Born Just Right Read online

  I only had a weekend to research and prepare my speech. We weren’t allowed to say anything about the trip to our friends or online until the day before it went on TV. I practiced as much as I could, but I started to get really nervous. I had never talked to so many people who make big decisions with money! I really didn’t want to mess up.

  My mom and I flew into the city the night before the taping of the show. Even though I’d been to New York City in the past, my mom wanted to be sure I had a little fun before the big day. We walked into Times Square and acted silly while shopping and eating good food. It was way past my bedtime by the time we got back to our hotel, but my mom kind of helped me get some of my nervousness out of my system.

  The day of the show, the other kids and I had a chance to rehearse on the set of the Rachael Ray Show. We didn’t get to actually meet the sharks or Rachael until the recording of the show. I got to go to a makeup room and get my hair done. I love adding extra curls in my super-straight, long hair. (My mom tries to add curls in my hair, but she never does it very well.) It was a lot of fun to get pampered, and it helped take some of the butterflies out of my stomach leading up to the show.

  I don’t think I’ve ever been as nervous as I was just before I walked onto the set. I was the first kid to present, and I couldn’t stop worrying about what would happen if I messed up! The stage manager helped me feel less nervous by jumping up and down with me right before I walked onto the set. Thank goodness, it went really well. I had fun! I showed off Project Unicorn and a second invention that I’ve worked on. The sharks said they were impressed, and they even told me to keep working on my inventions. They thought I could actually sell Project Unicorn in stores! When I was done with my presentation, I went backstage, and my mom was there to hug me. I was shaking! I have never felt so proud and exhausted at the same time.

  After all the kids presented their inventions, we found out we all won money to help fund our inventions that we’d just pitched! When the segment was done, we got to take a few pictures with the sharks and Rachael. It was super fast. Everything wrapped up, and before I knew it, my mom and I were in a car going back to the airport!

  I went back to school and didn’t talk about the experience. That felt a little strange. Luckily, it was shown on TV just a couple of days later. When TV commercials started talking about kid inventors, my life got crazy in a whole new way. Reporters at newspapers and TV news stations interviewed me. A big clip of my part of the show was shown on Facebook. It felt like a big tornado of excitement had taken over my life.

  The day the kid inventor segment was shown on TV, I had to go to school! I didn’t get to see it until I got home. Suddenly, my mom was juggling a new collection of interview requests. It seemed like I had a different interview every day after school. I didn’t really talk about it very much at school because I didn’t want to make it into a big deal. I figured if I didn’t talk about it, the kids at school couldn’t make fun of me or think I might have a big ego about it all. I am really proud of my work, but I don’t want people to judge me more than they already do because of my arm.

  The whole experience was really fun. I’m so glad I had a chance to go on a national TV show to present my idea and raise more awareness of limb differences. It feels like our life has not calmed down since. I’m excited I got to be on TV to show kids and adults that you can just be you. I didn’t hide my difference—I showed it off! Even better, my limb difference wasn’t a big deal. I had a chance to just be me and show off something cool without even needing to explain my physical difference.

  The prize money I won on the Rachael Ray Show made it possible for me to buy my very own computer that is powerful enough to help me work on designs. That’s a big deal because when my mom isn’t in town because of work trips, I don’t have a computer that works with the software I like to use. Now I can design whenever I have time. Just like sports and music practice, I know I can’t get better at design without working on it as often as I can. With all my activities, that can be tricky. But luckily, my meetings continue with Sam. I also find some quiet time every once in a while to work on new ideas.

  During the show, I also showed off a T-shirt that had the Project Unicorn logo that Sam and I created on the front. One of the local T-shirt makers in my town came up with the idea to put the logo in glitter on a shirt. We started selling the shirt on our website! We also started selling some of the other shirts that I’ve used through the years that help me feel strong. It’s another way for me to design, just in a bit of a different way.

  8

  THE DESIGN PROCESS

  For me, learning design is not hard, but it does require time. I was so lucky to attend the Superhero Cyborgs event, where I had five straight days to just brainstorm and build. It was the first time I really got to sit down and think about building something based on my own body, experiences, and interests. Have you ever had a chance to do that? I know each of the experiences I’ve had in my life so far has set me up to create amazing things. I just never had a chance to tap into my brain that way before. You can do it too.

  Let me show you how Project Unicorn started out as a fake hand with a glove full of glitter and slowly turned into a really cool-looking unicorn horn that shoots glitter.

  First, I needed to come up with an idea. I had a chance to bounce ideas off adults and kids who weren’t part of my family. That created a judgment-free space to just throw fun ideas out there. I don’t think you have to design away from your family, but changing your environment sometimes can help you get extra creative—and people won’t just say they like it because they are your parents or your sibling!

