Show Notes
I mentioned two previous podcasts about quotes we gathered from people who explain how the design of their home can have a negative impact on their health.
- Episode 18: How does inaccessibility impact your health?
- Episode 022: The design of our homes profoundly affects our health.
Transcript
[00:00:31] Hello, again! It’s hard to believe it’s July 2020 and our world is still trying to figure out its new normal with the COVID-19 virus. There are so many things that have changed in our communities and homes. Many people are finding themselves at home more often and are trying to find new activities to do to keep busy and be creative and finding ways to social distance.
[00:00:53] While others are trying to figure out what the future brings with school, work, the economy, childcare, sports, and how we’re all going to interact with each other in person. There are lots of new restrictions and rules that I won’t go into here, but overall it’s way different from the way things used to be. I find myself saying things like “pre-COVID” or “before the lockdown”. It’s a pivotal point in our history for sure.
[00:01:18] One thing that hasn’t changed is the design of our homes. And honestly, people are probably more aware of how their current home works or doesn’t work for their needs, especially with the need to find ways to promote virtual learning, homeschooling, or working remotely in homes that were not originally set up to do these activities. We’re suddenly trying to rework rooms in our home to make it functional for the new activities or quote-unquote occupations we need to perform in them.
[00:01:47] Unfortunately, this isn’t new to people with disabilities because they’ve been making do with homes that don’t work well for activities and occupations way before this pandemic. Some of you may have gotten a taste of what it’s like to be stuck in a home that isn’t a good fit for what you need to do around the house with this pandemic: working remotely, distance learning, stuck at home with your kids for what may seem like an eternity without childcare. But today, I want to dig deeper into what additional changes both physically and mentally this may cause for families who may be navigating COVID precautions with someone who has a disability in their family. And then I want to talk about how the designs of our homes need to change whether there’s a disability or not to meet our needs better. The topic for this episode was actually based on a suggestion from one of our listeners, Kristine, who said:
[00:02:38] “COVID-19 has changed my ability to have anyone come inside to help me with anything. I have a spinal cord disease and I am immunosuppressed. I have to do everything for myself”.
– Kristine
[00:02:50] Her statement is unfortunately common for many people who need care for a variety of reasons, disability or not. I know many families where disability isn’t in the mix that are having the same type of worry with childcare. Should I send my kid to daycare so I can work? Should we have someone come into our home and watch the kids while we work at home or go to work?
[00:03:12] People who need the help of other people, like nurses or caregivers to assist with everyday things, are conflicted if they should continue to have their helpers come into their house. There are many situations where it’s essential to have help in your home. Some people with disabilities have hired caregivers to help with bathing, dressing, cooking, getting groceries, taking out the dog, et cetera. And if they are immunocompromised and are trying to stay away from people as much as possible, this limits or eliminates the possibility of someone coming in to help them.
[00:03:44] There are also parents who rely on having assistance with a child who may have Autism or other complex medical needs. This could take the form of various therapies they receive, nursing care, or just an extra set of hands for helping watch the child while the parents get other things accomplished.
[00:04:02] What do you do? I’m going to outline three options, but there’s probably others I’m not thinking of.
[00:04:09] First, you could risk outside help, but have added anxiety about getting the virus. It’s honestly really difficult to make sure your outside workers are keeping their circles small and not interacting with extra people. Many people I know who are doing this are creating additional policies for outside workers for how they do things in the home to keep things clean. Maybe they have them wash their hands more, wearing a mask and gloves, having them change clothes before they come inside. They may make them take their shoes off before coming in and do daily temperature checks, plus more things.
[00:04:46] Secondly, if you have a disability you could choose to try and do more tasks on your own. Sometimes a little creativity helps make those tasks easier. However, oftentimes doing them on your own could potentially cause an injury because your current living situation isn’t conducive to doing things on your own. You may also have to make compromises on what you do around the home until you’re able to get more help. So maybe you wash up at the sink versus getting in the shower. Maybe you change up how you make meals to ordering in or choosing more microwave options because the kitchen isn’t easy for you to use.
[00:05:21] The third option, you could ask family members or friends to help in picking up some of these extra tasks. Most often when a paid caregiver is in the picture, it is also helping provide relief to give other family members a respite and allow them to continue managing other areas of the home. When that caregiver doesn’t continue helping, this could mean an additional burden on other family members to pick up those tasks, causing an extra strain and tension on the family unit as a whole. But, it could also mean reduced anxiety about not having outside helpers in the home all the time.
[00:05:59] I don’t think there’s a right or wrong answer here, but people have to weigh these considerations for themselves and answer that for their own families. Families are also having to do this now with school in the fall. Do the kids go to school? Is it a virtual thing? Or are you going to be homeschooling your kids? They have to pick what would work best for their family and their kid’s needs.
[00:06:20] Our listener Kristine said that she had to do everything herself due to COVID. So, what if that’s your only option? This brings me to my second related topic of how our homes are designed.
[00:06:32] In some situations, the design of the environment can really make a difference in increasing someone’s independence for participating in the activities around their home. However, sometimes people just can’t get around that extra assistance they need no matter what the design of the home may be and all of those extra precautions must be adhered to, to keep everyone healthy.
[00:06:55] If Kristine’s home was a good fit for her needs, she could potentially do more for herself safely. However, if it isn’t, she’s having to scramble to design things differently for her needs. What if she realizes her current home isn’t going to work for her and needs to do things by herself? It’s not really easy for someone to just up and move to a place that’s a better fit for them when disability is in the mix. There aren’t a lot of options in our communities and around the country. This pandemic came on so quickly and we all just had to really hunker down in our homes and figure out what was next. That doesn’t leave much time for changing our living situation or finding other caregivers who are willing to follow your rules to keep exposure low.
