Transcript
[00:00:27] Sarah: Hello everyone, and I hope your day is going well. Welcome to another episode of our podcast. At our organization, we know that housing often isn’t a good fit for people to do their daily tasks, and there’s research out there that shows that people are impacted by the inaccessibility of their homes in many ways.
[00:00:48] That’s why there’s been a lot of emphasis on the safety of homes in different industries and professions for those who are aging or have disabilities. Occupational therapists and physical therapists have always been in the business of helping people function better in their homes by improving their strength, modifying their environment or their tasks.
[00:01:07] While those in the building and design industries are learning how to alter their designs and plans to meet the needs for a wider variety of people. Even product designers are jumping on board to try and get more functional options out into the mainstream market. While I’m excited for there to be more emphasis on the accessibility of homes in different industries and professions, there is still a lot of work to be done.
[00:01:31] A few years ago we decided to ask a question to some of the people we were connected with on Facebook in a few disabilities specific groups. Our question was, how does the inaccessibility of your home have an impact on your health? We were surprised that the answers included more than just features they wished they had in their home.
[00:01:51] That, of course, was the tip of the iceberg, but financial and mental health topics were discussed in more depth because these things were the result of the simple fact that they couldn’t do a task because the design was inaccessible or they had to rely on others. It’s complicated and a domino effect, and I wanted to share with you several quotes that stood out to me and I figured they might be interesting to you as well.
[00:02:20] These individuals did give us permission to share their names.
So first off is Jacqueline. She says,
Emotionally it embarrasses me. I don’t have an accessible bathroom, so somebody has to get my toothbrush for me and I have to do bed baths. Financially it makes it hard because we’re hiring people to help take care of me that otherwise wouldn’t need.
[00:02:44] So here are my thoughts. This makes a lot of sense, and this is a common situation, unfortunately. It’s really difficult for individuals who have acquired an injury later in life and are unable to do things they were once able to do. Maybe they even relearn tasks in rehab, but when they get home, their bathroom or kitchen isn’t set up well and they can’t even reach the supplies they need.
[00:03:07] In my conversations with others who have disabilities. One lady who we know, she couldn’t even get into her bathroom with her power chair, so she had to wash up in the kitchen. I totally understand that embarrassment. The financial strain Jacqueline mentioned, is a barrier for many families. In addition, hiring a caregiver to help with personal tasks is an additional cost like she mentioned, but it can also be frustrating to have to put extra money toward hiring a caregiver just because the house isn’t functional. Granted, I understand that hiring a caregiver is often helpful in regard to maybe providing respite for a spouse, parent, or other family members, but if the environment supported those tasks and extra money didn’t have to be spent on additional care, that would be a game-changer for many people and free up their finances for other things.
[00:04:00] Onto the next quote, this is David. He says,
Not having an accessible home also costs a lot of additional time to get showered, dressed, etc. The loss of time means less time to do things you love and can also prevent you from socializing as much, which definitely affects your mental, physical, and emotional wellbeing.
[00:04:22] The thing that really resonated here with me in this quote was the word loss. Loss of time for what’s important. Many people don’t realize the extra time it takes for people to get ready who have a disability and in addition, are trying to do it all independently. Or even with some help. Someone with decreased hand function may need extra time to put on their makeup.
[00:04:45] Or someone who has difficulty moving themselves, just can’t jump into the shower, onto the toilet. They have a process they go through to move from one surface to another safely, or may even need the help of a family member or a caregiver to do so. It can be a production just to get ready to get out the door and when it takes extra time like this, it’s exhausting. The process is longer in general, but when the home isn’t designed well, it can take much more time just to do these seemingly simple tasks. On the flip side, if the environment is well designed, the time doing these tasks can be greatly reduced. I know one lady we were friends with talked about how she doesn’t schedule things in the morning before a certain time. It’s just not possible for her to get out the door by then. Which makes it difficult if she’s invited to be somewhere in the morning. She may have to skip some things she does to get ready or she has to get up extra early just to make sure she’s prepared to get out the door.
[00:05:46] Onto the next quote. This is Yvonne, and she made some great points. Here’s her perspective.
Loose carpeting makes me not want to move around much. Kitchen cabinetry that isn’t within reach means I’m either dependent upon my able-bodied fiance or we keep things in a cluttered mess and the cabinets I can reach. The showerhead is also out of reach. Of course, all these things can be fixed with enough money, but that’s not an immediate option.
I live with frustration, potential hand/wrist damage, risk of having things fall on me as I sit on the very edge of my chair and reach for them, and occasional shortness with the love of my life over stupid things that I should be able to do but can’t because the lack of accessibility in my own home.
Oh, and there could be a point made for how the lack of accessibility on my friends’ homes affects my social life and stress levels. Why do construction companies like to use such tiny bathroom doors?
[00:06:47] First off, I get Yvonne’s frustrations and my husband and I have these relational frustrations too over things that are not functional or over little things that I wish he could be able to do, but he can’t because the functionality of our apartment, it just isn’t there.
[00:07:05] Yvonne knows what needs to be changed in her place, but like she says, it takes time, money, and resources. Plus if you’re renting an apartment or a home, some of these changes aren’t easy to make as many landlords want you to return things back to their original state unless they have an added value to the unit, and that money also comes out of your pocket.
