Entertainment Weekly

Stay Connected

Subscribe

Advertise With Us

Learn More

Skip to content

Article

The EW Report: Actors with Down syndrome

Posted on

Lauren Potter is not afraid to admit that sometimes it can be a little exhausting to be a star. Minutes after arriving at her very first Screen Actors Guild Awards ceremony in Los Angeles last month, the 21-year-old actress — who plays Sue Sylvester’s sidekick, Becky, on Glee — releases a slight but very audible groan. Potter’s silky black pumps are squeezing her feet, and she’s having trouble hiding her fatigue, which is exacerbated by the unseasonably warm temperature in downtown Los Angeles. So she starts to yawn.

”Tired already?” asks actress Linda Gray, a star of TNT’s Dallas reboot, who breezes by Potter on the way through security.

”Kind of,” responds the 4-foot-9 actress, her milky skin now pink from the afternoon sun. No time for Potter to rest, though — not when 100 photographers are waiting to take her picture.

”Hello, beautiful lady!”

”Turn your shoulder this way!”

”Give us a wave!”

”One more time, pretty lady!”

Unruffled by the fusillade of commands, the most famous young woman with Down syndrome in America — and quite possibly the world — tilts her head, flashes a lovable smile, and playfully ruffles her long black Aidan Mattox gown. In no time, those pictures from the red carpet trigger a flurry of Google alerts back home in Riverside, Calif., where Lauren’s mom, Robin, anxiously awaits a glimpse of her daughter. ”I’m living vicariously through her, I admit it,” says Robin, a registered nurse who now serves as Potter’s manager. ”I think back 21 years ago, when the doctor told me my baby had Down syndrome. There was a little mourning period inside me. No ballet, no proms, no weddings. I’ll never sit with her while she’s delivering a baby. But she’s gone to every prom. She’s danced since she was 3. She’s on a hit TV show. She speaks in front of people all around the country. She’s far surpassed any dreams. They’re different dreams, but they’re amazing dreams.”

In 2011, three actors with Down syndrome held recurring roles on prime-time television: Potter on Glee; Luke Zimmerman, 33, on ABC Family’s The Secret Life of the American Teenager; and Jamie Brewer, 27, on FX’s American Horror Story. For any other disenfranchised group struggling to make a mark in TV, those statistics wouldn’t be cause for celebration. But for actors with DS — which typically occurs when someone is born with three rather than two copies of the 21st chromosome — it’s a remarkable breakthrough.

But just as it is with any aspiring actor, a successful TV career remains an ambitious, and largely unattainable, goal for the men and women with DS currently trying to make it in the business. Other than very occasional appearances on shows like Private Practice, Scrubs, and ER, an actor with DS hasn’t been featured in a dramatic TV role since 1993. The last person was Chris Burke, who memorably portrayed Charles ”Corky” Thacher for four seasons on the ABC drama Life Goes On. ”I have the best memories, working with that entire cast. I loved and adored Patti LuPone so much,” recalls Burke, who was inspired to act after seeing a child with DS on Sesame Street. ”People still recognize me on the street. ‘Are you really Corky?”’

Fifteen years after Corky and his family sang their last ”ob-la-di, ob-la-da,” 7th Heaven creator Brenda Hampton was looking for a person who had ”any kind of life challenge” to play a character named Tom on her new series, The Secret Life of the American Teenager. When she met Zimmerman, Tom — the high-functioning son of Kathleen (Josie Bissett) — became a young man with DS. ”When I walked in to audition, there were some guys who thought they already got the part,” recalls Zimmerman, who made his TV debut at age 10 in the 1990 movie Daughter of the Streets. ”Never mind that! I did awesome.” Adds Hampton, ”When we first started, Luke was just going to be a bit of the Greek chorus, saying what we’d like someone to say in passing. But he has done so well, we’ve written more and more for him every year.”