[00:07:37] If there were already homes in our communities that met people’s functional needs really well, it would be easier for people with disabilities to manage their daily tasks and not struggle with the burden of how to receive care or how to get help. But unfortunately, that isn’t the type of world we live in.
[00:07:53] There aren’t a lot of homes available that meet the requirements that people need and they’re living with a lot of compromises. If you’re unfamiliar with what some of these difficulties would be, check out two of my previous episodes where I explained direct quotes from people who talk about how the inassessability of their home has had a direct impact on their health. I’ll link both of those in the show notes.
[00:08:17] It’s been really neat to see how our country has gotten creative with this pandemic. Our country is struggling because of the status quo of how things are designed are being disrupted because of this virus. We have changed the way we purchase things. More people are doing online ordering for delivery or picking up right at the door of their favorite establishments. More people are working remotely and transforming a room of their home into an office. Families are changing a spare bedroom into a virtual school room. We’re having to manufacture different products to keep ourselves safe, from facemasks and plastic barriers at checkout counters. The way we shop and walk around the store to how we check out items at the grocery store has been changed.
[00:09:00] Because we’re having to socially distance, it’s changed the way we interact with others. We are finding ways to still stay together but keep our distance. We maybe even trying out new activities just to keep our families busy, but to do so without a lot of people around. Everything is being flipped around from what we’re used to. My dad and I even joked the other day that a mask and some sanitizer is now another essential item with our keys and our phone when we leave the home.
[00:09:29] We are all doing this because of the virus and we’re having to be creative to still be able to do our essential tasks and stay safe. I also think this is what is really needed in the design of our homes. See the comparison here? If our country can readjust our thinking to combat the way we interact with the virus, it’s possible to transform the way we look at the design of our homes to account for the needs of different family situations, disability or not.
[00:09:55] Our organization has been committed to changing the way homes are designed to meet the needs of our community. All types of families with all types of ability levels are spending more time in their home and it’s essential that we create functional areas in our home for work, gathering, and doing our personal tasks. For those of us advocating for more functional homes, this isn’t anything new, but it’s becoming more important because of this disruption of the virus across our country and the world.
[00:10:24] How have you had to get creative during this pandemic? I’d really love to hear about it. And I want to hear about the creative ways you’ve found to manage things in your home-based around your family’s needs. What struggles have you encountered if you have to have other people come into your home and care for your kids, for your personal needs, or something else?
[00:10:42] I’ll share a few things that we’ve been doing. We are doing a lot of grocery pickup up and delivery. We’ve also had friends, some really gracious friends, who are willing to pick up things for us and run errands when it’s difficult for us to get out. For a while, we didn’t see any outside people or let anyone else into our home. We do have a porch and we’ve rigged up a little pulley system for people to hook a bag onto a carabiner and then we could pull it up and down from our porch. We live in an apartment building with shared hallways and for a while, we weren’t even sure if we could go out into the hall because we felt the need to wipe down everything we touched: our shoes, the stroller, and even Scott’s wheelchair.
[00:11:21] We’ve loosened up our rules a little bit, but we’re still keeping our circle small and only seeing close friends and family in person. We had to have childcare to do our work and we were kind of going a little crazy trying to figure out how to manage work and a child. So we’ve allowed family into our home or visited other family for extra help. But this was very difficult for me to transition from not seeing anyone to being close to people again. We’ve also done a lot of video chats and have been trying to social distance outside when the weather is nice, which brings me to my next point. It’s not just the insides of our homes that need to be considered for a better fit for our needs, it’s the outside too!
[00:12:04] Isolation and the need for connections are a real need and our mental health is very important, too. Of course, technology is great but there really is something about sitting next to someone or, you know, six feet apart with someone and having a conversation. It’s something we really take for granted in this day in age and being outside to do that has become the safest route.
[00:12:27] Some family friends of ours have basically decided to make their backyard a little social distancing destination so they can still see people. I’ve also heard of people doing date nights out in their yard by setting up two different tables and having couples bring their own meal so they could still socialize and have a meal together.
[00:12:46] Backyard gatherings can be a great way to social distance, but what if that deck is up a bunch of stairs? We have some friends who have an awesome deck, but it is up about eight steps from the ground level. That isn’t easy for Scott to do cause he uses a wheelchair and we must rely on two to three people to help lift his chair up the steps.
[00:13:07] We really enjoy seeing other people and so we take this risk, but it’s not ideal and there is a real fear that he could be dropped and we don’t want that to happen. Of course, getting outside and taking a walk or finding a trail to hike on is also an option during these times of needing to social distance, but does the community that you live in or communities across this country even have an infrastructure in place to allow people to move around on sidewalks easily? You know, without a lot of cracks and bumps and actual little ramps to get on and off the sidewalk? And then there’s the access to trails around in the national forest or in parks. Are they easily usable by strollers, wheelchairs, and other mobility equipment? Is there even transportation to get to those places?
[00:13:56] As you can see, there are so many things we could talk about here regarding how we use our inside and outside environments each day and the design could either be a good fit or a poor fit for people. Knowing that we need other people in our lives for help doing everyday tasks or just for socialization is something that we are all wrestling within this age of COVID, whether there is a disability or not.
[00:14:21] This pandemic has brought about a lot of changes in our lives for the good and the bad. I’m not going to sugar coat it because it has been really difficult, but I am really curious to see how things will evolve and how the creativity of all of us will help make positive changes in the midst of the hard.
[00:14:39] Can this be a turning point in how we look at our homes and the importance they have in our daily lives? I’m excited to see how that plays out across our country and within our organization to make sure there are more functional homes for people to choose from that ultimately increases their quality of life.
Leave a Reply