S1-Ep17_Vincenzo_Piscopo

Disabled Lives Matter

Disabled Lives Matter

Season 1, Episode 17

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Vincenzo Piscopo

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Hi I’m Nadine Vogel and your co-host of disabled lives matter and with me, is my co-host Norma Stanley.

Norma Stanley: Hello everybody.

Nadine Vogel: Norma, this is not just a podcast it's a what.

Norma Stanley: It is a movement.

Nadine Vogel: Absolutely, to help us to help us with that movement, we have a wonderful guest today in Vincenzo Piscopo, did I say that right.

Vincenzo Piscopo: Perfect.

Nadine Vogel: Alright. I love the Italian language but I’m always afraid of botching it up.

Vincenzo Piscopo: No, no, you did wonderful.

Nadine Vogel: Okay, so Vincenzo you are a public and community affairs and corporate social responsibility, professional I believe you've worked in the US and global you have worked in corporate and in nonprofit, and today I believe you are the CEO of united spinal association. Is that correct. So tell us because I think that's fairly new right just since maybe the end of last year.

Vincenzo Piscopo: Yeah, six months.

Nadine Vogel: Okay, so tell us a little bit about yourself and your background, as I’ve said, and then let's talk about united spinal.

Vincenzo Piscopo: Yes, absolutely, so I am from Venezuela, I was born and grew up in Venezuela my parents are Italian, but I came to the US 27 years ago I came here to get my MBA and right after I finished my MBA, I was hired by the Coca Cola company, and I worked for Coca Cola company for 25 years. And then, after that, I decided to make the big step of moving from the for-profit world to the nonprofit world. I am, I was injured 10 years 11 years ago with a spinal cord injury that left me paralyzed and that was the time you know when I started working and advocating for the community of people with disabilities, and so I have been in the Community for close to 11 years. And, and the more that I work with this Community, the more that I am passionate about it because I, II super impressed with the brilliance of that community of people with disabilities but also disappointed with the fact that society does not leverage such brilliance, so my legacy or my role in United spinal but also as a human being is going to be, or you know I’m trying to be, to actually remove that stigma that is stopping the world from you know, taking advantage of the brilliance of their community of people with disabilities.

Nadine Vogel: See now our listeners know already why we're interviewing you. Because you are the perfect example of disabled lives matter.

Vincenzo Piscopo: Right.

Nadine Vogel: Let me ask you, that transition from for-profit, to non-profit um you know, going from a company, a very large global company, where you know, yes, has initiatives around disability to a nonprofit where everything is about disability. What was that transition like for you?

Vincenzo Piscopo: It was fun, I mean I’m happy and I’m enjoying it a lot, you know from it from a managerial perspective, you know the difference is that. You know, instead of working for the stakeholders, or for the stockholders right it, you know you're working for the Community right, so the profits, you know. With both instances, you have to develop and execute strategies that allow the organization to generate profits, with the difference that the profits in the nonprofit actually go to help that community. That we're serving and for me that is so energizing because I really, you know, as I said before, I think that you know we are wasting a lot of talent. And so, for me it feels very good that all my efforts are going towards specifically to help in that community other than that. You know the nonprofit world is definitely a different world you know they're limited resources and you really have to be more creative on how you use the limited resources to have that that great impact in our body, so I had obviously we know where you come from such a big company with so many resources and you move to a you know, a relatively small organization it's always you know shocking. But you know it's also you know, makes me very proud of the united spinal team because it's a team that with limited resources has been able to accomplish so much for the community in the last 75 years.

Nadine Vogel: So, what is the mission of the organization.

Vincenzo Piscopo: So, the mission of the organization is actually to empower and advocate for people with spinal cord injury and disorder, so people that live with paralysis, so that they can have the best quality of life, so that they can exercise their passions, they can be innovators and they can actually you know, the way I always say is that they can live their life at their fullest potential. So the organization does a lot around advocacy for bills and policies that advocate for the quality of life of people like me and or people with paralysis in general but also we have a very successful thorough resource center that we provide services to the Community, and we give them tools, services, that allow them to you know to get that information they need to be able to really go out and conquer the world.

Norma Stanley: Speaking of conquering the world, one of my favorite places number one place on my list to go see next year is Italy and would love to take my daughter, who is a wheelchair user. I don’t know how long it’s been since you've been there, but you know, how easy is it to get around and the chair it tasted like I don't know, any place, Rome.

