Disability in the Modern World, Advocacy, and More with Guest Hollis Peirce

Welcome to Season 5, Episode 12 of Winning Isn't Easy. In this episode, we'll dive into the complicated topic of "Disability in the Modern World, Advocacy, and More with Guest Hollis Peirce."

Join attorney Nancy L. Cavey, a leading expert in disability claims, and special guest Hollis Peirce for an insightful discussion on disability advocacy, the realities of living with a disability in today’s world, and more. Hollis, born with muscular dystrophy, shares his personal journey, offering a firsthand perspective on how disability impacts his daily life - highlighting that living with a disability can often feel like a full-time job. He also discusses the challenges faced by those with disabilities in the modern world and explores ways people can get involved in disability advocacy.

In this episode, we'll cover the following topics:

One - Hollis’ Personal Journey and Experience

Two - Disability in the Modern World

Three - Advocacy and Perspective

Whether you're a claimant, or simply seeking valuable insights into the disability claims landscape, this episode provides essential guidance to help you succeed in your journey. Don't miss it.


Hollis, who hosts the podcast 21st Century Disability, can be found at the following:

Website: https://www.21stcenturydisability.com/

Instagram: https://www.instagram.com/21stcenturydisability/

Facebook: https://www.facebook.com/21stcenturydisability

Bluesky: https://bsky.app/profile/21stcentdisability.bsky.social

LinkedIn: https://www.linkedin.com/in/hollis-peirce-347122239/


Listen to Our Sister Podcast:

We have a sister podcast - Winning Isn't Easy: Navigating Your Social Security Disability Claim. Give it a listen: https://wiessdpodcast.buzzsprout.com/


Resources Mentioned in This Episode:

LINK TO ROBBED OF YOUR PEACE OF MIND: https://mailchi.mp/caveylaw/ltd-robbed-of-your-piece-of-mind

LINK TO THE DISABILITY INSURANCE CLAIM SURVIVAL GUIDE FOR PROFESSIONALS: https://mailchi.mp/caveylaw/professionals-guide-to-ltd-benefits

FREE CONSULT LINK: https://caveylaw.com/contact-us/


Need Help Today?:

Need help with your Long-Term Disability or ERISA claim? Have questions? Please feel welcome to reach out to use for a FREE consultation. Just mention you listened to our podcast.

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Please remember that the content shared is for informational purposes only, and should not replace personalized legal advice or guidance from qualified professionals.

Transcript

Nancy Cavey [00:00:00]:
 Foreign hey, I'm Nancy Cavy, national ERISA and individual disability attorney. And welcome to this episode of Winning Isn't Easy. Before we get started, I have to tell you that I've got to give you a legal disclaimer. This podcast is not legal advice. The Florida Bar association says I have to say that. And now that I've said it, nothing will ever prevent me from giving you an easy overview of the disability insurance world, the games that carriers play, and what you need to know to get the disability benefits you deserve. So off we go now. Today's episode is an especially meaningful one for me as we explore the complexities of disability with our guest, Hollis pierce.
 
 Nancy Cavey [00:00:53]:
 Hollis is 36 years old. He's got congenital muscular dystrophy. He is someone who brings both his personal experience and professional insight to the conversation. Not only does he live with disability, but he also is the host of the 21st Century Disability Podcast. That's a show that looks at how the modern world is changing society's perception of disability. The through his work and his life experiences, he's passionate about disability advocacy and he works tirelessly to challenge the way society sees and supports people who have disability. And today, he's here with us as our special guest to share his journey, discuss the challenges and rewards of living with a disability, and talk about the important roles advocacy plays in creating a more inclusive world. So without further, further ado, please welcome Hollis Pierce.
 
 Nancy Cavey [00:01:47]:
 Hollis, anything to add?
 
 Hollis Peirce [00:01:51]:
 You please follow on there. Nancy, thank you very much for having me.
 
 Nancy Cavey [00:01:56]:
 Our pleasure. Now, today we're going to talk about three things. The first is we're going to talk about his personal journey and his experience. Secondly, we're going to talk about disability in the modern world. And thirdly, we're going to talk about advocacy and the perspective of someone such as Hollis, who is very active as a disability advocate. But before we get started, let's take a quick break.
 
