Here’s a link to the full interviews on YouTube of the individuals that were mentioned in today’s episode!
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.
[00:00:27] Learn more at universaldesign.org.
[00:00:31] Sally: Hello listeners, and welcome back to another episode in our mini-series, Candid Conversations! Today, Lauren, Rebecca, and I will be discussing the perspectives of the people who participated in interviews with The Universal Design Project a few years ago. These 24 individuals shared their thoughts and experiences about living with a disability in their home and community environments; and we will share the links in our show notes of the people who are featured in this episode today. We will talk about how and why these individuals face barriers in their home and community settings and how design does or does not support their individual differences.
[00:01:08] Today we will be discussing the most common universal design features that have been brought up by almost every, if not all 24, of our YouTube interview subjects. All 24 of these individuals have vastly different stories, backgrounds, abilities, and experiences that shape how they complete valued activities in their home and community settings.
[00:01:30] Yet, they all seem to agree on these three universal designs that are an absolute must. These three designs include wide doorways, benches, and one-level homes and/or homes with full bedroom and bathroom on the first floor.
[00:01:48] Lauren: I definitely see why these were mentioned the most throughout the interviews we listened to Sally. Being able to get into bed or access to shower or toilet isn’t possible if the bedroom or bathroom aren’t able to be entered to begin with, or if the house entrance itself is not accessible. Also while the additions of these accessible features in a bedroom and bathroom, like a walk-in shower or raised toilet seat, may be costly. It pales in comparison to the cost of widening doorways or remodeling to create a new full bathroom or bedroom on the first floor that can be entered and have adequate space to move around in. I see why everyone really emphasized the importance of these UD features.
[00:02:28] Rebecca: Hearing you ladies use these universal design terms and throwing them around like this warms my nerdy heart. You have clearly learned a good bit in your time here, so please know that we are very proud. I’m excited to talk about these features in particular, because as you said, they’re very commonly appreciated among all people and they’re universal design features that we’ve definitely talked about in the past, but never in too much depth.
[00:02:54] So taking a good thorough look at them is certainly worthwhile. Sally, get us started.
[00:02:59] Sally: Okay. Let’s first dive into the issue of doorway width and talk about how limiting narrow doorways can be. For one, a narrow doorway, let’s say less than 30 inches wide, limits almost every adult who uses a power chair from moving through that space. Lisa is one of our 24 interviewees who uses a power chair due to lower extremity paralysis from a spinal cord injury.
[00:03:24] Lisa talks about how the narrow doorways in her apartment make it challenging for her to get into her bedroom without marking up the walls, and actually impossible for her to enter her bathroom while in her chair. Take a listen to Lisa’s story about her living arrangements in her apartment.
[00:03:40] Lisa: It’s hard because like, I can’t get through that door to my bedroom very well. Um, I can get through it, but there’s a lot of marks on it where I ding it a lot. And then I can’t get in the bathroom at all.
[00:03:55] Nicole: You can’t go?
[00:03:56] Lisa: No.
[00:03:57] Nicole: Is the bathroom in the bedroom part of the bedroom. Okay.
[00:04:01] Lisa: And that door is 26 inches. Yeah. So I mean this obviously is short-term, because I really would like to roll into, you know, a really nice shower. So, I mean, I feel like at the very least, like in the community, there should be some kind of standard to where even if you don’t get uh, handicap accessible apartment, at the very least you could fit through the doors. Like they can make them all the apartments, at least 30-inch doors. And that way anybody could live in them, you know, you don’t have to make shorter counters or anything like that, but you could at least get around them. I mean, I don’t think it would be that much of a big deal to set that standard, you know?
[00:04:48] Sally: Lisa makes a great point that even if there aren’t a ton of handicap accessible apartments out there, it would be really simple just to make all doors, at least 30 inches wide to accommodate people in wheelchairs. But we know that even 32 to 36 inches would be best if possible. The bigger, the better.
[00:05:07] Rebecca: Yeah, I definitely agree with this point. It’s interesting because I have actually already started to see a shift in this in some commercial spaces. A lot of places are picking up on this need for wider doorways and their functionality for all people and are therefore incorporating them into designs.
