By Stephen Daw
February 13, 2015
Living with a disability often leaves people feeling ostracized by society and alone. Sarah and Bennett don’t feel like that anymore.
Sarah Byland likes to spend her Tuesday afternoons with her friend Colleen McGovern. Sarah is a petite 5 feet 3 inches, but her permanent toothy, excited grin knows no size. Beneath her short black hair and behind her glasses, she smiles at everyone with her big brown eyes.
Today, Sarah and Colleen are weaving through the Columbia Mall’s Barnes and Noble. Sarah, who’s 38, is incredibly friendly — she bumps into four friends while she and Colleen look for a book about a bear in a yellow hat.
They know the bear always wears his hat, hails from England and stars in an upcoming movie, but they’re struggling to remember what his name is. Finally, it comes to them — Paddington Bear. But the store only has a picture book, and Sarah wants a novel.
Colleen and Sarah met through Mizzou Tiger Buddies, a student organization that pairs MU student volunteers and people with disabilities in the hopes of creating lasting friendships and promoting more inclusion of the disabled community.
The group was started by juniors Hannah Ryan and Sophie Meskis. Sophie says she was inspired to create Tiger Buddies because of a similar program, Panther Pals, at her high school.
She and Hannah think people with disabilities are often excluded from society. They both hope Tiger Buddies will change that. When Hannah first came to Columbia, she noticed that while there were many programs for families of people with disabilities, there were very few that connected people with disabilities to MU students.
Source: Special Olympics
“We noticed that we have all of these huge resources and great programs going on,” Hannah says. “And yet there was still this disconnect between this community and students. And we wanted to fix that.”
Many of the friends Sarah sees at the mall are students from Columbia College, where she works in the cafeteria. A few are people she knows from her work with the Special Olympics. Sarah has been a competitor, supporter, and public face of the Special Olympics for more than 25 years. She began competing when she was 10 years old, and her mom brags about the hundreds of medals she has displayed on a wall in her house. Sarah’s face was even displayed on a billboard for the Special Olympics on I-70 last spring.
Sarah is intellectually developmentally disabled, explains her mom, Jeanie Byland. Sarah has received multiple diagnoses throughout her life, but all of them have been vague — Jeanie thinks that if Sarah were re-diagnosed today, she would probably fall somewhere on the autism spectrum.
Colleen, an MU senior, has known for a long time that she wants to work with adults who have developmental disabilities. While on a service trip to Chicago in high school, she worked with the St. Rose Center, a day center that provides training services to adults with developmental disabilities. It was rewarding to work with a group that is often misunderstood — sitting down and talking with someone who is ostracized by society was incredibly rewarding for her.
“When I first met her, she was very smiley. And I think that affected my interpretation of her the most. Not her disability.”
It was the accepting nature of the adults that made Colleen want to dedicate herself to working with more adults with disabilities, Colleen says. More universally, the people she worked with made her want to be a better person.
When Colleen was handed a Tiger Buddies questionnaire in 2013 that asked her what kind of person she would want to work with, she immediately scribbled down “adults with developmental disabilities.” That’s how she and Sarah met.
“When I first met her, she was very smiley,” Colleen says. “And I think that affected my interpretation of her the most. Not her disability.”
"Oh my goodness, he's been waiting outside."
Turning into a driveway north of Highway 63, Taylor Webb grins when she sees 12-year-old Bennett Reno standing at the side of his porch, waiting for her. Bennett’s dad and his younger brother are outside too, smiling and waving next to their one-story home’s garage. Taylor looks at Bennett and notices he’s smiling, too.
Taylor gets out of her car and walks to hug Bennett. She asks if he wants to go see a movie, maybe Disney’s “Big Hero 6.” He looks back to the garage, silently asking for his dad’s approval. He gently nods. Bennett spins back to Taylor — “Yes!”
Dad cautions Taylor against letting Bennett eat too much popcorn, hands her two $20 bills, and says goodbye to Bennett. Taylor and Bennett climb into her car and drive off.
Bennett, who has Down Syndrome, met Taylor through Tiger Buddies. He sometimes has a hard time picking up on social cues — when Taylor shows up in sweatpants and a sweatshirt to hang out, for instance, Bennett sometimes tells her she should dress up more. But for the most part, he is a normal boy.
Taylor, a junior studying special education at MU, loves seeing Bennett just as much as Bennett loves seeing her. On the way to the movie theater, Taylor and Bennett talk about his week at school and about his friends. Bennett recently won the ‘Top Chef’ award at his middle school — it's a big deal, he says, because he'll get to have his photo hung in the hallway. Taylor ruffles his hair, and he complains, telling her to stop messing it up.