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 Nancy Cavey [00:02:44]:
 Welcome back to Winning Isn't Easy. Hollis, can you tell us about your medical diagnosis and the disability it causes?
 
 Hollis Peirce [00:02:54]:
 Yeah, certainly, Nancy. As you said, I have congenital muscular dystrophy. It's a rare form of muscular dystrophy and it is in that it is apparent from birth. So I've never been able to walk. Unlike most people with muscular density who are able to walk in their early childhood, I've always been in a chair and I've always had relatively the same amount of ability. However, it has slowly progressed in throughout my lifetime. But it's, it's a form that progresses so slowly that you don't even really notice it. Except for in 2021, my respiratory needs required me to have a tracheostomy and I now have a permanent vent to help me breathe a bit more fully.
 
 Nancy Cavey [00:04:07]:
 So what are the challenges that you face on a daily basis?
 
 Hollis Peirce [00:04:11]:
 You know, my disability is fairly limiting to me. You know, as you said, I'm now in my mid to late 30s and I'm no longer able to live at home. I'm living in a complex care medical facility and it's, it's filled with talented nurses that help me live each life of each day to the fullest. It's very limiting in that way. But apart from that it's, I'm, you know, I'm still able to go wherever I want to and do whatever I need. I had a couple years during the pandemic that were fairly limiting just because I am immunocompromised. Had I caught Covid during the pandemic, it would have been fairly detrimental as I only had, you know, I could only, I only had the breathing capacity to use about 7% of my lung, of my lung capacity on my own. But fortunately I never caught Covid before I had my trach and I did in the fall.
 
 Hollis Peirce [00:05:46]:
 But you know, my vent helped me cough it out and breathe through it.
 
 Nancy Cavey [00:05:54]:
 So yeah, so many of my clients who are disabled have more than one medical condition. They might have fibromyalgia, chronic fatigue, Ehlers Danlos. So it's just not one medical condition they have. It's a multiple of medical conditions. But, but I always hear from them that regardless of how many conditions they have, that it feels like a full time job and that people don't necessarily understand how you could be disabled from more than one condition. But could you speak to, from your perspective whether you feel like you've got a full time job dealing with the residuals of your muscular dystrophy?
 
 Hollis Peirce [00:06:42]:
 Absolutely. Living life with a severe disability is very much like a full time job in that, you know, basic tasks take you, you know, whether you're getting dressed, someone takes to throw a shirt on takes five minutes or a minute and a half. Whereas for someone like me, getting dressed and getting up out of bed takes half an hour, 45 minutes to an hour. I don't eat literally that much anymore. So having my feed through my feeding tube takes up to an hour or more. And I have to take medicines for pain relief as I am constantly in a certain amount of pain. Having one disability often causes other disabilities. For instance, someone like me with muscular dystrophy, when you hit puberty and just fine starts to grow, your muscle mass can't withstand the weight of your spine, so you end up with scoliosis.
 
 Nancy Cavey [00:08:11]:
 Right. So let me ask you this. You mentioned one of the challenges you face is pain. Many of my clients are in chronic pain from not only one medical condition, but multiple conditions. And sometimes I say to them, look, we need to tell your story to the Social Security Administration or to the long term disability carrier by disease. I know that sounds strange. And you may not be able to classify that in your head. Do you think of pain generically, if you will, pain that you suffer, or do you classify it based on whatever's going on and what suggestions do you have for or people who are in chronic pain to kind of document their pain, if you will, in a litigation setting where the question becomes this particular disease causes this pain.
 
 Nancy Cavey [00:09:04]:
 This disease causes that pain. Can you speak to that, please?
 
 Hollis Peirce [00:09:08]:
 Yeah, absolutely. I definitely consider certain things cause this veins, certain things cause that pain. Because in my lifetime, you know, I've noticed that I didn't have this pain until this happened. Right. For instance, I didn't have chronic neck pain until I had to have spinal fusion surgery and I could no longer arch my back to support my head. So all of my weight of my head goes to my neck. That's no longer supported.
 
