00:15:17] There is a lot of education surrounding the bigger picture of these concepts, and honestly, having people in our world that do things differently is what makes us all unique and appreciate each other’s ingenuity and differences.
[00:15:30] Nate: I couldn’t have said all that information any better myself, and as you guys quoted, disability is truly a part of life. So it’s time that we stop becoming fearful of this topic, and adapt our world to meet this mindset.
[00:15:41] With an aging population on a faster rise than it ever has been before, it is time for a wake-up call, one that hammers home the principle that the structure of home needs to be designed for accessibility standards. A quickly aging population only adds to the already excessive number of individuals with a disability, increasing the need for accessible housing exponentially.
[00:16:00] Luckily, some states are recognizing this need. A great resource, that will also be linked in the show notes, highlights the initiative that has been taken in Washington state, to increase the availability of accessible housing options. In 2010, they passed a bill into law that prompted the creation of the Accessible Community Advisory Committee, better known as the ACAC, where each county in the state created a committee where residents could voice concerns about the lack of accessibility in their neck of the woods. From there, the ACAC of all counties met as a larger group to discuss any needs the counties may have had. And they handle all grant writing if community accessibility is needed to be increased in a certain area.
[00:16:40] Many other states have also followed suit on the creation of these committees to help increase awareness for the need of accessible communities. However, in most cases, these committees are mostly entirely made up of private citizens. Furthermore, they’re only funding assistance to help increase accessibility in the areas and the desperate needs for it, comes from federal grants, which are composed by the citizens. As a student in OT, I took a quick dive into grant writing and it’s no easy task. I can only imagine the process for getting these grants accepted, the task that these private citizens have to do, when accessibility is something that they shouldn’t need to fight for.
[00:17:14] With these processes in mind, why do you think accessibility changes for the home can be such a difficult process to go through?
[00:17:20] Rebecca: I imagine Sarah will have a lot to say here, but I think this is a super important point to bring up. All these barriers that exist for people looking to advocate for, and build accessible communities. It’s absurd! I have to imagine that a lack of understanding compounded with this country’s often fraught relationship with the disabled community is a contributor.
[00:17:41] What do you think, Sarah?
[00:17:43] Sarah: Yeah Rebecca, it is absurd and I’m amazed how much we have to keep talking about these concepts. Sometimes I feel like a broken record, but then after conversations with people, I realize. There is still a lack of understanding of the benefits of UD, and there are layers upon layers of barriers that I feel like we keep digging up.
[00:18:03] Pure education and helping people understand the importance isn’t quite enough to move the needle, but it’s a start. Just like the program you talked about in Washington state, Nate. Many localities are trying to pass policies to make accessible features a requirement to get things accomplished more on a community level.
[00:18:21] Eleanor Smith began the movement of Visitability in Atlanta, Georgia. They worked toward making all new homes built in their community, to meet three basic requirements, including one zero-step entrance, doors with 32 inches of clear passage space, one bathroom on the main floor you can get into in a wheelchair.
[00:18:42] It was met with a lot of resistance, but having new homes with just these features is at least to start to getting someone inside and to a usable bathroom. Another thing that I’m noticing, and you mentioned Nate, is that many of these initiatives are spearheaded by private citizens or nonprofits.
[00:18:58] Unfortunately, that’s not where all the money is, but it is where the people living the experiences are trying to find ways to make change. How do we all get the listening ear of those decision makers? How do we get people to see the value for all people, and not just those currently that have a disability?
[00:19:17] Scott and I recently found out that most of the grants out there for housing are not even focused on accessible housing. There’s just not a lot of people funding it. Affordability is a big drive these days. So adding accessibility and affordability into the same ask for grants, has to be another way to make a difference in the homes and infrastructure of our communities.
[00:19:39] It’s just disheartening to see all these new complexes and neighborhoods go up, and they just missed the opportunity to put in functional features that would benefit so many people in our community now, and in future generations. Back in September of 2022, my husband Scott tweeted this on our Twitter account.