Taylor loves Bennett’s mischievous sense of humor too, even though it sometimes can get him into trouble. While Taylor is paying for their popcorn, Bennett notices an older man walking away from the concession line toward his theater. Bennett creeps up behind him, lightly steps on the back of his shoes and runs back in line. Taylor doesn't notice, as she's still talking to the cashier. Giggling to himself, Bennett looks at me and puts a finger to his lips.
Taylor works as a student teacher at Oakland Middle School in Columbia, and last semester, she worked as a student teacher at Alpha Hart Lewis Elementary School. At Oakland, she teaches students with emotional and behavioral disorders in a regular curriculum integrated with social skills. Occasionally, she interacts with the rest of the student body. Although her relationship with her students can be strict and professional, her relationship with Bennett is very different. More than anything else, Bennett cares deeply about the people in his life, and Taylor is always reminding him that she loves him too.
“We’re so comfortable around each other,” she says. “We tell each other how it is and we’ll mess with each other. I’m kind of like a big sister to him.”
Sarah is having difficulty saying what she wants.
Colleen steps in to help, and their waiter glares — a look that Colleen knows is a jab at her, as if saying, “Why didn’t you just order for her in the first place?” But Colleen knows that Sarah is perfectly capable of ordering her own food, and that doing things for her would be counterproductive.
"Just because someone has a verbal disability or because someone, as a result of their disability, can't do things the same way as everyone else doesn't mean that they are incompetent."
“The most comprehensive problem in society is just the idea that because they may have trouble doing certain things or trouble communicating, that they are less intelligent or capable than us,” Colleen says. “Just because someone has a verbal disability or because someone, as a result of their disability, can’t do things the same way as everyone else doesn’t mean that they are incompetent.”
When she was first tested for a disability at 2 years old, the doctors simply told Sarah’s mother that Sarah was “retarded” — no further explanation. When Sarah started school, her diagnosis was “Educable Mentally Retarded,” the common label at the time for children with Sarah’s diagnosis.
Source: Centers for Disease Control
Colleen and Sarah have both joined “Spread the Word to End the Word,” a movement that aims to change perceptions about people with disabilities by encouraging society to remove the word “retard” — the R-word — from its collective vocabulary. They’ve been involved with the online campaign and local walks to raise awareness about the issue. Colleen says that Sarah is very open about the cause, and will to anyone about how that word affects her.
“I mean honestly, can you imagine growing up and constantly being called that?” Colleen says.
Watching people treat Bennett like he’s different is a struggle for Taylor. When they hang out in public, she’s always concerned that someone is going to say something offensive or rude to him.
When they go to restaurants together, waiters and hosts will sometimes speak to him like he’s an infant, not a 12-year-old. Their voices will rise an octave, and they’ll speak slowly and in a “cute” manner, which gets on both Bennett and Taylor’s nerves. One night, Bennett and Taylor were at a restaurant, and Taylor noticed another customer who kept looking over at them. She tried to ignore it, but when the woman stared at Bennett for the rest of their meal, Taylor finally had enough. Fed up, she stood and marched to the woman’s table. “You look so interested,” she said. “Would you like to come over and meet him?”
"Everyone has different parts of their personality. Bennett's disability doesn't define him. It's just a part of him."
Like Colleen, Taylor believes there is a far-reaching problem in the way society views people with disabilities. And Taylor is not afraid to correct people when they use incorrect language. She emphasizes using people-first language — describing someone as a person with a disability rather than a disabled person. Acknowledging that people with disabilities are people first and foremost is an important reality to recognize, she says.
“Everyone has different parts of their personality,” Taylor says. “Disability is not the overarching theme of their personality. Bennett’s disability doesn’t define him. It’s just a part of him.”
Both Sarah and Colleen are dying to go buy Taylor Swift’s new album “1989.”
"It is weird for me to hear people say, 'Oh, you're so good. That's so nice of you,' and I'm just like, 'I'm just hanging out with her.' It honestly is just hanging out with a friend."
After their failed Barnes and Noble adventure, Sarah and Colleen are sitting down for some Taco Bell. Colleen says her favorite song so far is “Blank Space,” but she needs to listen to the whole album to be sure. She says she and Sarah will jam out to it on the ride home. Sarah nods her head in agreement, and the two share a look and a laugh.
“It is weird for me to hear people say, ‘Oh, you’re so good. That’s so nice of you,’ and I’m just like, ‘I’m just hanging out with her,’” she says. “It honestly is just hanging out with a friend.”
Colleen has thought about what happens in two years when she graduates. She knows that Sarah will get a new buddy, and she won’t get to see her every week. She knows she won’t get to have these weekly hangout sessions with someone that she considers one of her very good friends. It makes her sad, but she knows that it will be all right.
