Show Notes
The following 5 video interviews are all referenced in this episode. They’re each rather lengthy but feel free to check them out!
Transcript
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. Learn more at universaldesign.org.
[00:00:31] Hey there Good Fit Poor Fit listeners, and welcome back to another episode. Today, we have a special treat for you because we’re starting a new series called “Candid Conversations.” We are digging deep into some content we worked on a few years ago with some previous OT students that you may have watched on our YouTube channel. Our current OT students, Sally and Lauren, are learning how universal design is being applied in a home setting, and that means learning about how people of all abilities can use a home well, based on the design. They’re making connections between each of these stories from those YouTube interviews, and I’m excited because they are gathering themes that they’re going to share with you in this new podcast series. I’ll let Sally do more of an introduction for you all.
[00:01:18] Sally: In these upcoming podcast episodes, Lauren and I will be discussing the perspectives of the 24 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.
[00:01:37] As Sarah mentioned, their interviews are posted to the Universal Design Project YouTube channel, if you’re interested in watching them in full, but we will share the links in our show notes of the people who are featured in this episode. We will discuss how and why these individuals face barriers in their home and community settings and how home and community design does or does not support their individual differences.
[00:02:01] We want our listeners and the public to understand that the individual’s differences are only a quote unquote problem when the environment does not support them. So we are here to highlight these barriers and then talk about design elements and solutions that help provide accessible spaces for all.
[00:02:17] Sarah: Yes, I think that’s a point worth highlighting, Sally. The idea you just mentioned of an environment, being a barrier to a person’s participation is really an example of what we call the social model of disability. And that is that barriers and environments and societies are disabling to people as opposed to people being inherently quote-unquote disabled themselves.
[00:02:40] This shifts, the quote unquote blame for disability, from an individual to the environment or society surrounding them. And this perspective on disability is extremely useful in our work.
[00:02:51] Lauren: Yes, I love the point about the social model of disability. This way of viewing the world brings in environmental barriers as well as attitudinal barriers, like you guys were both mentioning, where we all need to look at the re-design of spaces and say “what would be the most functional for everyone?” Rather than saying, ‘It works for me!’. Not experiencing an impairment or disability is a temporary stage of life for everyone, so we should all be prepared to have spaces that accommodate for our future needs.
[00:03:22] Sally: While listening to all of these stories and unique voices, I recognized a common thread among a few of the interviewees. A handful of people talk about their experiences with temporary disability or injuries. These are impairments that are, short-term: think broken bones, concussions, or impairments, following surgery or medical treatments.
[00:03:42] I’m really excited to discuss temporary disability in the context of universal design, because I think this topic is a bit more tangible or relatable to more people. You never think you will have a chronic condition until it actually happens, but it’s easier to imagine the possibility of breaking a bone from falling when walking the dog, because stuff happens. When people can imagine themselves in that position or when they are in that unfortunate position, they can better understand how our homes and community spaces may not be all that accessible due to their lack of universally designed features.
[00:04:15] Sarah: Well put Sally! The fact of the matter is that any one of us can become disabled, whether permanently or temporarily at any point in our lives. So this is a really important perspective to explore.
[00:04:30] Sally: A few interviewees share their experiences with temporary functional limitations resulting from injuries like broken bones, a back injury, cancer treatment, and Guillain Barre, a rare autoimmune disorder. I hesitate to put cancer in the temporary disability category because treatment is super detrimental to the body and can have serious lasting effects. It’s also important to mention here that the majority of people will make a full recovery from Guillian Barre, but many individuals have lasting effects or face long-term complications.
[00:05:01] But for the sake of our conversation, these diseases or disorders are relevant to our topic of universal design for the unexpected. One of the interview subjects named Sara, who we will introduce more later on, mentioned that after going through cancer treatment at such a young age, she definitely wants to prepare for the unexpected by buying a single level home, because you just never know what’s going to happen in life.