  Before we got too deep into our ideas, we got to test out how computer-aided design (CAD) works. I created a house with a chicken head on top. Why? Because I could! That’s the fun thing about design. If you can make it, you can test it out and see what happens.

  We also talked about the goals we wanted to reach before we walked away from our experience. I wanted to build something awesome and have fun. One kid said he wanted to create a hand with blades like the comic book character Wolverine. (Whoa!) Another kid wanted to get better at using 3-D printers.

  Next, we started talking through our ideas as a group. When my friend Sydney discussed wanting to shoot water out of her little arm, I knew I also wanted to shoot something. Glitter just seemed to be the right thing for me. We each were asked to sketch out our ideas.

  I envisioned a 3-D printed hand that shot sparkles. (I also didn’t really know how to spell “sparkles” at the time.) With my concept, I put together a prototype. It included a hand and an arm that I cut out. I filled a plastic glove with glitter, put it over the hand, and tried to figure out how I could shoot the glitter from the fingers. It looked pretty funny. But this was when I decided to call my idea Project Unicorn. It didn’t even look like a unicorn yet, but it made me happy, like a unicorn!

  This was when I had a big realization. I knew using a 3-D printed hand design wasn’t going to work. It hit me that I didn’t need an actual hand to shoot glitter! So instead I decided to build something around my arm using CAD. I had scanned a plaster version of my arm, and I was able to build a cuff that fit. Here’s what my design concept looked like at first. I thought I might want to shoot glitter from both arms.

  To start, I attached air puffers combined with Nerf bullets directly to a 3-D printed cuff. It wasn’t very stable, but it kind of worked.

  I brainstormed a few extra ideas and came up with a starburst design that could hold the puffers in place.

  I took the concept I had with the air puffers, strings, and Nerf bullets and added it to the starburst. I threaded the string through the starburst to keep them in place. The final result created a glitter poof when I pulled the strings. It was cool, but I knew if I had more time, I’d create something even more powerful.

  I had a lot of fun with that version, but I was motivated to keep working on ideas. That’s when I teamed up with my design partner, Sam Hobi
sh. We got to know each other, and Sam challenged me to come up with all kinds of different ideas we could possibly add to Project Unicorn. While I created different design ideas, Sam was testing different ways to force the glitter to spray. He tried CO2 cartridges, but he realized they shot too strong and might hurt someone. That’s when we worked on the idea of using compressed air.

  At first, we tried to go back to my idea of using a 3-D printed hand and combine a way to spray glitter out. I got so aggravated trying to get a 3-D printed hand to work, but we needed that failure to keep thinking of better and more fun ideas.

  We returned to creating a tool that could spray and didn’t look like what people think I need. We had a chance to come up with a really fun idea—and we did! When Sam and I met in person for the first time, Project Unicorn turned into a unicorn horn! It would shoot tiny plastic vials of glitter with the help of tubing and compressed air. We showed this version off at Maker Faires and other big events.

  The cool thing was that our designs weren’t done. Sam and I continued to meet online and talk about what worked and what didn’t work. That’s when we came up with a totally new way to shoot the tubes of glitter.

  Illustration by Sam Hobish

  I let Sam know that the idea of loading the glitter one tiny plastic container at a time was really annoying. I usually asked my mom to fill up the containers. It took a long time to set up, and she was super annoyed. So the concept turned into a new idea where I could fill a huge container with glitter. It still connects to an air tube and compressed air, but it’s so much more fun.

  I am so proud of this version. The 3-D printed unicorn horn looks supercool. I love being able to shoot a lot of glitter all at once. But there was one more problem: we were using glitter that wasn’t good for the environment. The longer I talked about Project Unicorn, the more my mom and I heard about how glitter is a micropollutant. That’s why we teamed up with a biodegradable glitter company, BioGlitz. Now Project Unicorn isn’t harming the environment, and it can’t make anyone unhappy. Unless they just don’t like glitter.

  9

  BE THE CHANGE

  Project Unicorn helped me speak up about what it is like to have a disability. Some people think “disability” is a bad word, but for me, it has opened the doors to all kinds of new opportunities. I know that hasn’t happened to everyone who is disabled. I also know that when some people see me, they automatically think I don’t have abilities just because I don’t have a hand. I realize my experience is the same as but different from so many other kids with a disability. That’s why I told my mom that I wanted to keep speaking out and to help other kids have experiences like mine.

  I just want to fit into a world that usually doesn’t see a lot of pictures and videos of people who look different. When they do share pictures of people who are different, it’s usually because that person happens to be good at something. Usually it’s sports or acting or modeling. I want to live in a world where a person who may not have all of his or her limbs can do things well, and it doesn’t have to be big news. Imagine if a limb-different actor or actress was on a TV show, and it was just a normal thing. Disabilities are everywhere in the world. It doesn’t have to be a big focus every time in the media. People with disabilities can be treated like anyone else if the people who write and put together TV shows and movies just include them instead of making the disability the focus of a character.

