This is actually from a Facebook post I made a year ago today.
I joined a rec league basketball team with some friends this year. I hurt my knee within the first two minutes of my first game. I came out, then went back in to try and tough it out…and hurt it again. So, now I’m wearing multiple braces and they seem to be working!
Here’s what I’m noticing: I’m very competitive. More competitive than this old, out-of-shape body will allow me to be on the court. Also, playing on a team is a completely different experience than just playing 21 with a group of dudes. In that case, the only person I’m letting down if I don’t perform well is myself. I put a LOT of pressure on myself to perform and I hate making mistakes that hurt the team. And I’ll admit that there was one shot in particular that I heaved towards the basket last night where I thought to myself, “That had to look TERRIBLE! I’m not representing the limb-different community very well!” Missing shots and turning the ball over are totally normal things, but I’ve internalized such immense pressure to perform from as far back as I can remember.
One of the things I’m learning now as an adult is how often I was told as a kid that I could do everything everybody else could do, which, in most cases was true! What I’m realizing, though, is that I internalized it as “I MUST be able to do everything everybody else can do and I have to be able to do it even better than them to PROVE that I’m not less than.” Ugh. That’s a lot of pressure for a kid. What I would tell little Ryan now is, “Give it your best shot and if you can’t do it, that’s ok! We all have a hard time doing some things. And missing shots or turning the ball over are normal things that everybody does from time to time.” It’s ok to make mistakes. It’s ok to not be able to do something. That’s normal.
I feel like there needs to be a balance. I’m all in on determination and effort and finding creative ways to accomplish things! But we also need to understand that “failure” is a part of life. It’s normal and it doesn’t lessen our worth. Accept it, grow from it and move forward! Let me know what you think!
I had the opportunity to speak with author and illustrator Jeffrey Brown about his new book, “Batman and Robin and Howard” and our conversation, while far-reaching, focused primarily on his choice to be intentionally inclusive in creating the characters in the book – including Pete, who has one hand! I loved hearing Jeffrey’s thoughts about where the idea came from and why it’s so important for varied representation, especially in kids literature.
Please watch the interview and share your thoughts in the comments below. I’d love to hear how you’ve felt included or maybe how your child has felt included by others, too! I’ll be choosing someone to receive a signed copy of Jeffrey’s book, too!
Today I had the opportunity to hangout (virtually) with the 3rd graders at Glover School in Marblehead, MA. WE HAD SUCH A GREAT TIME! And they had such fantastic questions. I think I even went a little over time because I HAD to answer them all. Ha! To see them giving me thumbs up and clapping and even running up to the camera to share pictures they’d drawn…it was perfect.
I’ve missed this so much. And I get to do three more presentations this week (to grades K-2), which I can’t wait for. I love telling kids that they’re awesome just the way they are. Especially the ones who don’t feel that way. It brings me so much joy and I believe with all my heart that it makes a difference.
After today’s presentation, one of the teachers said, “The students were very engaged in the conversation that you led. Many students identify with the “different is awesome” message and it is nice that they can hear it from someone besides their classroom teachers.” And, “Ryan was very personable and relatable for the students. The demonstrations of how he accomplishes tasks were fun…playing piano, catching a ball, etc. The best message was that he likes being different.” Another said, “Thank you! The students were very engaged in your presentation! We’ll be sure to checkout your website!” HELLO!!! 🙂
So, here’s the deal… If you’re in education and you’re looking for someone to engage and encourage your kids to be kind to themselves and others, I’m your guy. Virtual or in-person, please reach out and let’s get connected. I’m ridiculously excited about this coming fall and (safely) visiting as many schools as possible (K-12) to share the message that BEING DIFFERENT IS AWESOME. A perfect way to start the school year by celebrating diversity and encouraging inclusion.
And if you’re a part of a business or organization that is holding an event where you need a keynote speaker who will get your audience to laugh, cry, think and laugh some more…I’m also your guy. Let me know how I can best serve you and we’ll make it happen.
I need to be honest with myself (and you) and admit that it was a big deal to me. I feel like I initially couched my thoughts in the “I’m an advocate for others, so this is why it’s a problem for us” angle and there’s truth in that, for sure. But in actuality, it pissed me off, personally. I went to the gym to try and workout my emotions and started tearing-up on the treadmill like four times. There was something there and it’s important to me that I examine why.