[00:05:22] Sarah: That’s definitely a really good perspective to have that I don’t think quite a lot of people do with that one-level living. And I can understand your hesitancy here with putting cancer into this temporary category, but it can really go either way as something that’s impactful, short term or longterm, but Sara does make an excellent point. As she shares in her extended video as a relatively young, healthy person, she has a personal need for easy access to the bathroom and bedroom as the stairs were such a huge barrier for her during treatment. You can just hear how the exhaustion and decreased strength play a big part in her ability to do simple tasks around the home.
[00:06:03] Sally, I know many of the people in our interviews discussed feeling like they were stuck in their home. Can you share more about that?
[00:06:09] Sally: Yes, the feeling of being homebound was definitely a theme I noticed when watching these interviews, even for people with temporary disabilities. People with short-term disabilities may still face a long path to recovery, and depending on the severity of the injury or illness, people may spend weeks or months recovering in their homes. Maggie is one of our interviewees who was diagnosed with Guillain Barre when she was in college. Symptoms of Guillain Barre begin with signs of weakness on both sides of the body, usually starting in the feet or legs. Many people with Guillain Barre experience extreme weakness, fatigue, trouble breathing, paralysis, and loss of sensation, although most are lucky enough to make a full recovery. When Maggie was recovering in her family home, she felt confined to her bedroom due to the layout of her house. This is her story.
[00:06:56] Maggie: If my symptoms had lat, the residual symptoms had lasted any longer, I would have really liked to have been on the first floor. Um, then like somehow gotten a cot or a bed in the living room, and there had been the ability to either sponge bathe or something. Cause I felt like, um, the way my parents’ house was set up, everyone was always on the first floor. So I felt like I was kind of stuck on the second floor sometimes. And I would just end up watching TV.
[00:07:30] Sally: This is a great example of how people can feel stuck, even within certain rooms of their home. Maggie explains how her environment limited her from spending quality time with friends and family who spent most time downstairs.
[00:07:42] Lauren: Wow, yes I can’t imagine not being able to access the family room in our home because that is where my family spends most of our time together. If I experienced the same diagnosis as Maggie, the only room that I would be able to access would be my bedroom on the bottom floor of our home. That would be very isolating.
[00:08:00] One of my patients during my clinical rotations was diagnosed with Guillain Barre around the same age as Maggie and she frequently discussed how she wanted to work on getting strong enough to push wheelchair through the lawn outside her hospital room because she didn’t have an accessible walkway to her front door at home. It’s interesting the amount of obstacles a house can present, even when you experience an impairment when you’re in a young and otherwise healthy stage of life.
[00:08:27] Sally: Yes, Lauren that is a great point. And all of these interview subjects were healthy young adults before their injuries, so this just shows that these freak accidents can happen to anyone. Another one of our interviewees, Tabitha, was in a bike riding accident that resulted in a broken leg, which required surgery. I think Tabitha’s case is a great example of how temporary disability, like a broken bone, can actually be very debilitating if the environment does not support your needs. Especially when recovering from surgery, it can be easy to feel stuck, trapped, or confined to the walls of your home. Here’s Tabitha’s perspective about feeling homebound when recovering from her injury.
[00:09:06] Tabitha: I felt a little bit homebound at the beginning, and I was a little bit afraid because I didn’t know how to maneuver just those two steps going in and out of my house. The couple of times I had to go to a doctor’s appointment or something and like that, um, coming into the house, I was dreading it because I didn’t know how to go in, and so I would have to have someone open the door for me and then I have to turn around, sit myself down as carefully as I could on the floor and scoot myself back into the house and then have somebody help me up. It was so stressful.
[00:09:39] Lauren: Hearing Tabitha describe how stressful it was just navigating through her front door reminds me of many of my patients while on my fieldwork rotation in a hospital acute care setting. The patients with available family care at home were always eager to take their loved ones home and were quick to throw out either dicey or pretty dangerous ‘solutions’ to carrying the patient up their entrance way steps or back deck. Then, patients that lived alone often had to transition to an inpatient rehab facility or senior nursing facility before they went home based on the inaccessibility of their homes and entrance ways.