Vincenzo Piscopo: That’s a great question, Norma, I was in Italy as a wheelchair user several times as a wheelchair user, you know it's not the US from an accessibility perspective, you know I can tell you, for example, when I was rolling on the streets of Rome I fell a couple of times because of that, the roads are very bumpy because they're so it's very bumping and when you're in a wheelchair, you know it's very easy to you know to fall forward, you know. You know if you are propelling your daughter, you might be a little bit different you know safer, because you can control it more but if you're self-propelling it's you know it's a challenge because it's not as smooth row. You know finding accessible bathrooms in you know unless you go to like a big place for you know, but if you go to one of those tiny restaurants in the middle of you know, Rome and all that. You know, accessibility is an issue like you know getting in the restaurant, because they would have like a big step with you have to go down. Right or you know the bathroom is like you know tiny, tiny but on top of that, they have like a big you know they use it also for storage so like you know there's no way for you to get in. So those are the kind of things that I faced but I would not stop yourself from going to Italy it's such a beautiful place that you know you will figure it out.

Norma Stanley: Yeah, well I look forward to it.

Vincenzo Piscopo: I was going to say, especially if your daughter does not you know if she does if she doesn't use the power chair, like a manual chair. It may be easier because they're you know they're not as bulky and all that, and you know but it's doable it's doable and you and your daughter will love it.

Norma Stanley: I look forward to it.

Nadine Vogel: You almost need like the MARS Rover you know, like one of these like mechanical things that can go over rocks and go over a wall.

Norma Stanley: Yeah.

Vincenzo Piscopo: Exactly. Exactly.

Nadine Vogel: The next iteration of wheelchairs for travelers.

Norma Stanley: Right.

Vincenzo Piscopo: It’s funny, I’ll tell you I went to, I was, I was in Spain, a couple of years ago in the Canary Islands, you know what you know those are little you know they're not that big of islands. And I was very impressed with their transportation services, you know. All the buses were accessible, so they had like a little ramp that went down and allow me to get in with a wheelchair, and all that and that made my life they're very, very you know easy. So, I mean you know you'll find anything, you will find all things, but you know just be there with a good attitude, and you know, and you'll be fine.

Norma Stanley: Well actually, Spain is my number two place to go so thank you.

Nadine Vogel: We’re going to have to take this to the Travel channel.

Norma Stanley: Definitely, I just I thought he would be the best person to ask.

Nadine Vogel: Absolutely. I mean it's true traveling you know with a variety of disabilities every country has its own legislation. And you know around the world there are some very old countries and yeah it can be very challenging and then you add you know language differences and everything else so certainly, I think that can be an issue. So I’m curious to bring you back to United spinal I mean, when you provide you said resource Center right and tools and services does it include things like you know if you're traveling and you know you have a spinal cord injury, I mean do you do that kind of support as well.

Vincenzo Piscopo: Yeah, yeah, we do all that, I mean you know our focus is to ensure that you know you go out there and live life to the fullest, so we have a network of hundreds of peer support groups around the country because we are our Organization has 50 chapters around the nation, and you know the chapters have beautiful groups and you know, during those peer support encounters you know we touch up on any kind of topics, but also, you know we have. Four or five specialists that are ready to answer any question so from you know from traveling to bladder management. To get in the right wheelchair, and they are a team of amazing individuals they are all with spinal cord injuries or with a disability, and you know if they don't have the information, they will find it for you.

Nadine Vogel: That's great well you know I want to know more about these chapters, because I actually didn't know that I didn't know that united spinal did have chapters around the country and so we're going to go to commercial break, but when we come back I’d love to know more about you know, do the chapters have different focuses depending on where they are in the country, you know how big is really the membership, how we can get involved so stay tuned Norman I will be right back talking within Vincenzo about united spinal as soon as you come back from commercial break. Thank you.

Voiceover: And now it’s time for a commercial break.

COMMERCIAL BREAK:

Voiceover: And now, back to our show.

Nadine Vogel: This is Nadine Vogel, I’m with my co-host Norma Stanley we are back on today's episode of disabled lives matters with Vincenzo Piscopo. So Vincenzo before we broke for commercial we were talking about and to my surprise that United Spinal has 50 chapters, does that mean there's one in each state.

Vincenzo Piscopo: So, we do have 50 chapters, now, there is no unfortunately we don't have one in each state but we're looking to open, you know as many as possible. It all depends on you know how many people in the area are there are willing to start the chapter, so we have many, many, many states, there are some states that we have more than one chapter. Okay, and yeah. And they vary, some of the chapters are big chapters, some of them are little bit smaller but, most of them are you know, some of them have like full time employees that receives salaries, some of them are all run by volunteers.

Nadine Vogel: Got it got it and do different chapters have different, I guess, I want to say focuses under that umbrella mission in terms of what they do.

