4th Livable Design Summit: Health + Wellbeing Transforming the Home
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Hello, everybody. We are really pleased to be here today. My name is Gustavo Serafini. I'm going to be the moderator for the Home Smart Home roundtable discussion. I have a brilliant panel with us today. Most of us have been in the film. Kimberly Warner was the director in the film, and I would like to take a brief moment. Let's just go around and introduce ourselves. I'll go ahead and get it started. My name is Gustavo Serafini. I am the co founder of Pure Audio Video, which is a smart home integration company down in South Florida. And I am also the host of the Enabled Disabled podcast. I am here as a universal design expert and smart home specialist. We all have the Livable background on our screens, so it's different shades of purple with the Livable logo that's like a house in different colors. I am a middle aged Latin American male and I have olive skin. My hair is Brown and it's comb to the front. And I am wearing a Navy blue Polo shirt. So let's continue. Kyle, can you please introduce yourself and tell us a little bit about you?
Yes, sir. My name is Kyle Kronick. I am 31 years old. I am a full time student at Colorado State University Global. I am also a panelist on Unfixed Media Ms Confidential. And I've been living with this progressive disability multiple sclerosis for almost eleven years now. And it's progressive in nature. So it's always changing the needs of my house and how I need to adapt. My house is very old, so I got a lot of ideas or desires.
Thank you. Shelley, can you go next?
Yes, of course. Hi, I'm Shelley Rosenberg. I'm an interior designer in Dallas, Texas. I am a middle aged white woman with Sandy Brown hair and glasses. I'm really excited to be here because I specialize in adapting design in homes and businesses for people that have disability and live with disability. And just super excited to be here and share new ideas with you all and everyone watching today.
Thank you, Shelley. We're really happy that you're here with us, Bethany.
Happy to. My name is Bethany Cook and I'm in my early 30s, currently a master's student studying counseling and psychology and located in the Seattle area. So I am a white woman with short Brown hair that is curly. And actually, I'll describe my background as well, since I don't have the Livable background up behind me here. I've got a window on my left hand side, part of a window concrete wall and sheet rock behind me, kind of painted an off white color and then slightly somewhat of a poster that you can see there of Seattle as that's where I'm currently living. And I am living with narcolepsy type one, which means narcolepsy with cataplexy. And that's a sudden loss of muscle weakness included in that diagnosis as well. And I have been involved with Unfixed since the very beginning and OG, as we like to say. So great to be here.
Thank you so much. Bethany Kim.
My name is Kimberly Warner, and I am the founder and director of Unfixed Media, and I am a Caucasian woman, 47 years old. I have blonde hair, and I'm wearing glasses and a red zip up shirt and the sleeves kind of blend into the Livable Design Summit background. So it looks like they don't have arms right now. And I live with Maldives Debarcament Syndrome. I've had it for about six years and was diagnosed about four years ago. And that is a neurological disorder that leaves me with a sensation of constantly being on a boat. I am really looking forward to this conversation.
Fantastic. Thank you so much. So the first question that I have and anybody can jump in, and if we're a little shy, I'll pick somebody. After being in this movie or having seen this movie that Kim did for the Home Smart Home, do you have any additional thoughts as to what you would like to see in a home or how this project has made you maybe shift your thinking as to what could be possible?
I'll jump in.
Okay.
I had the great fortune to hear how many are there? There were nine subjects in this film, and so I was blown away when I started receiving their submissions, their videos, talking about how their homes are challenging for them and imagining what could change. I truly did not think deeply about this until I started to receive everyone's thoughts. And what really stood out for me is the neurological impact of a space and the mobility and the spaciousness and how we move around and the flow. That was something that I had kind of been introduced to before, but not as much the sounds, the smells, the sights, the lighting, the acoustics that really struck me as something that even if you're not neurologically challenged, those can aggravate anybody. And they're probably almost on a subtle level. So it just has gotten me to really consider how lighting, especially, is being used in my home.
If I may jump on that. I was so deeply moved by this film. Everyone needs to see it. I want all of my friends and family to see it. I learned so much, and it made me feel like we are sympathetico and possibly soul mates. I just have so much to learn from you all. I have three children that have various disability. My middle one is autistic, and my little one has down syndrome. And a lot of the work I've done is with families with small children and children that cannot verbalize the challenges that they are facing or the struggles that they have daily. And I think this film opened my eyes to the fact that I have this incredible community of people with disability that are older and can articulate what they need and just can teach me so much. It's really exciting for me to start to learn what the disability community needs, the breadth of those needs, and then to help translate that to other designers and architects so that our industry that has so much power to help can really understand why we need to do it and what it is that we can do and how we can start.
That's terrific, Shelley.