“We were able to build such a genuine relationship,” Colleen says. “We’ve already made plans for me to come and visit during the summers and things of that nature. It will be sad for me to see her with another buddy, because she’s just so loveable and so warm with everyone else. But I’m not worried about our friendship.”
Once the movie ends, Bennett and Taylor head to the movie theater’s attached arcade. Bennett wants to play as many games as possible, but Taylor reminds him they can only play two games because she doesn’t want to spend too much money.
When Taylor looks at Bennett, she doesn’t see a disability. She sees a cute, loveable little boy. Bennett’s sweet nature and funny personality is what first strikes people he meets, not his Down Syndrome. If people notice anything, it’s the way Bennett looks at Taylor — like she’s his big sister.
While he and Taylor play a game of air hockey in the arcade, a competitive light sparkles in Bennett’s eyes. He smacks the puck around the table, and Taylor tries her best, but he beats her handily, 7-3. Bennett does a small victory dance and runs toward the token machine.
He turns to Taylor for another dollar or two to put into the machine. Taylor gives him a look and tells him that it’s time for them to leave. Bennett pleads with her — one more game? Taylor doesn’t waver, but never gets angry or raises her voice.
Taylor says every person she works with has a different way they respond to authority, Bennett included. Taylor knows if she raises her voice, Bennett will simply raise his voice back, and they will descend into a shouting match. She says the best way to handle these situations is to calmly tell Bennett what he needs to do. He’ll eventually listen.
Sure enough, after his eighth plea, Bennett gives in and trudges out of the arcade with Taylor. She leans down to him as they walk away. “Thank you for listening,” she says. Bennett gives Taylor a half-hug as the two walk down the stairs.
Sarah waves at a colleague from Columbia College as she passes the table Sarah and Colleen are sitting at in the mall. The woman says hello and waves back.
Between bites of their Taco Bell, Sarah and Colleen are talking about how each other’s week has been. Sarah talks about how she saw a few friends at work last week, and Colleen keeps her updated on all of her classes.
While Colleen gets up to go get some more soda, Sarah smiles and waves at a student she says she knows from work. But the student avoids making eye contact with Sarah and awkwardly looks away. Sarah’s smile fades, and she puts her hand down.
She stares down at her burrito. “I don’t like it,” she says. “I don’t like it when people do that.”
This isn’t the first time Sarah has been dismissed or rejected. It probably won’t be the last.
During an interview, Colleen clears her throat and starts to recount what she imagines it would be like if she had a disability. She pauses for a moment before speaking.
“I cannot speak on behalf of that population, and I cannot even begin to imagine what it is like,” she says. “But to know that there is someone out there who wouldn’t want me in their home because I would be too much of a ‘burden’... that breaks my heart.”
“Hey Taylor, can you put my song on?” Bennett asks.
Taylor chuckles to herself. “Sure, bud.”
She grabs her phone and plugs it into the auxiliary jack of her car, scrolls through a few songs and presses play. The car is filled with a bumping low bass as a clean version of “Teach Me How to Dougie” plays over the stereo system.
Bennett does his best to rap along, making Taylor laugh out loud. When the chorus hits, Bennett raps flawlessly while dancing in the front seat.
This is the kind of thing that Taylor loves about Bennett: his goofy, fun-loving nature and his ability to brighten up any around him. She loves getting to spend time with him and being an influence on his life. She loves that Bennett wants to be just like her when he grows up.
“He wants to be a SpEd (Special Education) teacher, and he wants to be a student teacher like I am now,” Taylor says. “It’s a lot of ‘Whatever Taylor does, I do,’ and I think it’s cool that I’ve become this older sister figure to him.”
But Taylor isn’t just influencing Bennett. He has had a significant impact on her life as well, she says.
Bennett has shown her that just because a child has an intellectual disability, it doesn’t mean he’s less intelligent. Bennett works very hard to get good grades in school, and he knows what he needs to do to accomplish tasks. Because of Bennett, Taylor says, she is able to push her students harder — she knows that they are just as capable as he is.
But Bennett also knows how to make Taylor happy, and he does every time she sees him. She says knowing that there’s someone who is so looking forward to seeing her is an incredible feeling.
More than anything, Taylor is struck by what a strong bond she and Bennett have. What started out as a simple tutorship has grown into a loving friendship.
After spending the day together, Taylor drops Bennett off at his house and helps him with homework. As it gets later and closer to Bennett’s bedtime, Taylor tells him it’s time for her to go. They hug, and Taylor moves for the door. But Bennett runs up to her, trying to keep her in the house.
“I have to go, Bennett,” she says.
“OK,” he mumbles, disappointed. “I love you.”
Taylor smiles. “I love you, too.”