[00:10:16] Sarah: This is so true, Lauren. Unfortunately many people end up transitioning into another rehab facility just because their home isn’t accessible. This is one of the things I struggled with as an OT in the hospital when helping people discharge, especially when their home was unsafe for them to return to even with minimal modifications. That’s why our organization feels like it’s so important for there to be more homes in our housing stock that are already functional, so when these unexpected events occur, people aren’t having to break the bank to make modifications to their entrances and bathrooms, just to be able to return home safely. And it’s not just the return home. It’s getting back home and doing tasks around the home and then in the community a little differently than before because of pain and frustration of maybe that broken bone or another injury or illness.
[00:11:08] Sally: Great points. And I also want to add that making those minimal modifications inside the home may help that person complete activities of daily living such as going to the bathroom or taking a shower, but those two steps out of the front door can make it impossible or at least very challenging to do other important tasks outside of the home, like going to doctors appointments. These tasks are called instrumental activities of daily living, or IADLs, but we will talk more about ADLs and IADLs in a bit.
[00:11:38] Bonnie is another interviewee that shared her experience with two broken bones. Bonnie was with her family one weekend, having a great time at the apple orchard when she fell and slipped on a rotten apple and broke her ankle and her wrist. Bonnie has another great case to share because this freak accident could have happened to anyone. She shares her experience of feeling home bound during the first few weeks of recovery from her injury.
[00:12:02] Bonnie: It was very hard because I couldn’t get out of the house. So I was, um, the first couple of weeks, I would just go to the front door and open the front door and just sit there and just take in fresh air because it was so it was so hard not to be able to get out and get fresh air. So that was, you know, I that’s how I ended up out outside. Um, just being able to sit at the front door and enjoy just watching the leaves fall or something.
[00:12:24] Sally: This feeling of being home bound can be very challenging mentally and emotionally. As Bonnie mentioned, being quote unquote outside, even if it was just in her front hallway, made her feel less trapped and a little more at ease, but having a patio or a porch with a zero step entrance would have allowed Bonnie to spend more time actually outside in this space. Or maybe she could have even taken a slow stroll with her seated walker around the neighborhood. Again, we seeing that even those few stairs upon entrance can be really limiting to people with disabilities, even if they are just temporary.
[00:13:00] Lauren: The closest thing I have experienced to being home bound was all the time I spent at my parents house during the beginning of last year when the pandemic began. The only thing keeping me from going absolutely stir crazy was knowing I could go on a run or do a new mini home remodel project outside when the weather was nice. I can’t imagine how Bonnie felt, even though she knew its was a temporary state. After just two rainy days in a row, I start promising myself I’ll never take for granted the psychological benefits of going outside and enjoying the fresh air and sunlight again.
[00:13:33] Sally: For some individuals with temporary disabilities feeling homebound may only last for the beginning stages of recovery. However, many people face new challenges within the community when they are able to return to their routines and IADLs outside of their homes. Not all IADLs are activities we complete outside of the home, like meal preparation and cleaning we do inside of the home, but some community IADLs include shopping and using transportation. Shopping is one IADL that came up frequently when people were talking about their struggles returning to the community. There were a handful of comments in the interviews about not feeling quote unquote disabled enough to use the provided equipment in public community spaces.
[00:14:16] Carrie, Tabitha, and Sara share stories about riding the scooters provided at grocery stores and getting odd looks from other customers. Carrie is one of our interviewees who suffered a back injury, which led to surgery. Listen to her experience with using the mobility scooter when shopping.
[00:14:33] Carrie: I mean while I was actually injured, you could see, I mean, I was walking with a cane if I went out, um, sometimes I just wanted to get out of the house. And so I would ride the little shopping scooters at, you know, Costco or Target or wherever. And I would get a lot of like, cause I’m so young, right, you don’t usually see young people on the scooters, but, um, that was really the only time it was- it was visible.
[00:14:58] Sarah: Did you ever feel like you had to explain to somebody like why you’re riding the shopping cart?
[00:15:02] Carrie: I always felt like I needed to. I mean, eventually the people. I mean we’re at Costco enough people got to like realize, oh yeah, that’s, she’s, she’s been on it before, but I always felt like I needed to say like, I’ve ruptured a disc and I can’t really walk, please is it okay if I use this, because I felt weird about using it as a younger person.
