Show Notes
We discussed a lot of different topics this episode. Here are links to more information…
Here is a link to the previous episode we recorded with quotes discussing how inaccessible housing has an impact on someone’s health.
Definition of House Poor from Quicken Loans.
We analyzed research from Cornell University and determined that households with at least one working-age adult with a disability have an average of 36% less annual income than households without a disability.
Walkability information from the CDC.
Good Fit Poor Fit episode #21 on bathroom storage.
Transcript
[00:00:31] Hello, everyone. Welcome to another episode of our podcast. Awhile back, I did an episode with the focus on quotes our organization had gathered about the inaccessibility of a home and how it has an impact on someone’s health. I’ve linked that episode in the show notes and I wanted to do another installment with the same topic today.
[00:00:52] I always think it’s so helpful to hear firsthand accounts of people’s experiences. Understanding people’s lives from their personal stories really helps us dig deeper into people’s lived realities and potentially adjust our way of thinking to find a way to promote change.
[00:01:10] It is helpful to note again that when we asked people to share on how housing has impacted their health, most had more to share than just features they wish they had in their home. That, of course, was the tip of the iceberg. But financial, general health, and mental health topics were discussed in more depth because of inaccessibility.
[00:01:31]The secondary problems were result of the simple fact that they can’t do a task because the design is inaccessible or they had to rely on others. It’s a complicated domino effect. These individuals that I’m going to share quotes from today did give us permission to share their names.
[00:01:49] And first off is Reveca. Her quote is:
[00:01:54] “Most don’t understand what access really means and how it impacts the independence and autonomy of individuals with disabilities. Lack of accessible housing impacts every aspect of life, from mental health and feelings of isolation, to safety entering and exiting the home or bathrooms, to the foods we are able to prepare in our kitchens”.
[00:02:16] So here are a few follow up thoughts from her quote. I completely agree with what she’s saying in regard to the word ‘access’. What does accessible mean for different people with different needs? Is a specific feature accessible for multiple people? Is someone with a vision impairment able to use the home just the same way as someone who struggles with mobility? Or is that shower that you’re installing in somebody’s home really going to meet the needs of the people living there now and in the future?
[00:02:47] Access and accessibility can be confusing because it has a variety of meanings. Some could take accessible to mean just for people with disabilities or impairments that is usable for somebody that has a health condition. Or others could take it as it’s easily accessible, meaning close by or convenient, or maybe easy to understand. Have you ever watched those HGTV House Hunter shows? And they say things like “This condo provides easy access to the train”. Really, I think what Reveca is getting at here is understanding what people really need in their home to get their daily tasks complete. And having people with disabilities share what they need to make things function is the only way they can get that information and how accessible it really is.
[00:03:38] I love her comment about how the LACK of accessibility impacts every aspect of life, especially when we talk about the kitchen. So say you’re unable to use the kitchen well and it’s just not safe for you to do so. Things are out of reach and you really can’t open the oven to get things out safely because it’s really low. You probably don’t choose the healthiest meals to eat and either purchase what’s convenient to pop in the microwave or maybe you order out a lot. That can get expensive, too.
[00:04:09] This definitely has an impact on your health by opting for convenience because the design of the kitchen doesn’t allow you to prepare a healthy meal. Plus a lot of meals require multiple steps of prep and having the ability to reach and manipulate all the tools that you need to cook the meal can be frustrating if they aren’t, well, here we go again, accessible. You get the point.
[00:04:32] Onto the next quote. This is Jeff.
[00:04:36] “I worked for 10 years but my wife and I got divorced. So I had to move back to my hometown. There were virtually no jobs for individuals with disabilities. So now I’m living back with my parents. I would love to have my own house built the way I need it. Part of my depression stems from inaccessibility and still having to rely on others. In today’s market, rent and housing prices are simply unaffordable for someone that only has a social security disability income to live on. Buying or building a house would be the best for all of us. But most of us can’t afford that, so we’re stuck. It seems like we’re in a never-ending battle. I do hope to overcome it and own my own accessible home. Money is the biggest hurdle”.
