Everybody who has a personality enjoyed saying ‘May the 4th Be With You’ this past week. It’s a take on Star Wars ‘May the Force Be With You’! In a way I feel God is pushing me to discuss another issue I and many others tackle with FORCE daily!
Skywalker fought Darth VADER , while many real people fight VATER Association! Have you ever heard of it? If not, you are not alone! Personally, it’s kinda wild to be considered a once in 10k-40k newborn chance to be born with VATER. Yes one baby out of a maximum of 40k births could be born with VATER.
I wince when I’m asked ‘what were you born with’. I don’t even like to think I was born with a condition. However, my face beams when I discuss having VATER and tackling it with FORCE! VATER has been the reason for a life-saving colostomy bag and not even that brings me down! Most definitely God has been the reason why I have been given the ability for rollerblading with one leg came to be , but saddling my body with VATER has built me stronger!
On a recent podcast, I had the pleasure of welcoming Luigi ‘Squeegee’ Castillo. Luigi is a New York Yankees batboy alum and he takes us behind the scenes of that 90s clubhouse at a time when all the Yankees did was win World Series after World Series! He wrote about his experiences in ‘Clubhouse Confidential, A Yankee Batboy Insider’s Tale.
Take a listen to his story and how, with love and support from ‘The Boss’ George Steinbrenner, Ray Negron and David Cone, he adapted to become a beloved member of that Yankees clubhouse !
‘I want you to be introduced to a woman named Tara Kiene. She’s the president CEO of Community Connections and in the Durango Herald she writes this incredible piece about changing the perceptions of the disabled community.
I think that is always what we need to do. We need to continue to smash stigma, but listen to how she writes about it. This is so cool. She wrote a great story. And what I would like to highlight are a couple of points that she made. ‘By focusing on people and ridding them of their disabilities, we discount the capabilities they offer right there.’
I’ve often been encouraged to get a prosthetic like personally that has always been like someone saying, why don’t you do this? And I tried it and I wanted to try it on as an adult. But then I thought that wouldn’t be the real me, that rollerblading would stop if I had a prosthetic leg. And more importantly, it would not be me and who God made. So there’s a lot of reasons why I enjoy rollerblading around the city. I enjoy not having a prosthetic because I don’t believe in ridding anything I believe in overcoming it.
I believe in continuing to love it, roll with it and continue to roll on with it. Let me put it that way. The whole idea that we can reshape reframe abilities and disabilities is great to hear. I want to hear more of that. I want to hear you’re this and we’re going to make it so that you can do this. We’re going to love on you and you’re going to do it. That’s how luckily my family raised me. I feel, and that’s how my friends were raised in the disabled community.
She said many people with learning disabilities find that they have struggled with reading. And because of that, they developed extraordinary memories and that benefits them in their later careers. Also, can we stop hiring people just because it feels good. It’s a feel good story. Hire them because they deserve to be hired. Hire them, not just to talk about diversity, or to meet a quota, hire them because you see something in them that maybe someone, a business down the road doesn’t see in them or refuses to seeing them hire them. Because you know, they can do a good job. Not because it’s some nice community service award.
The disability community is more than inspirational. It’s more than a community service effort to get them included. We’re just here we are amongst you. And the moment we say, yeah, he’s being hired or she’s being hired because of what she can do. Not because she’s overcoming what she can’t do. We’ll be in a better spot. The more we say I’m hiring you because I want to, I know you can do something. I know you’re working on whatever you’re dealing with and I want to see that work in my company, not to get some newspaper article about how this company hired this person. I mean, it’s nice, but that’s not why we exist.
The community and the adapting exists because we choose to exist. We choose to adapt to whatever we got going on.
And I hope you realize that. I hope you feel it. I hope if you’re a business owner listening to this, that you feel even more inspired to bring on people differently, abled, disabled people, whatever you want to say. And not because you want to feel good about yourself because you know, they can do the job. You know, they are equal opportunity for a reason, not just because it says so on some plaque, but because you know that they can do it. And I’m glad there are programs to help people who get frustrated, who get down, who don’t know if they can do it. There are programs there to help. I love that, but you know what I love even more. The fact that companies can take a risk on someone, not the average, Joe, not your regular someone who’s been stigmatized.
