004: Invisible Disabilities & Universal Design

Sarah and Kati talk about various universal design features to increase function for those living with invisible disabilities.

Good Fit Poor Fit
Good Fit Poor Fit
004: Invisible Disabilities & Universal Design

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Hello and welcome back to the Good Fit Poor Fit podcast. My name is Kati and I’m an OT student with The Universal Design Project. And today I have Sarah Pruett with me, who is the host of the Good Fit Poor Fit podcast, but today I’m going to actually be hosting, which I am very excited about because today’s episode is actually based on a presentation that I did about a year ago when I was in my second year of OT school.

[00:00:57] The title of that presentation was Universal Design for Individuals with Invisible Disabilities. So Sarah and I are just going to talk about the various universal design features that can be implemented within a home to increase function for those living with invisible disabilities. So let’s get started.

[00:01:16] Sarah: Awesome. 

[00:01:16] Kati: First I want to explain what an invisible disability is and the definition is pretty much in the name, it’s a disability that’s invisible or hidden. But I do want to give you a formal definition: the invisible disabilities association defines invisible disability as a physical, mental, or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker.

[00:01:44] I chose to research this topic because 1: It’s not often talked about and I think that’s because it’s not often seen. And 2: Because my brother is living with an invisible disability and I’ve seen how it’s impacted his life. He has severe Crohn’s disease, which is an inflammatory bowel disease, and that just means his digestive tract or his intestines can become severely inflamed, and that causes really intense pain and it can actually be quite debilitating.

[00:02:14] He’s actually been hospitalized a couple of times for it during pretty severe flare-ups  but over the past couple of years, he’s been able to manage it pretty well through IV steroids. So he has to have a nurse come to the house every eight weeks, and she puts an IV in his arm and administers the steroids that way and it’s been able to manage the inflammation.

[00:02:35] So that’s my personal connection to someone with an invisible disability. Sarah, do you have any personal connection or know anyone living with an invisible disability? 

[00:02:45] Sarah: Yeah, I do actually. So I know several people, but one, in particular, I’d like to share is about my mom. She was diagnosed with a benign brain tumor back in 2012  and it was actually attached to her left optic nerve.

[00:02:59] And this is basically the connection from her brain to her eye and she was experiencing episodes of forgetfulness, like she talked about driving and not remembering how she got there, which is pretty scary, as well as times where she’d be talking and her words would come out all garbled.

[00:03:17] Or she had times where people were talking to her and it sounded like a foreign language. Like she was really confused about what they were saying. She also kept having random songs on repeat in her head and at times she felt like she was smelling this odor in the air that smelled like metal. So, of course, she went to the doctor cause this was all pretty abnormal and she ended up having a surgery to remove the tumor and she continued to have these “episodes”, which she calls them, and we now know she was actually having small seizures that are basically unnoticeable to us unless you kind of know what you’re looking for but she kind of blanks out for a few seconds or a few minutes, and then it’s like her brain just gears right back up again and she’s able to continue what she was doing.

[00:04:02] So for a while she had some double vision right after her surgery.  And many people knew about the surgery and that now she is doing great. But these seizures that she was having continued to happen  and she still feels uncomfortable driving and she really wants somebody with her just in case she has this episode because she can get really confused when they occur.

[00:04:26] So when she did have the double vision, it was actually really difficult for her to read and cook and walk around the community, especially when there were steps. So a lot of underlying things still occurring that many people might not have known about.  

[00:04:39] Kati: Sarah, thank you so much for sharing that about your mom. I mean, it just goes to show that invisible disabilities can be incredibly diverse.  Some more examples that I found from the Invisible Disabilities Association website are chronic pain, depression, fibromyalgia,  diabetes,  autism spectrum disorder, traumatic brain injuries, anxiety disorders, epilepsy, and other seizure disorders, ADHD,  low vision, hearing impairments, PTSD. 

[00:05:10] I mean, the list goes on and on and on and on.  But today we’re actually gonna focus on three of these. And these are the three that I did my research on when I was doing this presentation a year ago for school. And those three are autism spectrum disorder, low vision, and PTSD, or post-traumatic stress disorder.

[00:05:29] So, just a quick note before we get started.  When I was creating this presentation, I dove deep into the research and into the evidence, and although it is scarce,  there is literature that backs all of this up. So if you are interested in looking into that, we will post the references to our website at goodfitpoorfit.com. 

[00:05:50] So let’s get started with autism spectrum disorder.

