Building Bonds: Joy and Representation in Legos

By Chloe Lapp

I am Chloe Lapp, and my older brother, Elliot, was diagnosed with Stargardt disease four years ago. As I'm sure you understand, it's been a long, hard journey, but he's the strongest person I know and my greatest inspiration. He has lost a good bit of his vision and is now legally blind, which completely uprooted his life and forced him (and our whole family) to learn how to adapt and accommodate.

I am 16 years old, a sophomore, and Elliot is 18 years old, a senior. When Elliot was first diagnosed, it was really scary. It was unexpected and completely new territory. None of us really knew what to do or how to handle this. Over time, it's just become a fact of life. It's still scary, but it's also unchangeable, so we've learned to adapt and accommodate. It's just our lives now, and it always surprises me when other people find out and are shocked because, for me, it's my everyday life.

Our favorite bonding activity since we were little kids has always been building Legos together. I used to organize all the pieces and give him the ones he needed for the step while he built. Eventually, as we got older, I would build my own sets, and we would sit for hours after school building side by side. As Elliot lost his vision, he could no longer see the instructions and quickly saw our favorite pastime slipping away. That's when we discovered that Lego has all of its instruction books available online. He's able to download them and blow them up on his iPad as big as he needs. Since then, we've continued to adore Legos, and the time we spend bonding over them is invaluable to me.

Recently, I got the new Botanical Gardens Lego set for the holidays. It's been on my wish list, and I was so excited. I unwrapped the wrapping paper and immediately grinned and looked at Elliot, who was ripping open his own presents. Confused about why I was so happy, my family peeked at the box in front of me. Right there, front and center is a Lego figurine holding a white cane. A blind Lego figure! I was ecstatic. I got to watch my brother see representation in something he loves. There have been a limited number of other visually impaired Lego minifigures before, but this one was incredibly special as he has no sunglasses on. My brother hasn't lost all of his vision and doesn't wear any kind of eye covers or glasses, and this often leads to people saying he 'doesn't look blind enough' or 'isn't disabled' because he doesn't fit the stereotypical mold of a blind person. Seeing a blind minifigure who didn't 'look blind' was such a huge moment for him and our family. It's also a huge step forward in the representation of different kinds of blindness and other disabilities that aren't usually represented in media.

There are, of course, still some drawbacks to the minifigure, including the fact that his eyes are closed, presumably to make him look 'more blind,' which very much feeds into harmful stereotypes. Nonetheless, we'll take our small victories where we can! I wanted to share this milestone with you because the Foundation Fighting Blindness has been such a helpful resource for us and allowed us to connect with so many other people going through our struggles, especially other teenagers. I can't really explain it, but this just feels like something that needs to be shared. I hope that you find as much joy in this as my family and I and that you may share it with the community, too! I'm sure that there are lots of other visually impaired Lego fans who will be so happy to see themselves represented in Legos as well. I know that if Elliot, four years ago, who thought that he would never get to build Legos again, could see this representation, he would be overjoyed. I hope that another kid sitting in Elliot's place today sees the minifigure and knows that he is just as worthy of a minifigure and representation as any other kid.

Elliot is currently in a clinical trial that hopes to slow down his vision loss, which is really exciting for us and the Stargardt community as a whole. This won't reverse his vision loss, but it may prevent further damage.

I hope that the world becomes more accessible and less judgmental. It feels like every day, Elliot has new stories to tell me about someone judging him or his life being made harder by inaccessibility. Whether it's a crosswalk not equipped with proper features or a person being rude when Elliot can't read something, there's always a sense that Elliot is 'different.' He's not, and I hate that the world doesn't understand that. I hope that in the future, the world advances in ways that are built to include Elliot and other visually impaired people instead of them being an afterthought. Elliot should be able to move through his life freely instead of being forced to advocate for every little need that should be met. He should be allowed to be a teenager without worrying about his ability to stand equal with his peers while moving through life.