October 2008 Newsletter

Professor Greg Niemeyer is leading development of fun, interactive games that could diagnose fragile X syndrome in children.

Fragile X syndrome is mainly caused by a mutation in the FMR1 gene on the X chromosome and results in the reduced ability to learn and memorize.

Today, associate professor Susan Rivera and graduate student Faraz Farzin, who are also associated with the M.I.N.D. Institute and the Department of Psychology at UC Davis, are using  infrared eye tracking technology to examine the development of these abilities in infants with and without fragile X syndrome. Their research, in collaboration with associate professor and vision scientist David Whitney, has shown that attention-based position tracking is impaired in infants with fragile X syndrome. This new finding served as the primary guide for this game-based screening tool, and these researchers are interested in potential uses for the games involving targeted interventions for children with fragile X and other neurodevelopmental disorders.

In November 2008, Niemeyer and Ryokai will introduce a fun-to-play computer game that could be distributed at low cost, into a pre-school in East Oakland's Foothill Square Shopping Center. Called Track FX, the game will be played on a large touch-screen monitor encased in a durable, smooth wooden cabinet. One early-concept prototype starts with opposing rows of dots. The player tries to keep track of those dots as they disperse and bounce around the screen.  When the dots stop, the player tries to pick out the dots that started together on one side. The final version, Niemeyer says, will be simpler and will include a cartoon character that will be captured by “occluders.” It will be fun and challenging, but also revealing, says Niemeyer.  Young children who cannot keep track of the character, or who do not make progress as they practice, should be checked for developmental delays, including fragile X syndrome.

Niemeyer and Ryokai are also collaborating with Cecil Brown, celebrated author and filmmaker, who will help weave culturally relevant narratives into the game. In this case, the users are the children and the teachers who run the games their classrooms. For the first several months of the game's development, Niemeyer and Ryokai will alternate weeks with the school; “The kids will use the game for a week, then we will work on development for a week, then back to the school for a week, and so on,” says Niemeyer. This back-and-forth collaboration is called “co-design” or “participatory design.”

The game could be used a “screening tool,” not a formal “diagnostic test,” says Hagerman. Those identified as potential fragile X cases by the game would be referred for further testing.

Games like Track FX can be used not only to screen for conditions like fragile X, but also to help children suffering from such conditions to improve, says Hagerman. She and her colleagues at UC Davis are developing medications to increase activity in the parts of the brain that develop atypically in individuals with fragile X.  In combination with those medications, games that increase visual attention could help strengthen brain connections in both children and adults suffering from the syndrome.

Young brains are more plastic and responsive to such exercises than older brains, providing yet another reason to identify and begin intervention with children with fragile X as young as possible.

“Games are tools of engagement,” says Niemeyer. “They can help patients sustain activities that will help their recoveries. Kids are much more likely to stick with exercises that are fun and engaging.”

Niemeyer and Hagerman are developing another game, Balance FX, to help address the ataxia that plagues adults with FXTAS, a condition that develops in some older carriers of fragile X. The game’s interface is a one-foot-square aluminum force plate that sits on the floor, a bit like a bathroom scale. The player stands on the plate and, by tipping his or her weight in any direction can manipulate objects on the screen. The applications are contemplative, challenging, and fun, requiring a mixture of yoga-like physical control and mental attentiveness. 

Niemeyer developed Balance FX as a fun work of art, not as a diagnostic or clinical tool.  He was giving a lecture at a CITRIS event at UC Davis last year when Hagerman saw the talk and recognized its potential to help her older fragile X carriers.

Computer-based games can also help clinicians and researchers to remain connected with the progress of their patients.  As they are played, the games can track whether a patient improves, plateaus, or worsens. Then they can analyze that data and make appropriate recommendations specific to the patient’s needs.

“We can sort every single move a kid makes in the game. We can track the position of the finger at every fraction of a second. We can see how fast they moved, how many times they tried. And those are all markers of particular behaviors and could be useful to the doctor,” notes Niemeyer.