[00:15:19] Sally: Tabitha also expressed how she felt like she needed to justify using the scooters because her disability became invisible at a certain point, even though she was still experiencing pain and fatigue.
[00:15:31] Tabitha: But you need to get some shopping done. And so you like go to Walmart and you’re looking at those electric carts and you’re thinking, I just want to ride that because I’m so tired and my leg is really tired, and yet at the same time you feel that you’re not disabled enough to use them. At least I do that because they think, well, I can do it.
[00:15:52] Sally: Tabitha goes further to say that she used to wear her brace out in public if she knew she was going to need a scooter, even when she didn’t need the brace anymore. Tabitha felt more comfortable wearing the old brace to avoid judgment, which I think says a lot about what society imagines when they think of disability. Having that visual cue or indication of an injury, like seeing a cast, a brace or someone using crutches is usually what people look for to determine who actually is disabled. However, people like Tabitha can be just as a need of that scooter due to pain, fatigue, or other invisible symptoms as someone else maybe wearing a cast.
[00:16:33] Lauren: Yes, I can imagine its hard enough to go in public when you’re experiencing more difficulties than normal, but having to worry about what people are thinking or saying to you because of it would make going out even more of a strenuous task. Cystic fibrosis is another invisible disability that I think of, where they may have similar issues as Tabitha.
[00:16:53] Cystic fibrosis is an inherited life-threatening disorder that affects the lungs and digestive system, but if someone didn’t tell you they had it, you wouldn’t be able to tell just by looking at them. These individuals may also experience fatigue or shortness of breath doing everyday tasks like grocery shopping but since they look ‘healthy’ they may be judged for using the electric scooters at the store.
[00:17:15] While most people may not think twice about someone with a leg amputation riding an electric scooter, those with invisible disabilities such as epilepsy, autism, brain injuries or rheumatoid arthritis may experience more judgmental stares when they require accommodations in public spaces.
[00:17:33] Sally: Sara is another interviewee who mentions feeling judged for not looking disabled enough to use the provided equipment in stores. We talked briefly about Sara earlier, but she is a young woman who was diagnosed with breast cancer in her late twenties. Sara would often get judged because people don’t think of 20 year olds when they think of cancer, so she also fell victim to the disapproving looks and stares.
[00:17:57] Sara: I had to push, one of those, you know, electronic baskets and the scooters. That was my life. And then I would get these weird looks from everyone. What is this young person doing? It’s hard. Cause you know, a lot of people will judge me based upon my age because they don’t know what I’m going through, and that was just a little tough to go through.
[00:18:17] Sally: On the same topic of accessing community spaces, I want to mention the issue of parking. People with permanent disabilities can acquire a handicap tag, and park in the accessible parking spaces; however, people with temporary disabilities do not have the same privilege. Sara talks about her experience with parking when going to doctor’s appointments.
[00:18:38] Sara: Um, another thing that was tough was just getting to the hospital or just getting to any appointments. We don’t get handicap stickers for being cancer patients. I don’t know how the whole process works, but I feel like it would really come in handy if we had some type of temporary permit to park closer to the building, because there was times where we had to park far and I couldn’t make that walk. So whoever I was with. Um, at the appointments, like my husband would have to go and get a wheelchair and come back out and get me and wheelchair me all the way to my appointment which would take extra time. But, you know, that was just definitely tough, like a huge change that I wish was easier for us at the time.
[00:19:18] Sally: Tabitha also mentioned how after the bulk of her recovery and even still to this day, she struggles to walk long distances.
[00:19:25] Tabitha: I still think about like, you know, “where can I park that’s close to where I’m going?” Because it actually takes a lot of effort for me to walk here, and my leg gets tired very quickly, and I mean, of course I’m working on it, like, um, physical therapy and trying to strengthen it. Um, but it’s just not the same as it used to be. So I think about that stuff a lot.
[00:19:51] Sally: Maggie also shares her parking experience and said that she was fortunate enough to have a handicap placard when she was attending college on campus. Maggie said that being able to drive and having her handicap parking privilege was one of the biggest assets she had when attending college, while recovering from Guillain Barre. Bonnie is another one, one of our interviewees who expressed her frustrations with parking in community spaces. Here is her perspective.
