by Alexandra Capellini
It was 8:25 in the morning when I walked into the conference hall to see a circle of chairs assembled for whoever was going to show up. I had no idea how many people planned to join me that morning. It was early in the day, and we had invited all young adults. By 8:45, we had nearly filled the circle. There were, indeed, young adults on-site, interested in talking. After all, there is a lot to cover as young adults with limb loss/limb difference.
I was in that conference hall to lead the Young Adult Roundtable at the Amputee Coalition’s 40th National Conference in Las Vegas. It was a natural extension of our monthly virtual young adult amputee support group. That morning, young adult amputees showed up from California, Nevada, Arizona, Texas, Ohio, Michigan, and Colorado. We opened up about the kinds of things we want to ask other amputees: How we advocate for ourselves to our doctors, how we give our bodies rest, how we approach workplace accommodations, how we navigate the online dating scene, how we talk to ourselves when body image insecurities come and go. I left our Roundtable conversation feeling so energized and motivated to connect.
That’s what led me to many other sessions throughout National Conference, including the Limb Loss and Limb Difference Awareness Month (LLLDAM) planning session. It was designed to be an interactive planning session. Every April, LLLDAM aims to showcase the stories of people around the country living with limb loss/limb difference. The goal is to make more people with limb loss/limb difference feel seen, empowered, and heard. Reaching that goal can look different for each of us, hence the planning session.
The session began with Amputee Coalition staff asking us to each define our focus: What is the key message you want to share during Awareness Month? Then we shifted focus towards our target audience. Are we targeting friends, community members, healthcare providers, policy makers, and/or social media followers? We were challenged to think about what resources or support we would need to make this happen. What did our timelines look like? Finally, we were asked to reflect on how we would share our impact or story. The key to LLLDAM is finding your own way to bring visibility to the community–whether that comes in the form of words, images, or video.
It’s the perfect call to the young adults with limb loss/limb difference who want to find ways to connect with one another. Why? Because it’s easier to push ourselves to figure out the difficult things when we see someone else taking the early steps. That’s how we build momentum. As a person with limb loss/limb difference, the thing that you have figured out is the answer someone else is looking for, and it’s the motivation someone else can use to figure out the next thing–for themselves, and for all of us.
To my fellow young adults, here are some ideas for getting involved:
To my fellow young adults, here are some ideas for getting involved:
Let’s aim big—get every state in the U.S. to recognize Limb Loss and Limb Difference Awareness Month.
Use social media to amplify that reach. Share your favorite prosthetic features, whether that’s walking upstairs step-over-step or slowly walking down a ramp without falling. This can prepare people to have more nuanced conversations with their prosthetists about what they want to get out of their prosthetics.
Share how you adapt in the gym with and without prosthetics. Be the reason that more people with limb loss/limb difference take one step closer to the gym. Fitness is relevant for all of us expending energy to stay mobile.
Highlight adaptive clothing that works well for you. Spread the word about brands that are designing clothes with us in mind.
Open up about the highs and lows of your mobility before and after limb loss/limb difference. Give a shout-out to the PTs and OTs who’ve supported you along the way while showing the progress that can be made with consistent commitment.
Talk about how you move through the mental blocks that can come with body insecurities. Whatever tools have helped you can likely help many others.
Share how you approach questions about your limb loss/limb difference from strangers. Bonus points if you’ve figured out the best way to field questions from kids.
Post flyers that showcase amputee support group offerings, and hang them in your local doctor’s or therapist’s office.
Educate yourself on the world of adaptive sports. This means signing up to participate in an adaptive sports clinic, buying tickets to attend an event or even streaming re-runs from the Paralympics.
Every share, story, and action helps move someone else forward.