[00:05:24] Some places are even thinking that 32 to 36 might not be enough. I’ve heard talk of 40 inches. But in all seriousness, this is a great example of universal design because it simply works better for everyone. Whether you use a mobility device are pushing the stroller, have a lot of things to carry through a door or are even moving furniture. Having that extra space in a doorway can make a huge difference in the usability of the space, not just for disabled people. I know you heard about some other experiences with narrow doorways too Sally, right? Tell us more.
[00:06:00] Sally: Yes. So Haley is another interviewee who experienced the frustrations of not being able to enter her bathroom at home while she was using a wheelchair. Haley has Ehlers Danlos syndrome, also known as EDS for short, which is a rare connective tissue disease. In her words, she describes EDS as causing her body to be very stretchy because there’s too much collagen.
[00:06:25] So she’s flexible and bendy and things kind of slide around where they shouldn’t be. In Haley’s case her symptoms include severe pain, nausea, and fainting spells because her brainstem and spine are, as she says, not where they’re supposed to be. After multiple spine and brain surgeries she had to manage her symptoms, Haley spent time using a wheelchair. This is her experience using a large mobility device in her home setting.
[00:06:51] Haley: Well, one of the biggest problems was going to the restroom because the wheelchair would not fit into the door. Um,
[00:06:58] Sarah: And this is on the main level? Okay.
[00:07:01] Haley: So the only bathroom I could use on the main level of the wheelchair, the wheelchair wouldn’t fit through. So I had a couple of steps to get to the toilet and I would just go down. Um, and that was, you know, cause like I said, I couldn’t, I couldn’t stand without passing out. So, um, So that was an issue and then bedpans happened and it was just, it was a crazy, crazy time.
[00:07:25] Sally: For Haley, not having a bathroom door that she could fit through in her wheelchair was more than just an inconvenience, but it was a safety issue. With Haley’s condition, fainting spells were common, so she needed to be seated in a wheelchair to avoid fainting and falling. I hate to think that Haley did have a bathroom to use on the first floor, but just because the doorway was too narrow, she had to resort to using bedpans since she couldn’t get to the upstairs bathroom safely. This is not a fun experience for anyone, but especially for a young woman who is used to being independent in her typical home bathroom environment.
[00:08:02] And I want to take a moment here to mention that you don’t have to be a person who uses a wheelchair or a mobility device to benefit from a wide doorframe. In general, wide doorways make the space feel larger, more welcoming, and open. Also, a narrow doorframe can make it challenging or even impossible to move large furniture without having to take it apart. Moving anything big or bulky, like grocery bags, boxes, or even suitcases through small doorways may also leave your walls all marked up and have you feeling frustrated.
[00:08:34] Lauren: So true, Sally. I’ve marked up my fair share of walls, trying to get furniture into different homes each time I had to move. I’m actually moving this weekend and I’m stressed just thinking about the hassle that’s going to be.
[00:08:46] I think it’s important to also mention the turning radius on either side of the doorways. While you need to be able to get through the doorway, there always needs to be adequate space provided to maneuver comfortably whether you’re holding 12 bags of groceries in your attempt to bring them into your kitchen in one trip, or needing to get your power chair into the bathroom and have enough space to position yourself for a safe transfer.
[00:09:09] Rebecca: Great point. Way to think through the whole activity from getting through the door to actually doing what you need to do on the other side. I’m so glad you said that Lauren, cause I feel like it really highlights the distinct value of occupational therapists in this type of design work. That activity analysis from start to finish is absolutely classic occupational therapy, but I digress.
[00:09:34] Sally: No, that’s a wonderful point. I love a good old activity analysis. Thanks for your comment, Lauren, you really wrapped up that thought about doorways nicely and made it more about the entire activity of moving from point A to point B within the home. All right enough about doors. Let’s move on to our second most talked about feature, which is the availability of benches in both the home and community settings.
[00:09:58] In the home environment, shower benches, or shower chairs, were the most commonly used bench by our interviewees. We have heard from Tabitha previously, but just to remind you, she is a woman who experienced a broken leg that led to surgery. When she was recovering, she used a shower chair, but I will let you listen to her experience with this device in her own words.
[00:10:20] Tabitha: Um, the amazing thing was the shower chair. That was great. Um, and also the shower, um, what is it where you can, it has it the hose with it? The handheld shower head. Yes. That was amazing. So having that and having the shower chair that made me feel like a human again, because I could actually take a shower by myself.