Let’s start here: I’m not offended by much when it comes to my disability. I joke about it a lot. I find what others would likely deem “inappropriate jokes” to be pretty dang funny most of the time. I’m proud of and confident in my abilities to do the things I want and need to do. I wrote a book about how being different is awesome and I travel the country doing assemblies at schools teaching kids to accept themselves and others just the way they are. I’ve become accustomed to staring and rude questions and outbursts from little kids and am able to let them roll off my back pretty easily, for the most part.
So…why was it so upsetting to me when Topps released Jim Abbott’s card with his name spelled incorrectly?
I think it’s about being seen as an equal.
I’ve always loved baseball and played when I was a kid. Every time we played a new team, my first at-bat was nerve-wracking. I didn’t want special treatment. I wanted to prove that I belonged. That I was as good as anybody else. I’d look at the confused faces of the kids in the field as I stepped to the plate and simultaneously think to myself, “Don’t screw this up” and “They have no idea what’s coming.” A fabulous mix of insecurity and confidence. I’d watch the outfielders get waved-in by their coaches and dig my back foot in even harder. I’d watch the pitcher’s face, which was usually either confusion or amusement, and waggle my bat. And almost without fail, I’d get a solid hit. You could see everybody’s eyebrows rise as they thought, “Oh dang, he can hit! Okay okay…” And then it was on.
Same thing happened on the basketball court. Make that first step-back jumper. And the football field. Fly down the right sideline to make a grab and scamper to the endzone. You get the point.
That’s a lot of pressure on a kid! And it sticks with you, I guess. That’s what I’m learning.
Most of the time, whether you think we should or not, people with disabilities feel excluded. Or at least not fully included. We feel marginalized. And when we are included, it oftentimes feels like the people doing so think they’re doing us a favor. And even then, most of the time we aren’t asked what would work best for us, so the ways people try to include us actually make us stick out even more or, in some cases, don’t really even work.
Which is why, I think, it hit me hard when the card came out with Jim’s name spelled incorrectly. In addition to just being plain ol’ disrespectful to Jim, it felt like, “Here ya go! We included you! We didn’t take the time to make sure it was right or anything, but… You’re included!” They still haven’t said anything about it and they haven’t corrected most instances of it on their website even 24 hours later, even though it’s clear they are aware of it because they changed one image. And maybe it’s not fair, but I can’t imagine them making the same mistake with Mike Trout or Derek Jeter or Cal Ripken Jr or Jackie Robinson or Babe Ruth or Willie Mays or Mookie Betts or or or… It is, in fact, literally the only name they’ve spelled incorrectly in the entire project.
I’ll take a second here to beg you to watch Crip Camp, an incredible documentary on Netflix (that should have won the Oscar, but whatever). It will likely make you uncomfortable if you don’t have a disability, but it’s incredibly important to see the very recent history of how disabled people have been treated (read: dismissed) in this country. The people in this film are literally my heroes and my life is what it is in large part because of the difficult work they did.
And listen, I get it. This is all nuanced. Hell, I’m 43, have had a physical disability since birth and I’m still figuring this all out myself! But my request is that, instead of throwing up your hands (however many you have), you’d be open to hearing other people’s perspectives and experiences. And that you’d resist the temptation to say that it’s just complaining or “playing the victim.” If you’ve never walked into a grocery store/a classroom/anyplace there are people and felt eyes all over you because of how you look, I understand this is a foreign concept to you. And I’m glad you don’t have to deal with it, but there are a ton of us who do.
Let me also clarify that I’m not calling for a boycott of Topps or Craola (the artist) or anything like that. At all. I’m not going to storm their facilities or anything. I do believe it was a mistake, but even honest mistakes can and often do have unintended consequences. This is one of those situations where I hope we’re all able to learn together and move forward. Like my friend Tom on Twitter said, “We’re all just people.” Let’s work on treating each other that way.
For those unfamiliar, the Topps baseball card company is celebrating 70 years of making collectible cards with a year-long project called Project 70. They have commissioned 70 artists/creatives to create/reimagine 20 baseball cards in their own style throughout the year. Monday through Friday they release four new cards on their website, which are available to purchase for 70 hours and when the clock hits zero, they print however many were purchased.
While most of the cards have been of big stars on the teams in major markets, today was a big day because, for the first time, one of the artists did a rendition of a Jim Abbott card! A bunch of people on Twitter alerted me to the news and I excitedly went to the site to purchase the card. There it was! And the artist even went with Jim in his California Angels uniform instead of his Yankees one! But as I looked closer…
Do you see it? Not the dinosaur. The name. His last name. There’s only one T.