Zimmerman’s impish personality and fearless nature serve him well on Secret Life. On the show, Tom lives in the family guesthouse and holds a full-time job as a human-resources manager, with the responsibility of firing people because he’s the only one with enough guts to do it. And in real life, the actor — a 1997 graduate of Beverly Hills High School who played football and won the Most School Spirit vote — has no issues with confidence: He once approached Patriots quarterback Tom Brady in a golf club to inquire about the player’s knee injury. His onscreen charisma has earned him fan-favorite status; in April, Zimmerman will fly to South Carolina on behalf of the Make-A-Wish Foundation to accompany a 17-year-old fan with DS to her senior prom. ”I like it when people know me,” says Zimmerman with a grin. ”They always say, ‘Are you Tom from Secret Life?’ I say yes and ask, ‘Do you like Tom or Ben [Ken Baumann]?’ It makes me happy when they say Tom.”

Less than a year after Zimmerman made his debut on Secret Life, Ryan Murphy — who was across town developing a little high school dramedy called Glee — was laser-focused on finding an actress with DS to play the ”hot bitch of the school.” Explains Murphy, ”Glee is about inclusion. It’s about a lot of different types of kids who for whatever reason don’t fit in. So very early on we thought, ‘Let’s feature a kid with Down syndrome [in a way] that has never been done before. Let’s make her a henchwoman to [Jane Lynch’s] Sue.”’ (Later, viewers would learn that Sue had a sister with Down syndrome named Jean, played by Robin Trocki, an actress with DS who appeared in five episodes.)

Murphy didn’t have to go far to find a worthy candidate: Thanks to Down Syndrome in Arts & Media (formerly called Heart & Halo Talent) — a nonprofit organization in Los Angeles that helps casting agents find actors and actresses with DS — Glee had seen several candidates before landing on Potter, a then-18-year-old high school senior who had grown up loving Disney princesses and staging plays for her family. ”The casting director was, like, really funny,” recalls Potter, who was asked to jump-rope in the audition. ”He said, ‘Jump harder! Jump faster!’ He was acting like Sue Sylvester.”

Potter wasn’t slated to appear in a lot of episodes at first. ”They followed her lead, which is what I’ve always done,” recalls mom Robin, who usually accompanies her daughter to set. ”She always had her lines down, always took direction. They saw she was really a professional. I remember one time on set, Lauren and Jane were putting their heads together, and all of a sudden Lauren came over to Ryan for a little business meeting. Then she gets up and walks away, never once looking at me. Ryan turned around to me and goes, ‘Boy, your daughter is an actress.’ She had an idea for the scene, and he did it. They’ve very much accepted her.” But as comfortable as Potter is playing a high school cheerleader, she admits her experiences growing up and attending public schools were far different back home. ”The typical kids would pick on me, like, ‘What does she have, Down syndrome?”’ recalls Potter, her eyes tearing up at the memory. ”At my old school, they pushed me and made me eat sand. I was bruised, beat down, and they make me eat sand. I was little back then.”

Tom’s and Becky’s Down syndrome generally does not define their characters on Secret Life and Glee; when the topic is addressed, it’s handled realistically and sensitively. Tom often wants to do things that are beyond his ability — he attempts to drive without a license in an upcoming story line — and in Potter’s most memorable episode to date (Jan. 17’s ”Yes/No”), Becky sadly concludes that Artie (Kevin McHale) didn’t want to date her because she has DS. ”Some days it sucks being me,” says Becky in her internal monologue, brilliantly voiced by Helen Mirren. ”Focus, Becky. Don’t let them see you cry.” Watching that episode, ”Lauren and I both cried,” says Robin. ”She told me she was crying because she knows that it is true for her, too, that some boys don’t want to date her because she has Down syndrome.”