Yeah. I love just being a part of this concept. Before I was diagnosed with multiple sclerosis, I didn't know anybody with a physical disability, so this wasn't anything I even considered. And even when I was first diagnosed, I was minimally impaired. So I did not have anything really in my way. But, yeah, as I was saying, as I have progressed and after working with Kimberly on this video, I have noticed a few things. Kimberly, you just say and talking about the lighting, another thing I had never even considered, and I've kind of just adapted and learned how to navigate in the dark, which is not safe. I need ample lighting, and I do a lot of wall walking if I don't have a mobility aid, like a cane or a Walker close to me. I was thinking of trying to incorporate some kind of something into architectural design for wall walking, but I was thinking what came to mind was like rock climbing, people that have the things to grab onto. That was just something that came to mind for me.
I love that I have to jump in really quick because, Kyle, when you talked about that in your video, you said I would love to have grab bars all over the place or something that acts as grab bars, which I love that you added that because it doesn't have to look like grab bars. I mean, it could be this cool design or rock climbing wall that is like super awesome, right?
Yeah.
Would you want to use that in the hallways that were more narrow where the mobility device is difficult, or is this something that if you prefer to walk in that way as a form of exercise or it just feels better. So is that something that you'd like to see everywhere or just in certain places?
My house is pretty old, so the hallways and everything is already pretty narrow, but I would like to see that kind of everywhere. I think that would be very effective because I do kind of use my narrow hallways or my kitchen supernarrow. I use that to my advantage for, like, physical therapy and stuff. So, yeah, I could go both ways.
I really enjoy listening to these ideas because I consider designers and architects undiscovered allies to the disability community. And I think one of the reasons interior designers, architects and a lot of our clients that maybe don't have a disability yet, as we know we all will at some point in our lives. A lot of people think that the remedy to this has to look institutional or hospital like it might be embarrassing to our friends. It might be sort of we're showing people that we're weak or that we have issues or challenges. And so there's this mind shift, I think, that needs to take place that these adaptations we might make to our environment is an empowering, beautiful, cool thing that gives us just more confidence and makes things better for everyone that visits and for us. And it doesn't have to be this sad, confronting, emotionally perplexing conversation. It can be super empowering. And I think not only can we now start to prove how much better it is for just people's mental health, but also on interior design and architects side of things. There's just so much more integrity and expertise that they could share with their clients.
There's additional equipment and things that they may not know about yet that they can easily provide for their clients. I just think this is such an important conversation to have. These things shouldn't be that difficult. It's about creativity. And I applaud you with your ideas about the rock climbing walls or something to hang onto because it's a great idea and it's a fun idea. And you're right, it doesn't have to look like hospital grab bars or something like that. It can be super cool.
Yeah, I think so too.
I love that. Shelley, as you were talking, I was thinking about you saying mutual benefit to these things for me. One thing that Kyle also mentioned, lighting. So lighting is really critical. With narcolepsy of, for example, the apartment I'm currently in, my overhead lighting is really limited, and being in a Pacific Northwest environment, it gets dark in the winter pretty early, and so lack of lighting can make me sleepier and cause narcolepsy attacks to occur more frequently before I actually need to go to bed. But although that's my specific reason for wanting additional lighting in a room when it gets darker, I think. Kyle, you also mentioned additional lighting would be helpful for navigation, and additional lighting is just beneficial in general for people to help us keep our sleep wake cycles going properly. I'm just on the side of things of needing that to the extreme to where I'm perhaps noticing it more than someone else that has a better sleep wake cycle. But I love that idea of mutual benefit to these design enhancements. Sure, maybe it's stemming from someone who's saying, hey, this is a specific need for me, but that doesn't mean that in general, all consumers can benefit from it.
That's so right.
I'm so sorry. When I work with families, usually I'm drawn in by the one person that has a disability, but every single time the entire family benefits. Because most of the things that we all need when we're struggling with a disability or a challenge often is just the basic support that all human beings need. As far as lighting goes, not only do we need to think about the amount of lighting, but also what temperature that lighting is where you are, and it can be dark and cold for long periods of time. There are complicated circadian lighting systems that are really cool to put in. But just a very basic thing you can start with is going on Amazon or to your local grocery store and just finding a full spectrum bulb that mimics daylight just to give you that extra boost. And there's just so many things we can do like that that are sensory oriented. Sensory design is something I'm extremely interested in just because I think all people there's a spectrum of preferences. I love blackout curtains in my bedroom that's not necessarily for any disability, but that is a preference. And all of us have noises and smells and lighting and patterning and different things around us in our environment every day, all day that a portion of us can really sort of drown out, but a lot of people can't as well.
And so there are a lot of subtle aggravations. I think that over time can really damage our health and well being if we're not looking at some of those things. So, yeah, these conversations are super important.
I know that there's been several studies, and I'll pull them up for when we do our Q and A with Livable, but there's been plenty of studies on the effects of sound pollution in a living space just for everybody. It adds anxiety. It's gotten us so bad, like in certain areas of New York or really busy Metropolitan cities where people can develop heart conditions later on in life because of all the extra anxiety that our brains are constantly trying to process out. So it's a hugely important thing for everybody to have quieter environments where even if it's not every room in the house, at least have some place in your home or apartment where you can have that piece and you can have that quiet and get away from all of the noise.
