PUTNEY, VT. — Growing up with a special-needs sibling has shaped Maddi Shaw's life.
Her brother Miles Shaw, now 27, has Cornelia deLange Syndrome, or CdLS, a condition present at birth that causes "a range of physical, cognitive, and medical challenges," according to the CdLS Foundation website.
Recently named Miss Vermont International 2016, Maddi — a resident of Putney in southeastern Vermont — hopes to use this opportunity to help others feel more comfortable around those who have special needs. She will spend the year promoting this cause in collaboration with the CdLS Foundation staff.
Maddi, who is four years younger than Miles, said she used to get angry with people who looked too long at Miles or who reacted noticeably to his appearance.
"Because he doesn't have a voice, I would find myself defending him and getting mad at other kids," Maddi said. "The hardest part was when people would just stare, rather than ask questions."
One recent incident that stands out in her memory happened in the summer at a local pool. A child seemed to be scared of Miles, and the mother didn't know what to do. Maddi tried to make a connection.
"I said, 'This is Miles. He's 27. He loves to swim,' but it didn't help," she said. "People want to have the conversation, but they don't know how to address it. Since that incident at the pool, I've wanted to reach out."
The pageant organizers recruited her, Maddi said, adding, "I've never been interested in a pageant. Whenever I've gotten these letters before, I've thrown them out."
This time was different, something Maddi attributes to divine intervention. She opened the envelope and saw that Miss International is a platform-based pageant. A contestant chooses a platform, that is, a cause about which she is passionate. She volunteers for this cause and uses her pageant candidacy to bring public attention to it. For Maddi, this means helping people learn how to interact with those who have special needs.
"When I read that, instantly Miles came to mind," she said. "I decided to apply. I had a 45-minute interview about my platform and my life over the phone with the executive director of Miss International."
The CdLS website says that "individuals with CdLS strongly resemble one another. Typical facial features include thin eyebrows that meet in the middle, long eyelashes, a short upturned nose, and thin downturned lips. Other characteristics include low birth weight (often under five pounds), slow growth, small stature, and small head size. Other features may include excessive body hair and small hands and feet."
The CdLS site continues: "Common medical issues include gastro-esophageal reflux disease, heart defects, seizures, feeding difficulties, vision problems, and hearing loss. Limb differences, including missing arms, forearms or fingers, are seen in about 25 percent of individuals with CdLS. Behavioral and communication issues and developmental delays often exist."
Miles' medical records fill a notebook three inches thick. As Maddi turned the pages, she pointed out milestones.
"He was four pounds and 17 inches when he was born," she said. "He smiled at one year. He squealed at between 12 and 18 months. He walked for the first time at seven years."
The numerous medical challenges Miles has faced have been instructive for Maddi.
"He's had heart surgery," she said. "I've seen him fight for his life. In 2006 he had several medical emergencies. I've seen his face go blue and his stats go down."
Miles's experiences have helped Maddi learn not to give up.
"Like anyone else, I've gotten down before," she said, "but when he clinically has so little, yet fights so hard to live, why would I throw my life away? What he's been through has pushed me to see it that way."
Maddi, a recent graduate of the University of Maine, who majored in journalism and minored in international affairs, will compete for the title of Miss International 2016 in July in Jacksonville, Fla. During the week they are in Florida, contestants will go through orientation, make "no-sew" blankets for a children's hospital, and "talk to high school students about the 'real world,' so [they can realize] it's not so scary," she said.
According to the Miss International website, miss-international.us, pageant contestants compete in four categories: Fun Fashion Wear counts 20 percent of total score; Fitness Wear, 20 percent; Evening Gown, 20 percent; and the Interview, 40 percent, for which the contestant wears business attire. Five judges conduct the interview; the contestant spends five minutes with each judge. No political or religious questions are allowed.
In order to cover her pageant expenses, Maddi is seeking sponsors. Her website is supportcdlsvt.com. From there, people wishing to donate can go to the GoFundMe page or email her at email@example.com. She also has a Facebook page.
Maddi saw the irony of using a quasi-beauty pageant, which is about exterior looks, to highlight the inner beauty and humanity of all people, but her pageant platform addresses that paradox.
"I'm not a mother, but I can imagine having a newborn and wanting to show off your baby, and at the same time thinking how people will react," she said. "It must be really hard. What I want to teach is that people with special needs just want to be loved."