[00:07:27] The strain on relationships and the issue of safety is a definite reality for many. Many people stopped doing things around their home because they’re afraid they’ll fall, or they’re asking their caregivers to do more because of that fear. How many older adults have you known who have decided to not take a shower because they’re afraid of falling?
[00:07:48] I know when I worked in a rehab hospital, I would ask patients questions about, you know, how they normally take their shower and what they do, and I had many older adults saying that they didn’t get in the shower. They preferred standing up their sink and washing off. In addition, when people stop moving around their home, their abilities decline.
[00:08:09] I know a Home Health PT who says he will see patients in their home after returning from the hospital, and in that short time since discharge, they’ve already declined in the distance they’re able to walk because they can’t get out of their homes easily. Or their home prevents them from walking around safely due to rugs, clutter, the inability to get outside, and other situations. Just like Yvonne said, she’s having to store things all on one level in a cluttered mess, just so she can reach things.
[00:08:40] Yvonne’s last point about other, people’s homes is also spot on. We know the frustration well of not being able to visit friends and families in their homes easily. We’ve had friends measure their bathroom doorways only to find out that Scott can’t fit into their bathroom.
[00:08:55] We either decline going or he has to reduce the amount he drinks and eats so he doesn’t have to go while we’re visiting. Well, that’s frustrating. We’ve even met up with friends in other locations, like going to a restaurant because getting into a friend’s homes is just too difficult.
[00:09:12] Next is Tyler, and he also had some good points to share. Here’s what he said.
We had to buy our first home above budget because the selection was so limited for homes that we could actually make accessible the lack of universal design limits one’s options. We’ve since sold that home and built a way more accessible one. About other people’s homes. It sucks when all of your younger cousins and friends buy split-level homes because that’s what all the local builders have been building for decades because they’re all an easy sell as a starter home.
[00:09:46] Tyler also feels the pain of not being able to visit friends and family. This is a common trend.
[00:09:52] We just shared a blog post with the statistic that said, right now the average age of the home in the US is 46 years old, meaning that all of the homes are averaging to be built around the year 1974. If you think about the homes in your communities that are in our current housing market. Those homes definitely fall into categories that are more difficult to renovate, like split-level homes, like Tyler said, and homes that just weren’t designed with the idea that someone with a disability might live in them. That just wasn’t in the forefront of builder’s and designer’s minds.
[00:10:27] He also shares some good thoughts about finances. People have to either compensate for something that doesn’t work to keep the price down or blow the budget to make sure they can do their daily tasks with ease. Plus you have to weigh the cost of buying to renovate or do you build new? If you renovate that could cost a lot more than just building what you know would work.
[00:10:48] For myself and Scott, I know there are cheaper options in our town to rent, but the inaccessibility of those units is just not worth it for us. Life is already more difficult and we are paying a higher rent to keep our sanity and allow Scott to be more independent. Granted, we are still making some compromises in our current space, but less compromises than we would by living somewhere else.
[00:11:14] That’s why at our organization, we’re always preaching about the idea of universal design being helpful for everyone. You may see the features as a nice amenity now and hopefully you won’t need them due to an illness or injury. But by building with universal design, you open your home up to friends and family who otherwise might not be able to visit. Plus if you yourself end up needing those features, they’re already there.
[00:11:38] So the last quote I wanted to share was James. And I think he shares a lot of important information from his experiences.
It’s a stress-inducing situation that constantly creates a number of health issues. It was not until I actually gained more access in and out of the house that my health truly got better. My mental health went up and I felt more worth than I had felt before.
Coming home from my injury made me very depressed, but I kept hoping, praying, and figuring out how to change things. I can only imagine how much easier life would have been with those things already in place. Physically, my body only got stronger and healthier for moving around. Being sedentary, kept my health down. I lost muscle mass, lacked energy, spent a lot of time doing little to engage with others, and became a recluse. This all impacted the mental aspects of my condition. It was a vicious cycle until we managed to change the living conditions.
The added stress of the financial burden also contributed to my depression. Millions of Americans stress over keeping their families fed or safe, making sure their bills are paid, etc. Throw in the financial impact of making a home accessible. It’s like a ticking time bomb. Unless you have money to have a home custom-built, you’re stuck with the limited options and that’s no way anyone should have to live.
[00:13:04] I’m really thankful for James’, his contribution. It’s really powerful to hear that his physical and mental wellbeing increased only because he was able to get stronger and healthier from an environment that was a better fit for his needs. The opposite is common for so many. Depression, becoming a recluse, losing muscle mass, lack of energy, and it is a cycle that many people are just stuck within the housing options that are out there.
[00:13:30] That’s really why we keep doing what we’re doing in our organization. What if there was a surplus of homes out there for people to choose from, that would change so many things. Granted, going to therapies and working with PTs and OTs are all very helpful to increase people’s abilities and especially if they’ve, they’ve lost function, but all of that hard work could easily be short-lived if individuals are living in situations that decrease their progress versus increase the quality of their life.
[00:14:02] So thank you, Jacqueline, David, Yvonne, Tyler, and James for all of your contributions so we can share your input with others. It’s really nice to bring other people’s opinions into this conversation. So it’s not just us at The Universal Design Project talking about these issues. We have had a lot of people participate when we put this question out there a few years ago and so I hope to do a few more episodes like these in the future. So thanks for listening to another episode. And I hope that today’s discussion really helped broaden your perspective on how an accessible home can reduce the financial, physical, and emotional strain on the families in your communities.
[00:14:45] Have a good day. Bye!
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