The singular community, Shelley, I like how you called it the subtle aggravations that kind of accumulate and kind of like what you were talking. Bethany, there are so many different people that benefit from let's talk about lighting. For the vestibular community, we rely on our eyes to help our equilibrium. So the darker it gets, the more of the grabbing onto the walls that starts to happen. That said, there is a specification, though, where some people, especially the vestigular migraine community, they are really triggered by LEDs. So there's that flicker. If you ever have done a slow motion video with your phone and an Led light is in the room, you play that back and you'll see this, like, really visible flicker. And for some people, they're actually that's a subtle aggravation, and they're registering that flicker in the Led. And so one of my friends had to replace all the LEDs in her house and just go back to the good old fashioned tungsten. And it really has helped her a lot. So I've been more mindful of that since the filming because I know that we have some LEDs in the house, too. And the screen that we look at, the screen that we're looking at right now in our computer has a refresh rate that is really high, and those little things can add up by the end of the day.
I think you're muted. Do you know if all LEDs have that same flicker, or if, like you said, the full spectrum lighting ones maybe avoid that because they are programmed differently.
Leds definitely can flicker, as can fluorescence, which is what we find, unfortunately, in schools with children, with all different kinds of conditions thrown together under fluorescent lighting, that can be very irritating. Leds are getting better. There are now warmer LEDs. They're really working on the temperature and taking it from that sort of irritating blue light to a much warmer temperature in Led lighting, there's still a long way to go. I know for the environment, the LEDs last longer, and they have a lot of benefits. But the transition has been hard for people who are very sensitive to light. So that's definitely something I'm looking into and sort of looking at as a designer using more experts. I think a lot of designers tend to be lone Wolves, and we think we know everything. But as I'm realizing when I go in to work with someone with a disability, pulling in a lighting specialist or another specialist with kitchen design or other things are giving me new ways to translate solutions for the people I'm working with that I might not know. I think with what you do, Gustavo, you could help me a lot, probably with sound, with dampening sound, with acoustics, with creating opportunities for sound that helps us relax.
I know one thing I learned in my study of Biophilia, which is sort of bringing natural elements into your home that can help you relax and maybe drown out the noise pollution you were just discussing is that birdsong actually is the most relaxing noise that we could program on our sound machines. I love to listen to the ocean, but bird song goes way back in our DNA. When the birds are singing, usually things are calm and copacetic, and I just thought that was an interesting thing to learn.
I love that.
That makes me really think about. So sound for me is something that I struggle with immensely. Because when your plate break cycle is all over the place and you are trying to maintain some semblance of here's when I go to bed, even if going to sleep is going to be disrupted, if I have sound coming in on top of that. So right now I live in an apartment. If I can hear my neighbors or we're close to a freeway, if I can hear a truck blaring their Horn at night. Sound is really critical to an already fractured sleep becoming more fractured. Not to mention, obviously, anyone else might be woken up by the garbage truck at three in the morning that they can hear outside the window. Yeah. I think that kind of goes back to that mutual benefit and also just connecting over the sound machine. I have one as well. It would be really refreshing if it wasn't something where we had to. As someone who lives here, I have to bring in my sound machine and I have to turn it up on high and I've got my fan going and I've got the doors closed and I've got as much sound improvement or prevention as possible.
But if that was something that was already built in to where I didn't have to fight so hard against that, that would be such a refreshing way to live.
That's super important, I think, for city planners, developers, architects, builders to know. I think they don't know what they don't know.
Right.
So usually people are looking at the bottom line, what are things cost? And they're always trying to trim costs. I think it's an important conversation to start to let them know that the disability community is I think it's the largest minority in the world, and not only the disability community, but everybody benefits from less aggravations, including the noise pollution. And if you design these, say, thicker walls or better insulation from the beginning, I think that it's not cost prohibitive. The cost is very minimal. And there is a way to market that to let people know. All people know that we are a more sensitive company. We're more conscious. We have really looked into bettering our HVAC systems to be cleaner air. We've done a system to make sure that our water is maybe just above what the typical city quality would be. Our walls are a little bit thicker. I can't imagine that all people wouldn't be excited and drawn to a building that is more conscious. And I feel like there is a way, if people are money motivated, that's one of the sort of not a self pressure, but I really want to be able to get to the people that say, Gee, we'd really love to design better for the disability community.
It's the right thing to do. We see that, but it's just not possible. We're in the real world and it's all about cost. I think that has to go. That's an antiquated way to look at the world. And like you said, we all benefit. So, yeah, keeping these discussions, and even if somehow we have to get data and research to show them that putting a little bit more money in up front does have a bigger ROI, then let's start looking at those kinds of studies and sharing them as much as we can.
100%. I think there's two really interesting questions from here, and Bethany and Kyle, you both mentioned that you're in graduate school. So how is the school environment for you? Have they done anything with the building designs to make them more accessible, more friendly? Is the lighting good? What has that experience been like so far?
Luckily for me, I am doing Colorado State University Global is there online portion. So I am comfortable in my home, as comfortable as I can be. But these modifications would help my school day.