[00:19:58] ” The American Housing survey notes that out of all homes, the median year built was 1977. The National Association of Realtors states the median duration of home ownership is 13 years. In other words, the homes in our country last for decades and typically have multiple owners. This means that what we build now will still be used decades down the road, even more imperative to figure out a solution to this problem.”
[00:20:28] Nate: In today’s world, we try really hard to prepare for the future. So I agree that it’s disheartening that home designs aren’t seeing eye to eye on this concept. It’s no secret that we’ll all become a victim to the natural aging process, which causes declines in our abilities as well as our health. Our homes are a part of our health, and it’s time that they’re treated as such.
[00:20:46] One final topic surrounding community can explore factors that predetermine the quality of life one will live, simply due to the zip code they reside in. These factors can be identified as social determinants of health.
[00:20:58] Social determinants of health, refer to five factors of one’s, community or environment, that impact an individual’s health, functioning, occupational engagement, quality of life, and life expectancy, simply due to their location on a map. These five factors I mentioned, include economic stability, educational access and quality, healthcare access and quality, built environment of the neighborhood, and the social context of the community.
[00:21:23] Is it true that individuals living in one zip code can live 10 years longer than folks living in a zip code, just a 20-minute drive away? The answer is yes, and it all comes down to a holistic view of health.
[00:21:34] Picture this. An individual lives in an area that was once the wealthiest area of the nation, located right on a river, maybe in a milltown. One that thrived decades ago when establishments were run on water power. At the time, you couldn’t ask for a better place to live.
[00:21:48] But as times change, so do demographics. At the snap of a finger, those once flourishing communities are now unkept and run down. Business has moved elsewhere, and now this place becomes known as a “dump”.
[00:22:00] This is a story that happens all too often. Due to old infrastructure, the community is not built for safe travel, eliminating the option for exercise. What if you don’t have a car or there’s no bus? Now walking’s the only option, but it’s not safe. Okay, well maybe we can make it to the store if it’s close. But the store? No, the one close by left town and now it’s outside of walking distance. Okay, let me see if I can find maybe a friend to take me! Wait, no, they just moved as well and there goes my social connections.
[00:22:31] As you can see, a simple change of the dynamics of the location can absolutely derail someone’s access to life’s important features. The built environment is not safe and there’s no healthy food stores around. This negatively impacts their physical health. Friends move away and find new real estate, but you can’t afford to leave. So this takes away your social health. Trying to find a job in a place where businesses don’t last and there’s limited job security and there goes your mental health. So slowly but surely, these challenges that one faces are detrimental to the health and wellbeing of the person as a whole. Physical, social and mental health create the perfect storm to allow for other conditions to develop that can severely alter one’s health.
[00:23:10] This small example shows how a zip code truly does have an impact on one’s life expectancy. A great resource, which is linked in the show notes called Unnatural Causes, Place Matters, does a fantastic job breaking down this concept. Unnatural Causes unpacks seven scenarios that fit into the social determinants of health. I highly recommend checking out this resource as it explains the social determinants of health in a much better way than I could dream of doing here.
[00:23:36] All of this leads me to my final question for you guys. What do you think would need to be a part of an accessible community in order to prevent social determinants of health from providing adverse health benefits?
[00:23:46] Sarah: Nate, the social determinants of health are really interesting once you start digging into them and peel away all of those layers, so thanks for sharing more about that. And there are so many details that play into these social determinants of health and countless organizations are dedicated to initiatives for improving them.
[00:24:04] But from my view, as an OT and looking at environments, I’ve always said that there’s a direct connection between accessible housing and usable communities. It’s important to understand that once someone feels safe and confident in managing their needs and the needs of their family at home, they’re more likely to get out into their community and participate in work, school, and play.
[00:24:24] This increases confidence in being able to interact with others socially, which also contributes to one’s health and wellbeing, like you said. First, their home needs to be functionally accessible and safe. And second, the community needs to provide access, safety, and opportunities as well.
