Not a costume: Disability and authenticity in the media

Mat Fraser took 24 hours to think before he accepted the role of Paul the Illustrated Seal on “American Horror Story: Freak Show.” “There was a stunned silence on the other side of the phone. No one had ever not said ‘I’d love to,’ immediately,” he said, sitting on the couch in his Manhattan apartment in January, recalling the phone call during which he was offered the part.

The show focused on performers in a Florida freak show in 1952, and featured some non-disabled actors playing disabled characters. Fraser has phocomelia, a congenital skeletal disorder that resulted in short arms at birth. He has devoted part of his career to speaking out against the  casting process,  called “crip drag” or “cripping up” by some within the community. While he acknowledges that people can’t be cast in a role because of their disability alone, Fraser said that is no excuse for crip drag. “Obviously they’ve got to be a good actor, but hey, look around, there’s plenty of us who are good actors.”

Mat Fraser hopes to combine his martial arts and acting skills on a film set one day. Photo by: Eli Schmidt

Hollywood is not looking very hard. Nearly one percent of characters on primetime network television in the 2015-16 season are disabled, according to GLAAD’s annual “Where We are On TV” report, which tracks the representation of all minorities across the medium.  Only one of those eight characters is played by a disabled actor (Patton Plame, played by Daryl Mitchell  on the CBS show “NCIS: New Orleans.”) This is a .50 percent decrease from last year, when 1.40 percent of characters on these networks were disabled. Both reports display a large disparity, considering that based on the most recent census information,  12 percent of the American population identifies as disabled. “American Horror Story” is a cable show, so its  characters weren’t factored into statistics in the the 2014-15 report.

Despite his initial hesitation to join, Fraser praises creator Ryan Murphy’s representation of disability on the show, especially when telling Paul’s story. A scene in which Paul asks his girlfriend to see him as a man,  not just a lover, stood out to the actor. “Now, when does a disabled person ever get to say  ‘Hey, I’m a person too, OK? Not just a sex object.’ It’s never flipped like that.”

Kylie Jenner posed in a wheelchair on the December 2015/January 2016 cover of "Interview" inspiring outrage in the disability community. Click the image to read some reactions. Photo by: Steven Klien

Kylie Jenner posed as a wheelchair user in a bondage outfit on the December 2015/January 2016 cover of Interview inspiring outrage in the disability community. Click the image to read reactions. Photo by: Steven Klien

Typically, disability is used as a device for pity within scripts, a tragedy that must be constantly overcome. When differently-abled actors are considered for roles, they often encounter storylines that perpetuate these stereotypes. Anita Hollander, actor and National Chair of SAG-AFTRA Performers with Disabilities, recalled a time when convincing a director to change just one word in a script prevented a soap opera from spreading fallacy about disability and sexuality.

Her character, an amputee, was talking to a recently disabled man about the challenges of being newly disabled. In the original script the woman asked if  ‘lack’ of sex was difficult for him. Hollander suggested the word ‘lack’ be changed to ‘fear,’ erasing the assumption that disabled people don’t have sex. “By changing one word, I was able to get them out of trouble,” she said.  Everyone on set was grateful that by making a simple change, they avoided potentially negative feedback from viewers, and added authenticity to the story.

Hollander played Grizabella in Cats at Surflight Theater. It's one of her favorite roles she's ever played. Photo by Pook Pfaffe

Anita Hollander played Grizabella in “Cats” at Surflight Theater. It’s one of her favorite roles she’s ever played. Photo by Pook Pfaffe

But Hollander, who has been advocating since the 1980s, is no stranger to a different experience on set. A week before shooting the soap opera, after a long day dealing with what she described as condescending treatment while working as a body double and consultant on “The Sopranos,”  she completed her scene in one take. “[The director] shook my hand, he said, ‘We could not have done this day without you,’” she said. “I turn around and walk away and behind me I hear him say to his production assistant, ‘You see, that’s how you do it, you get an actress to play the part and then you get a real disabled person to [double in] the scene.’” Hollander realized that after the hours she’d spent answering questions, he’d learned nothing.

Click the image for more information

GLADD’s 2015-16 “Where We Are On TV” report found that only .90 percent of characters on primetime network television have a disability. But they did not investigate how many of those eight characters are played by disabled actors. Click the picture for more information

More than a decade has passed since Hollander’s experience, and while on screen progress is slow, disabled actors and decision-makers in Hollywood are starting to come together to have open dialogues about how to better represent the differently-abled community.

