Valentine’s Day 2024 with Dan and Viola Dwyer

[Music] 

LINDSEY WELLS, HOST: From KVMR and in partnership with FREED, this is Disability Rap. 

DAN DWYER: Pick your battles wisely. Always communicate. 

WELLS: Happy Valentine's Day. Dan and Viola Dwyer are back with more relationship advice. 

Viola Dwyer: It's hard to communicate. It seems like, oh, well, yes, I talk to people all day all the time. No, this is a different level of communication. This is truly a deep, honest, soulful communication. 

WELLS: That's all coming up on Disability Rap. Stay tuned. 

[Music] 

WELLS: Welcome to Disability Rap. I'm Lindsey Wells.

Today, we welcome back to Disability Rap Dan and Viola Dwyer. A couple of years ago on our Valentine's Day episode, they discussed their marriage and the common misconceptions about disabled people in relationships. When Dan was nine, he acquired a traumatic brain injury caused by a hit-and-run accident. Dan attended Widener Memorial School in Philadelphia with other children with disabilities. 

He then studied at Edinboro University, where he studied political science and pursued a career in government. Viola was born with spinal muscular atrophy, SMA, a genetic neuromuscular disease. She also attended Widener Memorial School in Philadelphia. Viola attended Johns Hopkins University, where she studied entrepreneurship and international relations, and pursued a career in financial services. After working in different roles in the financial services industry, Viola decided to return to school and earned an MBA from Duke University. 

Dan and Viola have a YouTube channel called The Ginchiest. They talk about their many experiences as people with disabilities. They want people to feel accepted for who they are as humans. Well, Dan and Viola, welcome back to Disability Rap. 

VIOLA DWYER: Thanks so much, Lindsey. Thank you. 

WELLS: First I wanted to ask you both about how you both have been and what you have been up to since you were on the show last. 

VIOLA DWYER: I have a full-time job in HR now, and been quite busy with that. We were looking to move to a different state, but we decided to put that on hold. We were wanting to do a custom home for ourselves build that from scratch, but quickly realized we can't quite afford it yet. We're kind of reevaluating things, but really enjoying our current space here in Pennsylvania. What else have we been doing there. We've been trying to keep-- We're posting new videos, but it's harder and harder with our time commitments. What else? 

WELLS: A cat. You have a cat. 

DAN DWYER: We have a cat now named Pippi. 

VIOLA DWYER: We've never owned it a pet before as a married couple. Well, I have never in my life, so it's really exciting and she brings us a lot of joy. 

WELLS: That's good to hear me. I'm deathly allergic to cats, but-- 

VIOLA DWYER: Oh, no. 

WELLS: I know. I'm glad you have Pippi and pets are a wonderful addition to the family. You mentioned a custom-made home that you wanted to move into. When that time does come for you to have custom-made home, or what kind of features did you want in your dream home, or have you thought of a design process that you're still hoping to manifest in the home? 

VIOLA DWYER: Yes, that's a great question. We are real big proponents of inclusive design previously, often referred to as universal design. There's a whole methodology and set of principles that are corresponding to that concept, and I think a lot of them would apply to our future home. Specifically, it would be one story. No stairs involved, 36-inch wide doorways or wider. 

Particularly in the bathrooms. It's so difficult nowadays, even in apartments to-- Though I think it's easier than before, but still quite challenging to find showers that are truly rolling where you could-- 

There's no barrier on the threshold from the floor into the shower stall. That is a huge one. We would love to have that fully be a rolling shower in our future home, sinks that have no cabinetry right below them, which is often the case in both the kitchens and the bathroom of an average home. The list goes on and on. I could tell you there's so many things. Yes, I think that those are the real big hotspots that we would probably need to have a home remodeled with because they just don't readily exist yet. 

WELLS: The roll in shower for me is a must. I can only imagine. We're recording this interview at the end of January, but it'll air on Valentine's Day, February 14th. Could I ask you if you have any special plans for Valentine's Day this year? 

VIOLA DWYER: Initially we were going to go get our teeth cleaned. Because we have-- What is it? Like every six-month visit, but Dan needs to change because he has work that day. What are we going to do, Dan, on Valentine's Day, typically? Go ahead. 

DAN DWYER: I want to listen to what you want to do.  

VIOLA DWYER: Nice one, he wants to listen to what I want to do on Valentine's Day. We usually, for most special occasions like that, we will figure out a nice meal to have. We're really into food and, try different foods. We'll probably do that and spend time with each other. 

DAN DWYER: Potentially watch a movie. 

WELLS: Nothing says romance like having your teeth cleaned. 

DAN DWYER: [laughs] 

WELLS: You've said in the past that you're very affectionate towards each other. On one of our last episodes with you both, you mentioned that, "We don't see a lot of representation of people with disabilities being affectionate with each other in the pop culture or social media." How do you think your lives and YouTube channel moves the needle in society and have you-- And how people view people with disabilities and relationships, and what more needs to be done there? 