Definitely. So I do go into a building. It's a nontraditional school building, actually. So that's not to say I don't still have struggles. I think when it comes to living with a disability, part of that process is constantly having to advocate yourself every time you enter into a new space and environment and system. So I will say that it's been kind of a mixed bag, something that Shelley, I think it was you that mentioned fluorescence being a problem in schools. That is, to this day, one of the things I still don't understand why fluorescence are so common in classrooms in an environment where for me in particular, that is immensely triggering for my narcolepsy. They trigger my narcolepsy attacks. So often classrooms are fluorescent lights and little windows. So in my current school, we do have more windows than the norm of what I was used to. Maybe in my undergrad where there were absolutely no windows in most of my classrooms. But that's not to say it's not still a struggle. So it's been kind of a mixed bag of trying to investigate. Okay, well, they're not going to change out all the light bulbs.
So how can I instead advocate for myself to maybe have a standing desk in the back of the classroom? And even in that, I think that question of money constantly comes up. So it's been kind of a mixed bag. But lighting is definitely one that hasn't been the worst school environment I've been in. But I think with any classroom setting, those fluorescence will always be triggering.
For me.
In particular, I just wanted I'm curious, how do you advocate for yourself?
Is it a one on one conversation with the professor or what's some of the ways that you've done that?
Yeah, I think I've really had to learn how to advocate better for myself. I was diagnosed in undergrad about eleven years ago, and I was the undergrad student who didn't advocate for myself at all. I think I was unsure of how to go about that. So now being back in school, I feel a lot more empowered of how to ask for what I need. So my school does have a system set up where they have an accommodations coordinator that we can meet with, one on one that develops plans alongside with us. So that's fundamentally helpful to tap into that resource. But for me personally, I think my advocating for myself is also talking to my professors. My disability is going to show up in the classroom and it often looks like me falling asleep, which can lead to professors having stigmas around. Is this a studious person? Is this person putting in an effort that they should be question marks around things like that? So something that I do to advocate for myself is have a conversation with every professor that I have and say.
This is my disability.
This is how it's going to show up. And here's the ways that you can help me and or I can help myself that I'm letting you know ahead of time are going to happen. So not questions as far as can I do these things in the classroom for myself? But more statements of these are the things I will be doing for myself in the classroom because of my disability. I'm lucky to be going to a school that I have not had any professors push against that at all. But I think it's been important for me to be able to verbalize more often. This is what I'm doing, not this is what I need. Can you provide it? So really having that empowerment more amazing.
It's really good.
The one thing that made me feel frustrated and a little bit sad when you were talking about your experience is that you would have to go to a professor or to a school and say, I have an issue and I need a change. And the changes that they'd most likely give you might separate you from the rest of the group. So then your experience is better, but then it's not the same as every other grad student there, right? So just like when a commercial building has an elevator or ramp, but it's around the side or the back of the building. So the person that has a mobility challenger is in a wheelchair doesn't get that same experience going through the Grand Hall or the entry that was created for everybody else. I don't have all the answers to that. But my dream is really that the more we start talking about universally designed buildings that are better for everyone, those fluorescent lights aren't any better. Well, they might be a little less damaging to the professor, but everyone right can benefit from upgrading the lighting, getting more natural light, et cetera. So the whole concept to push universal design principles is kind of like we keep saying that if this was done correctly beforehand, we wouldn't have to have so many individual accommodations.
Now. Maybe we didn't know before, but we know more now and we're always learning. And so if universal design principles were upfront within my industry, I do think that we could start getting that ball rolling because David and I talked about getting a snowball going. And just the more we can talk about why this matters, the better.
You keep saying talking about the cost and how it constantly boils down to cost. If builders would just have the foresight to see that doing it up front. You're right, it would cost less in the long term. And right now is the time for these conversations. I think so many things are changing in the world. This obviously needs to change. Simple modifications.
100%. I couldn't agree more. That's a big reason why we're here, but for people, for the design community, for the architects that don't know what universal design is right now, like Shelley, how did you start to learn about it? Where did you get exposed to the ideas? How did you Hunt down that information? You're clearly like a very naturally curious person, and you had the need. So you wanted to improve your family's life, and then you wanted to start improving the lives of other families. But where did you go to learn these things to get exposed to it?
I knew through just raising my three kids here, 23, 29, that I just was constantly modifying my environment. And then I had all of my family, friends or families that have kids with disability as well. And one of my best friend's daughter is in a wheelchair. So I just started looking at how I could help my friends, other mothers that I was coming into contact with that said I really need help, and then trying to help them, I had to learn about mobility issues. And then to learn about that, I was kind of started looking into Ada, the American Disabilities Act. I was really shocked, actually, to realize that most of the laws that are supposed to protect people with disabilities have not been around very long. Just in the late 90s, these bills were signed. So gosh. We have such a long way to go. And then through just studying Ada and the history of the people that pushed for that, realizing that the world. There are several organizations that are global that put together the principles of universal design and kind of just looking at the really big picture on what all human beings need, sort of like Maslow's hierarchy of needs.