[00:20:17] Bonnie: And things that I’ve missed, um, even home group. Um, we, we go to home group at it in an apartment complex that doesn’t have accessible parking close by, and to be able to even take any of my devices to get into the building, especially on extremely cold nights, it’s just, um, I just can’t, I can’t do it. It’s just too much. So I’ve, I’ve neglected going places for that reason. Couldn’t go to the grocery store alone until just this week. And then I figured out a way to do that, but again, it’s, it takes a long time to figure stuff out and, it would be nice if we didn’t have to take that long.
[00:20:49] Sally: Bonnie highlights a very important point here about how lack of accessible parking can really limit you in the activities you’re doing and the places you want to go.
[00:20:58] Lauren: Bonnie’s point of missing out on social activities due to the lack of accessibility in the community and at apartment complexes is something that I’ve heard in many of these interviews as well. Especially the point of visiting other people’s homes for homegroup or other friend gatherings at their homes. I’ve heard a lot of people mention in their interviews that this means they either had to not go at all or host at their homes every time. So many mentioned this that I think its a topic for a future podcast. All these ladies also mentioned the extensive planning involved in any kind of community mobility, which adds a lot of time and effort to participate in any activity and just further limits their social lives.
[00:21:40] Sarah: This is definitely something to explore in future episodes. Sadly enough, in Bonnie’s case like she described earlier, our apartment complex was the one she couldn’t easily access due to a lack of accessible parking for visitors, as it’s all street parking and the entrance requires someone to travel a longer distance from their vehicle.
[00:22:02] Lauren, your comment also had me thinking about a phrase we use often, and that is quote unquote, people affected by disability. Because oftentimes it’s not just the person who has the disability, that’s going through all of this planning and trying to make things work due to inaccessibility, but it’s their family, their friends, their parents, they’re all impacted as well. Many people definitely feel the frustration that their homes don’t accommodate their friends or family who have different impairments, and that is a relational thing as well. If the injury is temporary, many people just wait to return to their community activities until they are quote unquote well again. But for those who have a longer-term injuries, then their ability to remain in community and be with others in their homes, who would most likely be a support for them, becomes even more difficult because they literally can’t get into someone else’s home.
[00:22:58] Sally: So true, Sarah. And despite the fact that these injuries we are discussing are temporary, caregiver burden was still present in every case. Many of the interviewees shared that during the first phases of recovery, they relied completely on their spouse to help them complete basic activities of daily living or ADLs. ADLs are simple tasks we do each day that most people probably don’t even consciously think about. These activities include eating, bathing, dressing, grooming, and toileting. When a person with an injury or disability cannot complete these basic tasks we do each day, the act of completing a simple morning routine, may be impossible without the help of a caregiver. The interviewees expressed that they felt guilty about asking friends and family for help with these tasks and that they faced another mental burden of coming to grips with being dependent after being so independent before the injury.
[00:23:53] Something that can help ease the burden of caregiver responsibilities as well as provide more independence to people with temporary impairments is adaptive equipment. Tabitha, Bonnie, and Carrie share their experiences with their support systems, caregivers and the equipment that helped them get through these tough times. Carrie mentioned that at one point in her recovery, she could not physically take a shower if her husband was not home to help. Here is her perspective.
[00:24:20] Carrie: I mean, we had, um, friends and my mother-in-law and sister-in-law came and cleaned our house one day that they would come and just clean because it was a lot on Ben to be working all day and taking care of me because I was requiring a fair amount of help. I wouldn’t shower if he wasn’t there, just different things like that. Um, plus keeping up with the house, it was just a lot on him.
[00:24:43] Sally: Carrie ended up using a shower chair, which eased the burden a bit from her husband, Ben, but having a zero step shower with a removable shower head would have also made this task easier for both Carrie and her husband. Tabitha is another one of our interviewees who makes a wonderful point about the accessibility of equipment for people with temporary disabilities.
[00:25:04] Tabitha: You know, people with a more permanent disability, they have their established wheelchair or their established something that they use all the time. But when you have it temporary, you don’t have that. So you’re just kind of using what you have right then, and a lot of people, I think don’t have their own wheelchair to use in stores. So if a store provided one, so, um, I definitely started picking stores that had a cart. Uh, electric, electric shopping carts or, or they did have a wheelchair.
