“Love for Alyssa,” Jennifer Kaczmarek’s photography exhibit, opens at Hollingsworth Gallery, at City Market Place in Palm Coast, Saturday, May 12, with a free reception at 6 p.m., and runs through May 25. For donations to Alyssa, see the Love for Alyssa website.
Arthrogryposis is a rare disorder that prevents one’s limbs and muscles from developing and stretching out normally. It restricts movement by locking up joints. It can restrict speech or other daily functions such as eating. It affects about one in every 3,000 live births. There’s no cure.
It doesn’t sound like the inspiration for an art show. But that’s if you haven’t met Alyssa Hagstrom, the defiantly effervescent 8 year old who’s lived with the condition all her short live, or Jennifer Kaczmarek, the fine arts documentary photographer who’s been recording Alyssa’s life since she met her shortly after her fifth birthday in stills that give the lie to the notion of a disorder. Whether Alyssa is sitting up with an oxygen mask on, basking in the languor of a rising or setting sun in her wheelchair, sitting in the throne-like arms of her slightly older sister Alexxis or balancing on father Duane’s shoulders, she is all movement and life. Even in one of the most arresting big photographs of Alyssa, where only her shins and feet appear, dangling from above in a bathroom, the suggestion is of a child taking flight, not being held down.
What disorder there may be is in the stillness around Alyssa, or the silence: she abides neither.
“She’s amazing. She really is,” Kaczmarek says. “Her personality is so full of life. You would never evenen known that she was handicapped if you didn’t see her, if you were just talking to her. You would never know. She is just a real social butterfly.”
That’s what Kaczmarek’s work captures, with never a hint of condescension. Kaczmarek, who’s been photographing her own three young children almost uninterruptedly since her 9-year-old daughter Bella was 1, isn’t talking down to the child—many of the pictures are at eye level or below, making Alyssa dominant—but letting her talk through these big, almost oversize color prints, which form “Love for Alyssa,” the latest show at Hollingsworth Gallery, opening Saturday evening with a reception at 6 p.m., and with Alyssa present.
“I just want people to have a glimpse into her world,” Kaczmarek says.
Kaczmarek is asking you for one thing: donate money. “Love for Alyssa” isn’t just a photography exhibit. It’s a fund-raiser that takes its name from the non-profit Kaczmarek established in January 2011 for Alyssa’s sake, to raise money and help with expenses from Alyssa’s care, expenses not covered by other means. At this moment she needs a costly lift, because she is getting heavy. Kaczmarek has raised $2,300 since. The prints will be priced in the high three figures, but Kaczmarek expects to raise most of the money through the show by way of outright donations: checks in whatever amounts patrons would contribute, along with small contributions for children’s art work that fills a large wall of the gallery. Students who take art classes at Hollingsworth, along with children from Bella’s Girl Scout troupe and from children at Trinity Presbyterian Church, have painted or drawn works inspired by Alyssa, and that may sell for a few dollars.
“Really, besides even just helping her financially, whatever I could do,” Kaczmarek says, “I had other motives for doing this. And it was really because how awesome her spirit is. I was hoping this would be something she could carry with her when she got older, because the only thing I always think about with her is I think about the future. I think about her sister, and now with her brothers, and how everybody is going to go off, they’re going to be with their friends, they’re going to have their lives. It’s different now that she’s little. And things will hit her when they don’t, now. I thought this would be something positive for her.”
For Hollingsworth Gallery, the show is and isn’t a departure. Friends and patrons of co-owners JJ Graham’s and Mercedes McCartney’s gallery are now used to always being surprised there. The intimate realism of Kaczmarek’s invitation to share in Alyssa’s disorder is the gallery’s latest way of inviting you on a limb, daring you to be charmed by what you would, in more conventional circumstances, look away from. Graham only makes molds to break them, and with Mercedes McCartney, his companion and a photographer who recently curated Hollingsworth’s “7 Cameras” show (which featured Kaczmarek’s work), the exhibit is in line with the gallery’s broader emphasis on photography, though in this case Graham is foregoing any of the proceeds to Kaczmarek’s cause.
“We’ve had three really successful shows,” Graham, said. “First I was kind of really worried about whether or not we were going to be able to do this without sponsors, but some things happened, and we can afford to do it. I feel good about it, and we have summer camp coming up and that brings in a lot of money, so maybe we can do something like this once a year.” Even before the show opening, Graham, had an envelope filling up with donations for Alyssa.
“Our members allow for this too,” Graham adds. “A lot of people say, oh, what do I get for my membership, outside of the wine at the openings. Well, our members are responsible with their membership dues and things like that that afford us to be able to do this. In other words, they’re being honored by this as well.”
He, too, was taken with Alyssa. “When I met her,” Graham said this week of Alyssa, who came by the gallery, “she immediately asked if it was OK to paint a picture. Incredibly bright and radiant child.” And so she did, holding the paint brush with her teeth.
Much of the story of Alyssa has evolved, in words and images, at the website Kaczmarek created. The website will always be there, though it’ll become a subsection of a larger idea that Kaczmarek has been gestating with two other photographers, Jerry Englehart Jr. and Robert Larson, both of whom have causes of their own. So the website will be renamed to reflect the more global approach Kaczmarek wants to take, turning the site into a hub for a small core of artists to showcase their own cause, raise money and awareness, and of course do it through their work.
Even Kaczmarek’s cause regarding arthrogryposis awareness has broadened: Alyssa isn’t quite the only child featured in the exhibit at Hollingsworth. Joseph Parthemore, thre 2-year-old boy of Leslie and Daniel Parthemore, is becoming familiar with Kaczmarek’s lenses (she shoots it all with a Canon 5D Mark II). Joseph’s condition is more severe than Alyssa’s: he has a feeding tube and until recently had difficulties breathing on his own, but he’s making vast improvements. Some images of him are part of the exhibit, and he will be at Saturday’s opening.
It’s quite a departure for a criminal justice major for whom photography is a more recent development. Then again, she’d never expected to have been so consumed with Alyssa’s story for the past three years, and hadn’t exactly planned out the way that story evolved: her camera led the way. Her camera’s perspective is merely broadening, preserving—to anyone who is even a little familiar with her work—that Kaczmarek style that somehow combines the graphic and the audacious, to not say the occasionally forbidden, with unguarded emotion. Like so much of Kaczmarek’s work, “Love for Alyssa” is not an understatement.