[00:05:20] So the thing that really resonated here with me was the word ‘stuck’. This is the situation that many people in our country are finding themselves in. Here’s an example. You have a disability and you get on benefits, which means you receive some money each month from the government, as well as healthcare benefits. However, you realize you really can’t get ahead with just that monthly payment. So you try to find a job. If you get a job that pays more than you’re allowed by the government to make, then you lose the benefit of not only the money, but access to healthcare.
[00:05:56] So you try to find a job to make more money and receive benefits from an employer to be able to get off disability. Unfortunately, your town doesn’t have a lot of options other than manual labor or factory work, and that’s not easily doable with your disability. So if jobs aren’t really available in your area, then it’s impossible to get off disability, making it more difficult to save for a home or other things. Then you’re just stuck continuing to receive payments and unable to get ahead.
[00:06:27] There are other people who do find an accessible option in their town to rent or buy, but it’s outside of their price range. So if they do decide to purchase or rent that property, and it’s more than they can afford, then they become ‘house poor’.
And here’s the definition of house poor from Quicken loans.
[00:06:49] ‘House poor’ describes the situation of a person who spends such a large portion of their income on housing expenses, including mortgage payments, insurance, taxes, maintenance, and utilities that they have trouble affording much else. To avoid this, financial advisers have long recommended homeowners spend no more than 30% of their gross income on housing expenses.
[00:07:12]That’s the end of that quote, but I’m also going to share some information that we found from Cornell University. And they have identified that households with at least one working-age adult with a disability, have an average of 36% less annual income than households without a disability. So that means that people with disabilities on average are going to have less income in the first place.
[00:07:37] So Jeff is really on target here and in his experience of being unable to own his own accessible home because of his biggest hurdle, money. In our organization, we are also trying to take note of the affordability of the designs we create. It is a challenge to design universally, but adding affordability into the mix is needed and a problem-solving puzzle that we’re trying to figure out.
[00:08:01] So onto our next quote. This is Brook.
[00:08:04] “Many of us get complacent with ‘less than accessible’ features of homes and apartments to make do unnecessarily. We sacrifice time, energy, and safety to compensate. The lack of affordability in already accessible homes is emotional hurdle for those of us who would like the longterm security and comfort of a place designed for our needs. But realistically cannot afford this “luxury”.
[00:08:33] Brook isn’t done with her quote, but I wanted to make a statement. I personally resonate with feeling complacent with less than accessible features. We currently live in an apartment and there are definitely some features that aren’t ideal, but because we can’t afford to build, we’re just dealing with what we have, and like Brook says, “making compromises”. Sometimes these compromises do mean the loss of time and energy, but it’s easy to just say, well, that’s how it is right now. We, too, dream of the longer-term security of home versus renting. So let’s continue on with Brook’s quote.
[00:09:09] “Your home should be your sanctuary and a place where you can rest and renew for what the world brings you each day. My home affects aspects of my daily life that others don’t generally consider. Having a roll-in shower greatly impacts my ability to thoroughly cleanse and protect my skin. But in the rental market, these are rare. Spacious bathrooms and bedrooms with non carpeted floors allow for the Tetris game that is living with mobility equipment. But these things are generally seen as privileges or upgrades. Finding, affording, and moving into an accessible place is often overwhelming and provides a true test of patience and resilience. As someone who enjoys living in new cities, I have to make do in spaces that made my daily life more difficult and time-consuming. Inaccessibility greatly affects my quality of life and my mental health and physical health”.
[00:10:05]I do love the imagery that Brook is explaining here of a home of being your sanctuary and a place for where you can rest and renew. And a lot of times these can only come from having your home be a good fit with some of these additional features. If you are constantly frustrated that you can’t easily use your home, of course, your home can’t be that calm place that you look forward to going to.