[00:05:54] Someone with autism will typically have challenges with social skills.  They could demonstrate repetitive behaviors. They could have speech difficulties. They could even be nonverbal and sometimes they will often under or overreact to different stimulus in the environment. Autism spectrum disorder is a spectrum, so people are going to present very differently. No one is the same, so just take that into consideration when you’re thinking of these things.  

[00:06:22] Sarah: Sure. I know we often say like once you’ve met one person with autism, you’ve met one person with autism. Same with spinal cord injury or whatever. 

[00:06:32] Kati: A lot of different things. I mean, everyone’s going to present differently, but I just wanted to give you a general explanation of what autism is and what you might expect to see with someone with autism and how these are universal design features when implemented in a home can help these people to function better. 

[00:06:48] So what universal design features am I talking about? Well, in the research I found that an open concept floor plan is really helpful. Making sure that there are distinctions between the home can help them understand the layout and know that they have a space to go to withdraw if they need to.

[00:07:05] You can do this by painting the rooms a different color so they know that if the kitchen is blue, then the kitchen is where I’m going to be eating. It’s where I’m going to be interacting with my family and friends.  The bedroom could be painted another color, maybe a calming color, and they know that that is a place where they can go to withdraw if they need to step away from the kitchen or the living room or something like that.

[00:07:27] You can also make distinctions between the areas of the home by using pocket doors. A big trend these days are barn doors, so you might have to close off a space and make it more comfortable for that person.  And then you can also use furniture to help you arrange the environment to be more accommodating for somebody.

[00:07:48] And like I said, this is just so that people, if they’re feeling overstimulated,  they know where they can go within the home to withdraw and become more comfortable. 

[00:07:58] Another thing that’s important to take into consideration is the lighting and the acoustics of a room. So that means sounds so lighting and sounds of a room, because people with autism can process sensory information differently than us.

[00:08:12] For example,  bright, fluorescent lighting and loud noises can be really overstimulating for someone with autism and that might cause them to act out or have behaviors that aren’t consistent with what’s actually happening in the environment. So a good way to combat that is to have big windows with natural light to come in, but making sure that you have blinds or curtains that you can close if you need to, if it’s too bright.  And then you can also install lights with a dimmer. And again, that can help facilitate a calming environment and then reducing loud noises. So you can do this by having carpeting in the home that can absorb that noise.

[00:08:51] You can also use wall hangings. So the example that I like to give is pretend like you’re in a recording studio like you’re a musician. And a lot of times they’ll have padding up on the walls that absorbs the sound. But I’ve actually looked online and a lot of that padding and a lot of that material that’s used to put on the walls, it’s actually pretty attractive. It’s visually appealing.  So it wouldn’t look weird to have it in your home. 

[00:09:17] Sarah: Sure. Another thing I was going to say too is, we know a family whose son is really sensitive to sound and the air conditioning units were putting off too much noise in the space we were in. And so there was like a squeak and it was really loud, so even like how air flows through spaces.  There’s a lot of different things to consider for acoustics and noise and light. 

[00:09:40] Kati: Exactly. That’s a good point. Thank you for bringing that up. So just keeping in mind what noises are there and how we can best combat that by putting things in an environment that can absorb sound.

[00:09:53] So moving on to bedrooms.  You’re gonna want to make sure that these bedrooms are nice and big and spacious so that they can have room to move around and feel free and feel like they have a sense of control. And so it’s also important to paint these rooms a calming color. Nothing too loud or bright, like a red, a big red would probably not feel comfortable to that person.

[00:10:17] So next is bathrooms. And again, we’re going to want the bathrooms to be nice and spacious because you do a lot of your daily activities in the bathroom and you don’t want to be cooped up in a small, cramped space. So making these big and also including safety features like non-skid tile, that’s beneficial for everyone. No one wants to slip and fall in the bathroom or the shower. 

[00:10:38] And then scald prevention faucets are also a good idea for this population.  And that’s just to prevent them from turning the faucets too hot and getting burned. And that’s beneficial for a lot of people, like the older adults aging in place. It’s important to have that feature in there as well. 

[00:10:57] Sarah: Or even people that, have difficulty with their sensation, not able to feel,  the hot water.  yeah, those are definitely beneficial for a wide variety of people. 

[00:11:06] Kati: And then when I was, looking into the research. I saw that they suggested a wall-mounted toilet would be good for the bathrooms. And I think this came from a parent of an adult child with autism who was requiring a lot of physical assistance with transferring on and off the toilet. And so having a toilet that was mounted to the wall allowed them enough space to help their child use the toilet and it was  safest option for them.