In September, Inclusion in the Arts (ITA), an advocacy group that fights for the representation of all minorities in the media, teamed up with the Casting Society of America (CSA) for a town hall meeting. About 100 people were there to talk about how to provide more opportunities for disabled actors. “…I think coming into it, both sides, the actors and the casting directors…there’s always this sort of trepidation,” said Christine Bruno, an actor and Disability Advocate at ITA. The meeting was the first phase of a larger commitment CSA has made to disabled actors.

Casting directors talked about the cost of accessibility on set, as it had been a reason they were reluctant to cast disabled actors. Their research showed that it was not as expensive as they thought. Sharing these findings with executives will hopefully lead to more audition opportunities for actors who require accommodations, and more work. After the meeting, Bruno got an audition for a non-disability specific role in a Broadway play, an opportunity she said came as a direct result of the event.

Christine Bruno and David Harrell, advocates at Inclusion in the Arts Photo By Esme Mazzeo

Christine Bruno and David Harrell, advocates at Inclusion in the Arts
Photo By Esme Mazzeo

ITA was founded in 1986 to address problems of racism and exclusion within theater, film, and television. As other minority groups found organizations more specific to their needs to fight with them, the organization began to focus more heavily on disability. “I think because of the broad diversity within disability, there was not a uniformed artistic movement in theater,” said David Harrell, Disability & Programming Associate at ITA, when talking about the progress disabled performers still have to make compared to people of color and the LGBTQ community.

Every minority group tracked in GLAAD’s report has at least triple the representation of the disabled community this television season. Bruno and Harrell agree that the diversity makes the fight more complicated. In the report, everything from HIV and bipolar disorder to wheelchair use and deafness is classified as a disability. Unity is difficult because each group has their own specific needs.

Bruno said one of the most difficult parts of her job is explaining that disability is a culture, not a technical skill. Like many other advocates, she considers able-bodied actors playing disabled roles similar to blackface. “…Not only is it offensive, but it’s not accurate and it’s not authentic not just because of the physical attributes. It’s not authentic because it’s a lived experience that that actor doesn’t have.”

Blackface is readily accepted as a racist, unacceptable practice  in Hollywood today, but public ignorance makes it more difficult to prevent crip drag. Advocates for disabled actors emphasize  that disability is not a costume that can be removed at will. That fact, combined with the fact that there  disabled performers available to consider for disability specific roles, makes casting able-bodied actors as disabled characters inexcusable to some.

 Christine Bruno and David Harrell talk about the importance of authentic representation of disability for the future of the arts. Video by: Esme Mazzeo

ITA keeps a database of actors who identify  differently-abled nationwide.  400-450 actors  are currently registered, though that number fluctuates. Bruno and Harrell field casting calls and pass contact information to casting directors via this database. More representation in the arts begins with increasing the number of performers registered there.

The advocates hope that ITA will focus more on educational outreach in the future. Harrell thinks this will make it easier for disabled students to get into acting programs. Opening up the conversation might at least put the possibility in admission directors’ minds, he said. “…So when a student comes through the door, they have at least been exposed in some way and they say ‘oh wait, let me take another second, not just dismiss this immediately, let me take a moment and engage.’”

Finding a voice online

Mallory Kay Nelson learned how to sew when she was 13 years old, went home and made an Elizabethan gown. She’s been pursuing a career in costume design ever since, earning a master’s degree in the subject from Carnegie Melon University.

So when Britain Valenti started building a crew for her socially conscious and diverse “Interrogation: a Sci-fi Web Series,” about a revolution against the government set in the future,  asking her friend Nelson to be artistic director was the easy part.

When she asked Nelson to play the part of Lana, a tough, crutch gun carrying ballistics specialist, she met resistance. Nelson had stopped acting when she was 14, after an accident resulted in her becoming a hemi-pelvectomic amputee. Dyslexia makes learning lines difficult for her. She agreed to join the cast, on the condition that she have one line per episode. “I was there to carry around a really awesome crutch gun, that was my sole purpose.”

As time went on her confidence grew, and she wanted more lines. So when it came time to film a crowd funding video for season two, Valenti decided to give Lana a centric episode. It’s a thank you to fans that have supported the series, and it made sense to focus on Nelson’s character, as the behind-the-scenes videos about Nelson/Lana have more views than any other cast videos.

The women suspect this is due in part to the devotee community, a group of people who fetishize disability. While they acknowledge that audience, the main goal of “Interrogation” is authenticity. When writing the script, Valenti wanted to draw from Nelson’s real life. She recalled a conversation in which Nelson had admitted to having a difficult morning because her ostomy bag exploded, and used that event as a starting point to tackle misconceptions about disability in an 11 minute, 18 second episode.