[00:10:30] So next I’m going to share Ed’s quote. Ed says,
[00:10:34] “Accessibility is the difference between living comfortably and constantly struggling with pretty much everything. I lived in that situation seven years and it totally sucked. Trapped indoors, unable to exit without assistance, unable to shower, unable to use the toilet, unable to cook without fear of cutting yourself or burning yourself, thick carpeting feeling like quicksand. Simple things like navigating tight areas, narrow hallways, door thresholds, complicate life unnecessarily. The stress is very unhealthy. Your home should be the one place in this world where you can not only be safe and comfortable, but also do all the things for yourself that you should be doing. Inaccessibility makes you feel more disabled than you actually are. When it comes to disability your home should be the great equalizer- where your disability doesn’t matter”.
[00:11:29] Aah, there’s so many good quotes in here! Ed said, “accessibility is the difference between living comfortably and constantly struggling with pretty much everything”. This is something that many people feel daily. The frustration of knowing that each and everything they do or have to do during the day will be complicated and disheartening.
[00:11:49] Plus the fear of injury, like he said, cutting yourself, burning yourself, or even falling is really stress-inducing. I can see why people would not do certain tasks due to that fear and feel less confident knowing they could do those tasks, like using the bathroom or getting in the shower by themselves, if only the design was different and a better fit. You can really hear his words and how this really negatively impacted his life.
[00:12:16] By feeling trapped inside your home, by not being able to go out and feeling trapped by not being able to move around your home, the motivation to improve your physical health would be really hard to act upon because everywhere you look, there’s a struggle.
[00:12:30] Ed’s quote of “inaccessibility making you feel more disabled than you actually are”, is also very powerful. This falls in line with the social model of disability, that basically says that people’s attitudes or even the design of the environment can impose limitations on a person. So if Ed lived in a home that was a really good fit for him to do his daily tasks with ease, it wouldn’t seem like he was disabled at all, because he could successfully complete what he needed to do. However, when an environment is a poor fit, like he described earlier, it creates an additional stress and strain on many areas of your life.
[00:13:09] Ed also talks about the home being a sanctuary. He said, “your home should be the great equalizer- where your disability doesn’t matter”. This is so good and falls right in line with what Brook was describing too.
[00:13:22] The next quote I have is Lyn. Lyn says:
[00:13:26] “I live on the side of a hill and this forces me to use my vehicle to go anywhere, even though there’s a grocery store, 200 meters away, downhill. Less exercise equals less quality of life. Accessible housing within walking distance of most things is expensive. Moving further out of town, usually lowers housing costs, but raises commute costs and makes everything else with a disability difficult”.
[00:13:52] What Lyn is describing is the lack of walkability.
Here’s a good description of this concept from the CDC.
Ultimately, individuals make the decision to walk. However, the decision to walk can be made easier by improving and connecting routes and destinations and communities. Modifying the built environment makes it easier for people of all ages and abilities to walk, bike, run, or roll.
[00:14:17] For example, community design can locate residences within short walking distance of stores and public transportation. Sidewalks or paths between destinations can be designed and maintained to be well-connected, safe, and attractive.
[00:14:32] Transportation and travel policies that create or enhance pedestrian and bicycle networks, or expand public transportation systems, can be another approach to engage active transportation, such as walking or biking. Improving walkability of communities can also help people who participate in other types of physical activities, such as those who use a bike or wheelchairs.
[00:14:57] So that was kind of a long description, but just think about what your city could look like if that infrastructure was in place. Think of the convenience that Lyn would gain if he didn’t live on the hill and he could just make that quick trip to the store without having to get in and out of his vehicle.
[00:15:15] When Scott was in undergrad he used a power chair but also found that driving his van to classes at school was more convenient because he’d often have to take the long way around the barn because there weren’t curb cuts at the ends of sidewalks. Can you imagine having to get in and out of your vehicle, loading and unloading your wheelchair, or other mobility equipment, each time? That’s a lot of extra time you have to plan for just to do simple errands.
[00:15:40] Having your own transportation or being close to public transportation is also a factor in this as well. Thankfully Lyn can drive and get himself and his equipment out of the vehicle by himself. But if he couldn’t do that, he’d be even more stuck. He also makes a good point about location. Most often to get to some of these amenities of walkability or public transportation, you have to live closer in to town, which increases the cost of living. Yet, by living further out into the country, you have to rely on transportation to drive everywhere because of the lack of sidewalks.