[00:11:37] Sarah: Yeah. I know several families that have children with autism and even considering people who have memory loss and they’ve actually utilized some smart technology for safety. Even something as simple as an alarm system that sounds a bell when an outside door is open to video systems and monitors to watch, you know, watch their children or their family member from afar has really been helpful from a parent or caregiver mindset for peace of mind to know their family members safe.

[00:12:04] And like you were talking about the bedroom being a place that they can go that’s safe and a lot of times you have to take out things that can be harmful for kids with autism depending on what safety needs they have. So a bedroom can be that safe place for that child, making sure there’s nothing they can pull off the walls or hit themselves with that type of thing.

[00:12:25] So yeah, making it special and a place where parents feel confident that their child will be safe in there as well. 

[00:12:33] Kati: That is a really good point. Technology these days can provide us such a sense of security and can really ease our mind when it comes to this kind of thing.

[00:12:44] Sarah: Sure. Sure. 

[00:12:45] Kati: It’s really cool.

[00:12:45] Sarah: And thankfully it’s, it’s pretty common these days. I mean, before it was really difficult to set up this whole home, like a smart home system, but there’s a lot of companies coming out with some really neat stuff. So 

[00:12:57] Kati: Yeah, it’s a lot easier than you think if you wanted to implement some of these security systems into your home, it’s really relatively easy. 

[00:13:05] Sarah: [00:13:05] Sure. 

[00:13:05] Kati: All right, let’s move on and let’s talk about post-traumatic stress disorder or PTSD. PTSD is a mental health condition that’s triggered by a terrifying event either you’re the one that witnessed it, or you’re the one that experienced it.

[00:13:20] So this could be due to combat, a natural disaster. You could have been involved in a car accident. A victim of sexual assault or oftentimes first responders, firefighters, police officers, paramedics, the ones who are first to the scene,  usually experience PTSD symptoms as well.  Symptoms include flashbacks, nightmares, severe anxiety and depression. But like we said earlier,  everyone with a mental health disorder or even a physical disability presents in different ways.  

[00:13:51] I found a really interesting research article where the author did several interviews with veterans,  to identify ways that the home could be designed to reduce the stress and anxiety that comes along with PTSD.

[00:14:05] So through his interviews, he found that reducing loud noises is really beneficial, similar to autism because the loud noises can trigger a flashback or it can trigger an anxiety attack. So utilizing the same things we would with autism, like reducing loud noises through carpeting, hanging curtains that are thick and absorbent or wall hangings is really beneficial to the PTSD population as well.

[00:14:30] The research article also mentioned that increasing the number of exits in the home and having wider hallways is beneficial because the veterans felt that if they knew that there were multiple ways to get out of the house if they needed to, it really reduced their fear and their anxiety and their stress.

[00:14:48] That was one thing I found interesting. 

[00:14:50] Sarah: Scott and I have volunteered with a warrior getaway in the past and we met a veteran who he wanted to make sure that his master bedroom was on the first floor because he wanted to be able to exit quickly if needed. But he also wanted to have a way to protect his family cause he felt like if he was upstairs, he wasn’t able to watch the entry and exit doors as easily. And so having a bedroom on the main floor for safety and security for this particular veteran was really important. 

[00:15:23] Kati: Yeah. And, to go off of that, having bedrooms on the first floor is very ideal for even individuals who maybe get in a car accident and now use a wheelchair and they have to come home, but their bedroom is up on the top floor. Like that wouldn’t be helpful. But if they were to have a first-floor bedroom that would help anyone no matter their disability. Yeah.

[00:15:45] Sarah: And even some of the things you mentioned for autism, it’s interesting cause a lot of these features that come up, like you’re saying would be beneficial for a wide variety of people. And so, I mean, even if the disability is “visible” or invisible, a lot of the features help a lot of different people. 

[00:16:03] Kati: Right, right. So moving on. This research article also suggested that having a big room is helpful because in a quote from the article said that we lived cramped for so long that I like open area. So if you imagine being in a war and having to be in these,  close spaces and just like hiding, and then you finally come home and. You don’t want to be cramped up. You want to be in a big spacious environment. So having a big room is helpful. 

[00:16:34] Increasing natural daylight is the next thing that they touched on. And I mean, that’s helpful for everyone because increased exposure to sunlight can increase your serotonin levels, and that’s acting as a natural antidepressant. So that’s just making your brain happier and making you feel like you are well and calm. So increasing natural daylight. And again, you can do that by having nice, big windows and having,  sheer drapes and opening up the blinds and painting the room lighter colors.

