Kelley Stuckey and her son Everett. Photo courtesy of Stuckey.
Story by Mary Katherine Shapiro, Photo courtesy of Kelley Stuckey, December 4, 2020
Kelly Stuckey was walking through the airport when she noticed the Kentucky Derby playing on television in a restaurant near her gate. She stopped to sit and watch the horse races. Two older men she had never met sat beside her, talking loudly. They were joking about some of the people at the derby being short and calling them midgets.
“They thought they were being funny,” Stuckey said. She didn’t want to make them uncomfortable, but she knew she had to say something. She interrupted and said, “my son is a little person.”
The men started asking questions like, “how do you know he won’t grow out of it?” She explained that “midget” is a derogatory word, and that dwarfism is a bone growth disorder that people don’t grow out of.
Stuckey said it turned into a great conversation. The two men even started to cry. She said that most of the time when people say things like that they are uneducated and just don’t understand.
Dwarfism affects about one in 15,000 to one in 40,000 people, according to MedlinePlus. It causes people to have shorter arms and legs in relation to their torso and an enlarged head. Because of the rarity of dwarfism, it has become kind of taboo, Stuckey said.
A lack of knowledge and a lack of representation in the media has led to a stigma surrounding little people. The media has told a single story about little people for a long time.
In P.T. Barnum’s circus, he hired little people to perform for entertainment. Little people play Oompa Loompas in “Charlie and the Chocolate Factory.” They play munchkins in the “Wizard of Oz.” These are minor roles depicting mythical creatures. As a result of this unrealistic representation, people don’t know how to treat little people with the respect they deserve.
Another offensive form of representation is “midget wrestling.” When a venue hosts “midget wrestling,” they are reinforcing stereotypes that portray little people as objects of entertainment, according to The Little People of America website.
Last February, a nine-year-old from Australia with dwarfism received national attention after his mom shared a video of him. In the heartbreaking video, he was in distress over being bullied, a reporter from CNN said.
When people are only represented one way in film and television, they can start to think that they are limited to that one narrative.
“You don’t see little people that often in movies, but when you do see them they are cast to be a joke or a mythical creature,” Stuckey said. “I get it, it’s a small percentage, but I would love to see a few movies cast little people where there is no joke, but they’re just an average person.”
Stuckey is trying to prevent her child, Everett, from being hurt by these stereotypes. Four-year-old Everett Stuckey lives in Fayetteville, Arkansas, with his mom. He goes to preschool four days a week. Stuckey said he’s smart for his age. He loves board games and playing Super Mario on his Nintendo. He gets excited for play-dates with his friends. His favorite foods are pizza and chicken nuggets. Like most four-year-olds, he is headstrong and likes to do things his own way.
Stuckey is passionate about educating people on what dwarfism is and how it impacts everyday life. She has used social media to help Everett meet other people with dwarfism, like their friend John-Michael who lives in Birmingham, Alabama. One way she advocates is by sharing her and Everett’s experiences on her social media page. (@hellokellystuckey) She shares pictures of her and Everett to try to help people see dwarfism not as a myth or a joke, but as a regular part of life.
In the mornings, she drinks coffee and Everett drinks chocolate milk. Kelly has passed on her love of music to her son. Sometimes Stuckey plays the piano while Everett sits in her lap. They love to dance. Everett chooses the song and his mom holds him as they dance around the living room.
There are lots of challenges in their everyday life too. Everett doesn’t have the freedom to go outside and play like most kids his age can. He can’t reach the doorknob, so Stuckey has to go with him.
It was difficult for him to learn how to eat because he also has a facial palsy, which causes weakness in the facial muscles and appears to make half of the face droop, according to the Mayo Clinic website. He still eats slowly, and that frustrates him. Stuckey worries about Everett going to middle school and high school. She worries about the classrooms being far apart because it takes Everett twice as long to walk from one place to another.
Every year, Stuckey sends out a letter to the parents and teachers in Everett’s preschool class. She said she wants to educate parents to have the conversation at home before they go out in public with their kids and something hurtful is said.
“But if you are out in public and something is said, don’t shush them,” she said. “It is okay that they notice things are different. Use that as an opportunity to educate them instead of just sweeping it under the rug,” she said.
She understands people’s confusion because she didn’t know about dwarfism either until Everett was born. People with dwarfism can be born to parents of average stature. Eighty percent of little people are born to average-sized parents, according to the Understanding Dwarfism website.
It is difficult to detect on an ultrasound, so Stuckey and her husband, Zac Stuckey, had no idea that Everett was a little person. Stuckey had a routine pregnancy, but after 46 hours of labor, the doctor knew something was wrong. People with dwarfism often have enlarged heads which can cause complications in childbirth. Because of this, Stuckey had to have an emergency C-section.
