Episode 14: Special interview with social media sensation, Chris Ulmer 
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Episode 14: Special interview with social media sensation, Chris Ulmer

Wednesday May 22nd, 2019

Jay meets SBSK founder Chris Ulmer at MIT, where he takes part in a unique program focusing on social justice in the digital age. Ulmer shares his inspiring path towards millions of subscribers, and shares with Jay the unexpected tools we can all use to advance our causes through social media

 

Guest: 

Chris Ulmer (pictured above with Jay Ruderman) is the founder and CEO of the non-profit Special Books by Special Kids, which has 1.9 million followers on Facebook and 1.2 million subscribers on YouTube. It started as an idea to have his students become self-advocates by publishing their own books. It soon became one of the world’s greatest advocacy platforms.

 

 

Jay Ruderman: One person can change the world. In today’s world this is not a cliché. When you have a mission and you want millions to join you all you have to do is connect through social media. My guest today is Chris Ulmer, who’s showing the world the true diversity in the human condition, and millions are tuning in.

Announcer: All Inclusive, a podcast on inclusion, innovation, and social justice, with Jay Ruderman.

Jay Ruderman: Hi, and welcome to All Inclusive. I’m Jay Ruderman, your host. Chris Ulmer is the founder and CEO of the non-profit Special Books by Special Kids, which has two million followers on Facebook and 1.4 million subscribers on YouTube. What started as an idea of a small town special education teacher became one of the world’s greatest advocacy platforms. Hi Chris, and welcome to All Inclusive.

Chris Ulmer: Thank you for having me Jay, it’s a great honor.

Jay Ruderman: So Chris, you studied communication and then earner a master’s in special education, and you’re now a social media sensation, with a new Netflix series possibly coming soon.

Chris Ulmer: Fingers crossed.

Jay Ruderman: Let’s talk about the very beginning. Why special education?

Chris Ulmer: That is a loaded question. I don’t like to say that I fell into it because I completely love what I do and I would rather do nothing else, but I did have a bit of fortune ending up where I ended up. After I graduated from Penn State with a bachelor’s in communications I decided I wanted to coach college soccer. So I moved to a small town in Kentucky and I got a job coaching college soccer. Once I started at the university they said they would pay for my master’s degree in education. I was looking at the list of programs they offered and the only one that really stuck out was special education. At the end of the program I had to do the student teaching and just that very first week in there I completely changed the course of my life. I stopped applying for jobs coaching and I started applying for jobs teaching.

Chris Ulmer: As soon as I finished my student teaching I found a job in Florida, moved down, and that’s actually where the blog started a few years later. The school I taught at was only for children with disabilities. At first that was the only environment I was familiar with, so I thought this is great, I can give my individual focus to each of these students, they’re growing and they’re learning so much. But about year two or three things started to happen to where I realized that might not be the best environment. For example, I also coached what you would say is a typical soccer team. We were competitive, we went to other towns. I invited my students out to practice with my soccer team, and I noticed, when they would come out, my players didn’t know how to interact with my students and my students didn’t know how to interact with my players, because they were excluded. My students never interacted with anybody who was non-disabled or neurotypical, and my players never had that interaction either. Everybody had a level of ignorance about them because we aren’t educated about disability in society. So I sat back, and I really reflected on is this the best environment, putting my students in a school where they can’t be part of society? Where it’s just all the children with disabilities and nobody’s learning how to function together, how to interact together?

Chris Ulmer: For that reason we decided, as a team, we were going to create a blog where my students could communicate with our community. We all sat down, and we had a vote. The students all put a name on the board and one of the students wrote Special Books by Special Kids. We took a vote, most of the students voted for that one, so we decided that’s the name of our blog. Well, we had no clue what was to come. Six months into that we had about 10, maybe 15 000 followers, and I got a call from ABC World News. I thought it was a joke at first. The conversation was about two minutes long, and I left thinking okay, best thing that may come from this is that a little satellite branch of ABC somewhere in Florida or Kentucky might air this story, and we might gain a few more followers. After it aired on the world news across the country they put it on their Facebook page. Within 24 hours it became their most viewed video ever. 50 million people saw it in one day, and that just changed everything for me, my students, and many people around the world, because after that video aired our blog went from 15 000 followers to 100 000 in one week.

Chris Ulmer: I started receiving emails from people living all over Florida asking if I could come and interview them the same way I interviewed my students in the classroom, and I thought okay, this is a viral video on ABC, after a few weeks it will die down, people will stop reaching out. But it didn’t. I was getting hundreds of emails two months later, every single week. I opened the email, I typed in the name of my city, and I saw that there were hundreds of emails with that name in the topic. I opened up my email and there was a message from Matt. He had a disability I had never heard of, Dandy-Walker syndrome. He told me that he just finished his first semester of college but didn’t make a single friend. I emailed him back and asked if he wanted to interview. He sent me his address, and he lived five minutes from me. This guy with this deep, passionate story lived five minutes from me and I never even knew it.