VIOLA DWYER: Well, I'm hoping that our channel does a couple things. One being what you touched on, and that is we're showing the world, giving them a very intimate glimpse inside of it and our relationship. I think simply by doing just that, it normalizes this relationship, it makes people more comfortable with it actually existing, because people are seeing it. Some people may just be intrigued because they've never seen two disabled people in a relationship before in their life. Others may have seen it and were highly uncomfortable with it. I think that as people watch us, they realize I can relate to Viola, I can relate to Dan on various levels. By having that process, it is part of the-- I hate to use the word normalize, but it takes away or helps to remove the stigma that often exists. 

What more needs to be done is, I think, more in mainstream, like in media, so things that we use for entertainment. Our television shows or movies that we watch on Netflix and all these other streaming services they need to have more representation of people with disabilities in everyday life. It doesn't have to be a story about the disability itself. It can just be a character that happens to have a disability. It doesn't have to be the main focus of the storyline. 

I think that that would really push the wheel. We don't do that. I don't recall very many shows like that, but some of them have in the past. We did an episode on that. We did an episode on disabled characters throughout TV and stuff. 

DAN DWYER: Well, Speechless. 

VIOLA DWYER: Yes. Speechless, but Speechless, that was the main focus. It was the young man and his life growing up with-- I don't know if they ever really said that he had cerebral palsy, but that was the main focus, I think. There was this experience with that type of disability. 

WELLS: I've noticed in social media-- Well, in media and TV and movies, and this is a big problem, that not all actors are played by someone who has an actual disability. What are your thoughts on that? There are actors that don't have disabilities but are playing the part that they have, like autism or traumatic brain injuries. What are your thoughts, Dan, first and then Viola. What do you think about that? 

DAN DWYER: I don't know how I feel about it. I like the representation by a mainstream actor, but I wish that they would've offered it to a disabled actor first. 

VIOLA DWYER: I would agree. I would say I never really thought about that this deeply. Dan, in the sense that just the representation is a move in the right direction, which I agree. However, there are so many actors with disabilities who would love to be casted for those types of roles. That's why I get so excited when a producer puts the effort into casting and finds those actors. I learned about a recent, pretty successful show that was on Netflix, and we did an episode on it, a review. It's called All the Light We Cannot See.  

I think it’s Steve Levy, I think his name was, had, I guess, a casting crew that looked for, I did a massive call for actresses who could play the part of Marie, who had visual impairment or had blindness. Both the actresses that played the character actually had blindness. It was amazing. I just thought, "Wow." I think every person should, or rather, every movie or show that wants to have a character with a disability, they need to find an actor with a disability, not necessarily that exact disability, perhaps not, I don't know, but at least have a person who has experience with disability. 

WELLS: I agree. Okay. The first time we had you on the show, you talked a lot about your relationship and marriage, and I encourage our listeners to go to our website, disabilityrap.org, where we'll link to both of our past shows with you. Since the interview will air on Valentine's Day, I wanted to ask you about marriage equality for people with disabilities receiving services, especially social security benefits. 

There's this thing we call the marriage penalty where for some people with disabilities receiving benefits when we get married, our benefits actually decrease or stop altogether. Due to this fact that our spouse's assets and income are also counted. Did this marriage penalty factor into your decision on whether or not to get married? Then, what advice do you have for other couples facing these questions? 

DAN DWYER: I’ll let you.  

VIOLA DWYER: Thanks, Dan. Yes, Because really the partner in this marriage who dealt with that is really me. Dan, unfortunately, has never been eligible, shockingly enough, for social security benefits because of assets that he had from his accident. For me, there was a time in my life that I wasn't able to work, and I didn't get SSDI. Also, there's a state program that I'm on currently, where it helps supplement the cost of my caregivers. 

With that program, Dan-- Well, let's just say as an aside, Dan helps provide a lot of my care, but in this program, he would never be able to be paid for my care. I can hire my mother, I can hire my sister, I can hire my cousin. They all could be eligible to be paid as my caregivers in this state program, but Dan cannot because he is my spouse. That, I think, is backwards. 

Why? I know couples in the state of Pennsylvania, and I'm sure this applies to other states as well, where they have a similar setup, and they don't-- Because of what this law says, they won't go ahead and get married. 

I feel that that's really sad and unequal. It's unjust. What people could do. I would never recommend that they not get married if they want to be married. If they want to be married, they should be married. They have the right to be married. If you're on a certain benefit or if one of your partners is getting paid to help you, I can completely understand at this particular point in time where we are with these laws and these restrictions, that might not be a feasible move to make. Probably the best next thing would be to go to our local government and start making it known that this is unfair and needs to change. 

WELLS: You mentioned, is it the Act 150, in Pennsylvania program? 

VIOLA DWYER: Yes. 

WELLS: Can you explain a little more how that works for, not only you but for people in your community? Just a little more so they know what it provides. It provides a care attendant for people with higher incomes, if I'm mistaken. 

