Emma Willey sadly passed away on March 21, 2023. We are grateful to Emma for her self-advocacy and her family for supporting the Ready for My Shot campaign. For more information on Emma's life, please see her obituary.
Emma is 19 years old and in her last year of high school. She was the first self-advocate to submit a Ready for My Shot selfie when the campaign began in February 2021.
“We couldn’t help but get involved,” says Sharon Willey, Emma’s mom.
Ready for My Shot was initially founded to lobby provincial governments to prioritize people with developmental disabilities – who had been proven to be high-risk for poor COVID outcomes – to get their COVID shot.
Sharon admits, “I wish we had become involved because of compassion and empathy. But last year, Emma had so much taken away from her – no school, no visits with grandparents – and then she couldn’t get the one thing that would keep her safe – the vaccine? Anger was what popped up.”
Sharon explains how Ready for My Shot was more than an advocacy campaign for her daughter.
“Emma has a real fear of needles and Ready for My Shot got her engaged in a conversation about her own health. She saw others getting their shots and it was a way to talk to her about getting a needle.” Emma got her first COVID shot as soon as it was made available to her. She now has had all three COVID shots.
By the summer 2021, many people with developmental disabilities had gotten two of their COVID shots, but there were still people who had not been vaccinated for a variety of reasons, like lack of access, fear of needles or side effects, or a misunderstanding due to misinformation or confusing public health messaging.
The focus of Ready for My Shot changed to an educational campaign to encourage people – without shaming or blaming - to get their COVID vaccines. The campaign produced a poster and video to reinforce this message. As Ready for My Shot’s first advocate, Emma was the first model recruited for the poster photo.
Emma and Sharon arrived at a professional studio in Edmonton for the photo shoot for the poster last fall.
“We walked in and Emma was impressed,” Sharon shares, “Like wow, this is hoity-toity.”
To communicate, Emma uses a few verbal words, sign language and gestures. In typical teenage fashion, Emma didn’t want her mom cramping her style, so Sharon hung back and Emma took the lead.
“It was a real movie star experience for her. The photographer (Gallican Buki) was phenomenal. He spoke to Emma directly and gave her time to explore the studio and get comfortable. Never once did we feel rushed or that we were on a time clock.”
This photo shoot was Emma’s first job, as she hasn’t be able to engage with work experience at school because of the pandemic. After the photo shoot was wrapped, Tara Hogue Harris, Ready for My Shot’s campaign coordinator, directly gave Emma an envelope with payment and formally thanked her for her good work.
“With cash in hand, Emma knew exactly what she wanted to do,” Sharon says. “She wanted to spend her money to buy a baby doll that she’d be saving up for.”
Emma and Sharon drove straight to the shopping mall and Emma went directly to the store. She had her payment in hand and proudly paid for her own purchase.
“She got to decide how to spend her own money. Being a model in the photo shoot helped give her a sense of purpose. It made me realize that I think we undervalue how a sense of purpose matters to all of us,” says Sharon.
The final photos of Emma were evidence of the positive experience. Emma got print copies to keep and is featured on the Ready for My Shot poster that has been distributed to community agencies across Canada. She also is in the Ready for My Shot video, cast as a friend who is texting the lead character to convince him to get his COVID shot so he can live his best life.
Ready for My Shot is more than an advocacy campaign. It is a way for the community of people with developmental disabilities to come together to be actively involved with a common purpose that directly impacts their lives.
“Ready for My Shot has given Emma a better sense of involvement with her own health. This campaign has helped open our eyes up to the adult world. We need community. This advocacy work isn’t over – as we move through this hurdle, the next one is ahead of us,” concludes Sharon.
People with developmental disabilities and their families know that they have to advocate for access to basic health care. This is not fair or just, but it is their reality. Ready for My Shot has proven that there is great power in doing this health equity work together.
Want to learn more? The Health Care Access Research and Developmental Disability (H-CARDD) blog has more information about COVID vaccines and people with developmental disabilities. https://www.porticonetwork.ca/web/hcardd/news