Chris Ulmer: At the time I was filming with my phone, so I grabbed my phone, I jump in my car, I drive to Matt’s house. We film this interview where he talks about all he wants is a friend, or a girlfriend, to go to the bar with, to go to the arcade with. I rush home, and I swear I had this moment of just realization and catharsis where I realized that our blog could be a platform and resource, not just for the students in my class but people all over the world to share their stories. That was reinforced when I uploaded the video, and with it we included an email address we made just for the occasion, bemattsfriend@gmail.com. Within a day a million people saw it on our own platform, not ABC’s. Thousands of people messaged Matt. Ever since then we just realized the potential of social media, and we’ve been striving to tell these stories and do as much good as we can.

Jay Ruderman: So first of all I have to say that you have a very unique way about you. Your way of speaking, your way of communicating, your visual presentation is very attractive and you are very good at getting a message across. But to start out let’s dissect it a little bit. Even to start out with 10 or 15 000 followers, in a very short period of time, is a great deal of success. Set aside ABC and the jump that you made from there, what do you attribute that to?

Chris Ulmer: I am so glad you asked that because I think that is important to address. I paid for advertising. The first 10 or 15 000 followers, they weren’t all paid, and they all didn’t see the advertisement, but a large portion of that was because I was paying for the advertising. Facebook rules have changed since then, but I was heavily sharing all of our videos in groups. That combination of network and advertising is what built our first 10 to 15 000 followers. Fortunately, one of them was the woman who worked at ABC World News and reached out for the story. It’s a lot of networking and a little touch of luck in there as well.

Jay Ruderman: I’ve watched many of your videos and they’re very engaging. There’s many young people, or maybe not-so-young people with disabilities who are, maybe for the first time, presenting who they are to the world. Did you ever get accused or how have you dealt with people saying, “Oh this is patronizing”? You as an able-bodied person are hosting this show and people with disabilities are coming on. How do you deal with that? I know that you talked about criticism. Where does that come from? It seems like you’re doing a service to the community.

Chris Ulmer: I think it’s so important to make the distinction between feedback and trolling. It’s so easy to look at feedback and say, “Oh that’s just trolling,” and dismiss it. Some of it is trolling, I’ll admit that, but I like to look at everything through the lens of feedback first. For example, when I first started SBSK we would receive a lot of comments that, “This is patronizing, this is patronizing.” Then I would look at the comments and they had a common thread among them. They would say the way I laughed was patronizing. So I started to watch the way I laughed, and I really paid attention. And I did. I had an awkward laugh, and it could be perceived as patronizing. In my mind, when I’m on camera with somebody, there should be no silence. For some reason I thought that there couldn’t be silence. So whenever somebody said something funny, even if I didn’t perceive it as out-loud funny, I would force that laugh, because I thought that would give the person a feeling of comfort.

Chris Ulmer: Well, the audience was picking up on that, that my laugh wasn’t real and natural, and it was perceived as patronizing. So I stopped doing the awkward laugh. Now, if something is funny, but not out-loud funny, I just smile. The patronizing comments have stopped now. I mean I still get comments saying, “This is wrong, this is wrong.” That’s always going to happen when you have a big following. But you always want to look at it through the lens of feedback first, or else you’ll never get better. If you analyze it, it’s not feedback, it’s trolling, that’s when you just forget about it.

Jay Ruderman: What motivates you? Why are you doing this? Because this is now a life’s mission, and you’re having success at it. What gets you going every day?

Chris Ulmer: I wish I had some deep, philosophical answer. Number one, I just love it. I can’t really define why I love it. Number two, for a long time I didn’t know what I wanted to do with my life, so I think just having a purpose and a mission that is making the world better, I just feel so fortunate to be in that position, and I know that not everybody is able to have that meaning and that purpose while still supporting themselves. I’ll never overlook that and I’ll always take advantage of it.

Jay Ruderman: Tell us about some of the reactions that you’ve had interviewing different people with disabilities and having them tell the story. Because it seems like you’re really enjoying it and it seems like they’re enjoying the process, that this is a fun experience.

Chris Ulmer: It is, it’s so incredible to think that we have a community and I have friends from countries around the world, and the interviews, they’re a joy. I have a rule that I won’t even turn the camera on until I feel like I have a friendship with the person. Because our interviews, they’re often open and honest and raw, and that person is going to be vulnerable. I can’t expect them to do that unless they like me. When I go into an interview sometimes we start it five minutes later. Sometimes it’s an hour later. It might take a little more work when you do it that way but you always leave having a new friend. Having somebody who’s part of your community.