[00:17:02] They also talked about adding plants to your homes. Which I was like, huh, I didn’t think of that. But there is a benefit to our mental health by adding plants to our environment. They take toxins out of the air and just their overall, their visual appeal is nice. So,  that’s something to consider too.

[00:17:21] Sarah: Yeah, I’ve heard that for just mental health in general and I think, yeah, there is something about having this nice green, you know, plant, living thing. 

[00:17:29] Kati: Yeah. I love plants! 

[00:17:32] Next up is removing clutter.  Clutter can have a pretty big effect on your mental health. And they talk about clutter,  like having a lot of paper places and just like knickknacks and being disorganized and stuff like that, but also furniture clutter, so having a lot of furniture that you might not need.  Having big bulky furniture, things that can get in the way, things that just make a space feel really closed isn’t helpful for this population among other populations too. 

[00:18:01] Kati: [00:18:01] So you just want to make sure that your area is nice and clean, organized, clutter-free and this can also relate to an older adult who lives in a cluttered home that could increase their risk of falling,  so that could potentially be dangerous. So that’s something to consider too. 

[00:18:21] Kati: And the last thing that the research article talked about was privacy. And the veterans expressed that they had a strong dislike towards their residence being visible to neighbors or the public. So in order to kind of help the veterans feel more like they have more privacy and control. Something to consider is landscaping and how you could use tall trees to put in front of your home or buy a big fence, or just designing the landscape in a way that blocks the home from people who the veterans might not feel want to look at their home, you know?

[00:18:56] So that was an interesting fact as well. 

[00:18:59] Sarah: I was just going to say that something that not a lot of people would consider is just the landscaping and how to make that beneficial. Yeah. Work for different people. Even people who want to get out in their yard and work in a garden and how to make that more accessible for them. That’s a whole nother conversation. But the outdoor space can easily be made universal as well. 

[00:19:20] Kati: [00:19:20] And we’re going to talk a little bit about landscaping too when we talk about low vision. So let’s go ahead and jump into low vision. 

[00:19:27] Kati: So just to give you guys a little bit of a statistic there are 38 million Americans 40 years of age or older who experienced blindness, low vision or eye diseases. This number is expected to grow to 50 million by the year 2020 so this year, the amount of Americans who have blindness, low vision or eye disease, it’s expected to be 50 million.

[00:19:51] Wow. I just think that is a huge number. And when that number is so big, we need to take into consideration that our population is full of people who have low vision and we need to design spaces, homes, and environments to accommodate them as best we can. 

[00:20:07] Sarah: Sure. And can you, can you share a little bit of what low vision means? Cause people know, like have heard of the term blind, but maybe share a little bit about what is the term low vision mean? 

[00:20:19] Kati: So low vision can be caused by a number of things. For example, your mom is, she had a tumor on her optic nerve and it was causing double vision. So that could be an example. Another example could be macular degeneration, cone-rod dystrophy, glaucoma, diabetic retinopathy, and cataract. So as we age, just natural aging process, our eyesight gets a little worse, but when we have these different diseases playing a role too, we can have spotty vision, blurry vision. It’s a pretty broad range I’d say.

[00:20:52] Lighting has a huge effect on our ability to see, and that’s the research I found from the National Institute of Building Services, said that the two most important factors to consider when designing for people with low vision is visibility and safety. So that just means making sure the environment is illuminated or you know, well lit and then clear of hazards to improve safety.

[00:21:15] And they even went as far to talk about the different types of trees that should be planted outside. So making sure that you’re not planting a tree that drops nuts or pine cones or fruit, um, because during the different seasons, like if you have pine cones on the sidewalk, someone could trip and fall.

[00:21:34] Kati: If they have low vision and aren’t able to see that. So this document really went into depth.  I’m just going to keep it pretty general and just talk about a few different features that we can consider when building a home for anyone, but specifically someone with low vision. 

[00:21:51] So again, they say that it is important to have an open concept floor plan, nice and spacious, giving them a lot of space to walk around, especially if they have a cane that they need to use to wayfind or if they have a seeing-eye dog or something like that.  Even if it’s someone with good vision who has a mobility device such as a walker or wheelchair, having a big open concept,  is beneficial. Widening the doorways, again, is something to consider  and that just allows them to freely move around.

[00:22:23] Next is lighting.  So we’ve talked about lighting for, I believe, all three of these now. So that is just a huge, huge thing that is so beneficial to many different populations. 

[00:22:34] Sarah: Sure. 