Ok…so, before anybody freaks out, I want to say a couple things. It’s not the end of the world. I don’t know the artist and he may very well be a great dude. I have no idea. And my guess/hope is that Topps will correct it before they print it. All that said…
There needs to be some accountability here. How on EARTH does EVERYBODY involved in this process miss this?! Topps has been making cards for 70 years and they’ve been making cards of freaking JIM ABBOTT FOR THIRTY OF THOSE. It’s not like he’s an obscure player that they’ve never made a card of before. And as the artist, how do you not quintuple-check the player’s NAME? Especially if you don’t know much about baseball (which is totally fine, but do your research then). It’s just mind-boggling to me that all parties involved got this wrong. This isn’t just a simple mistake. It’s someone’s NAME. Someone who deserves respect and has represented himself, his fans and the sport of baseball as well as anyone in history.
And here’s the deal. I don’t want a pity party. That’s not what I’m getting at at all. And I’m sure Jim doesn’t care because he’s just the best like that. But, there’s definitely an element of disappointment. Jim is larger than life for those of us in the limb-different community. He represents us (this is not news to him; listen to my interview with him here). So, finally seeing him pop up after over a year (they did a similar project last year, which he was not in) and then to see it so badly botched was like, “Of course.” That would NEVER happen with Acuna or Judge or Mookie or or or…
I appreciate the effort. I really do. And I hope they’re able to correct it and that they take responsibility and don’t just sweep it under the rug (though I think that’s what will likely happen). But it’s important to understand that when you try to represent, you need to do it well. Do the research. Take your time. Get it right. It’s really, really important. That’s why it took me so long to publish my kids book, Different Is Awesome! I knew I needed to get it right. It represents more than just my story; it gives a voice to kids and families who are living similar stories and brings some normalcy to their lives.
So, Topps and Craola…I’m asking for two simple things. An apology for getting it wrong and the promise to make it right. I feel like that’s fair. And I’m happy to have further conversation about it if that would help. Thanks.
Just wanted to give a quick update and welcome anyone who might be new here! My book is back and better than ever! Just kidding, it’s almost exactly the same, but it IS available again! lol Good grief, I’ll stop with the exclamation points.
If you haven’t heard of it before, “Different Is Awesome!” is a children’s book I wrote that is based on the true story of when my younger brother Joey brought me for Show-and-Tell. A little boy brings his older brother to school and all of his classmates ask his brother questions about how he lives his life with one hand. Along the way we see that we’re all different in some way or another and that’s…well, awesome!
There are now 10,000+ copies in print, which blows my mind, and you can get a copy on Amazon or, if you want a personalized/signed copy, let me know! Send an email to firstname.lastname@example.org and for $25 I’ll send you a signed copy with a bookmark and a sticker! I might even tuck another awesome surprise in there (while supplies last).
Thank you all for being so supportive over the years. It means everything to me. And remember, too, that I am available to speak at schools, both virtually and in-person (if your school is open), so let me know or put me in contact with the folks who bring in speakers and we’ll make it happen, cap’n!
Friends! Some of you have sent me messages saying that you are unable to get my book from the places you normally get books. And while I’m sorry to confirm that fact, I’m also VERY happy to tell you that it is temporary! We actually completely SOLD OUT of the fourth printing and are currently in the process of producing the FIFTH printing of Different Is Awesome!
I’m SO grateful for all of you and it makes me SO happy to see the book still being such an integral part of so many lives this many years in. THANK YOU! And while it stinks that there aren’t any available right now, the great news is that they should be available by February at the latest!
If you’d like to preorder a copy, I’m doing a special deal where, for $25 you’ll get a signed copy, sticker and bookmark sent to your home once they are available! Click here for more info on how to do that if you’re interested.
Once again, thank you SO much for your support through the years and PLEASE keep those stories coming! Nothing makes me happier than hearing how Different Is Awesome! has impacted your lives.
If you could see my YouTube history, you’d have lots of questions.
For instance, I watch a TON of restoration videos. Old toys, gaming systems, tools, shoes, watches…if it’s in terrible condition and someone repairs it, I’m watching it. I love seeing something that is broken become new again. Something you’d typically throw away given new life. The process is fascinating to me and the result is so satisfying.