Chris Ulmer: This week I’m here in Boston for the Link20 Program, and I interviewed somebody who I met in Boston three years ago. We’re still friends, we actually play the PlayStation 4, we play Madden together. I’m the Eagles and he’s the Patriots. I always beat him though. But we establish those relationships because I don’t turn that camera on until we’re friends. That’s why I think the blog is successful, because, just like the people sense my fake laugh, they can sense a fake relationship. The audience is intelligent. I think as vloggers we have to give the audience credit.

Jay Ruderman: I think people understand talent and honesty, and you certainly have that. That comes across. I sense what you’re trying to do, you’re trying to expose a community that is often not exposed. Just to say this is part of humanity and I’m going to show it to you. What do you think the people you’re interviewing are getting out of it? What have they told you? What do they get out of it?

Chris Ulmer: This is my favorite thing. Our internet community is a huge community, but you have to remember a lot of the children, and adults now, that I interview live in small communities. Although it has a broad effect across the world it’s also their tight-knit community that’s watching. For example, I interviewed a child named Hayes who’s a wheelchair user, and he said that he just wishes other children would play with him at recess. He sits all alone, he watches the children play, and it just devastates him. He was crying, he was very upset when he shared that. His principal played that video for the whole school district so that they could understand how Hayes felt every day out at school.

Chris Ulmer: Well, all of a sudden, he’s the most popular kid in school, and it’s not in a contradicting way. Nobody knew he felt that way, and now that they knew they could include him. That’s why inclusion is so important. Unless we have these discussions you just don’t know. I used the word ignorance earlier. I think ignorance kind of has a negative connotation attached to it, but it shouldn’t. Ignorance just means you don’t know something. So those who are ignorant aren’t to blame, it’s the system that’s to blame.

Jay Ruderman: Right. We’ve found in our work at the Ruderman Family Foundation that when children are exposed at a young age to disability through different programs like Understanding Our Differences, that it influences them for the rest of their lives. I think what you’re doing will have far-reaching impact, that you probably can’t even see right now. Tell me, you must have so many requests at this point in time to interview people. How do you process them? How do you make those decisions of who to interview?

Chris Ulmer: That is probably the single toughest part of my role, because you want to tell all of these stories. The way people request an interview is through our website. They go on sbsk.org and they click on “Request an Interview,” and once they fill out our whole form it gets sent to my email. We have about 15 000 requests in there and we’re getting anywhere from 10 to 100 on any given day, so it just accumulates and accumulates.

Chris Ulmer: The way I choose is, number one, based on location. This week I knew I was coming here to Boston, well, a week or two ago I went to my email and I typed in the word “Boston.” There was about 100 people in the area who’d requested interviews. So then how do I base, after we’re done with the location? Number one, I look for diversity of diagnosis in disability. I make sure that if there’s a rare disability that I haven’t interviewed yet I want to include that first because I want to be as comprehensive in our catalog as possible. If they’re just disabilities I’ve covered already then I make sure I look at race, I look at age. Okay, well I’ve already interviewed this rare disability, but the last person was white. Here’s a black person requesting an interview. We just want to make it as diverse as possible so that everybody sees themselves reflected in our work.

Jay Ruderman: So how many different types of disability have you interviewed up to this point do you think?

Chris Ulmer: We started just on Facebook and on Facebook alone we have just over 1000 interviews. Now, there’s repeats, like autism, since the autism spectrum is so wide. I’ve probably done about 30, maybe 40 interviews with autism. But I also make a very strong point to include rare genetic conditions that are the only known case. Probably north of 300 different diagnoses, and many of them I didn’t even know about until I read the email. There are so many conditions that are one in ten million that you wouldn’t know unless you’ve encountered somebody with it. I think that’s important to portray in our videos too.

Jay Ruderman: What type of feedback are you getting? Not from your subjects or people that you’re interviewing, their families, but just in general. Feedback you’re getting to your social media.

Chris Ulmer: It’s changed so much over the years. At first, people were skeptical. They wondered why is he doing this? What is his purpose? But with consistency comes reputation. I haven’t changed our mission. I haven’t changed my style. With the catalog of work people now understand what we’re trying to accomplish. The feedback now is outstanding. We so rarely receive any type of negativity, and when it is I still analyze it through the lens of, first, is this feedback? And if not we dismiss it as trolling. 99% of the time it’s just trolling, and that’s only the .01% of the feedback overall. The positivity though is so much more than the negativity. To read the ways our video resonates with our audience is just so overwhelming.

Chris Ulmer: I just received an email this week from a man whose wife was diagnosed with a rare disability and she lost her joy. Her disability didn’t limit her mobility, but she just stopped getting out of bed. This was a whole new world to her and she couldn’t deal with it. She found our videos, went down the rabbit hole, and found her joy again. The husband said that she was signing up for classes, she was leaving the house again, and he sent us a long email and gave us credit for it. I don’t like to take credit for that because I’m not the one telling the stories, I’m just giving the platform and the people I interview, I really give them the credit, but you know, it feels a little good at the same time.