The games could also store and analyze results over epidemiologically significant areas, adds Niemeyer, allowing doctors and administrators to measure the results of programs designed to address conditions like fragile X.

The need to gather statistics from the games presents a challenge for Niemeyer and Ryokai, however. “To generate useful statistics, these games have to be regular and rule driven,” Niemeyer says. "”But to be fun they have to be unpredictable. Those are often opposing elements. We have to work hard to find the mean that works. And of course,” adds the artist, “they also have to be beautiful.”

by Gordy Slack 

The question “What is art?” has inspired and vexed artists and art scholars for thousands of years. But Sharon Daniel, professor of art at UC Santa Cruz, is interested in another, more pressing question: What can art do?   

"I refuse to accept reality as it is," she says. And Daniel’s digital documentary and new media work is devoted to changing it.  Or, rather, she says, to permitting others to change it for themselves. Unlike most artists, whose work involves some sort of representation, Daniel says she is trying hard to steer clear of representation. “I do not want to attempt to speak for others, but to allow them to speak for themselves," she says.  

Professor Sharon Daniel works to give disenfranchised groups, such as women prisoners and shantytown dwellers, access to technology to document their experiences.

Public Secrets was a 2007 Webby Awards Official Honoree.

The women discuss everything from the mundane aspects of prison life to the economics of what Daniel refers to as the “prison industrial complex.”  The women’s voices and stories open portals of experience into the psychological, theoretical, and ideological realities of the prison. All this is placed in a broader theoretical context, says Daniel.  

But as with Palabras, Daniel is trying not to bring her own agenda to the table: "I am trying not to bring my preconceptions to the project, not to determine what they talk about and what they feel about it."  Some of the stories are grizzly. One woman was incarcerated for a minor offence but her conviction converted to a near-death sentence because of the lack of medical treatment, or even dietary accommodation, for her diabetes. Other women get infections that are improperly treated or left unaddressed until they become life threatening. HIV infection goes undiagnosed and spreads quickly through the common sharing of infected needles. Women who are infected with HIV sometimes hide the fact, because they are ostracized by the community, further increasing the likelihood of infection for others. Treatment offered by the prison is minimal. “No HIV drug cocktails there,” Daniel says.   

Daniel expects, and hopes, that visitors to the project will have the kind of reaction her mother did when faced with the stories these women tell. “My mom considered the prisons a good solution to the social problems of crime and addiction,” Daniel says. “Then I started telling her some of the stories about women going inside for a relatively minor offence and coming out addicted to drugs, having been raped by guards, about the Three Strikes law, what happens to prisoners’ children when they are in there.”  “My mom underwent a kind of conversion experience,” Daniel says.  “That is what I want to have happen,” says Daniel about Public Secrets. “I want people to go to the site and because of what they hear and see there to start to doubt their own assumptions. To start to question what’s really going on.”    

The conversations with women prisoners are displayed as a constantly shifting constellation of voices organized by topic, theory, and speaker. Daniel does not use photos, but rather pieces of each woman’s conversation float across the screen as stylized text.   A visitor to the piece can take an “organic” approach using a “flow view,” where clips are connected through themes and threads and authors. There's a topical interface, too, if you want to do research on a particular topic. If a user chooses a single topic, such as “malpractice,” they get all the statements on that subject.  

The overall effect is disturbing and profound. And it is meant to be. The title, Public Secrets, comes from Daniel’s observation that there are some secrets kept from the public, and there are others, such as the nature of the prison system, that the public chooses to keep from itself. The truth seems too disturbing to be acknowledged, Daniel says. But it must be acknowledged, she continues, if it is ever going to be corrected.

And that is the whole point of her work. She wants us to “rethink the assumptions that lead to social exclusion, to reconsider who the “public” is, or can be, in public art,” she says. And then, based on what we have learned, she wants us to do better.