By: Rich Juzwiak
People with disabilities made me laugh more times than I could count last weekend when I attended the 10th annual Sprout Film Festival. There was Lauren, an Australian student profiled in The Ball, who while cuddling her dog noted that he had the same eye and hair color as her. “My parents will think I’m a Labrador!” she exclaimed. There was the narrator ofStepping Out, who had an unspecified disability and said of her boyfriend with Down syndrome, “I’m trying not to laugh at him. But it’s just so hard when he gives you that lovely look!” There was Jonathan, an actor with Down syndrome who got his start several years ago onSesame Street. His most recent work is a narrative short called The Wing Man, in which he has brunch with his Brooklyn hipster brother.
After that film screened, Jonathan was called up to the front of the room for a Q&A. He addressed the 50 or so people in the crowd with an urgent plea on the behalf of people with disabilities: “We need help. We need a lot of people’s help to understand how we feel.” After, someone in the crowd asked which of the six films he just sat through that he liked best (that is, besides his own). He launched back into his plea. Someone on the panel next to him explained the question again after he went on for a bit. He named The Wing Man. “No, no. Which was your favorite of the films you weren’t in?” Jonathan answered Palindromes, Todd Solondz’s 2004 feature. “No, your favorite of what screened today?” The Wing Man, he said again. That was Jonathan’s story and he was sticking to it. He and the rest of the room cracked up as one.
Those bits of joy were the high points of the emotional roller coaster that was the Sprout Fest, which is dedicated to “making the invisible visible.” Like a channel from television Utopia, Sprout beamed at me nonstop disability-awareness programming in various shapes and sizes in the Ruth and Harold D. Uris Center of Education at the Metropolitan Museum of Art (think two conference rooms just barely upgraded from a Holiday Inn banquet room). I ended up sitting through over 13 hours of documentaries, narrative shorts, animated pieces and quick, human-interest segments worthy of local news broadcasts or maybe Inside Edition.
The Sprout fest bloomed from a vacation program founded by Anthony Di Salvo in 1979. Di Salvo had trained leaders to work with people with developmental disabilities and then decided to put their expertise to mass use by enlisting them to take groups to places like Disney World, Lake George, Bermuda and Atlantic City. (The vacation program still exists, in its regular and “slow pace” varieties). In 1996, Di Salvo began making films by using those on the trips as actors and from there he started researching what other media existed for and featuring people with developmental disabilities. He’d gathered so much knowledge by 2003 that he began the film festival.
The Sprout festival’s goals are based in the power of exposure. For people with developmental disabilities, Sprout aims to empower by showing people in similar situations onscreen (“When does that happen for them? It doesn’t,” Di Salvo asked and answered when I talked to him by phone a few weeks before this year’s festival). For families, siblings and professionals who work with people who are developmentally disabled, Di Salvo says Sprout “rejuvenates…it makes them realize why they’re devoting their lives to this field.” And for outsiders such as myself who have little personal experience with the people who have disabilities, Di Salvo says, “It’s just a wonderful way for them to learn, to see the potential and to look at people with developmental disabilities in a different light. Those are the hardest ones to get in the seats.”
Indeed, everyone that I talked to at Sprout either was close to someone with a developmental disability, worked with people with developmental disabilities or had a developmental disability. Di Salvo thinks that people tense up when they hear about media prominently featuring people with disabilities –- that they figure the material will inevitably be depressing and life is depressing enough.
They wouldn’t be entirely wrong to assume that. There was absolutely harrowing material to be found within this year’s Sprout fest. I watched Against the Fence: The Riley Campbell Story, a 19-minute documentary about a man in Oregon who was targeted and beaten because of his developmental disability and autism. This happened one night about five years ago, and he waited until 9 a.m. to tell his mom, since she had taught him that calling anyone between the hours of 9 p.m. and 9 a.m. was inappropriate. Riley’s high school aged assailants were eventually tried and convicted.