Chris Ulmer: My personal favorite story of the feedback: a mom emails me, and her husband had a traumatic brain injury. This is in Tijuana, Mexico. His name was Luis. Well, they had a daughter too, and after the traumatic brain injury the father’s speech and mobility changed drastically. The daughter then developed PTSD and became scared of her father. She wouldn’t go in the same room because that’s her father and she’s not used to the situation. The mom started showing our videos to introduce the daughter to the topic of neurodiversity. After a while the daughter started going in the room with her father. After a few weeks of that the father started smiling again. He had his joy back. Then they established a bond.

Chris Ulmer: Two years after she emailed me that we kept in contact, and I said if you ever want to tell your story let me know. I know it’s kind of overwhelming sharing your story with millions of people but I’d be so happy to come to Tijuana and interview you. She finally reached out to me two years after that initial email and she asked if I would come down and tell their story. She didn’t know this, but I read on her Facebook page that they were trying to raise the funds for a wheelchair-accessible van, because he’d been stuck in his bedroom for seven months … or seven years, I’m sorry, this is seven years since his TBI. And the roads on Tijuana, you can’t just go outside, it’s all hilly. He’s been stuck in his house for seven years.

Chris Ulmer: Well, we went, we filmed the interview, and then I edited it, and at the very end of it I filmed a 30-second clip just facing my camera at myself and I said, “Everybody, we have this incredible opportunity tonight. They’re raising money for a wheelchair-accessible van and we could give them access to their community.” Within one day we raised over 50 000 bucks, and they’re sending me pictures now. They got the van in January and they’re sending me selfies out at the bar, he’s having a beer, it’s the greatest thing. So not only can we make an impact socially, but through crowdfunding, we have such an amazing community, we can really make an individual impact with a lot of the families we interview.

Jay Ruderman: You are perhaps one of the most positive people that I’ve met. You just exude this positivity. How do you deal with … like I know when you first started this project you were thinking about turning it into a book and you were turned down by 50 publishers. How’d you deal with that? How did you take that from there and say I’m going to keep going?

Chris Ulmer: This might be my own foolishness, but so far it has worked out for me. Whenever somebody tells me, “That’s not a good idea,” or, “That’s wrong,” in my mind I think well, that person’s a fool. For example, when the book publishers turned me down, I couldn’t believe it. I couldn’t believe what a golden opportunity they were wasting. I didn’t understand how they didn’t see it the same way I did. Well, what happened was our videos got popular. We now have this community of 4 million people, and now we have these book publishers contacting us, and I’m not responding to the emails, because these videos … one video we do has more views than a whole book we worked on for years would have in sales. What’s the point of having a book now?

Chris Ulmer: I think positivity … you have to be convinced of it, and you have to work at it, but you have to almost believe that it can’t not work out for you. I know that I’m very fortunate that it has worked out for me and that’s not the case for everybody, but even when it hadn’t worked out, before everything got to the level it was, I would always say to myself would I rather go to my grave depressed and cynical about the world or would I rather go to my grave as a foolish optimist? I thought, you know, even if I’m a foolish optimist I’ll be smiling, so I decided for that.

Chris Ulmer: With the trajectory of our social media we’re accumulating about a million-and-a-half followers across all our platforms every year. The trajectory has been exponential. If this exponential rate of growth continues I see in two, three years we have 10 million followers across social media. Then also I have a dream, a goal, of being on network television and employing actors with disabilities for parts and not having the show be about disability. You know, there’ll be education on disability, but we’re creating a children’s show currently where it’s a show about learning and adventure and understanding how to function together as a community. When we do that we’ll introduce our youth to disability at an early age. I think that’s the most important thing. Introducing the topic of disability when children are young, so it enters their realm of normalcy and it’s not seen as something to fear.

Jay Ruderman: Chris, I really want to thank you for your leadership, because you took an idea, you took a lot of chances, you stayed positive, you kept with it, you’ve really had success, you’ve exposed a community that’s part of our humanity but may not have been visible to everyone, so, you’ve done a lot for inclusion in our society. I wish you to go from success to success. Chris, I consider you a leader for disability inclusion in the digital age and I hope to see more and more of your work in the future. I hope that it expands and you get your success on television and an even larger audience.

Chris Ulmer: Thank you Jay, that means so much to me coming from you, it’s a great honor.

Jay Ruderman: Like you say in your videos, although we are all very much diverse, we have so much in common. Thank you for being with me today.

Announcer: All-Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities, in all aspects of society. You can find All-Inclusive on Apple Podcasts, Google Play, Spotify, and Stitcher. To view the show notes, transcripts, or to learn more, go to RudermanFoundation.org/AllInclusive. Have an idea for a podcast? Be sure to tweet @jruderman.

 

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