[00:22:35] Kati: And again, just incorporating as much natural light as possible, but making sure that the light that comes in doesn’t cause a glare because glares can be problematic for this population. So, that might mean like installing windows at a different height, so when the sun comes in it doesn’t hit something and reflect, or you can even buy non-glare windows. 

[00:22:57] Sarah: And even the surfaces that people use,  making sure the surface on your floor or countertops isn’t really glossy.  I know that my mom would often see a glossy floor, and she would want to like tiptoe up to it and step on it because she looked wet to her. And so,  if you have, double vision or,  blurry vision for any reason. Glossy surfaces could look wet, which you have to determine are they wet or not.

[00:23:25] And like I mentioned earlier, my mom had double vision. But in general, her eyesight has changed as she’s aged. And so one thing she did talking about lighting is she actually had a lighting specialist come in to change the lighting in her kitchen so she could see to cook better, or to make it easier to cook basically. And so typically kitchens have one light over your table, like one big light in your prep or your kitchen area. And so if you think about it, if you’re cooking something at your countertop, your whole body is blocking the light that’s coming from the ceiling. And so they added under cabinet lighting, they added a lot of different recess lighting throughout the whole kitchen. And so she could adjust that with a dimmer or turn different sections on or off  as well.  

[00:24:12] She just loves it. She also has a little remote control that she can,  turn on,  when she’s coming in from her car, from the garage, just to, to turn the lights on before she actually gets into the space.

[00:24:22] And so lighting is,  definitely something that,  needs more thought into, into some of these newer designs. Cause it, like you said, it really benefits a lot of different people. 

[00:24:34] Kati: Yeah. And some things that people don’t really think about in a home either are the finishes. So doorknobs, countertops. They say that granite countertops produce a glare. So if you are someone with low vision, it might not be a good idea to have granite countertops. Maybe something a little more matte with a matte finish. Door handles that are really shiny,  wouldn’t necessarily be a good idea, something with more of a matte finish. Even your sink faucet, that wouldn’t necessarily be good to have it shiny either.

[00:25:04] Sarah: Well, like you mentioned, the countertops, the pattern of the countertops could be super busy.  It might be so busy that you can’t tell if you’ve spilled something on there or not.  There’s a lot of things to consider.

[00:25:14] Kati: [00:25:14] And another thing to consider would be contrast. So contrast is a huge thing to keep in mind. So what contrast means is basically you just having a dark color against a lighter color.  Because if you have a light color on top of a light color, it’s going to be harder for someone to see. So let me give you an example. So someone with low vision wants to enjoy a cup of coffee.

[00:25:37] Well, we put their coffee in a black mug on a black countertop.  They’re not going to be able to see where that mug is to pick it up. So instead, it might be a good idea to put the black coffee into a white coffee cup so that they can see the contrast. 

[00:25:51] So this can apply to the house.  Making sure that the walls and the floors are a different color. So not everything looks the same so that they can, they know where the floor ends and where the walls start so that they can navigate their environment and they can like know what room they’re going into. And even having like dark handles, door handles on a white door can help them find the door handle so that they can open it and be more independent.

[00:26:18] So the contrast is another huge thing too. 

[00:26:21] Sarah: Yeah, definitely. Well, I think these are all a great start to learning more about how features in the home can be beneficial to those who have an invisible disability. like we’ve talked about when we discuss these features for different users, it is really neat how a variety of different people can benefit from similar features. 

[00:26:40] And many people think that universal design is all about physical access for people who use wheelchairs. And it really goes much deeper in that like we’ve discussed today. My husband Scott would benefit from no steps to get into the house because he uses a wheelchair, my mom would also benefit with her vision deficits with no steps as well. Just like a veteran may want to have a master bedroom on the main floor may be beneficial for someone else who has difficulty with stairs or decreased endurance. I just think this is a really great topic and I know there’s way more that we could discuss, but I think it’s a really great way to help people think, “Oh, like, I never thought of this before. This really makes a lot of sense, and that person may “look normal,” but, there may be other things under the surface that you’re not aware of.  Basically invisible to right. To you observing them. 

[00:27:32] Kati: Yeah. I think it’s a great topic. Thanks for saying that.

[00:27:34] Thanks for joining me today in this episode. I really enjoyed our conversation. I hope you’ve all gained a better idea of how you can make a home a good fit for someone with an invisible disability by utilizing universal design features. 

[00:27:47] Sarah: If you’re listening to this and we didn’t mention some features that are helpful for you, if you have an invisible disability,  shoot me an email at [email protected] and we can talk about some of these features in another episode because there’s so many things and, yeah, we just love to hear what works for you.

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