[00:24:41] However, Nate, like you shared with us, when communities face challenges, the people living there really struggle with inadequate conditions, or they try to move away for better opportunities. When thinking about your question of what I would think would need to be a part of an accessible community, I think about convenience.
[00:24:59] When new housing developments and single-family homes are built that are universally accessible, our communities are providing opportunities for people to thrive. More people feel welcome to move to that location because there are homes that make life easier to do daily tasks. Homes located closer to a city center, even smaller towns, are more likely to have more amenities like grocery stores, pharmacies, restaurants, and community activity centers within walking distance for participation and a variety of life-giving activities. There’s also the convenience of sidewalks and public transportation.
[00:25:35] For those individuals who feel comfortable leaving their home, having this infrastructure just outside their front door gives them the confidence to complete more of their daily tasks for themselves and their families, without having to rely on others. They can easily contribute to the local economy when that infrastructure is thriving, by frequenting stores, adding to the workforce, participating in recreational activities and exercise, and raising their children or grandchildren in a community that values their abilities and contributions.
[00:26:06] AARP has a way to score “livable communities” or livability. I’ll put the link in the show notes to their information, but they’re looking at seven elements in communities to determine a score for how “livable” it is. The scoring is out of a hundred in housing, neighborhood, transportation, environment, health, engagement, and opportunity. Kind of sounds like the areas of the social determinants of health!
[00:26:35] On their site, they actually have a list of many of the cities they’ve evaluated and they’ve published their scores. So go take a look.
[00:26:42] People generally have a lot of the same life goals. To live life as active and healthy as they can for as long as they can, provide for their families, and live in a space that’s safe and comfortable. Universal design in homes and communities provides people the ability to complete daily tasks with confidence, and I think that’s a big part of addressing some of these social determinants of health. I’m on my soapbox here and I’m just gonna keep going, but what if our community organizations and partners shifted their mindset and opportunities for more people were just open because the design of our homes and communities provided more access. People wouldn’t just be surviving and making due. They’d be able to thrive. They’d be healthier and more active members of society.
[00:27:29] Nate: I agree, Sarah. Social determinants of health provide extremely valuable information about our communities, and we could explore them for hours upon hours, as we’ve barely scratched the surface level of them here. They provide us with useful information on the makeup of communities that can be used to make changes towards the ultimate goal, a thriving community. The goal that so many of us have, but really don’t know how to achieve it.
[00:27:53] So listeners, thank you for sticking in there with us as we’ve really covered a lot!
[00:27:57] To wrap things up, the accessible community has many benefits that can have a positive impact beyond just the surface level. Today, we discussed what makes communities feel like the right fit, how accessible communities built from the ground up can have huge impact on increased accessibility, stigma surrounding disability, aging populations, the initiatives that are currently in place, and finally social determinants of health.
[00:28:20] As you can see, there’s many layers to access, but each is crucial to explore to its fullest extent. Accessible communities are the future, and we should invest in them now, for it will make for a better tomorrow.
[00:28:31] Thank you all for listening to yet another episode of the Good Fit Poor Fit podcast. I hope that this episode helped you to view the accessible community as a necessity moving forward. Making change now will only make the future a better place. As mentioned, the accessible neighborhood is few and far between. Therefore, it’s up to us to keep these conversations going in our own communities, until one day, our neighbors, friends, and family, disability or not, can interact with each other’s space, worry-free of inaccessability.
[00:29:00] We hope you have a great day.
[00:29:04] Sarah: Thanks for listening to Good Fit Poor Fit. I’m your host Sarah Pruett, Program Director and Occupational Therapist at The Universal Design Project. Learn more about our work at universaldesign.org, and find more episodes and links to subscribe at goodfitpoorfit.com If you have questions or topics you’d like to discuss, email us at [email protected]
[00:29:29] Thanks for fitting us into your day!
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