March is Developmental Disabilities Awareness month, a dedicated time to shine a spotlight on the importance of including people with developmental disabilities in all areas of community life and the barriers that must still be overcome. We interviewed Jake Plue, a proud self-advocate who is deeply embedded in his community in North Carolina, to share his story and provide tips for others on expanding life and activities in the community. Also included in the interview was Melinda Plue, Jake’s sister-in-law and the Director of Advocacy/Chapter Development at The Arc of North Carolina.
A Day in the Life of Jake
Jake lives in Monroe, North Carolina in his own one-bedroom apartment. The complex is one of five apartments that are owned by The Arc and run without staff. Monroe is a town with great walkability; Jake can independently walk and bike from his home to the historic district downtown daily. Jake is a mayor-like figure in the town; the merchants know him and he’s a well-known presence in the shops, always visiting the business to chat with the owners and customers. Jake lives just a mile from his brother and sister-in-law’s family, providing him with the opportunity to see them at his leisure. He also has the option to take a quick 45-minute bus ride to Charlotte if he wants to attend hockey games or eat at Bojangles as a family outing.
Choosing Meaningful Ways to Spend Your Time: Volunteering
Jake’s pre-pandemic schedule was blocked with volunteer opportunities across his community. While many were halted due to COVID, he is eager to start back up as soon as it is allowed. The opportunities include the following:
- Helping with a variety of tasks at the homeless shelter, including washing dishes and serving meals.
- Jake is a super volunteer for the Red Cross. When eligible, he donates tremendous amounts of blood and in the between periods he volunteers at the blood drives, “making sure people don’t pass out” and handing out drinks and snacks.
- Jake’s brother is a high school principal which provides him with the opportunity to volunteer at the high school in a variety of ways. He assists the athletic director, shreds papers, recycles boxes, and picks up trash around the school. He also serves as the water boy for the football team and assists with the other sports seasons as needed.
- Folding towels and restocking them in the bathroom at the local fitness and aquatic center.
Tips for Choosing Where to Volunteer
We asked Jake how he decides what to volunteer for and he told us, “I’m passionate about giving people food who need it, I love sports and being around people and being able to talk with them. I have mad people skills.” His advice for others who are looking to give back to their community: “See what’s in your area. Figure out what you want first, based on what you like to do and your passions. Make sure that it is close enough to where you live to get there. It’s important to be busy during the day always because if you’re bored, you’re then sleeping or watching too much YouTube.”
"Working for money is good but filling the day with volunteering and walking is also great."
Leadership Positions within the Self-Advocate Community & Raising Disability Awareness
Jake sits on the board of the local chapter of The Arc’s self-advocate group, The Aktion Club. He currently serves as the treasurer but has been on the board or affiliated with the group for 15 years. The project he’s most proud of was organizing self-advocates to volunteer at their local United Way’s Day of Caring, which assists people in need within the community. Jake and The Aktion Club encouraged self-advocates who had been recipients of services to give back to their community by volunteering.
Jake also actively works to raise awareness and educate others about disability by sharing his story in a variety of settings. As part of a Speaker’s Bureau, Jake tells his story to high school students while also providing them with the opportunity to ask him what it’s like to have a disability. Melinda teaches social work courses at the local college and Jake sometimes joins for conversations regarding neurodiversity, particularly about disability as a form of diversity. He also participates in campaigns against the R-word.
Advocating on Behalf of the DD Community for Vaccine Prioritization
Both Melinda and Jake were heavily involved in the advocacy efforts to get individuals with developmental disabilities prioritized for the COVID-19 vaccine. In North Carolina, people with disabilities were put at the bottom of the list despite the research showing DD as a high-risk condition that is related to much poorer outcomes for those who contract COVID. The Arc of North Carolina initiated a full media blitz, encouraging people with disabilities and their families to share their stories and tag the state and governor to garner attention. They were able to lobby the Governor’s staff and now everyone who receives home and community-based services in North Carolina is eligible to receive COVID-19 vaccinations. Jake is happy to have received both doses of the vaccine and can breathe a little easier knowing he has that protection.
Bringing Awareness to a Common Misconception
We asked Jake what topic he wanted to shed light on during DD Awareness Month and he emphasized the very common assumption that people with developmental disabilities either have Down syndrome or autism. Jake’s vaccine advocacy efforts were recently highlighted by a news outlet and the journalist incorrectly reported that Jake had Down syndrome within the article. Not all intellectual and developmental disabilities have a label, and trying to put someone into a box is harmful to everyone. Jake’s biggest piece of advice is, “don’t use disability as an excuse, or let other people use it as one for you. People should have high expectations of people with disabilities – you don’t know jack about me. Always treat me as if I can do anything.”