But as far as from a design or architecture perspective, what do human beings need and what do we deserve in our built environment? And I thought they were fascinating because they talk a lot about equity and dignity and personal fit and experience and things that are less tangible than what we discussed. As far as whether someone in a wheelchair can get in or out of a building, there's so many layers that's just really the tip of the iceberg. And I think universal design principles are a good way to start. One example of a really well designed building that I read about is the Guggenheim. If you think about this spiraled building with ramps, whether you have a child in a stroller, whether you are pregnant with triplets, if you have a Walker because you're elderly or you have vestibular perprioceptive balance issues, more people can enjoy the Guggenheim and move around freely. It wouldn't be great if more buildings really had that foresight, that we are going to support the most people in the best way all the time.
And it can be beautiful. As you said in the beginning, Shelley, it reminds me of Brian, one of the gentlemen in the film. He was a photographer for his career, traveled all over the world, and then had a traumatic brain injury. And he is in a wheelchair now, and he really wanted his home to he said in the film, I said, I don't want my house to look like a wheelchair house. That was his thing. And so he hired an architect to create a ramp for the front door. But it was the cobblestone ramp. So actually, it was a stonemason that came and built this really beautiful entryway into his home that everybody gets to appreciate. And it just looks like this architectural addition to his home. And like you said, it's a piece of dignity. He had a career that was full of the aesthetic and how things are supposed to look. And he didn't want to lose that with his disability.
And he didn't, which is beautiful.
Yes, his house is gorgeous. From what I could see.
That sounds like a badass edition.
Yeah, it really was. I think the thing he struggled with and maybe something we should address, too, is smart technology. Like you said, Kyle, this is the time. And now we have all of this technology kind of colliding with design. And one of the things that both Elizabeth and Brian addressed because of their vocal issues, struggles with being able to communicate clearly because of the strength of their vocal cords, a lot of the smart technology doesn't recognize their voices. And so going back to the simplicity of being able to pick up the phone and call somebody is really challenging when Siri doesn't recognize your voice. So that's something that also my eyes really opened to trying to understand these real basic struggles. Even with very advanced technology, it doesn't access everybody.
Still, voice control is definitely improving, but it still has a long way to go. There are some interesting technologies around tracking the eyes, gestures, haptic, feedback, where you can just move your hand in a certain direction and it can trigger a command. Again, these are things that are being developed. They haven't really made their way into the mass market yet, but they're getting there. And voice control, that can be tricky. Just like there's not really great voice control. The system we work with, they haven't developed it for non English languages yet. So there's a lot of work to still be done.
Absolutely. My son, it was a really fun day when my son finally realized that Siri could understand him. He has down syndrome, and he has a really hard time with articulation. And so trying to get Alexa or Siri to do what he wanted to do, it's taken him almost full ten years to be able to articulate easy enough. And Gustavo, I know you told me that there's some new technologies coming. I feel like I'm impatient. They're not coming fast enough. Maybe what we need to do is just the more we talk about this, then the more interest people with this capital can start to put into these technologies. But I think it's up to us as a community to really drive that interest so that the money will follow and they realize that there's a huge market for this. I did a show house recently in Dallas called the Kip Spay Decorator Show House, and I'm the first one in the 48 year history to do a space that is what I consider adaptive design. Because of architectural constraints, I couldn't do fully Ada compliant, but over and above, just the bathroom being usable for someone in a wheelchair.
What was really exciting to me was this smart home technology. And the muse that I used to build this space is actually a real little girl in my life with Rett syndrome. She is nonverbal and she speaks through a Retinal device. And so there were some systems that I was able to find where through her Toby or her Augmentative device, she could use her eyes, theoretically, to open and close her window shades, to turn on and off her music, to turn on her shower and adjust the temperature. There were several different businesses and sponsors like the Shade Store and Color that helped me with this. And it was super exciting to share this with the 12,000 people that came through this decorator show house that you could have a person with disability, be autonomous, and have independence in a beautiful room outfitted with gorgeous grab bars and decorated to the hilt. But they also really supported her emotionally and intellectually to be able to do what she wanted to do without having necessarily a caregiver do it for her. That's really exciting.
You mentioned Maslow's hierarchy of needs. It sounds like we need to develop a hierarchy of needs for livable design.
Let's do it. Great idea. Let's add on to the universal design principles. Any feedback that you could give the community that I could share would be truly valuable.
I love that idea.
Absolutely. I know that I've thought a lot in the last year about universal design, and we've spoken many times about this. Shelley, the cost thing is so interesting because if we stop for just take a step back for a moment and kind of see the forest instead of the trees, I think that we get lost in the trees so easily. If we take a step back and we say, are all the buildings and all the homes that we are creating, obviously maximizing profit. Okay, that's important. But are we really doing the bare minimum with all of these buildings and all of these homes? We're trying to make them better. We're trying to make them more aesthetically pleasing. We're putting money into these buildings and into these homes to improve them, to make them more resellable, or because somebody wants a fancy theater, which we do, it's great. But why aren't we cost isn't the option or the obstacle there? Why aren't we raising the bar for all of these other needs that we all have? What about aging in place as we get older? Don't we still want our independence in our homes? Do we want our grandparents?