There was the story of Eliza, a woman with Down syndrome, who was removed from a pottery class she enrolled in at South Oregon University. She was accused of being a distraction and for not having the adequate “cognitive ability.” (“I want to know why they’re treating me, a 20 year old woman, like I’m different. It’s because I have Down syndrome,” she laments in Hold My Hand.) There were little bits of verbal atrocities shared stoically from relatives as details of larger stories. In Keith and Daniel, a mother reveals that a fellow churchgoer said of her two boys who have Lesch-Nyhan (a syndrome that affects muscle control and often causes fervent self-mutilation), “Well, you know they’re from the devil.” In Determined to Dance, a 16-minute doc about a troupe of interpretive dancers with Down syndrome, a father says that upon his daughter’s birth, her doctor told him, “Your daughter has Down syndrome. Don’t expect much.” In Little Mom, 12-year-old Kassandra, who takes care of her 16-year-old nonverbal brother who cannot take care of himself whatsoever, says that she’s had to let go of friends “because they might not accept what my brother has.”
I cried just as much as I laughed. The Sprout experience was so emotionally draining that after spending nine hours at the Met on Saturday watching 28 different pieces ranging in length from one to 77 minutes, from from theater-ready doc to personal video essays edited on iMovie, I went over to my friend’s house to pick him up before we went out and immediately fell asleep. Sprout wasn’t something I could just drop in on. It had actual physiological effects on me.
As sad as many of the stories were, what left the biggest mark were the ones that weren’t, the ones that managed to defy woe-is-me sobbing and cuddly romanticism. Alternate narratives came by way of portrayals suggesting the patience-testing qualities of people with disabilities. The well-made Travels With My Brother documents co-director Christine Alexiou’s sibling Vas and his autism honestly enough to be excruciating, as his “thought attacks” prevent his ability to keep composed in public. The Even More Fun Trip, animated in the rotoscoping style that its director Bob Sabiston applied to Waking Life, follows the amusement park visit of a man with Asperger’s who can’t stop comparing it to his last trip there (“I’m a lot wetter than I was three years ago”) or repeating himself in general (“I hear it’s a thrill ride. It’s a thrilling ride. Yeah, what a thrill it is.”). In OC87, Bud Clayman directs his own chronicle of obsessive-compulsive disorder, depression, bipolar disorder and Asperger’s. He repeatedly narrates what goes through his head in public situations –- on a bus, in a bar, walking down the street –- in skin-crawling detail. (He has to tell himself where he can cast his eyes so as not to offend or unnerve.) It’s indulgent, but you get the sense that Clayman knows no other way. Unraveling and parsing out what’s in his head is his Sisyphean task.
Di Salvo told me that his selection committee doesn’t choose only positive portrayals and these three, in particular, backed that up. “Because what’s positive?” he added. “As long as they’re realistic portrayals, that’s what we’re going for.”
Even more shocking, from an outsider’s perspective, were the repeated expressions of pride. Clark Kerns, who has Down syndrome and idolizes Superman as well as Sasquatch (on the latter: “He’s very elusive, and I believe that through technology, through stealth technology, we can find him”) says in Between Sasquatch and Superman, “I’m proud I have this disability.”
If acceptance and understanding are a major hurdle, pride is revolutionary. There was so much of it that it was as though the screen were marching. A father talked about loving his daughter so much for who she was that if he had the choice to remove her disability, he wouldn’t. An upbeat sister informed the world, “If you have a brother with autism, it just opens up a whole new door for you.” Eliza wouldn’t let what appeared to be a bigoted higher education system get her down: “I like who I am,” she said matter of factly. Di Salvo’s own brilliant One Question is a seven-minute short in which people of all range of disabilities are asked what one thing they would change about themselves if they could. The answers range from, “Be a better person,” to, “Strong -– Popeye.” Most frequently, though, they said, “Nothing.”
These people dare to take on the little discourse on their condition that exists and assassinate it.No Pity, a collage-style documentary narrated by the computer generated voice its autistic teenage director Drew Morton Goldsmith uses as his own, takes to task heartstring-tugging fundraising tactics because “evoking pity made disabled people pitiable and pitiful.” He rejects pity-based fundraising because it “doesn’t really help” -– that free money costs too much to the image of the disabled.