One of the things I acquired after my dad died was his snare drum. I’ve always loved it. It’s shiny and sturdy and reliable. That said, I don’t play. Never have. Probably never will. And as I was going through stuff in my garage a few months ago (because what else are you going to do during a pandemic?), I saw it sitting on our top shelf and realized that it’s just been sitting, unused for probably 50+ years. It went from my dad’s basement shelves to my garage shelves. And there’s nothing inherently wrong with that, but…
I started to think about how I’d bring it back to life. How could I get it to someone that would restore it to its former glory and actually use it again? I was nervous, but I put it on Facebook Marketplace and Randy reached out. Randy lives about an hour and a half north and plays in several different bands and was interested in adding my dad’s drum to his collection. I told him that I didn’t mean to make things awkward, but that it was important to me that it went to someone who was going to make it like new again and actually use it and that I would love to see pictures.
Randy was more than agreeable. He drove all the way down and met me and we talked for a bit. A few weeks later he sent pictures and, well, it just made me so happy.
And here’s the part you probably anticipated was coming.
I can’t bring my dad back to life. I can’t make him new again. Today marks six years that we’ve been without him and it still sucks. It doesn’t hurt as much, for the most part, but it still stings from time to time. I’ve noticed that I’ve wanted to just hangout with him recently. Like, just sit around drinking a beer and talking about sports and the kids and whatever else. We didn’t do a ton of that. I wish we did. And I wish we could now.
I bristle a little when people say that time heals. It certainly makes things different. And it’s definitely a part of the healing process, but time alone can’t heal anything. I’ve found family, friends, focus and…ferapy…has helped most. Ok, the alliteration didn’t totally work, but it was close! Seriously, being able to talk about things with friends, family and a good therapist has helped me get to a good place and focusing on the things that are important to me helps keep me moving in the right direction. I know that’s what my dad would want me to be doing.
So…Dad. I miss you. I love you. And while I know I can’t bring them with me and someone else is banging your snare, I’m gonna hang-on to your drumsticks.
In July of 2017, it was my honor to be the keynote speaker at the National Foundation for Ectodermal Dysplasias Conference in Washington, DC. NFED exists to “empower and connect those touched by ectodermal dysplasias through education, support and research.” My friend Josh Sundquist passed along the opportunity from them and I was so glad he did! They were a group with which I was unfamiliar, but the connection I made with them upon my arrival was swift and deep.
I remember that I got to my hotel pretty late and decided to order a drink and a dessert from the bar in the lobby. As I waited, I noticed a group of kids walking in and, to my surprise…they ALL had hands that looked differently than I was used to. I started to get excited and thought to myself, “This is amazing! Should I say something?! What are the odds they would be at MY hotel?!”
Turns out the odds were 100% because I WAS AT THE HOTEL WHERE THE CONFERENCE WAS BEING HELD and totally forgot. *head slap* See, ectodermal dysplasias can affect people in a multitude of ways, but one of the most physically obvious is how it can affect their hands. Instead of having four fingers, oftentimes they have two, looking somewhat claw-like. I remember sharing that story during my talk and everybody laughing and smiling. I learned SO much that weekend and had such a fantastic time gaining new perspectives from kids and adults, families and medical professionals, about physical differences with which I was unfamiliar. What we did share, though, was how those physical differences are perceived by others and how we can navigate a culture that oftentimes views physical differences as weaknesses instead of strengths.
So, when I started seeing social media posts about this new movie on HBO called The Witches and their choice to give Anne Hathaway’s character “scary hands” that look like many of my friends’, I thought of NFED. And my friend Meg Zucker and her boys. And Alex Barone. And it made me angry. And sad.
“It’s a fictional character, Ryan. Relax. It’s not that big of a deal,” you might be thinking.
Let me respond with some of my initial thoughts about why this is so problematic. Honest to God, my first thought was, “You’re telling me that NOT A SINGLE F***ING PERSON INVOLVED IN THIS MOVIE thought that this could be an issue?” Not one person thought, “You know, people actually have hands that look like this and we might be furthering a stereotype that they’re scary by choosing to do this. Maybe we can think of another way to make her scary and evil.” Representation continues to be a problem in Hollywood. Not only on-screen, but BEHIND the scenes, at the tables where decisions are made. In the rooms where writers write. As my friend Nicole Kelly says every chance she gets, “Nothing about us without us.” There MUST be increased involvement with the disability community. There simply must be.
Physical disabilities are not a prop. They are real and they affect real people in ways that you will likely never understand if you don’t have one. My friend Nick Newell posted on Instagram about this and the responses are littered with rude, ignorant comments. Nick’s concern is not so much for himself as he’s developed a thick skin, but his concern is for those who haven’t. Children who have to deal with other rude and ignorant children and their equally as rude and ignorant parents.