After Everett was born, everything seemed fine. The day they were discharged from the hospital, a nurse asked the Stuckeys, “Have you noticed that your son is pretty unusual looking?” They were shocked and overwhelmed.
The nurse started using these big medical terms and suggested Everett might have achondroplasia, a kind of dwarfism, Stuckey said. She suggested this because of Everett’s enlarged head.
They thought she was wrong at first. They went to see a pediatrician, and Everett had bloodwork done at five days old.
While waiting for an official diagnosis, the Stuckeys decided they would not do any research on dwarfism. They tried to take things one step at a time and not panic. They spent a lot of time in prayer and learning how to care for their son.
“To me he is perfect and he’s beautiful and in a way, I’m glad I didn’t know about the diagnosis until after he was born,” she said.
Stuckey was at home in the nursery trying to feed Everett when the doctor called. The test results came back and confirmed that he did have dwarfism. She said her first thought was, how is the world going to treat him? She imagined the hurtful things people would say and she started to cry.
“I want to make sure he knows he can be what he wants to be and that he’s not limited to certain roles or jobs because of this,” Stuckey said.
Peggy O’Neill, 64, was told that people would never hire her because she is a little person. Now she is an author and professional speaker who travels to schools and corporations to give speeches on inclusion and empowerment. She lives in a small town near Santa Barbara, California.
People need to be respected, she said. They desire to see a reflection of themselves in movies and television because that gives them a sense of belonging.
“Representation of little people is terrible,” O’Neill said, in a phone interview. Her ex-husband, who is also a little person, was an actor.
“The roles he got offered were very limited,” O’Neill said. “He played elves in Christmas commercials. He was a child stand-in who stood on the set while the producers fixed the lighting for a child actor. There were multiple times he was asked to show up to an audition in diapers to play the role of a baby.”
O’Neill wants to see little people in roles where they speak, interact with other characters and have relationships. She wants to see more accurate depictions of little people.
The biggest challenge of being a little person is adapting to a world made for average-sized people, O’Neill said. Things like telephone booths, cars, light switches and furniture are all hard for her to use.
The way people respond to her makes life even harder. She said people assume that because she is a little person, she has little intelligence.
“Everywhere you go there’s a reaction. There’s a reaction when you go to school, when you go to work and when you get up on stage to speak,” O’Neill said. “People think, “Oh my gosh, this person is so different than me, and they go into a state of shock and fear.”
Everett is getting to the age where he is starting to notice these reactions. He has started to notice that he is different, so Stuckey has started pointing out differences in nature to try to teach him that differences are a good thing.
“Everett, look at how many different kinds of trees there are,” she says. Stuckey said she believes that every person is created in the image of God. “We should celebrate that we are not all the same,” she said.
Stuckey wants Everett to have confidence that God made him and loves him and he has a purpose, she said. She hopes that he will find his identity in Christ rather than a diagnosis. Stuckey leans heavily on her faith, especially now that she is parenting Everett alone. Her husband died in a motorcycle crash in July 2019.
Stuckey said she worries about not having her husband to help her with big decisions, like where Everett will go to school in a few years. She worries about Everett having confidence, growing up without a strong father figure.
“It breaks my heart that his dad won’t be here,” she said.
She wishes her husband were here to help Everett with hygiene, she said. Some little people’s arms are not long enough to wash their hair properly. Even going to the bathroom can be challenging.
“Zac was always the really light-hearted and fun one, and I have always been more serious. I worried really early on if I would be able to make life fun for Everett.”
She said that she has male friends and family members who will help fill in the gaps, but it will never be the same without Zac.
She wrote on Instagram in September 2019 , “God’s Word tells me that he who began a good work in me will be faithful to complete it (Phil 1:6). That the Lord is near to the brokenhearted and saves the crushed in spirit (Psalm 34:18). So many promises and God has been SO NEAR & FAITHFUL. I can’t deny His presence and guidance any more than I could deny this pain. He is supplying supernatural strength to get up, show up, and bring fun and joy into Everett’s life. One day at a time.”
Stuckey has Bible verses all around her home. Her faith is an incredibly important aspect of her everyday life.
Even with this hope, Stuckey said that grief has made her brain feel broken. She and Everett have both been going to counseling. She had a friend come over to help her sort through their house. She is putting together a scrapbook and saving things that belonged to Zac to give to Everett when he’s older to help him feel connected to his dad.
Stuckey said she has been telling herself to “just show up.” Adjusting to life without Zac has been hard, but she keeps showing up. She shows up to her job. She shows up to be a mom. She shows up to meet with friends. She shows up to share her story and continue fighting for better representation of little people like Everett.
While Everett may be well represented on Stuckey’s Instagram page, there is still a lack of good representation of little people in the media. When the media we consume is exclusive, people who don’t look like the majority are marginalized, stereotyped and ignored.
There needs to be better and more frequent representation of people with dwarfism. Little people deserve to be included, both in life and on the screen.