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THE NEXT GENERATION: The Glitter Storm Clears the Way for Design With Us

By Jen Lee Reeves

I’m Jordan Reeves’s mom. We founded a nonprofit together that is now called Design With Us. Jordan is currently 16 years old (soon to be 17 on December 29th) and known for speaking up for the disability community and inventing a one-of-a-kind prosthetic arm that shoots glitter. We wrote a book together called Born Just Right (which is the old name of our nonprofit organization).

Jordan’s path started when she was very young. I was a professor, a newsroom manager, and launched a blog about parenting a kid with limb difference so I could find other families like us. Jordan had a chance to speak to occupational and physical therapy students each year at our nearby university. As our blog grew, we started holding meetups. She attended Helping Hands events outside of Boston and Camp No Limits in Missouri and Maine.

When she was 10, she was invited to an event that led to a one-of-a-kind idea she called Project Unicorn. The invention turned into a unicorn horn-shaped prosthetic arm that used compressed air to shoot biodegradable glitter. We shared her designs on social media and suddenly she was given opportunities to talk about disability in a really positive light. She knew it was a special opportunity. She spoke about disability inclusion in her own tween way and advocated for other kids to have the same experiences. That’s why we launched our nonprofit: to give more disabled youth access to the power of design skills and the confidence it brings to speak up when changes are needed. Design has created unique experiences for our young people. It’s given our young designers opportunities to speak at events, share their designs in museums, and even publish articles in research journals.

Beyond supporting design workshops through our nonprofit, Jordan raised awareness about how important it is for mainstream toys to show more disabilities so all kids can grow up knowing disability is normal. We collaborated with Mattel and the Barbie design team on a doll that wears a removable prosthetic leg. Jordan’s story was featured in the first episode of Marvel’s Hero Project on Disney+. She was in the top 5 for Nickelodeon and TIME Magazine’s 2020 Kid of the Year search. Our work has been featured on network news, national magazines, and online publications. It’s a lot for a now-high school sophomore who just wrapped up a role in her first high school musical. She’s a typical kid with very atypical experiences.

Living with one hand makes it possible for her to attend Amputee Coalition Youth Camp (or Amp Camp as most call it). It’s always been an important yearly highlight in her life. Missing camp during the pandemic is just one of the many things that have made the last two years challenging. Life slowed down after a fast-paced mix of school and travel. Her last in-person speech was a panel discussion at New York City’s Lincoln Center in early March 2020. The pandemic gave Jordan space to think through things that any typical teenager needs to figure out: like what are the activities that bring her joy, what skills does she want to improve on, and does she really want to work toward earning her driver’s license?

The glitter is packed up. We stopped buying stacks of compressed air to put on prosthetic demonstrations. But our work continues to offer young people access to opportunities that enhance their disability experience with a chance to learn about design. We continue to rebuild our way back after a major pandemic pause. Our organization led a virtual design workshop in 2020. For the first time, we included kids who do not consider themselves disabled. The combined experience for our learners led to cool “aha” moments when they discovered how important it is to take design ideas and think of communities they can design WITH, to improve the concept. I got to watch a similar experience take place when Barbie designers worked WITH Jordan. Her input made sure the doll wears a removable prosthetic leg. That was a big design change from the original content. Designing WITH a member of the limb difference/limb loss community made a real difference.

Relaunching our organization as Design With Us is a great opportunity for us to restart our work since we focused heavily on in-person events. A research center at Princeton has offered to host events in 2022. Our next step is to find donors who can sponsor travel, boarding, and supplies. Getting our workshops back also means we will be able to find more young people to join a youth consultancy we launched that offers opportunities for members to consult and speak about disability and design. We hope Amputee Coalition members consider joining us!

As Jordan’s mom, I’ve learned a lot about how design opened her world to new experiences and a chance to feel bold to speak up and encourage the world to change with her. I’m lucky to have the chance to work with her as my partner through Design With Us, We will make sure that power is shared with many more young people.