We’re joined by Dan and Viola Dwyer, creators of The Ginchiest to talk about the personal side of receiving caregiving services, and how they see robotics playing a role in creating greater independence for the disability community (and everyone else).
On today’s show, we’re joined once again by Dan and Viola Dwyer, creators of the YouTube channel, The Ginchiest. We invited Dan and Viola back to discuss personal care and how they see robotics playing a role.
HALEY SCHAFFER, HOST: From KVMR and in partnership with FREED, this is Disability Rap.
VIOLA DWYER: For most people with disabilities, it is about survival a lot of the time. So, if we can just get our basic needs met, that’s “you’re thriving.” And I hate to say that because it shouldn’t be that way.
SCHAFFER: Today, a look at the personal care needs of people with disabilities and how robotics may play a role in future care.
VIOLA DWYER: I think there’s tremendous economic potential with somebody starting their own robotics company focused on personal care assistance. Because it doesn’t have to only serve the disabled community.
SCHAFFER: That's all coming up right here on Disability Rap. Stay tuned.
CARL SIGMOND, HOST: Welcome to Disability Rap. I’m Carl Sigmond, and before we introduce our topic and our guests, I want to welcome Haley Schaffer to the show. Haley is FREED’s new Disability Community Advocate. Today, I just want to welcome Haley to co-hosting Disability Rap with me.
SCHAFFER: Thank you, Carl
SIGMOND: Well, today we wanted to focus on a topic that we’ve touched on before here on Disability Rap. We’ve covered personal care on the show before, but we really looked at it from a policy level. Today, we want to change that up.
SCHAFFER: And we're joined once again by Dan and Viola Dwyer co-creators of the YouTube channel the ginchiest. We've had Dan and viola on disability rap before to talk about their relationship and then another show talking about Transportation challenges and opportunities for people with disabilities. You can go to our website at disabilityrap.org to listen to those shows or to read the transcripts but today we've invited Dan and Viola back to discuss personal care and how they see robotics playing a role.
SIGMOND: Viola and Dan, Welcome back to Disability Rap. It’s great to have you. I want to begin by just asking you to briefly describe the kind of assistance both of you need throughout the day.
VIOLA DWYER: The type of assistance that both of us need is I think you can generalize it as personal care assistance so things such as transferring from a wheelchair to a toilet or a commode chair or a shower chair dressing getting clothes on in the morning meal prep throughout the day or even just meal planning assistance with maintenance of what we're dealing maintenance of a of a space so cleaning organizing putting things back where they need to go again. Dan and I try to keep it really organized household so that's what we needed assistance with
SIGMOND: Great, and on your YouTube channel, you are very open about the type of assistance you both need and the people who provide that assistance. Can you just take us back a bit? Now, you are living on your own, but that was not always the case.
VIOLA DWYER: Yes so it's essentially both Dan and I were living with our respective parents before we got married and there was a reason to that because a lot of people don't recognize that when you have a personal care assistant or really a team if you need care you know seven days a week 365 days a year those are employees and they you essentially have to create a team that will work with you in order to make independent living a possibility. So, we weren't there yet before we got married so our parents were essentially those people they provided for us beyond what I think an average child would need at our age. We were already young adults you know we really appreciated that time because I mean I think this sounds so harsh but it saved us a lot of money.
SCHAFFER: So from here we're going to be playing a clip from one of the videos you guys have up on your YouTube channel for "Let the robotic Revolution begin" just to kind of set the stage for our following questions.
VIOLA DWYER W/MUSIC: And I think that we don't talk about this enough in the disability community. It's an uncomfortable thing to think about like what are we gonna do when our parent or that main caregiver isn't going to be able to do it anymore? I mean I think about that constantly and I think that that's why Robotics are so important.
SCHAFFER: So there has been kind of a recent trend in social media where people break down kind of their like self-care routines and the things that they do to decompress and de-stress and all that kind of stuff and, normally when we talk about the things that disabled people do in their day-to-day lives it generally is only focused on the things you need to do to baseline survive like cook, clean, eat, shower, Etc. So I wanted to ask what self-care and hobbies look like to the both of you because that's not a question that's often asked.