[00:16:15] So lastly is Tanya. Here’s her quote:
[00:16:20] “Some of the smallest things can have such a huge impact on someone’s health. Smaller doorways can cause injuries to hands and skin just trying to squeeze through them. A bathroom that does not have a shower you can access can cause terrible skin issues that can lead to infectious and costly wounds. Sponge baths are just not the same as a shower and basins that are used over and over and over can harbor bacteria. Sometimes that can be deadly. Sometimes it can be costly to treat.
When thresholds between rooms are not the same height, even a small rise to get into another room, can become impossible for someone with little upper body strength and/or arthritis in the hands. Then people get weaker and not stronger because they can’t get from room to room to do things for themselves. Everyone else has to do it for them, which means less independence and more caregiver needs.
Caregivers are usually family members that have to move in with the disabled persons. In our case, my sister and I had to move into my parent’s small house and now we’re all tripping over each other. There is not near enough room for all the medical equipment and everyone else. Our family has always been close, but the stress has taken a toll on everyone. Stress will create all kinds of medical issues. It’s financially devastating to everyone involved”.
[00:17:42] So here are a few thoughts from me. We often talk about with other people who have disabilities, that when we all move out of our homes, we’re just going to have to do a lot of spackling and painting to fix all the walls in our home where medical equipment and wheelchairs have made dents, scratches, and marks all over the place.
[00:18:00] This could be because the doorways and hallways are too small to turn around in without running into them. Or we’re just accidentally running into things while moving around. Tanya mentioned trying to squeeze through small doors while pushing a wheelchair and cutting up your knuckles in the process. This is directly related to living in a home that just isn’t a good fit for someone using a wheelchair or walker to move through the space easily. A cut on the hand may seem like a small injury to some, but it can lead to more health problems. People with decreased circulation in their arms and legs often have a more difficult time getting these things to heal when there’s a wound. This is especially the case on feet, legs and the bottom. It can be very difficult to keep those areas clean, especially if there isn’t an easy way to get in the shower frequently. And unfortunately, this is just a vicious cycle and some people just don’t have another option.
[00:18:53] I thought Tanya made a good point about getting weaker due to the inaccessibility of a home because you can’t do things for yourself or move around, which was also noted by Ed.
[00:19:02] One thing that I’m glad Tanya brought up was the topic of living arrangements. It’s very common to have people have to figure out a new living situation after a traumatic event. If their home isn’t accessible or if the person they’re living with is unable to help care for them, then oftentimes people have to move or somebody else lives with them. This is a major transition in itself of living with new people and having to rely on them, but figuring out where to put all the extra equipment is really stressful. I know many people struggle with the fact that they feel like their house was all of the sudden overrun with medical supplies and big, bulky things that they can’t keep out of sight
[00:19:43] Scott and I often talk about the need for equipment storage that’s out of the way and not part of your everyday living area. It’s common to see extra equipment in our house that’s just in a random spot because there’s no good place to put it. Scott uses a power chair sometimes and a manual chair at other times, but it’s not like most homes were built to store a big power chair or lots of other pieces of medical equipment.
[00:20:07] You do often see homes with flex rooms of sorts. I grew up in a home that had a large unfinished area over the garage. That would be a great place to keep some of this extra stuff, but of course, there were stairs to get there. So that’s not really convenient for big power chairs and such. I actually just did a podcast, which is #21, about bathroom storage options, including a really large closet for storing these types of things. So check out that episode if you’re curious about some unique storage options.
[00:20:36] Well, that’s the end of the quotes for this episode. I am really thankful for Reveca, Jeff, Brook, Ed, Lyn, and Tanya for their perspectives. It is really nice to bring other people’s opinions into these conversations so it’s not just me talking about these issues all the time.
[00:20:55] Also, thank you for listening to another episode and I really hope that today’s discussion helped you broaden your perspective on how accessible homes can reduce these stressful areas of financial, physical, and emotional strain on families in your own communities, as well as learn more about how people are living their daily lives and what life is like and how stressful these things can be for them.
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