Vincenzo Piscopo: To an extent right, so you know the chapters are very independent and the sense that they will work on the areas that they believe their community needs the most. But, but in general they respond to you know, to the macro needs of the Community, so that you know we can all work together for the same you know you know, with the same focus on the same hand however you know, there are chapters that are you know, bigger than and do many more things and have the ability to do more things for the Community. And they're all the chapters that are smaller and they're more social in nature, so it varies depending on the size of the chapter and the energy of the Members, but at the end you know we all want to do good by the community.

Nadine Vogel: Yeah absolutely. So, when we first started, you were talking about one of the things, one of the big things that United Spinal does, is advocate and advocacy around policies and bills on, is there any one piece of legislation or policy that right now is a big deal for you guys.

Vincenzo Piscopo: There's several you know there's four things that we always are. With our eyes wide open and making sure that you know our government is doing the right thing you know one is transportation right, so we want to make sure that the people with disability in general, but people with mobility, disabilities in specific are well taken care of that have access to public transportation, but also have access to technology that is being developed as it relates to transportation, you know, to give you an example of autonomous vehicles, so making sure that the industry of autonomous vehicle are taking us into consideration when developing technology. To ensure that you know we will have access to that technology, which is extremely important for the community of people with you know with paralysis, so that's the first one. The second one is employment, you know everything related to employment and making sure that you know that people with disabilities and specifically with mobility, disabilities with paralysis. Have access to employment and are not discriminated against when they're being employed and have all the accommodations that are required to be successful when they work. The third one is technology, you know everything around technology is also you know, with efforts on minimizing the digital divide a technology divide and all that that's something that is big priority for United spinal big priority for me and therefore big priority on our advocacy efforts. You know I always say with technology it's a little bit worrisome because technology is advancing so fast but unfortunately, is not always including us as it's being developed and what that creates is a bigger gap. That is very hard to recover from. So we as an organization, have to be in the forefront, to make sure that the technology world that technology industry is taking it into consideration at the beginning. Throwing paper when developing technologies so that our needs are addressed, and that gap is not increased. So, you know one thing that I always tell technology partners of United Spinal is that when technology organizations are developing products that are addressing our needs, they are also innovating for mainstream. So that's extremely valuable for them, so it really makes sense for them to take care of. But anyways from an advocacy perspective, we want to make sure that you know that technology that they all the technology related bills and policies really makes it easier for us to stop that digital divide, and not to make it bigger and, finally, is access to health care. You know so that's another one that you know it's big it's enough to tell you the truth is embarrassing you know because of all the limitations and all, the hoops that we have to go over to be able to get the right wheelchair the right medical treatment and so on, so forth, and not only that you know all of the inconsistency around Medicaid Medicare as it as it relates to caregivers and covering caregivers and then your ability to work if you're getting a caregiver and all that that actually what he does it's penalized people that are talented yeah I know like people that really want to advance in life so me as a CEO and united spinal’s organization is going to have that you know as a big fight for the next 75 years.

Nadine Vogel: Yeah, and I would imagine and Norma, you and I have talked about this that that you know the healthcare access under this timeframe of covid has been particularly difficult.

Vincenzo Piscopo: Yeah, and it hasn't been you know it hasn't been exacerbated by the other things that I mentioned, like the digital divide, like their lack of access to transportation, that is accessible. So, it really, it's you know it's a full circle, if you think about it all those four things work in tandem to really that you know if they're not working to help us they actually create big problems for us that really stop us from living our life at its fullest.

Nadine Vogel: Right, so you can’t even though each of these are four separate areas that you're focused on you really have to look at them like you said in tandem, they have to be fully integrated. Because, you know as an individual, you need transportation, you want to be employed you're going to need transportation you especially in covid we're using technology and if you're not healthy you're not going to be able to work so.

Vincenzo Piscopo: Exactly.

Nadine Vogel: So, it all comes together oh my gosh wow that's a lot so um I know that your full-time job now is a CEO of united spinal, but I believe in your not-so-distant past, you founded an organization called wheels of happiness foundation, and that was specifically to help people with motor disabilities, I believe, but I think it was global can you just tell us a little bit about that.