VIOLA DWYER: Yeah no, I think that's a great question and I really appreciate even being asked because you're right and I think for most people with disabilities it is about survival a lot of the times. So, if we can just get our basic needs met that's you’re thriving and I hate to say that because it shouldn't be that way there I think that there should be a greater emphasis on quality of life and having more than just your baseline met but we're not there yet we don't have the systems in place nor the technology yet to address those and go beyond the baseline so for us I mean so I have to say I can't really report too much of what we do beyond our baseline now because we endure situations where we have gaps in our coverage in our care coverage and Dan and I have to do it ourselves and on those days we just do like Dan, you could talk more about how to take care of yourself because I think that for him he's able to do more than let's say I am on my own so I mean you could say like you can talk about your shower routine. You make a point to take a shower every day and he calls in his aqua therapy
DAN DWYER: So, yea Carl, I have a radio in the shower, and it helps to remember the past.
VIOLA REPEATING DAN: So, yea Carl, I have a radio in the shower, and it helps to remember the past.
DAN DWYER: By hearing old songs.
VIOLA REPEATING DAN: By hearing old songs.
DAN DWYER: Also I shower daily for my work as a model.
VIOLA repeating DAN: Also, I shower daily as my work as a model.
SCHAFFER: So, like you said like most of the time, due to the complications that come with receiving the kind of care that people like us need, you often don't really have time to do things that you may otherwise enjoy or to try out Hobbies or to kind of branch out from just the basics of survival. If assistive technology were to become more openly available and widely accessible, how do you think that would change the dynamic of all of that?
VIOLA DWYER: Well for instance I think a big topic that we don't talk enough about and that it greatly contributes to overall health is exercise is some sort of movement. I thought about this morning in preparation cause I was excited to join you guys and talk about this topic because I feel so- I feel so red! I love this topic and I just see technology like a robot a personal care robot being integral every day in getting someone with limited movement moving the body. You know I might offend some people but I believe it's meant to move. It needs to move. It's healthiest when it's moving and so you know me as a wheelchair user I, sit down the vast majority of the day I barely move and I know this affects my health but if I were to pay a physical therapist, which I do currently, and I meet only once a week with this person for one hour at a very, very high rate. You know I would go bankrupt if I went and did this every day but a robot you know they're not or what would mean to be good it wouldn't need to be given paid time off or sick days or any of that but I could move every day and the robot would assist me to move similar to what a physical therapist might do or even just you know a personal care assistant who comes in and does stretching for a client.
SIGMOND: And Dan, I have seen on some of your videos that you have a robot to help you eat. Can you talk about that?
DAN DWYER: Oh yea, I love the robot.
VIOLA REPEATING DAN: Oh yea, I love the robot.
DAN DWYER: we call her Obina.
VIOLA REPEATING DAN: We call her Obina.
DAN DWYER: I love it because it allows me to eat whenever I want to eat.
VIOLA REPEATING DAN: I love it because it allows me to eat whenever I want to eat.
DAN DWYER: and it allows Viola to go to work and gives me increased independence.
VIOLA REPEATING DAN: and it allows Viola to go to work and gives me increased independence.
SIGMOND: Awesome, and I want to talk a bit about the social implications of having robotic assistance help people with disabilities. On the one hand, like Dan says, it increases independence. On the other hand, it lacks the human nature of caregiving obviously, and we cannot discount how important that can be for people, especially people who are socially isolated. So, can you comment on all of that and tell me where you stand?
VIOLA DWYER: So much here Carl, so much. I am not at all worried about the lack of human interaction in my caregiving. I'm around people all the time and I'm okay with being alone and I'm not alone enough really and I think if somebody is really depending on someone for their care or people for their Care on a regular basis on a daily basis then they're very rarely alone. This would open up a whole new world for them to explore their autonomy their own selves. I mean to really and like to spend time alone that would be I think meaningful for those types of people but there are some people you're right that are already very isolated and let's say they can do a lot of their personal care so they don't require somebody to come in out of the house every day and they can get very isolated for to those people that I think but I would say I would counter with robotics being a help to those people as well because I've seen some robots that are now being used for people who have autism and struggle with social interactions and so robotics can help in that area as well if they're if that's you know an isolation or social avoidance is a part of what they're experiencing I think robotics could only help the situation I don't see it as a danger in any meanings and I think it would allow beyond independence. It would be like a Freedom revolution in the sense that suddenly what you never thought you could do you can do and that might even open up doors socially for people because then they could take their robots along and they can go out and do things because they wouldn't have to schedule you know with another person to do that.