[00:10:45] Sally: I just love how Tabitha says this simple device was able to make her feel like a human again. This perfectly illustrates how basic activities like showering are so meaningful to maintaining our dignity and sense of self. And when you find yourself in a position where you aren’t able to shower, you realize how much you took that basic task for granted.
[00:11:07] If a very simple addition to the shower, like a bench or a chair makes this much of a difference, there should be benches in every shower. You never know when you might be in her position and break a bone or experience disability and find yourself wanting or needing to take a seated shower.
[00:11:23] Rebecca: I couldn’t agree more with your last statement. This idea that anyone can become disabled at any moment is a great application of what we call the social model of disability. This idea that anyone can be disabled at any point based on their environment and what’s going on around them.
[00:11:41] It’s not necessarily that a person is disabled, but rather there is a barrier to them doing what they want or need to do at that time, perhaps because of an environmental factor or a temporary factor, like a broken bone, or even following a surgery. This also drives home the value of universal design, because if spaces are built from the outset to support a wide variety of needs, then there’s less of a chance that someone will experience a space in a disabled way.
[00:12:12] Sally: Awesome point, Rebecca. Universal design levels the playing field by making the environment a “good fit” for everyone. And that’s why I love universal design so much– it just makes sense. But anyways, Bonnie was another one of our interviewees who experienced a temporary disability, like Tabitha. After breaking her wrist and ankle, Bonnie also found herself needing to take a seated shower, to keep the weight off of her foot and keep her cast dry.
[00:12:40] At first, Bonnie did not have a shower chair, so she had to improvise. Listen to her story about showering using makeshift equipment.
[00:12:48] Bonnie: We did not have a shower chair or anything like that. So, um, I basically, he basically went to the deck and pulled a lawn chair off the deck, a plastic lawn chair. And brought it in. And luckily a year, couple of years before, we had just put a tiled shower in the bathroom with a shower curtain, there’s no door.
[00:13:07] And so we were able to put the seated, you know, the deck chair in the shower. Um, but it’s a lower deck chair. So it was very difficult to get into the shower, to sit in the, on the deck chair to take a shower. Cause I couldn’t turn it while I was in the shower and my– I just felt like it just was not working.
[00:13:25] So it was, I, it took 40, 45 minutes to take a shower the very first time. And I had to find ways to cover my casts. And, um, you know, Mike didn’t dare–my husband–didn’t dare leave me because I was afraid of falling or, you know.
[00:13:40] Sally: Bonnie’s story actually reminds me of what Lauren mentioned in one of our previous Candid Conversations about people using things like Home Depot buckets to shower. A lawn chair actually seems a little bit better and a little bit safer, but neither are ideal options.
[00:13:58] As Bonnie says, this simple activity that maybe used to take five or 10 minutes now it takes close to an hour without the proper equipment and environmental design. If only her shower had a universally designed built- in bench, and even a removable handheld showerhead would have also been very helpful and would have paired nicely with that bench.
[00:14:18] Lauren: Yeah, eSally thinking about the possible outcomes of using a Home Depot bucket as to the shower chair, makes me cringe every time. I can see so many different safety issues here. While it isn’t exactly great news to say that my gym’s handicapped shower is almost always occupied, typically by someone that isn’t in need of this stall, it goes to show how given the choice, most people would prefer and benefit from a shower that has a bench provided.
[00:14:44] When I would assist my patients who sustained a recent spinal cord injury, or my patients with Guillan Barre, or even just the patients who experienced extreme fatigue from inactivity while at the hospital, it was a whole ordeal for each shower.
[00:14:59] Like Bonnie was mentioning, it was literally a 45 minute, sometimes hour ordeal. Completing a full showering routine with any of my patients would have been near impossible without a place for them to be seated.
[00:15:12] Sally: Yes. And if the benches already built into the shower, this eliminates having to position your shower chair, where you need it. And it’s also one less piece of equipment you have to store in your home because the feature just becomes part of the wall. But in regard to the community setting, many of our interview subjects also mentioned how convenient it is to have benches throughout our neighborhoods and parks.
[00:15:35] Kristen is the first person you’ll hear from about how benches within the community are so helpful for her. Kristen is a woman who describes her experience with fibromyalgia and explains what it’s like to live with chronic pain. Here’s her response when asked about what design features within the community are helpful to her, as someone living with chronic pain and fatigue.
[00:15:56] Kristen: And then, you know, even in like, if you’re talking about area parks or something, just making sure there’s seating, there’s adequate seating. And that, I mean, it’d be nice if it wasn’t a bench, because then you could actually, you know, take a rest.