Do we want our mothers and fathers to go to an assisted living facility if they don't have to? I'm hoping that it's just about opening minds and hearts to realizing this stuff is out there already. It's getting better. Why aren't we doing it?
Well, some of it, I think, is just marketing. It's a mind shift. I talked to an architect recently who wants to be a leader in her architectural community. Her tagline is we help people stay in homes they love longer. And we were talking about how much people as they age have resisted retirement and how we know scientifically that retirement can precipitate people's health starting to decline and why more people want to work longer. So if we don't want to retire, why would we want to retire our homes? You work your whole life to build wealth or at least stability and have this beautiful home that you love. But if you're not thinking about how to protect your home as you are, your retirement plan. We have financial planners that help us plan for retirement. But we don't have people really talking about how to make sure you don't have to retire your own house and move out of it and end up in an assisted living facility or a nursing home. So just maybe talking about it more letting people know that just as you want to lengthen your life, you want to also lengthen the opportunity to stay in a place that feels good to you and it supports your health the best.
So, yeah, conversations like this, I think, start to lead the way to, like, let's really think about what works for most people and what is the better return on investment long term.
Yeah. And you're talking about just older people wanting to extend the time in their home. Living independently is something that, with my progressive disability, is a huge concern. I'm only 31 years old, and it terrifies me to think that I could not live on my own. And yeah, it's not just the old people. I'm only 31. I got a long way to go before I'm an old person. I need to figure out what to do in the case that it does continue to progress drastically. I could never have predicted my disease to progress this much in my entire life. So it's certainly something I got to consider. And the younger people, too.
Kyle, I want to know one of the things that I know you emphasize a lot is the workouts and the physical therapy that you are constantly doing to try to keep some of that muscle tone working and the synapses firing. Can you, like, imagine aside, we have the rock climbing walls, but can you imagine a home that would even facilitate that even more? So that your mission.
What would that look like?
That would be so cool. I don't know. Like you said, I have all these videos, but I'm wanting to set my space up differently to be more conducive to that. So it can be like I've got an adjustable standing desk, which is great. It's part of my physical therapy, honestly, so that I'm not doing the whole school day, not just at my desk. I can adjust it to stand up. So, oh, my gosh, it would be so great to have an entire house that was conducive to my lifestyle of health and wellness.
Yeah. Like your house becomes your gymnasiumphysicaltherapy space.
Yeah. I mean, it kind of already is since I got stairs that have to go up and down every day, which is ridiculous in my physical state.
Yeah. Those are some sketchy stairs, as you call them in the video.
Yeah, I fell down those stairs and broke a bunch of ribs. That does not need to be happening.
You're right. There are a lot of people that study falls and how much they cost taxpayers, et cetera. And again, I hate to always bring it back to money, but for whatever reason, when I talk with anybody, that's part of big business or legislation, it feels like that's always what they bring up. And so I'm frustrated with that. But I feel like we have to meet them where they are, too. And so there are so many ways, even if we say, look, falls cost our country X amount per year. And if we could do better to force insurance companies to pay for more durable medical equipment and for home modifications for people that need it, like you, then we're going to save overall, so much money to empower these people and to keep them safe saves us over time. It is a complicated situation, but with Covet, it was exciting to see that more people are starting to really look at what a home environment does for us. And home gyms are on the rise, and this might be more in the luxury sector, but people are really starting to think about, okay, well, we're spending a lot of time indoors, and now a lot of us are working at home.
Let's look at how we can create a home that can give us more physical support. As far as exercise, yoga rooms, the meditation rooms, the sensory rooms, there are lots of cool niches, if you will, that are coming up. If designers and builders were interested in that, I think there's going to be a swell of demand for rooms that are not only physically supportive, but also emotionally supportive within the home.
Again, I think now is the time. I think there's such a trend, an upward trend in health and wellness and what people are considering. So, yeah, now is our time.
Shelley, have you seen okay.
So what about if we're talking about our homes enhancing and making us even healthier so we can age in place and we don't have to go to these homes that are filled with bad food and minimal exercise and bad lighting? What about with our Smartwatches that was somehow paired to some of the smart home technology so that let's say we were having a stressful day, we're on our way home. Our Smartwatch tells our smart home device that we're having a stressful day and already dims the lights and puts the bird song in, or if it can register before we even know that our cortisol is starting to go up and our sympathetic nervous system is activated. What if it becomes a place that actually can calm us down before we even know that we're starting to get amped up? Is that the good news?