Dan DWYER: I have something to add not every robot understands my voice
VIOLA REPEATING DAN: so he says, I have something to add not every robot understands my voice you're referring to the-
DAN DWYER: Siri and the Alexa’s and the Siri’s of the world.
VIOLA REPEATING DAN: The Alexa’s and Siri’s of the world yea.
VIOLA DWYER: Yea definitely there's room for improvement on a lot of these devices
SCHAFFER: Something that's really interesting about Ai and the way we're working on it is it's capable of learning. The goal here is to get it to a point where it is able to make these connections and improve upon itself.
VIOLA DWYER: It what's interesting though is that and I've asked this of the one CEO of a of a Lyft company is that technologists aren't focused on developing these type of technology and he had his own theory of why that is and I feel that that it mainly has to do with where the perceived money is. I think there's tremendous economic potential with somebody starting their own robotics company focused on personal care assistance because it doesn't have to only serve the disabled Community it could really be more Universal but people aren't working on this. you know what people are working on are gaming things and commercial purposes for Robotics and that's incredibly disappointing to me and I just think that there's so much potential that includes economic potential because if we can transform the assisted living nursing home industry, which is quite a lucrative one it's quite large, then that's a lot of money to transfer to.
SCHAFFER: And I feel like a lot of people don't understand with robotics when it comes to Personal Care on that aspect is the sheer amount of like unpaid domestic labor that goes into maintaining a household and the fact that it can help bridge that gap. Not only can It help the disabled community it can also help women who are traditionally more focused on the at-home aspect of things because that is traditionally considered their responsibility and, I feel like a lot of people overlook that a lot because it's just not talked about so it's not just the disabled community that can benefit from this it's tons of people.
VIOLA DWYER: Yeah hey, wait this is why I get so worked out nowadays so what I'm thinking of is that for this type of technology to go and breakthrough you think- Dan’s giving me a little pat because I get excited
is that they would focused I think the first thing would be just like we talked about is like a robot that can totally clean your house. We have an iRobot Vacuum but that's like you know what are you gonna do okay fine your floor is less dusty but we need a robot that would literally do your whole house as a human would. If we can develop that and sell it at a price that isn't astronomical like fifty thousand dollars for the Roomba then we're gonna get some. I mean people that is in a universal mood everyone needs to maintain a clean environment and if a robot can do that then we're starting to shift people's thinking about robotics as well as what it means to like how we spend our time because as you said I mean most of the time it's the woman of the house that would be doing that work and that's time spent that they could be doing something else.
SIGMOND: Well, we could talk about this topic for hours, but we need to wrap up. What is next for The Ginchiest?
VIOLA DWYER: They want to say that. yeah you said that yeah, oh gosh, we're making a really big change folks. We're going to be moving from our home and right outside of Philadelphia to a town or Greensboro North Carolina and, we're moving there for a number of reasons. Again we're trying to keep improving our quality of life and as we try to emphasize on our Channel as well we want people with disabilities to keep pushing for improving their quality of life. You know we want to keep talking about two main things robotics is one on our channel and also Universal Design in an actual physical space so commercial residential spaces that's a concept that you know again, gets pushed to the burner or the back burner or just not even acknowledged. Especially in residential spaces and that's just a big disappointment. So I'm trying to get more Awareness on those two things and grow our Channel.
SIGMOND: Well, we look forward to having you back on and hearing about your move and your new life in Greensboro. Thank you so much.
SCHAFFER: That was our interview with Dan and Viola Dwyer co-creators of the YouTube channel The Ginchiest and that does it for the show. Disability rap was produced and edited by Carl Sigmond and Courtney Williams is our production assistant. You can go to our website disabilityrap.org to listen to past shows, read transcripts, and subscribe to the disability rap podcast. You can also subscribe to our podcast by searching disability wrap on any of the major podcast platforms. We are brought to you by kvmr in partnership with freed and we're distributed by PRX the public radio exchange. I'm Haley Shafer with Carl Sigmond for another edition of Disability Rap.