VIOLA DWYER: Correct. I don't know of actually many states to have this because most people will get their in-home healthcare services through Medicaid because they're on Medicaid. I don't qualify for Medicaid. I never actually did, even when I was on SSDI, I only received Medicare, but now I'm on my company's healthcare benefits. This program is through the state of Pennsylvania, it's Act 150 and it still works at the participant's financials, so there is a copayment, if you will, every month that you have to pay in relation to how much you're earning and also your expenses related to your disability. 

What they will do is they will pay and you can choose two ways. You can go choose to hire through an agency for your personal care assistance, or you can do it directive yourself participant directive. You can choose to recruit, hire, train, you do all the work, and we go that route. I'm a recruiter and I'm trained in HR, so I'm comfortable doing that. Once they're hired the state will pay their wages and then you pay another agency, whatever fees you have to owe them based on your income. You have to go through a whole process every year of being reevaluated financially to determine what your new fee for the year will be. 

WELLS: Dan, we really didn't get to hear from you very much on that last question. I just wanted to mention looking at you guys at the YouTube channel and just seeing you here today, you have such love for one another and that is so evident. I know you've mentioned in the past, in past episodes how you met and things like that, but what do you think is the secret to a long-lasting marital success? 

VIOLA DWYER: I'm so eager to hear. 

DAN DWYER: Pick your battles wisely. 

VIOLA DWYER: Anything else? 

DAN DWYER: Always communicate. 

WELLS: Communication is key. I think sometimes people forget that in relationships. 

VIOLA DWYER: It's hard to communicate. It seems like, oh, well yes, I talk to people all day all the time, but no, this is a different level of communication. This is true, a deep honest, soulful communication that you have to open up to one another with. 

WELLS: Yes. I believe that completely. I wanted to bring in our production assistant, Courtney, who is helping record the show today. She has a question for Dan and Viola. Courtney, take it away. 

COURTNEY WILLIAMS: I'm such a fan. I love that you guys talk about how you care take for each other in different ways. I just wonder if you could speak to the phenomenon that I know a lot of couples experience where generally if one person has a disability and the other person doesn't, a lot of people look to the non-disabled partner, oh, you're such an angel. Isn't it so wonderful how you take care of them as if the disabled partner does nothing. I wonder what is the experience you have with that? Do people perceive your relationship differently when you say things like, oh, Dan does a lot of my caretaking and how do people respond to you as a couple? 

VIOLA DWYER: We just hanging them all. No, we don't have that dynamic. I know I see other people on YouTube couples that share their lives in a similar way, who really do, and they struggle with that commentary almost on the daily, it seems. I think it's because people have no idea how much we do for each other and how much it's this dance that we have every day. He helps me get out of bed with the lift that we had. We found this lift, we thought we were going to have it as a backup because my mother, as my main caretaker was moving away a couple of years ago and I thought, well, we may not use it a lot, but we now use it every day and we actually like to use it. 

We use it on the weekends. Then I help him with every day with glossing and brushing his teeth and probably not enough shaving according to him, but he likes to have probably more regular shaves. We do that and he'll do other things for me. I think it's very hidden, people don't see that. They might see every once in a while that I'll help them with food when we're out in public, but we don't get that commentary because I think people have no clue. They think that we're totally dependent on other people and we can't possibly be doing all the things that we're doing for each other. 

I'm very, very grateful that we're able to do it today, and I hope we can maintain it for as long as we can because I really enjoy it. I think it's only deepened our relationship quite honestly. 

WELLS: One more question. You had a video on your YouTube channel where you guys went to Disney World, that experience and you rated the rides. 

VIOLA DWYER: The rides. 

WELLS: Yes. The rides. Do you think your YouTube channel brings you closer together as a couple in doing those activities? Or do you have a little arguments because of those activities and trying to get through those videos or at those activities? Or does it kind of push you together? Can you explain? 

VIOLA DWYER: You have this one because he's the one that gets snippity. 

DAN DWYER: [laughs] Yes, I think it brings us more together with the show. 

VIOLA DWYER: Dan is not being honest here. He is a very regimented person. He loves routine. Sometimes I'll say, "Hey, Dan, we haven't done an episode in a while we should film this." He might want to take a shower at that time, or he might want to eat because it's lunchtime and it's like, "Well, let's hurry up, let's film it." We'll do it, but then he's upset because he didn't do it. Sometimes, yes, it can get in the way. 

Now, thankfully we don't do all the editing, so it could be a whole other job, but it's a part-time job. We do it on the weekends, we do it on free time. Yes, it could strain people and get them cranky because it breaks up their routine dance. 

WELLS: That was our conversation with Dan and Viola Dwyer. Their YouTube channel is The Ginchiest.  

Before we end the show, we have a special announcement. We'll be hosting a live Zoom recording of Disability Rap on March 4th in honor of National Cerebral Palsy Awareness Month. It will be a panel discussion focusing on the transition from youth to adulthood for people with cerebral palsy.  

Again, that's a live recording of Disability Rap on March 4th at 3:30 PM Pacific Time here in the United States. For more information and to register for the Zoom event, go to disabilityrap.org.  

Special thanks this month to Carl Sigmond and Courtney Williams. I'm Lindsey Wells for another edition of Disability Rap.