While Glee‘s Becky is popular and has a great support system at school, the character with DS that Ryan Murphy and Brad Falchuk created for their FX drama American Horror Story last fall lived a decidedly less charmed life. Adelaide (Brewer) gets locked in a closet full of mirrors by her fiercely dominating mother, Constance (Jessica Lange), who also flippantly refers to her daughter as ”a mongoloid” in the pilot. Though the abhorrent behavior helped underscore Lange’s character as a hateful and bigoted relic from another era, it made for some strange days on set for Brewer, an indefatigable young woman who lives with her parents and grandparents about 90 miles outside of Hollywood. ”That was an experience,” reflects Brewer about AHS, her first TV gig, which she booked through DSiAM. ”I thought, ‘Why is she putting her in a closet? Why is she having her look at her appearance?’ It was a relief having my mom there. She reminds me this is only acting. With those heavy scenes, I know I can step off that set and be comforted by Jessica or my mom.” Still, Brewer — who built her confidence over the years by serving as a motivational speaker within the DS community — did not expect any special coaching or treatment before the difficult scene. ”There was no problem with me doing the lines or understanding them.”

And that’s exactly what Brewer and her peers are asking from Hollywood: to be treated just like any other aspiring actor with a head shot and a dream. More specifically, in a time when color-blind casting is no longer a new concept to television (see: Glee, Grey’s Anatomy), Brewer, Potter, and Zimmerman want the chance to audition for any role Hollywood has to offer, not just parts that specifically call for individuals with DS. ”Producers have gone from having them play sappy Tiny Tim stories to having them play edgy stuff on Glee and American Teenager,” says DSiAM founder Gail Williamson, who works with about 200 aspiring actors with DS. ”We’re hoping the pendulum will swing back and maybe settle in the middle.”

{C}

In the meantime, casting agencies like Ulrich/Dawson/Kritzer of Los Angeles are attempting to do their part by considering disabled actors for a variety of scripted roles. (Besides casting Glee, the agency also serves shows like Dexter, CSI, and Drop Dead Diva.) ”I’m fortunate to be on a show with a person like Ryan Murphy, who says nobody is ever too outside of the box,” says agency partner Robert Ulrich, who earned an Emmy for casting Glee. ”But I certainly don’t feel we have done as much as we should. We have to work a lot harder as a community. As casting directors, our job is to be as creative and as flexible as our producers. But we can only do so much. As with any actor, it’s about who is right for the role.”

Writers want to create stories that reflect the world we live in, Ulrich points out, and the fact is, many viewers don’t encounter people with DS on a daily basis. According to the National Down Syndrome Society, less than 10 percent of the intellectually disabled population are in the workforce. (The federal government does not collect specific data on the DS community.) So far this lack of visibility has made it less likely that casting directors will consider actors with DS in background roles like the receptionist at a law firm or a nurse’s aide at the hospital. ”It’s not easy,” admits Ulrich. ”It’s not that there is resistance; it’s just the way it is. You have to keep truthful to the world, but we should also push the boundaries a little bit, change the consciousness of the world. Because in the entertainment community we are fortunate to have creative control.”

At the very least, an ongoing dialogue with the DS community has begun. John Wells, the exec producer of such shows as ER and The West Wing, asked DSiAM’s Williamson to help him cast a key character with DS for an upcoming episode of Showtime’s Shameless, and even tweaked the still-under-wraps story line using Williamson’s input. Still, he doesn’t think casting an actor simply because he or she has DS serves the final product. ”Tell me a great human story,” says Wells. ”Don’t give me a statistic. If you come in only pushing a dry advocacy position but don’t actually have a story behind it, we can find it a little tiresome.” But Hollywood has the obligation to try, insists Murphy. ”Ten years ago, we were having this exact conversation about gay characters, where they were always the flamboyant, ascot-wearing cliché,” he says. ”I think that maybe this is the next area in Hollywood where people will start to change. I hope so.”