 Nancy Cavey [00:09:57]:
 Thank you for describing that for me. And I'm going to come back to you in a minute because we're going to talk about disability in the modern world. But let's take a quick break and we'll regroup in a minute. Welcome back to Winning Isn't Easy with our special guest, Hollis. Hollis, you host a podcast called the 21st Century Disability where you analyze the modern world and how it's changing how society views disability. Tell me what inspired you to start your show.
 
 Hollis Peirce [00:10:43]:
 You know what, Nancy? What originally inspired me to start my show was, you know, I graduated from my master's degree in history just before the pandemic had started. And I was wanting to give lectures and guest lectures, but, you know, it was two or three years after my education and I really, through the pandemic, I couldn't give any lectures. And my medical spill after the pandemic had really impacted my life. And so I sort of saw podcasting as a medium to do exactly that. When I first started out my podcast, it the first season or two was just me monologuing about ableism, you know, accessibility, what life is like with disability, and other issues with disability.
 
 Nancy Cavey [00:12:06]:
 So one of the things that I find again with my clients is that there is a change in the way they view themselves. They were the breadwinner, they were the loving father, mother out there doing things with their children, engaging in social activities. And because of whatever's happening to them, either physically, psychiatrically, cognitively, they're view of themselves and their role in the modern world has changed. They obviously and legitimately have a problem dealing with that change. As your disease has progressed, have you gone through something similar and what suggestions do you have for people in terms of how they view their role, their changing role in their personal lives? And then we'll get to the question of. In society.
 
 Hollis Peirce [00:13:04]:
 Yeah, I mean, I've always had this similar, a similar disability. My life hasn't gone through so much change. However, the big change for me was like during my graduate degree, for instance, I was living on a campus at university, all on my own, and then two or three years later, now I'm living in a complex care unit. So my life has made a dramatic shift. For someone who has gone from not being disabled and as you said, being the breadwinner and is now having to learn how to adapt to a new lifestyle. I would say, you know, just turn to community. Speaking as someone who is disabled, I benefit greatly from being a member of the disabled community. For instance, I've got friends who have similar disabilities as I do and you know, I founded a power wheelchair hockey league.
 
 Hollis Peirce [00:14:27]:
 And so we, you know, we play an adaptive sport together and you know, together you, you know what each other's ability is. And really when you are a member of a community of people who are going through the same thing as you, you can empathize with people. And really it just feels like you don't have a disability because you're just a part of the group.
 
 Nancy Cavey [00:15:04]:
 So how do you think the modern world has helped those who have disabilities?
 
 Hollis Peirce [00:15:08]:
 It certainly helps people with disabilities in a number of ways, but I think the main way is in my perspective anyways, and there are many different perspectives of this, but in my way, in my perspective, it's allowed the social model of disability to become more apparent to be true in that if the environment around you is able to eliminate the barriers that your disability forces you to overcome, then your disability really disappears. Whereas you know, in, in the early 20th century when you know, we didn't have, you know, a power wheelchairs or elevators or you know, lifts or things like that, people with disabilities, even basic disabilities would have been bedridden. Whereas in the 21st century, now as I say, it's 21st century disability are disabilities are able to be. We can use technology to overcome barriers.
 
 Nancy Cavey [00:16:48]:
 But where do you think the society falls short in terms of both accessibility and inclusion?
 
 Hollis Peirce [00:16:54]:
 In terms of accessibility and inclusion, I think really still a lot of societies expectations are and their judgments are still what's holding us back. For instance, a lot of people see somebody in a powder chair or in a wheelchair and think that automatically assume that they have a cognitive disability as well. And so, you know, you would speak down to someone in a wheelchair as if they're a child or if you are interviewing somebody for a new position and if one of the interviewees is in a wheelchair or has another disability, if you are not disabled yourself, you might make assumptions like oh well, you can't, you cannot do this job position because of X and Y. But in reality you might not know that that person already has an ability to overcome that barrier. But you just have to learn how and you just have to be open minded.
 
 Nancy Cavey [00:18:28]:
 So Hollis, there's often a disconnect between public policy, which is generally well intentioned and real life experiences. And you just touched upon that in the employment setting. Is there one policy change that you think would make the biggest difference in your world?
 