  Plus, there are other ways to be successful.

  I think that’s why my mom is trying so hard to encourage me to do things beyond sports and theater. Sports are a lot of fun, and I know it all makes me stronger. I love performing. But people who are disabled can become so many things. I’m finding ways to show how a limb-different person can get involved in STEAM (which means science, technology, engineering, arts, and math) and design. And who knows what else? The only thing that can stop us is our attitudes. My attitude is to just keep trying!

  I kept trying with design after I came up with my first glitter-shooting idea. I didn’t stop after that first camp. I kept learning every day. I couldn’t have done that without the help of my parents and Sam. He would meet with me even on days when I just wanted to eat a snack and go have fun with my friends. All the adults who saw my interest spark after I created my first glitter cannon jumped in and really supported me. I want to help more kids get that opportunity.

  Now that I have some design experience, I’m trying to take time to learn so much more. Along with getting the chance to get hands-on experience building my latest helper arm with Mr. David, I am starting to meet other types of designers. I was invited to a fashion innovation studio in New York City to see how a clothing company designs for a season. I met with fashion designers and got to share my thoughts. The grown-ups in the room let me give some different views on a collection of activewear. I never doubted myself when we talked about the clothes. I trust my opinions, and I love sharing my thoughts and ideas. I don’t know if I would have been able to do that before I jumped into Project Unicorn.

  Each conversation I have is a chance to change thoughts about disabilities.

  PETITION FOR CHANGE

  Have you ever owned a toy that looked like you? When I was four years old, my mom bought me an American Girl doll and gave me an outfit that matched the doll. She thought we looked really cute together. She mentioned how the doll and I matched, but I was confused. I thought I understood what “matching” meant, but my doll and I didn’t match. She didn’t have one hand like I do. I asked my mom why my doll didn’t look like me, and she told me she hadn’t thought of it that way. I had never seen a doll with a limb difference. I felt like I might never see a toy that matched me.

  That experience turned into another big idea, which I hope will help kids understand differences a little better. Dolls are a key to making a change. I talked about this idea during one of my TEDx Talks. I think dolls are an important way for all kids to see disabilities in a different light. My T-shirts were another idea I had to use a simple message to get the word out about physical differences. I am trying really hard to make sure more people see limb differences out in the open so they won’t need to whisper and stare the next time they see a kid who may not have hands or feet. There are so many kids and adults in this world who have disabilities. It shouldn’t be something that’s scary. Kids just need to understand disabilities more when they are little. That’s why I started a petition to ask one of the biggest doll companies to consider offering limb-different dolls.

  My petition is on a website called Change.org, and I made a video explaining how I love dolls, but I’ve always wanted to see a doll in toy stores that looks like me. If you have ever walked into an American Girl store, there are a bunch of displays of Truly Me dolls. They are supposed to look like you and me. The dolls come with outfits you can wear to match your doll. American Girl sells a lot of extra things to go with a doll so it can look more like its owner. There are glasses and earrings, crutches, wheelchairs, and even allergy-alert bracelets and insulin pumps.

  One of the most obvious differences you will see with some of the American Girl dolls on display is that some of the dolls don’t have hair. Those dolls are available for kids who are going through cancer treatments, which is super important. And they have expanded the line to be inclusive of different skin tones, which is also so important for representation. But none of the dolls sold by American Girl have limb differences. I’d love to have an American Girl doll look like me. But even more, I’d love for all the kids who walk into a store to look at the displays and see how some of the dolls wear a prosthetic leg or don’t have a hand. Toys represent the world that we see every day. Why can’t our dolls match reality? I think a lot of people agree with me, because the petition has more than twenty thousand signatures, and I don’t plan to stop talking about it.

  Since I started the petition, I had some opportunities to spread the word about what I think of American Girl dolls. I got to talk to some different journalists and even did
a live online show with CBS. A story about my petition got onto the front page of the Kansas City Star! I just don’t stop talking about it. I think that’s why I’ve gotten so many signatures.

  Not long after my petition started, a company in New York that makes prostheses started offering a free service to upgrade the dolls for free for any child who has a limb difference. Parents just have to send their dolls to the company, and it is returned wearing prostheses. My parents sent my Truly Me doll to get the upgrade, and it is so cool to finally have an American Girl doll that really does look like me.

  About a year later the Vermont Teddy Bear Company made a big step forward for limb-difference toys when it started selling limb-difference options in April 2017. When you click to purchase a bear, you can pick the different type of limb differences. It is amazing to look at the order form online and see options like “left above elbow” (that’s my type of limb difference) and “right below knee.” People can order bears that match their bodies. When the bear arrives in the mail, it actually has smaller arms or legs! My three-pawed bear is really cute and has a sparkle skirt and bow.