Well, it sounds a little Jetsons to me, but you know what? A lot of things on Jetsons have come to fruition. Parts of those technologies do exist. Again, a lot of them are super expensive right now. But for example, you can put in a circadian lighting system and knowing that certain parts of the day are more difficult or like if you have narcolepsy and you know that you need lighting to be strong for the late afternoon and not get dark until later, you can put some systems in and pre program them. But again, you have to kind of know that overall, these are the times when I'm stressed and this is the time where I'd want to decompress and so you can well, I'm trying to think just off the top of my head of a really inexpensive example maybe like putting your lamps on a timer just to kind of help you. But again, these things are sort of preconceived by you and then set by you. The only technology that I've heard of thus far that can sort of read your vitals and then respond. There is a company called Level Up Your Home.
I just talked to the CEO, Jim Mallette, and she asked me if I had any clients that had seizures, and I said yes, absolutely. I have friends whose kids have seizures and they're not sleeping either because they're afraid to leave their children home, excuse me, in their bedrooms at night because they're scared that if they start to seize, they won't be right there and they won't know. She has a mattress pad that she was telling me about that can go onto the bed and can read vitals of someone sleeping on the mattress pad. And if they do show signs of starting to seize, then the parent is alerted. I don't know the details on that but that too kind of sounds Jetsons, but super exciting and important so that everybody can kind of relax and have their own space. But if something's happening, they get that information right away. And I know my father in law has an Apple Watch. If he starts to fall, there's a velocity that can be measured, and then his caregiver is alerted on her iPhone that he possibly has fallen. So, I mean, these things are kind of creeping up technology.
Is there?
Yeah, I think it's possible, yes. I think it's really getting there. Have you seen some technologies like this?
Not yet. So the constraints that we run into, even at the very high end, is that a lot of these technology companies don't like to play nice with each other. So you can have an Apple Watch and you can have another home automation system that isn't from Apple, that Apple doesn't want to share that data and that technology and open it up to those other companies. So integrating becomes a real problem unless you are committed to being in a fully Apple ecosystem or a fully Amazon ecosystem. And then, of course, as we all know, there are Privacy issues. And a lot of these big companies who develop this great technology are not so responsible when it comes to what data they're sharing and what data they're reselling. And there are some concerns there, especially when you get into the health space. Right. I don't want Amazon knowing all of that. This is just a personal choice. I don't want Amazon to know that about me. And so as the technology develops, I think that there will be smaller companies like this mattress company that we can feel safer.
We pick up the phone.
We can talk to somebody. We can know where they stand, and that's going to improve over time. The big technology companies, you have to be a little bit more careful with.
Yeah, that's really frustrating. And I can see where Privacy with data would be an issue. It's not fair, and I'm not a fatalist or anything like that. But I could see where if, say, Amazon or some big company had a lot of data about your health and how many times that fall sensor went off. And an insurance company might want to buy that data and use that to determine who they're going to insure. And yeah, unfortunately, that could be tricky. There's not a lot of super easy answers to those really big questions about how do we make this better globally? But we've got to start one step at a time. And there are technologies out there, like we said, just with buying full spectrum bulbs or buying better filters for your HVAC. There's lots of little things that we can do as self advocates and as allies to the disability community as designers, the more that I can teach other designers how to even start. Most designers, I don't think, even have considered that part of what they can offer their clients is better water or better air. Most designers are thinking about objects, right?
They're thinking about furnishings and aesthetics and maybe, ergonomics, maybe entry and exit from a bathroom, maybe Ada, but usually not better lighting. Unless it's about art. Right. So I think just expanding our knowledge of what interiors entails, just like with disability, I think there's so much that's invisible and because it's not visible, we're not sure it's there or we're not taught about these things. So just having this kind of a conversation is super important. I think, even though it seems simple and Disability 101, I don't know how many disabilities there are out there, but I'm sure a majority are probably invisible. Just to keep talking about this and letting people know that there's so much out there that we're not looking at or that we don't even know is there. But knowledge is the key. That's the power. Just knowing that this is a concern and just keeping at it, keep educating people. Not because we feel we have to, but because we want to empower them, to help empower us. I think it's a mutually beneficial thing and it should be symbiotic to empower each other, not something we're really asking for. It's like, let's do this together.
We're not asking for a handout, we're asking for you to help us empower ourselves so that we can give back to your community as well.
That's really powerful. I agree 100%. And what really drew me to Universal Design, having never heard about it until a year ago, sorry, a little longer than that is it gives you the framework to start having those conversations and to start opening up your mind as to what's possible so that whoever comes through, you have this incredibly broad and individualized framework that you can use to either say, I don't know how to do this, I'm going to go find out. But I know that much more is possible than what I think is possible, which is empowering because I was born with multiple physical disabilities as well. And my biggest struggle has been, I want to be seen, I want to be heard, I want the ability to contribute and give back just like everybody else. So why not make that better? Why is it always the individual that has to adapt to the environment? Let's turn that around a little bit.
I like that.
Yeah, absolutely.