 Hollis Peirce [00:18:46]:
 Yeah, absolutely. I mean, you know, I live in Canada and I benefit from what's called the Ontario Disability Support program. And so this is a support pension program that goes out to people with disabilities who can't because their disability cannot maintain a full time job job and so they will help you pay for your medical bills. For instance, they paid for 75% of the power chair that I am currently sitting in. In other ways, you know, they, it is a program that is designed to keep disabled individuals living below the poverty line because you know, as soon as you start to earn a very small amount of money on a regular basis, they completely cut you off, which is ridiculous. So I think these pension programs need to be able to allow a bit more leeway in terms of allowing people with disabilities to earn what it is that they can and still provide the same amount of support that they are already giving.
 
 Nancy Cavey [00:20:33]:
 So here in the United States, you would have been eligible for children's Social Security benefits based on your disability under your parents earnings record. If you had become disabled as an adult, there is an earnings test. If you'd worked and had sufficient quarters of coverage, you might be eligible for something called Social Security disability benefits. And we here have limits on how much a person can earn. But as part of the benefits, if you meet the five step sequential evaluation test is money benefits and medical benefits in the form of Medicare. If you didn't have enough quarters of coverage, you might be eligible for what's called ssi, which is asset based and pays the fixed amount of benefits and also has medical goes along with it. So it sounds like the Canadian system is a bit similar to the system here in the, in the United States.
 
 Hollis Peirce [00:21:32]:
 Yeah.
 
 Nancy Cavey [00:21:33]:
 So let's, let's take a break because I want to come back and talk about advocacy and Hollis's perspective as an advocate. So let's take a quick break.
 
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 Nancy Cavey [00:22:32]:
 Welcome back to Winning Isn't Easy. Our interview with our special guest, Hollis. Hollis. We're going to talk about advocacy and perspective of an advocate. In this segment, I'm going to ask you sort of a sociological question. And that question is what is the difference between the social model and the medical model of disability?
 
 Hollis Peirce [00:22:54]:
 Absolutely, Nancy, and thank you for asking this question. The important difference is that the medical model is a perspective from that I would say that professionals take like professional doctors take in that you have the disability and you are the issue. Whereas the social model is more of a perspective that an advocate such as myself takes in that, yes, I realize I do have a disability, but my disability is impacted much more by the fact that the barriers around me are causing a lot of my disability. For instance, if I were to go to a restaurant for dinner and the bathrooms are inaccessible to me, that is causing me more of a disability than if they were accessible. That's why I call my podcast the 21st Century Disability, because a lot of these new technologies that are available are eliminating a lot of the barriers around me. For instance, my wheelchair can elevate as well as tilt. And so if I, if I can elevate to a certain height. It is remarkable, Nancy, the way I am spoken to when I am.
 
 Hollis Peirce [00:24:54]:
 When my chair is fully down, as opposed to when I elevate myself so I can see someone at eye level. So that is eliminating a barrier in my environment by allowing me to talk to someone eye to eye instead of having to look up to them.
 
 Nancy Cavey [00:25:17]:
 That's a great point. How the barriers can be more disabling than the disability.
 
 Hollis Peirce [00:25:22]:
 Absolutely.
 
 Nancy Cavey [00:25:23]:
 So what as a dis. What does disability advocacy mean to you? And what are the ways that people who are disabled or not disabled can get involved to help make a difference?
 
 Hollis Peirce [00:25:38]:
 Yeah, well, disability advocacy, to me, my. At least my. The attitude that I've taken has been, you know, throughout my life, I have done certain things in an effort to advance people like me in my community so they have better life than I did. So for instance, I have done accessibility audits for music festivals to tell them suggestions on how they could improve their festival by doing certain things that would accommodate people with certain disabilities. And, you know, you can do those things whether you are disabled or not. You can be an advocate and an ally if you're not disabled by doing even doing minor things like volunteering at an adaptive sports event because, you know, people with disabilities need help, you know, refereeing or things like that.
 
 Nancy Cavey [00:27:08]:
 So it. In our law office, we're actually very actively participating in the VMS community, the fibromyalgia community, the Parkinson's disease community. So we will sponsor events. We do a lot of educational events because we really think that being educated about a person's legal rights and entitlement to benefits our. Are very, very important. So let me ask you this. Do you think the media is doing a better job in being an advocate for the disabled and reporting on what's going on, or could there be some improvement?
 