Those who see the stigmatizedfor more than just what’s on the cover. It takes a community effort, but there’s also no doubt that community embraces not memorializes it or highlights it as some great community service. It should be accepted that people with disabilities can do something amazing. It shouldn’t be some shock to people. It shouldn’t be like that meme that says it takes one disabled person to screw in the light bulb, and five others who are inspired by it. It shouldn’t be that way.
Let’s stop as a society assuming disabled people can’t adapt. Can’t learn. Can’t relearn. Can’t restudy. Can’t get themselves back on track, but let’s hire because we know they can do great things and not just for a photo op, but for the betterment of a company. Kudos to Tara Kiene for this article. I definitely want to bring her on and see what we can do and see how we can cover neurodiversity. We’re adapting, we’re re-framing. And we are living. Come with us as we live together in these crazy, crazy times.’
Alex Garrett: I remember when you were just a little kid running around the campus at Queens college and doing the athletics. Now you are in college yourself, first of all, tell us your journey and then how things have been.
Robbie Twible: So right now I’m at Farmingdale State college. I’m studying sports management and I actually just completed my first semester today. It felt like Groundhog day with the COVID.
Alex Garrett: If you’ve ever been to Queens College Softball on EB Awareness Day, that’s a day, we honor Robbie,. How are you doing with the EB? And maybe give us a little bit about the condition as well as how you’re overcoming that to do college, to do life, to do the podcast.
Robbie Twible: Yeah. I was born with Epidermolysis Bullosa. So like Alex said EB for short. It’s a rare genetic skin disease where I’m missing the glue that holds the layer of the skin together. So any friction or any, any trauma to the skin comes off very easily. Over half my body is missing skin. I’m doing well. I’m blessed because there’s like clinical trials, over at Stanford university in San Francisco. They injected collagen seven into the skin. They actually grasped it and that’s, and that’s, uh, I’m still in a process of that as going well, you know, I just take it day by day.
Alex Garrett: Talk about Ellen, I mean, she was, she’s a very influential part of your life. So she had you on, am I right?
Robbie Twible: Yes. I have to mention Justin Timberlake. Such a nice guy, came backstage and met with me for 10 minutes. Talking Broadway and just reall nice. And, uh, that would never have happened without him. It was my dream to meet him and to meet Ellen and to be on her show. His publicist has her friend, a producer on the show and she told him my story. And so my mom got a phone call from the Ellen DeGeneres show saying, Hey, uh, we heard Robbie’s story. We would love to have you come down here just to have you in the audience.
Robbie Twible: it was a big commitment for my parents because they had to pay for, uh, travel and hotels. So just to have me sit in the audience that was, you know, in their mind, that first was a big commitment on their part, but thank God we did. They hid me in the green room and they were prepping us for questions. They were prepping us and told us they were going to do it as we’ve just been featured on EllenTube. We went into the audience. I knew something was up when Ellen went on and invited me up with my family. And it was a fortunate experience. Uh, I’ll never forget. And she actually even invited me back for her famous probate giveaways, which was even, uh, another experience. That was amazing.
Alex Garrett: You mentioned your parents and obviously Rob, um, has been a very good father and you’re your mom as well? A great mom. What does, what have they meant to you in your life so far in your very young life? I should say,
Robbie Twible: Oh, everything. Uh, my parents always support me and they’re always there for me and they care of me. I don’t have a nurse. Without them. I, you know, I really wouldn’t be where I am today. I would not, I would not be in a good position. They are on top of taking care of me and my sister.
Alex Garrett : There’s people out there who are overcoming daily and Robbie Twible is no exception now for the fun part, your podcast. Tell me about it.
