Claiming the spotlight: PHAME gives adults with disabilities the stage

Jace McFeron shows off his PHAME Honor Tour T-shirt. Photo by Erin Rook.
Jace McFeron shows off his PHAME Honor Tour T-shirt. Photo by Erin Rook.
By Erin Rook, PQ Monthly

When Stephen Beaudoin first heard about Pacific Honored Artists, Musicians, and Entertainers (PHAME) — an arts organization serving adults with developmental disabilities — he wasn’t sure what to expect. A friend suggested that Beaudoin invite the group’s choir to perform in a benefit concert he was producing called “Songs for Haiti” and he hesitantly offered them one song.

“I figured it could either be really beautiful and inspiring or it could totally miss the mark,” Beaudoin says. PHAME didn’t have a YouTube presence at the time and he’d never heard them perform, so he was going out on a limb. “They blew it out of the water. It’s a performance I’ve never forgotten…. Seeing a great performance stays with you, and what I was observing was a great performance, not a great performance with an asterisk.”

Beaudoin was so captivated that two months later he was on PHAME’s board, and before long he became the group’s executive director.

PHAME offers arts education classes about 30 weeks out of the year, including everything from yoga to an iPad music lab class and rehearsals for its annual summer musical. This year, the group is putting on a performance of “Bye, Bye Birdie” (June 22-23 at Mount Hood Community College). Last year’s show was “Willy Wonka.”

In all, PHAME participants give 15-20 public performances each year. In 2012, members of the group went on a tour that had them doing 15 shows in 10 days. Past performances have included collaborations with high-profile artists like Pink Martini and the Portland Cello Project. This year, the group will take the main stage at the Mississippi Street Fair for the first time.

“PHAME is about art, but it’s also about community,” Beaudoin says. “Some of the students have never stepped on stage in their lives. If that’s not empowering I don’t know what is.”

Jace McFeron, 26, is one of those students. When he first came to PHAME, the segregation he faced as person with developmental disabilities at Gresham’s Centennial High School left him with few opportunities to explore the arts or build friendships.

PHAME students perform the musical “Willy Wonka.” Submitted photo.
PHAME students perform the musical “Willy Wonka.” Submitted photo.

PHAME changed all that.

“The first week or two that we came here, we came early to check out neighborhood,” says Jace’s mother, Debi McFeron. “We stepped into Starbucks and found all the ‘phame-ous’ people. It was so cool. Jace was there with friends hanging out in Starbucks. On the way home he said it was the first time he’d had friends.”

Those friendships have only grown through Jace’s participation in the group. In addition to performing in “Willy Wonka” (as a squirrel) and participating in the tour, he busts it out at PHAME’s social events, including dance parties.

It’s a lot like “Glee,” Beaudoin says, referencing the popular television show about a high school show choir that brings together students who are different and help them create something bigger than themselves.

Jace recently moved to a group home in St. Helens and travels nearly an hour each way to attend PHAME classes. When he lived closer, he came more often, and he’s having a hard time adjusting to the change.

“No more, no more,” he says.

Kayla Rockdaschel, who works with Jace a few days a week, says it’s a common refrain since he moved out to the new home. She tries to reassure him that they’ll keep coming to PHAME, even if it’s not as often as before.

Jace’s verbal abilities are limited due to cerebral palsey. He typically uses a computer to help him communicate, but his mother says it’s currently in the shop. So the others in the room talk about Jace’s experiences with PHAME, checking in with him frequently to ensure that they are representing him accurately.

Despite his verbal and mobility challenges, Jace will try anything once and, as a result, has developed a full repertoire of creative outlets.

“It’s such a way of expressing yourself,” Debi says of her son’s involvement in PHAME, which has included visual arts, acting, dancing, yoga, and singing. “These are things he wouldn’t get to do [otherwise], and because he doesn’t have the gift of speech, that is a way of expressing yourself that is really valuable.”

In addition to PHAME, Jace is looking forward to attending Portland Pride. In past years he’s marched with East Rose Unitarian Universalist Church; the congregation has been supportive since Jace first came out at age 14. His mother attended PFLAG meetings there.

For the most part, Jace has been met with positivity around his sexuality. But that wasn’t always the case. When he came out at age 14 to a teaching aid, she reported his disclosure to the authorities.

“Her assumption was that he must have been violated in some way. [The authorities] were required by law to come to our house and interview us. Fortunately they understood,” Debi says. “Folks with IDD [intellectual and developmental disabilities] are not seen as sexual; they’re also seen as victims. It’s easy to victimize someone who has a disability. But that’s a long jump to the assumption that they must be [victims].”

It’s not uncommon for people with disabilities to be de-sexed by society. Debi admits that even she, while generally supportive, had a hard time wrapping her mind the idea that Jace was gay.

“I said, ‘Well, that’s ok, if that’s what you decide.’ I thought at 14 he probably didn’t know how to decide,” Debi says, adding that it’s hard for any parent to see their child as sexual. “I probably didn’t know enough about it to know it isn’t about sex. Jace’s idea of gay might mean something different, but everyone’s might.”

Fortunately, at PHAME, Jace is fully accepted, as a person with a developmental disability and as a gay man. And though there is only one other out LGBTQ participant at present, Jace knows he’s not alone.

“You’re not the only ‘fierce’ one here,” Beaudoin reminds him. Jace immediately points with excitement at Beaudoin, who is also gay.

Jace is proud of who he is. Recently, he asked his mother if he could order rainbow spoke decorations for his wheel chair. But the cost was prohibitive, and she said they would have to find a way to make something. A few days later, Jace returned from PHAME with rainbows made of multicolored duct tape adorning his wheels.

Though there aren’t many outlets for LGBTQ people with developmental disabilities, Beaudoin says the queer community has responded positively to PHAME.

“We are very lucky to have a lot of support from the LGBT community,” he says, citing Equity Foundation’s backing of the recent tour. “I think what anyone sees from the LGBT community are the resonances between persons with disabilities and LGBT people” in terms of the need for equality in the realms of employment, housing, and families.

Beaudoin is glad that Jace has been so accepted, both at PHAME and in the LGBTQ community, but he acknowledges that there’s still progress to be made.

“Discrimination against people with disabilities is prevalent. They face mounting stigma, lack of access to services,” he says. “It can be difficult for the LGBT community to remember; there can be a lack of presence and awareness. Through our public performances, we’re helping to reduce stigma.”

Learn more at phameacademy.org.

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