Until then, all that the actors with DS can do is keep busy…and wait for the phone to ring. When Zimmerman’s not on set, he volunteers at a local courthouse, hangs out with his girlfriend, and takes ballroom-dancing lessons. (He still lives at home, but yearns for independence so that one day he can do his own laundry.) While Brewer holds out hope that AHS will have her back in some capacity — Adelaide died in season 1, but the show has no problem bringing people back as ghosts — she’s currently working on her bachelor’s degree in theater at a local college and studying for her driver’s license. Potter, meanwhile, balances her work on Glee (shooting for season 3 wraps in May) with her duties for the White House: In November she was asked to serve on the Committee for People With Intellectual Disabilities, which will advise President Obama on how to help the community gain better access to schools and jobs. Says her mother, Robin, ”Because she has a role on Glee, it’s given her a voice to speak out for people who can’t speak out for themselves.”

But her daughter’s heart remains with the Cheerios. When weeks go by and she hasn’t heard from Glee, the petite blonde assumes the worst. ”I get nervous because they may fire me,” she says with a tinge of worry. That’s not likely to occur; she’s set to appear in at least one more episode when the show returns from a six-week hiatus in April, but like any actor in a recurring role, she has no guarantees. To her credit, Potter doesn’t hesitate to lobby for more screen time whenever she’s around Murphy. ”The thing about Lauren compared to all the kids we’ve used is that she’s the only one who will come up to me and say, ‘You’re not using me enough. I haven’t been on in three episodes. It’s time to bring me back,”’ says Murphy. ”She gets that she is a very important role model. She is very vocal that her fans want to see her.” Says Potter with a smile, ”My parents keep telling me they have to stop bringing me to restaurants, because people always recognize me.”

Catching Up With Corky

Though complete strangers still yell out ”There’s Corky!” whenever Chris Burke walks down the street, he’d prefer to receive accolades for the work he does now for the National Down Syndrome Society. Since 1994, Burke, 46, has served as a goodwill ambassador for the New York City-based organization. The former costar of the ABC drama Life Goes On, who earned a Golden Globe nomination in 1990, looks at the achievements of his ”very good friend” Luke Zimmerman as proof that huge strides have been made. ”I’m so grateful,” says Burke of the new opportunities for the DS community. ”It’s given them the chance to do other things in life.” Though he’s never seen American Horror Story (”I don’t like scary movies at all”) and he declines to watch Glee because it didn’t cast a real-life paraplegic to play Artie Abrams (”To me it’s discriminating against people who are physically challenged”), he’s thrilled for his colleagues Potter and Brewer: ”I’m so glad Lauren and Jamie are doing great.” Burke, who lives in Manhattan with his parents, longs to make a return to showbiz, if only to follow in the footsteps of other former child actors. ”I would love to do different things like behind-the-scenes work,” says Burke. ”Just like Ron Howard!”

DS on Reality TV

So You Think You Can Dance

In 2008, a 25-year-old dancer with DS by the name of Brett Banford auditioned for the Fox hit. Though he didn’t advance, he did make his point, saying, ”I’m just here to prove to people that people with disabilities can actually have a normal life and live it.”

The Glee Project

In season 2 of Oxygen’s singing competition, airing this summer, at least one singer with DS is expected to make it through the first round of cuts.

Perfectly Normal

A&E is working with Bunim/Murray Productions (The Real World) on this unscripted show, which follows six developmentally challenged men and women living together — five of whom have DS. (The show is tentatively slated to bow later this year.)

More Actors with DS

Josh ”The Ponceman” Perry, 32

He’s generated over 100 million hits for his ”Retarded Policeman” webisodes — though they haven’t won him many fans among DS advocacy groups. Perry was recently cast opposite Josh Groban in the movie Coffee Town, from Brad Copeland (Grounded for Life).

Andrea Friedman, 41

Saving Grace, ER, Life Goes On, Family Guy

Peter ten Brink, 19

Hallmark’s A Smile as Big as the Moon

Blair Williamson, 32

Scrubs, Nip/Tuck, The Guardian, CSI

Katelyn Reed, 9

American Horror Story, Mr. Blue Sky

Comments