This is a radical position that not everyone has the option of taking. I got the feeling that Sprout would have accepted the bleedingest of hearts. Before each thematically organized program –- The Arts, Who We Are, Siblings/Family, Adult Content (not as scandalizing as it sounds, this selection mostly contained movies with a few curse words, although the music video “Dennis’ Revenge” features a kid with Down syndrome popping and distributing pills, getting into car accidents, urinating in public and sexually assaulting a woman) -– Di Salvo lamented the size of the crowd, which at its most voluminous that I witnessed in the main room, filled about half of the 130 or so available seats. Again and again, the people that I talked to saw Sprout as preaching to the choir that they’re part of.
There’s the distant hope of finding another Willowbrook, the 1972 documentary hosted by a young Geraldo Rivera that showed the deplorable, sub-human conditions of several institutions for the disabled including the titular one on Staten Island. The film won a Peabody and helped pressure New York state to restore funding to the institution. People were released, programs were created and misdiagnoses were corrected, explained its executive producer Albert T. Primo in a Q&A session after the film was screened at the conclusion of the festival. People in the audience shared their stories, too -– just being told by Rivera that their kids didn’t have to suffer in urine-soaked rooms with one caretaker to every 40 disabled people was enough to mobilize parents to demand better conditions and alternatives. Without exposure to the indignities, people have a hard time understanding there’s a better way.
There are practical implications to this. Medicaid, for example, does the bulk of the funding to an organization like the Arc, whose executive director of its Southern Maryland branch, Harriet S. Yaffe, I talked to throughout the weekend. Medicaid’s model has long been a medical one -– i.e. “How can we fix this problem?” But people with disabilities aren’t problems to fix; they’re people with agency and hopes and dreams whose lives aren’t solved by being issued some thankless and mindless job.
But the more philosophical implication is that popular culture is the means through which we relay human experience, and if we can use films about the disabled to do that (as Yaffe does –- she watches movies at Sprout to then acquires them to show for Arc advocacy), we can change minds that will in turn change lives.
It makes sense, and it’s actually infuriating that the public is largely closed off to such content. The reality TV craze may have dropped a few degrees from its fever pitch of yesteryear, but we remain as a culture fascinated by our own humanity and its extremes. What was on display last weekend via Sprout was plenty of extreme human behavior to enjoy at face value or meditate on as something you’re lucky you never have to experience. It seems utterly hypocritical that in our survey of what it is to be human, we’ve somehow left out people with disabilities almost entirely (no one is the new Geri Jewell or Chris Burke). In all of our recent discussions of representation and implicit bigotry regarding Girls, for example, has anyone even made a passing observation about the lack of people with disabilities in culture? I haven’t seen any. I don’t think that’s out of hatred, just raw ignorance: people don’t even think to think about people with disabilities.
But maybe they will. I talked to Sprout’s co-director Scott Randall, who says there are more movies to choose from every year (Di Salvo notes an increase in movies about autism and Asperger’s, in particular, a positive correlation to increased diagnosis). And the dialogue at Sprout was so impassioned and engaged and just plain correct that it feels like some kind of burgeoning -– with cultural sensitivity seeming to increase by the day, it’s inconceivable that this kind of fairness won’t break through. What we talked about at Sprout was basic civil rights. Maybe the general tone of optimism has infiltrated my brain, but it’s hard for me to interpret the way Sprout and its attendees handled people with disabilities as anything but the future. Sprout is the avant garde of tolerance discourse. This radical thinking requires no stretch of imagination, just a little heart. Willowbrook is subtitled “The Last Great Disgrace” in reference to the way we treat the disabled. I just can’t believe that we’ll be disgraces forever.
At the end of the festival, Di Salvo told the waning crowd, “Please come back next year. Bring someone who’s not a member of the choir, if you know what I mean.” They did, and far too well.