 Hollis Peirce [00:27:41]:
 I think, yes, they are doing a better job in some ways, but in other ways they're not. In terms of media, I think that there's not enough visible disabilities in, you know, movies or TV shows and in the news, you often don't hear about people with disabilities at all. And the. The way that the only real. The thing that I most frequently hear about disability is in advertisements for law offices such as yourself.
 
 Nancy Cavey [00:28:35]:
 So you made a really good point. I was just thinking about recently having seen the wizard of Oz and Elphaba's Sister, as you know, is in a wheelchair. And a lot of the chatter was, well, is that person really disabled or are they just an actress sitting in a wheelch and that actress is in fact wheelchair bound? And that little bit of a movie brought some limited discussion about disability work in the context of the movie industry. But I think you're absolutely right. You won't see on a TV show generally a disabled reporter because it's just not considered to be a way to attract viewers, if you will, which is very unfortunate. But your, your podcast, I think, is shedding light on those kinds of things. Can you talk with us a little bit about that podcast, who the guests are and, you know, what's the purpose or goal of your podcast?
 
 Hollis Peirce [00:29:35]:
 Yeah, well, my podcast is, as I mentioned earlier, I, you know, at first I was just trying to get away of lecturing, so it was really just me ranting about certain topics. However, now I am focusing more on having guests and having meaningful, meaningful conversations. For instance, I had a guest who specializes in, he did his degree in disability studies focusing on the role or the representation of disability in media. And so he and I sat down and we talked about the role of mental health in Batman, for instance, and how the Joker is constantly suffering from mental health issues. And, you know, it's Batman's role to fix his mental health by punishing him. And also, like you said earlier, speaking of, you know, actors who are playing roles of people in wheelchairs that are not actually in wheelchairs, you could talk about the, you know, the show like Glee, who had a character who was in a wheelchair, but not who is not in a wheelchair himself. But. And now in terms of what I hope that my podcast does is I like to have guests on that speak about issues that they are facing in the 21st century and how the modern world is helping them.
 
 Hollis Peirce [00:32:01]:
 For instance, in my latest episode, I talked to a disability advocate who is queer and how his, a lot of his work as an advocate was to advocate for people with disabilities in the sexual realm because there is, you know, there is a lot of available materials for able bodied or non, the non disabled to learn, you know, how to have sex, how to be, have safe sex, most importantly. But you know, if you are disabled, sex is not something that is spoken about culturally. And so, yeah, I'm really just trying to pass on and further the messages of my guests and how the modern world is assisting them.
 
 Nancy Cavey [00:33:21]:
 So finally, you have a progressive disability. But what's one piece of advice that you would give to someone who's newly navigating life with disability?
 
 Hollis Peirce [00:33:34]:
 I think someone who's, someone who is new to life with disability. I would say I haven't had that experience myself, but I would say to turn to the knowledge of others and, you know, so read about disability Watch and listen to podcasts about disability. Join the community. And you know, because there are dozens of charities and fundraisers and organizations that are, you know, probably focusing on exactly what you are going through. So there are dozens of communities and dozens of charities that are supporting you and what you are going through. It's just that you might have to make a small effort to go about and find them. And there are ways of just look up on Facebook or LinkedIn or any social media and there are advocates out there that are open to supporting you and what you are going through.
 
 Nancy Cavey [00:35:05]:
 Well, thank you Hollis, for your insights and your knowledge and taking the time to speak with us today. I would urge our listeners to tune in to Hollis's podcast and in the meantime, sticks up. So thank you for tuning in to this week's episode of Winning Isn't Easy. If you found this episode helpful, please take a moment to like our pages, leave a review and share it with your family or friends. And we want to hear from you. You'll note that at the beginning of each episode description, you can see a link where you can send us your questions and comments. We might even feature them in a future episode. So join us next week for an insightful episode of Winning Isn't Easy.
 
 Nancy Cavey [00:35:45]:
 Thanks for listening and thank you, Hollis.
 
 Hollis Peirce [00:35:48]:
 Thank you, Nancy.