[00:16:11] Sarah: Sure. Yeah. Yeah. No, that’s really good. And I think even that, I mean, that’s just beneficial for a lot of people, you know, whether, you know, they’re older and they need to take a break or they have children and they need to do something. So just having those available would benefit a lot of people.
[00:16:26] Sally: I think when Kristen says she wishes it wasn’t a bench, she just means she would prefer a bench or chairs with backrests so she can lean back and really let her body rest, and this is a great point. Kristen experiences a great deal of pain and fatigue after too much time up and about. So for her, having a place to rest is an absolute must if she wants to spend time walking around her community. Sarah, the one interviewing Kristen here, follows up with a great point about how benches are also great for anyone else who needs a rest, including older adults, parents with children, maybe a woman who’s pregnant, or even someone who needs to sit down after a long run.
[00:17:05] Rebecca: Absolutely benches are a must in public spaces like parks, and even in other public spaces like large offices or stores. For a plethora of reasons, people need to sit down when they’re out and about whether it’s due to fatigue, to stop and look for something in their bag or pocket, or even just to socialize.
[00:17:25] This is why benches and rest spaces are universal features to include in designs. They promote safety, health, and social participation for a wide variety of people. What else did our design advisors have to say about benches?
[00:17:39] Sally: Sara is another person who found great value in benches within the community setting. While going through chemotherapy and cancer treatment, Sara was still attending school to get her occupational therapy degree, which I think is pretty incredible. But while completing her fieldwork in a psychiatric hospital, Sara mentioned that she struggled at times to get around such a big facility, but she did mention the importance of benches in helping her conserve energy and participate in her fieldwork. Here is her story.
[00:18:10] Sara: So while being at Western State and going through chemo, it was quite challenging just because of how big the facility was and how long hallways were. So just getting around and trying to get to the office and the classrooms was quite challenging for me. And that’s when I realized the importance of energy conservation.
[00:18:33] Luckily Western State had benches built into the walls in every hallway, so just getting through, walk maybe like a little bit and sit and breathe. And then once I felt better, walk a little bit more, and that’s how I definitely gone around at Western State. I was just, it was challenging, but we made it work.
[00:18:55] Lauren: I am all for benches in every community space. I think it’s easy to see where and how these could be useful. Dads and boyfriends or husbands could have a place to relax when they get roped into shopping with their significant others. I know, I usually have to park on the opposite side of the mall as my favorite stores, so having a place to rest or sit and wait while a loved one pulls up the car when you’re tired or not feeling well is great. For me, I’d love to have more benches in our community where I could sit after a long run or a nice walk outside and enjoy the fresh air. I can’t think of any person or community space that wouldn’t benefit from having more benches to rest.
[00:19:33] It’s great that Sara mentioned the indoor spaces where these benches are needed. I think it’s easy to think of outdoor spaces where they are more common, but having more benches within large commercial or indoor community spaces is also so important for energy conservation.
[00:19:50] Sally: Now that we have discussed wide doorways and benches, I want to discuss the value of building and designing a ranch-style or one-level home. But before we talk about why a ranch-style home is the most universal option, let’s talk a bit about the dangers of stairs. Daniel is one of our interviewees who has lived with total blindness for over 30 years, and he has a guide dog who helps him navigate his environments. Listen to Daniel’s story about how stairs can be dangerous with his condition and when working with his guide dog.
[00:20:23] Daniel: Um, steps is one thing that as I get older, I just don’t like dealing with them as much. I mean, thankfully I just got two steps on my porch and one step in the house, no big deal, but I’ve been in other towns where people got like 10 steps. Oh, I hate it. Not having railings. Like sometimes you’ll have places that have on one side, not the other side.
[00:20:42] And you know, just as I get older, I don’t mind going up, it’s going down, especially on the guide dogs. Sometimes they’re lunging your body forward. So if they don’t stop on that first step, you can, you can, you know, go down you know, a step or two, not falling all the way down, but I mean, I’ve done it here in the house. Just the other week I got, I would turn around. I was playing with my son. I almost went down the steps behind me. I’ve kind of stumbled a little bit and then grabbed the wall and I was like, whoa. Um, so yeah, th those are some main things.