Mallory Kay Nelson as ballistics specialist Lana.

Mallory Kay Nelson as ballistics specialist Lana. Photo courtesy: Britain Valenti


The majority of web series are independently produced, allowing the writers and actors complete creative control, something rare in mainstream television. On the set of “Interrogation,” this freedom was not taken lightly.

For the sequence in which Lana changes her ostomy bag, Nelson actually changed her own on film. “It’s important to me that it’s accurate. Because I feel like accuracy in art makes for good art.” The sequence only lasts a few seconds, but they are powerful, as it’s rare that realities of disability are portrayed as truthfully and casually.

Nelson (front), Kari Alison Hodge and director Patrick Wells filming the bedroom scene in "Lana's Day Off."

Mallory Kay Nelson (front), Kari Alison Hodge and director Patrick Wells filming the bedroom scene in “Lana’s Day Off.” Photo courtesy: Britain Valenti

Every choice was deliberate and intended to challenge people’s perception of “normal.” This included the wardrobe for the flashback scene in bed, featuring Lana and her ex-girlfriend. Nelson wanted it to mirror a classic Calvin Klein ad in the 80s that featured two women kissing in plain, white underwear. “…It’s a familiarity of something sexual and something erotic, but disability is there and people kind of get thrown off when disability shows up in most people’s minds where [it] doesn’t belong,” she said.

Caitlin Wood and Cheryl Green decided to take a more humorous approach to disability in their series “Very Special Episodes,” inspired by the independent turned Comedy Central web series “Broad City.” Using grant money they received from the Regional Arts & Culture Council, their goal was to make episodes about nothing.

Audiences at a screening of the project struggled to understand an episode called “Visit” in particular. The landlord comes to tell the girls he isn’t raising the rent on their new lease, and they’re rude to him. People kept searching for a message that Wood, the writer of the series, insists wasn’t there. “We weren’t trying to make some huge political statement, but people still didn’t want to see disabled people in that position where they could be jerks too.”

The disabled community is the series’ intended audience. Both women are frustrated that more art is not created for them. Green said that because our society views media as “arbiters of good taste,” not seeing one’s experience reflected on screen sends a clear message that it is not worth being there.

Wood hopes that the episodes inspire the community to continue creating media for each other. “We are an audience, and we are a wonderful community, and we deserve to have things for us,” she said.

Progress on Broadway

Ali Stroker at her apartment in New York city. Photo by: Esme Mazzeo

She believed that she could, so she did. Ali Stroker at home in Manhattan.
Photo by: Esme Mazzeo

Ali Stroker saw “Beauty & the Beast” on Broadway when she was in  third grade. It changed her life; that’s when she knew she wanted to be an actor. After graduating from NYU’s Tisch School of the Arts with a BFA in drama, she’s guest starred in shows like “Glee and “Faking It.” She is currently fulfilling her childhood dream playing Anna in Deaf West Theater’s production of “Spring Awakening,” and making history as the first wheelchair user to appear on Broadway.

The production is performed in American Sign Language and features deaf and hearing actors. “I think that Deaf West is really a leader in bringing differently-abled actors to the stage and taking what some people think is a limitation and creating such beautiful art and such an opportunity,” Stroker said. Characters acknowledge their disabilities, but they are not a centerpiece to the story.

Stroker as Anna in Deaf West Theater's "Spring Awakening" Photo by Joan Marcus

Ali Stroker as Anna in Deaf West Theater’s “Spring Awakening”
Photo by Joan Marcus

She feeds off of the energy from a live audience, considering them another character in the experience. Talking to patrons has help her realize the impact of the show. “It’s just proof to me that what we’re doing and the kinds of stories that we can share through… vessels of people that do have disabilities is so important, that those truths need to be told.”

Realizing her dream has helped other wheelchair users believe theirs are possible. She recalls meeting a student who thought her goal to be on Broadway might be unattainable before coming to see the show. Seeing Stroker on stage changed her mind. “I had a moment of like ‘whoa, this is actually really important, what’s happening…’”

Ali Stroker answers questions about her fears, her hopes for the future, and more.  Video by: Esme Mazzeo

Despite the attention that comes with making  history, Stroker is focused on the future. “I don’t necessarily feel pressure as much as I feel like we still have a lot of work to do. I’ve been given this opportunity but there are thousands of people who also want this opportunity.”