Robbie Twible: So I started at the beginning of the pandemic. It’s called Robbie interviews. It’s found on YouTube and it’s basically like a zoom interview. 20 minutes each person, which is sports people, uh, like, basketball head coach of Hofstra. And Iona head baseball coach, Paul Panik, but then, uh, we transitioned to, Survivor season 39 Winner, Tom Sheehan. I’ve done 11 of them, uh, as the episodes go on, I’m sure you find this out too. It’s hard to get people to come on. Uh,
Alex Garrett: I know Robbie you’re out there, any organization that you think you could recommend that you’ve worked with as well to help the cure for EB.
Robbie T: Yes. It’s called EDRP, and they really do tons of research. They are really the backbone of research . Uh Keneally they are funding many, many projects that are really looking good, you know, getting cures. So I would, if you could donate that really mean a lot. And for all the other kids who suffer from EB, that would be great.
Over the years , many have paved a path in my life for me to follow along right up to this blog post. That is where the backstory of ‘Adapting With Alex ‘ starts. Because of all the kindness, love and opportunities from all around, I can say God has me here writing you tonight and looking to pay it forward through this network!
That kindness, love and opportunity for life was firstly created by my mom and dad and entire family! They believed in that NICU fight that we would get through it, 77 days later we did and we DO nearly 30 years after the inaugural January release from the NICU.
My family wasn’t alone in that belief, the NICU unit and the amazing Doctors and nurses at then- St. Luke’s Roosevelt cared and made sure round the clock care was there for those in the NICU. We as a family are very blessed to have that connection, which we maintain ever year by visiting the remaining nurses on 10/20, my birthday.
Physical adaptations were provided over the years from the encouragement to walk to a walker to the uniqueness of the rollerblade. In between those years and beyond, our family has been provided numerous crutches thanks to WalkEasy each year. WalkEasy has even helped us when the crutches would break down due to active use! We were provided multiple tries at a prosthetic leg by Charlie our orthotics maker through the Henry Viscardi School. Eneslow has helped us with adaptive shoe insoles over the years as well.
The brainpower of my father, the approval and support of mom and my stepdad Vic as well as my family paved the way to rollerblade, that to me is the most natural adaptation ever made starting at the age of eight. Not only has it saved my foot YEARS, it’s also brought me to different experiences which I’m sure our tiny cluster never thought imaginable.
The social adaptations were made available to us through the love and care of so many and ramped up soon after the wheels took off in 1999. Adaptive sports has been my true love! I want to thank my dad for installing running into my life at the age of 2.5 at NYRR Pee Wee Races. The New York Road Runners also helped us and many in other groups like Achilles make running adaptable!
I want to thank the Henry Viscardi School for giving us all a chance to be adapting in baseball, football, hockey and wheelchair basketball! Our gym coach, Mike Sweeney is awesome and wheelchair basketball lead Joe Slaninka as well as Joy Krebs have inspired us to stay adaptive and active for all these years!! Anthony Fitzgerald, HVS associate, runs adaptive football at Eisenhower Park, for those interested!
I want to thank the likes of Susan Maxwell, Nassau CountyGames for the Physically Challenged founder the last 30+ years at Eisenhower Park and Mitchel Field. Volunteer Dominic introduced my dad and I to the competition at the age of 4 and 5. The Games family has grown, and I highly recommend you check us out if you have friends or family that might find it time to get out there, compete and enjoy a late May, early June competitive weekend! (https://nassaucountypcgames.com/#:~:text=With%20the%20safety%20of%20our,join%20us%20again%20in%202021.)
The thanking doesn’t stop there, but I’ll make this a series because I want to hone in on the adaptive sports for now. Having been born with just the one leg, seeing amputees overcome having an ENTIRE limb removed and kick ass in life, is what has inspired me to start ‘Adapting With Alex’. I’m ready to pay the adaptation opportunities forward to those who are still unsure how to adapt, or afraid to!
It takes a network, and I’d LOVE you to join this journey whether you are a company that helps people adapt and want to share your story OR have a story of your own of adapting, I’m all ears !