[00:21:11] Sally: Daniel is someone who, I think, would really benefit from a ranch-style, home, that being a home without any stairs. As he mentioned, going downstairs can be very dangerous, especially when his guide dog lunges a bit or when children are in the way. But honestly, I have fallen down the stairs many a time and see my family members do the same. Actually, one time my dad dislocated his shoulder from falling down the stairs in a home, which again, just shows how dangerous this design can be to anyone, not just someone like Daniel, who has a visua l impairment.
[00:21:44] Rebecca: Oh, yikes about your dad, Sally, but a perfect example of why the stepless home is a great choice when possible. They’re also supportive for folks who are interested in aging in place, which means they don’t want to relocate as they get older. Also, homes with no steps are very visitable and a lot of different people could easily maneuver around homes like this, whether they use a mobility device, have trouble with stairs or anything else. Also, again, moving without stairs must be a breeze compared to moving in homes with steps.
[00:22:19] Sally: Wow. I’m just imagining, moving into a beautiful one-level home with large doorways and high ceilings. What a dream. It’s also nice to think about all the people that could visit you after the move, after you’ve already settled in. When building new homes from the ground up, it’s easy to design and plan for a house without stairs, but new builds are not a possibility for everyone. Home modifications and renovations in existing homes can also help people avoid using stairs. In particular, having a full bathroom and bedroom on the first floor is very helpful for people who cannot, or maybe should, not climb stairs like Haley, Daniel, and Cordelia.
[00:22:59] Cordelia has not been introduced yet, so let me do so now. She is a young girl with Rett Syndrome whose parents were interviewed about the barriers they face in their physical environments. Rett Syndrome is a rare genetic condition that affects brain development and leads to severe impairments in speaking, walking, eating, and breathing. Cordelia’s family explains that she will require a chair or a stroller for mobility once she gets too heavy for them to carry. Right now, Cordelia’s bedroom is upstairs, but she will not be able to access that room in a year or two when she gets bigger.
[00:23:35] Miriam: To, um, you know, probably need to move her bedroom downstairs. Uh, yeah.
[00:23:42] Kathryn: Do you have a space to do that?
[00:23:44] Miriam: We do. Yeah. It puts her like right next to the dining room, but we do have the space.
[00:23:49] Kathryn: Yeah. That’s important because when we talk about home design and hearing some of the other stories from the interviews, like if somebody. An adult ended up in a wheelchair from an accident or something like that. So yeah. And they just, they have to, yeah. And sometimes moving is not an option, so they have to just gut their house and you try to make it work.
[00:24:12] Lauren: I noticed on my fieldwork rotations, that a lot of families were eager to bring their loved ones home and would mention how they had a space that was rearranged to have a bedroom and a bathroom situated on their first floor of their home. However, when we ask more about these, we realized that the setup was usually a makeshift situation and less than ideal.
[00:24:32] Usually something that they could potentially scrape by in a temporary situation, but even then it would be uncomfortable and often unsafe as well. Most importantly, having stairs without an elevator, lift, or way to access the rest of the commonly used areas in the home can be quite isolating. People are sometimes essentially just parked in the family room.
[00:24:53] We just spoke about this concept in our previous podcast about temporary disabilities. While it is most important to have a first floor accessible bathroom and bedroom, the next important consideration would be to make sure everyone in the home has access to each room that their family gather’s in.
[00:25:10] Sally: I will wrap up this last bit about ranch-style homes with a quote from Sara that I think sums it up very nicely. This is Sara’s response to being asked if she and her husband would consider having a one level home in the near future.
[00:25:24] : I think I like the one level home because you never know what happens in life. Yeah. And a one level home is definitely more convenient and accessible I feel like.
[00:25:33] Sally: Sara really hits the nail on the head when saying you never know what’s going to happen.
[00:25:38] I think avoiding stairs if possible, or at least having a bedroom and bathroom on the first floor, would solve a lot of problems for people dealing with an illness and disability, whether temporary or chronic at all stages of life. And of course we can’t forget about those wide doorways and universally designed showers.
[00:25:55] Rebecca: So true. And that’s the beauty of universal design. Isn’t it ladies? The idea that it is flexible, so it can be used and functional at all stages of life and by all people. Thanks for bringing these perspectives to Good Fit Poor Fit today, ladies, and to the folks in the videos. It’s been an absolute pleasure and I can’t wait to chat again real soon.
[00:26:16] 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]
[00:26:47] Thanks for fitting us into your day!