While standing in line at my local hardware store not long ago, a boy about 10-years old told me loudly that my arm “is disgusting.” I tried to take in stride and asked if he had questions and he continued to say things like, “No! Your arm is BAD! And GROSS!” His mother did nothing. She stood there, writing her check, not saying a word. When they left, I apologized to those behind me for the awkwardness. Let me say that again… I, THE ONE WHO WAS BEING TOLD THAT MY BODY IS DISGUSTING AND GROSS, WAS APOLOGIZING TO THOSE AROUND ME BECAUSE THE MERE FACT THAT I EXIST CAUSED THE SITUATION. This shit happens to people on a daily basis and just because you don’t see it or experience it doesn’t mean it isn’t true.
Will this movie cause people to think that anybody with hands like hers is a witch? Unlikely. Will it help people to normalize interactions for people when they see someone with hands like hers? Again, unlikely. Is it the end of the world? Obviously not. But, could it and SHOULD it have been avoided? Absolutely.
Bottomline, I believe they made a poor decision and it will likely have more negative effects than positive for people who have ectrodactyly. And that’s a shame. Hollywood needs to do a better job of being mindful of disabled people and involving them at every opportunity. You can read more about my thoughts on this and listen to a podcast where I expand on it here if you are so inclined. I’m hopeful Robert Zemekis and Anne Hathaway and everyone involved with this will learn from the experience and intentionally make better choices going forward.
I would also suggest not watching the movie. The only way Hollywood will listen is if they see their bottomline affected by us, their audience. And hopefully they’ll hear our voices as long as we keep talking about it.
Six years ago today my dad had major heart surgery to repair a tear in his aorta.
Things would never be the same.
I might have shared this before, but it’s on my mind today, so I thought I’d do so again.
When my dad’s surgery happened, it was scary, but it went SO well. For us, at least. The repair was successful. I remember how difficult it was for him to be stuck in that recovery room for so long. I remember when they finally released him and he cried on the phone with me because he was so happy. He wasn’t really a crier. Kind of a case of, “like father, NOT like son.” lol I remember him actually saying to me, “I don’t even know why I’m crying, Ryan!” I told him, “Well, you had MAJOR HEART SURGERY and have been in the same room for over a week…it makes all the sense in the world to me!” I remember how many people shared their love and prayers and how happy we were for him to have another chance at life.
Looking back, though, it’s easy to see how things changed.
There’s a part of me that feels like it was the beginning of the end for my dad and that makes me really sad and angry.
I remember when he called us all in before his surgery to tell us to take care of each other. To be nice to each other. That we would be fine if something happened. Part of me thinks that he was sure he wouldn’t survive the surgery and that he had come to terms with it. That he was saying goodbye, not just in case, but because he thought it was time.
Then afterwards, during his recovery, he just couldn’t seem to comprehend this new life he was living. He didn’t seem to know what he was allowed to do and what would be too much. He talked to his brothers and sisters frequently about his awareness of his own mortality. He couldn’t comprehend how others who had major heart surgeries were able to “live normally” without constantly thinking about how their heart could stop at any moment. After his suicide, we found out through the note he left that he had been living with pain and fear and “wonder in his chest” for months.
I will always regret not questioning him more when he’d respond to my “How’s it going?” with “You know, gettin’ a little better every day.” I know he wanted to believe that, though, and I’m sure some days it was true. So, me questioning more probably wouldn’t have made much of a difference, but…I still regret it. It’s just who he was. He was a strong man who didn’t want to be a burden on anyone. Which eventually became too much for him to bear. At least that’s the way I see it. It got to the point where he couldn’t handle the pain and wonder and didn’t want to burden anyone else, so he took control of the problem in the only way he thought made any sense to him. I know he didn’t want to and that he felt terrible about it because he said so. But, it was also what he felt he had to do.
And that’s why, when I see those Memories on Facebook about his successful surgery, it’s bittersweet. Because, for me, it was the beginning of the end. And like I said, that makes me sad and angry.
I was actually thinking today, I never saw my dad’s scar. I don’t know what made me think of it. I just really wish he was around to show us. Maybe that’s weird, but I can just imagine him making stupid jokes about it. I’d take that over having to write this post any day.
So…that’s it. That’s how I’m feeling today. I know it’s a lot. Thank you for letting me share it. Thank you for caring about me and allowing me to process. I’m sure I will continue to do so as the years stretch ever onward. And I want you to know, I appreciate you.
P.S. If you’re feeling scared or in pain or embarrassed or like a burden…that’s ok. But please, reach out to someone for help. Even just one person you trust. It can make all the difference. You can also call 1-800-273-8255 for immediate help. Love you.