Well, there's a simple mean that goes around on Instagram that always makes me smile and cringe at the same time. It's like if a plant is not doing well, we don't blame the plant. We put them in a new environment, we look at what factors are affecting them, what do they need more of? What do they need less of? Why are we not doing this for our humankind, for our brothers and sisters? It doesn't make any sense. So it's necessary to change that mindset and I know it's possible, and especially the people that are living with this, we do have a real opportunity to educate and teach others. We have a voice, so let's use it. Let's continue to talk about this and see what we can do as a group.
I have a new film goal after this conversation. Okay, let's write a grant to go down to Kyle's house. It needs to be remodeled anyway. Let's use the whole house as an example, an educational model. Make it the coolest thing ever. So, Kyle, you will never have to leave that home. You will be supported.
All of a sudden.
I'm like, this has to happen.
Would that not be amazing?
There are shows out there like this. In fact, one of my favorites, George To the Rescue, it's on NBC, and they have all of their episodes from the past ten years on YouTube. And they do exactly this. They go in and renovate, do home modification and share it with the world. Unfortunately, they've been on for ten years and they're not prime time. However, they just want an Emmy. So, like you're saying, this is the time. I think people are finally like, we're done with drama. We want feel good TV. We want to see people helping people. We want to pull together. We are tired of being separate and alone and scared about the world. We want to look for the helpers. Right? And we want to look for the good. And so I think it's absolutely possible to find a group that would be interested in sponsoring a remodel for you. So we should definitely look into that.
That would be so cool.
I was really encouraged the other day. I was on Amazon, and they had a category celebrating diversity with disability. And it was all these programs, documentaries, movies with people that have disabilities. So again, now is our time.
Well, there's not a single one of us that don't love someone dearly that has a disability. And again, we all will at some point in our lives, that's something that every single human being will experience. And so it doesn't make sense to pretend it doesn't exist. And I think, again, at first blush, people think it's something negative. It's scary, it's confronting if I get super involved with this person and that makes me look at my mortality. But actually, it sort of does the opposite. It's a very empowering thing that I've learned before I had my kids, and especially Ronan with down syndrome. I remember being at the grocery store and seeing an adult with intellectual disability bagging groceries and thinking, I don't know if I want to go through that line because I don't have to talk to them. And maybe it wasn't even that conscious, but there's just a little feeling of being uncomfortable. Of course, now that I know better and how much we can empower each other's lives, I go and seek out people and introduce myself and find out more about them. And it's just made my life so much more meaningful.
So I think just continuing to share these stories.
Yeah. We got to get rid of the stigma.
Yeah, absolutely. There's nothing scary about being human.
No.
And in your case.
Bethany, with the stigma, unfortunately, you kind of almost is on your shoulders to speak about it because people won't see it necessarily. Same with me. The onus is on us, actually, to start those conversations.
I think we're getting close to the time here where we have to wrap this up, and we will in a second. But the point about getting rid of the stigma around disability and people kind of feeling uncomfortable about their own mortality and what can happen to them, I know some really amazing people in the palliative care space. I know Kimberly does, too. And when you speak to them and they're helping people end of life or who have an illness and they're dying, they're helping them through that process. And you ask them, what have you learned about this? And I said what I've learned is it isn't even about death, it's about life. So they've flipped the script. The more we confront, the more we understand, the more we move towards, the more we can appreciate what being alive means and how we can all make our lives just a little bit better.
Absolutely.
Yeah. This is such an inspiring conversation. I hope that the Q and A. I think everyone else that's watching this is going to have a lot of questions, too. So I hope this conversation continues.
Absolutely. Is there anything that we've missed in this conversation that anybody would like to add before we sign off?
I think I just wanted to add something there on the end of what we were saying of the idea that we will all eventually have a disability when we get older, but also the idea that at any moment something can happen and you will have a disability that can change in an instant.
Yeah, that was mine. It happened overnight.
Yeah. And so if we were designing spaces that were already welcoming for that, not only would you have not have the life adjustment, but to have the home adjust in the midst of that process if it's already there, that would be beautiful. If we could already be saying your home is welcome for you, if you're able bodied, if you're not able bodied, if you're neurologically struggling like I do. So I just think that that can change at any moment. And often we take that for granted for sure.
It's a really good point.
So, yeah, we have to raise the bare minimum standard is the expectation of disability so as to not need an adjustment or a modification to the house.
Yeah, well, that's true. I will close with my final thought on what disability is. If you were in a completely 100% supportive space, would there even be a disability. The disability is experienced when someone is in an environment that doesn't support them and there's constant barriers. It feels more glaring if that makes sense.
Absolutely.
Yeah. Well, I'm proud to be on this panel with you all and thank you for letting me join. I feel so inspired and just ready to just keep pushing keep moving forward so I really am honored to be a part of this. Thanks, Gustavo.
Yeah. Thank you so much, Gustavo for pulling this together and thank you, everyone for sharing. I'm so inspired.
You're very welcome. Thank you all for being here. This is the start of this is the beginning, a new beginning getting for all of us and we really appreciate livable giving us this platform to be here and talk this through today. Thank you all so much.
Thank you so much.
Thank you. Bye.
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