Vincenzo Piscopo: Yeah so wheels of happiness is you know my side job or I don't know how you want to call it, but yes, I founded that organization with my wife little bit after my injury and you know we did it because we realized that people with disabilities outside of the US, especially in poor countries were not living life with dignity because their disabilities right, so we are you know, we were able to meet in fact that the person that inspired me to start that nonprofit was a priest from Uganda His name was Father Thomas and father Thomas, he got injured. From a motorcycle accident and right after his accident and he you know, he was left in the road for hours until a pickup truck saw him and put him in the back of the truck took him to a hospital and three days later he was sent back home with no rehabilitation and so he spent a whole year in bed with no bowel program no bladder program or anything so not living life with dignity and that's not right, you know for us, you know as a Member of this world as Christians For those of you know, for those of our there are Christians is not right. But also, you know, one of the things that really was important for me that was a big Aha is that we were able, through the work and help of Samaritans. Father Thomas was able to be brought to the shepherd Center, he spent a month and a half at shepherd and then he was able to go back to Uganda and serve his community. So, he just needed that little push and compassion and then he was able to multiply by a million by giving back so the whole mission of the wheels of happiness is precisely that. Provide those folks that little push. That they need to live life with dignity and be able to give back to their communities and that's what we do with wheels of happiness we help many people in Venezuela, because at the country that I am from. But we also help people in Colombia in Peru in Mexico in Uganda in Kenya in Nigeria, so we all are more organization, you know we're not big at all, you know we live, because you know, thanks to the contribution and compassion of our friends and compassion of our friends and family. But with that little help that we're getting we're able to help many, many peoples and really, really packed life which you throw in your child theme and invigorating.

Nadine Vogel: I love it I think that's amazing. Beautiful. God dude you're doing some amazing stuff they're going Enzo and my understanding, we only have about a minute left, but my understanding is on a personal note, you are a wheelchair tennis player and, from what I hear you’re pretty good.

Vincenzo Piscopo: Oh, please, who told you that lie. There’s a truth and a lie right there. The truth is I do play tennis, I love it I enjoyed the lie is that I’m good. I am terrible if you see my friends and I worked at ease with me they're always frustrated with me on a plane tangent, but you know what I don't care. I love playing it I enjoyed. I never thought that you know I never played tennis that's an able body, in fact, I was a terrible athlete before I became injured, but you know through shepherd. They really inspired me and motivated to start playing tennis and it's a great sport and keeps me active it's allowed me to meet a lot of great people and I’ve done it for several years and I keep on sucking.

Norma Stanley: You’ll grow into it. How’s my friend Marguerite.

Vincenzo Piscopo: Say again.

Norma Stanley: Isn’t her name Marguerite.

Vincenzo Piscopo: Oh, Martina, Martina.

Norma Stanley: Martina. Oh okay. Martina. I always thought it was Marguerite.

Vincenzo Piscopo: Well Martina, she is she's loving the pandemic, you know because she's with the family all the time she doesn't have to do anything she sleeps, eats and sleeps.

Nadine Vogel: Well that works, but you know I did I do want to come back and I know you said you suck at wheelchair tennis but you know I’m not sure that that matters, I mean not to me anyway, because I, you don't want to see me on a tennis court but anyway, they think it ties back, though, to one of your four pillars for United spinal which is healthcare and healthcare access. Because participating in sports is part of what enables all of us to stay healthy. yeah, keep our bodies going, and I think that for people with disabilities, in particular, that is so important, whatever sport, it is, and no matter how good you are or not. The fact that you're participating, I think, is that, as a health component is a social component for all of us, not just people with disabilities.

Vincenzo Piscopo: And I totally agree and also extremely important for your mental health. Because you know it gives you a sense of community a sense of accomplishment and you know when you meet people you, you really you know challenge yourself and challenge your brain to and all that, so I definitely think it's a great thing and I’m so glad that I do it. And you know, and I, for me, because I force myself to do it and to keep on edge, because you know with you, you live, you know really very busy lives and all that, and you know and having you know, unfortunately, it takes a lot right to because you know you get into you know getting from your wheelchair to the Chinese culture and then back and then you know all that stuff it's a lot of work but it's a lot of fun work and it's completely worth it, and, and again, you know it's very important for your mental health, you know social skills and all that I’ve been able to meet amazing people you know playing tennis both able bodies and Local user on is the deal has been you know incredible and also you know, to keep your, you know, to keep you healthy, in general, you know it's been great.

Nadine Vogel: Absolutely. I cannot believe that a half hour has already flown by out of time, but then Vincenzo thank you so much for speaking with me and with Norma and with all of our listeners, we wish you the very best of luck with United spinal and in your wheelchair tennis.

Vincenzo Piscopo: Thank you. I will need that a lot.

Nadine Vogel: Maybe one day I’ll ask, and you’ll say you don’ suck anymore. So, I’d like to say thank you once again Norma, thank you for always being here with me as my co-host and we hope our listeners, today you have enjoyed another episode of disabled lives matter see you all soon.

Norma Stanley: Till next time.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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