[00:25:37] Sally: Tabitha suggests that stores and other public places should provide wheelchairs for those with temporary disabilities who don’t have their own equipment. She makes a wonderful suggestion because actually, ADA regulations state that public accommodations do not have to provide their customers or clients with personal devices, such as wheelchairs.
[00:25:57] Bonnie shares her experience coming home from the hospital after breaking her ankle and wrist. When she came home from the emergency room, she had no walker, no wheelchair and no mobility device whatsoever.
[00:26:10] Bonnie: There are places in the community, and I think like in our church where, um, folks have shared their devices with other folks that have needed them. A lot of time it’s temporary, but there are, you can have rental a place where you could go rent some of the things that I was lucky enough to have people share with me. So you could, you could set, set up something like that, or even some churches could do that. Or, um, some of the physical therapy places could do that and not charge an arm and a leg, you know, just, just let them borrow it for a short time. And, um, I think to get people on devices that actually will meet their needs is important, too.
[00:26:46] Sally: I think Bonnie presents a wonderful idea here that could be so beneficial for all people recovering from temporary disabilities. This equipment share she talks about could also be useful for those with permanent disabilities, who maybe are experiencing complications with their normal devices.
[00:27:03] Lauren: These conversations bring me back to the experiences I mentioned earlier while on fieldwork in a hospital. Many people that were going home with temporary impairments didn’t have accessible homes and didn’t want to or just didn’t see buying necessary adaptive equipment for the short time that they needed it, so they resorted to ‘furniture walking’, using Home Depot buckets as shower chairs or other makeshift compensation techniques.
[00:27:29] Patients would also say ‘Oh I don’t need that adaptive equipment, my husband or wife will do that for me’ which is nice if that works for them. But, the future OT in me didn’t like when patients said this because the ‘use it or lose it’ principle, which is so true. What I saw more often than not is either the person returning to the hospital in worse shape than before due to either an accident, losing the functional ability to complete the tasks, or just caregiver burnout.
[00:27:57] When older couples depend on their spouse as a full-time caregiver this can be very taxing, very quickly but this can become too much even for younger family members. I remember one middle aged gentleman that went home against medical advice due to the setup of his home and his current functional abilities because he had three college football player sons that said they could carry him wherever he needed in the home. He returned to our hospital a short time after because it was just not feasible to live in his current home, even with a lot of family assistance.
[00:28:30] Sally: Yes, Lauren, I’m glad you brought up those Home Depot buckets as shower chairs, because we will talk about those makeshift devices, even more in future episodes. It’s great that people can be so creative, but some of these devices are actually really dangerous and could lead to further injury or disability. Having functional devices and a universally designed floor plan would help people be able to return home to a safer environment.
[00:28:56] I would like to wrap up this discussion about temporary disabilities with a quote from Bonnie. I think she did a wonderful job summarizing the importance of a functional environment and how a functional space leads to independence and therefore less caregiver burden.
[00:29:11] Bonnie: So I just want people to recognize that this is hard for anybody, even if it’s temporary, but that we all need to recognize that there are a lot of people out there that this is not temporary and that we need to recognize that they need as much help as they can in their environment and let them be independent because that’s where you get your esteem from, your independence.
[00:29:30] Sarah: Wonderful points, Lauren and Sally, and I think it’s definitely an important reminder to our listeners and to those who build and design homes as their profession to remember that many people who find themselves, even in a temporary situation ,like these, are often so thankful when their home is already functional and meets their needs. When it’s not, it’s just one added frustration after another, probably even more compounded by the stress of medical bills too. By designing and building homes with easy access in and out, bigger bathrooms with no steps into showers, and bedrooms and bathrooms on the main level, we can set people up for success from the start when something unexpected like an illness or injury pops into our lives.
[00:30:14] Stay safe friends, and we look forward to sharing more Candid Conversations with you very soon. Have a good day!
[00:30:21] 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].
[00:30:52] Thanks for fitting us into your day!
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