Technology is continuing to change the way humans live and interact with each other on a daily basis. UC Santa Cruz alumna Rupa Dhillon has contributed to this change in a way few others have done before with a video game for both blind and sighted gamers.

Dhillon designed “Rock Vibe,” accessible both to the sighted and to the blind. Dhillon came up with the idea when she noticed a “Rock Band” controller while brainstorming for her thesis in a human-computer interactions course, part of her master’s program at UCSC.

“To play the game, you put on a wearable device that contains four or five vibrating motors,” Dhillon said. “Each motor would represent a color band you would respond to if you were playing Rock Band. So if you felt a vibration on the far left side of the device you would know that you would need to press the far left button on the guitar controller or keyboard.”

Research for the game was published by the Association for Computing and Machinery after Dhillon presented the game at their national conference.

Rock Vibe Belt Prototype

Sri Kurniawan, UCSC computer engineering professor and former instructor for Rupa’s human-computer interactions course, said “Rock Vibe” is an inclusive gaming model.

“‘Rock Vibe’ is a much bigger scheme,” Kurniawan said. “We are looking to modify mainstream games that interact with both sighted and blind people.”

Kurniawan’s research is in games for health and healthy living, including assistive technology for people with disabilities and people with low social economic and educational backgrounds.

“There are quite a number of games that can be played by people who are blind,” Kurniawan said. “However, there are fewer games that a blind person and a sighted person could play together.”

Traditional board games like chess and Battleship allow sighted and visually impaired players to interact together, she said.

While there are options, Dhillon said they are limited and not attractive to the average player.

“Most games are really simple — they don’t do much, and aren’t very fun,” Dhillon said. “There are many games available for both sighted and blind people, but again, they’re too simplistic to be taken into the mainstream.”

While the game has only been played by game testers, Dhillon is hoping to give access to the community through centers for the blind and visually impaired.

Sharon Hudson has been working as an associate director and teacher at the Vista Center for the Blind and Visually Impaired for 28 years. Hudson said current technology hasn’t been as inclusive of the blind community as it can be.

“Things like the iPhone and computers have been great in general, but they continue to make them more visual,” Hudson said. “They’re producing more devices with icons and touch screens … things that aren’t accessible to the visually impaired.

Hudson said “Rock Vibe” could be something her students will enjoy.

“I know a lot of our students are interested in music, so anything that would make them connect with others would be great,” she said.

“Rock Vibe” is hoping to receive most of its funding from the online pledge website, Kickstarter. Kickstarter opens a pledge system for projects to raise funds and sets a goal the project must reach in order to receive any of the pledge funds. Dhillon has until Feb. 25 to raise $16,500 or the project won’t receive any funds. As of Feb. 1, over $12,000 has been pledged toward the project. The Kickstarter project can be found here.

“It is possible to create games that can reach a wide range of people, regardless of their capabilities,” Dhillon said. “It is possible to bring people together, no matter their differences. And I hope that ‘Rock Vibe’ can show people that.”

Illustrations by Louise Leong.

Updated 11/4/2011 at 5:50pm

Like any new parent, Ryan Haley hadn’t the slightest clue on how to change a diaper when his daughter Emily was born four years ago. Like any new parent, he had to learn how to get down to his daughter’s eye level when talking to her. And like any new parent, Haley was sleep-deprived every night after waking up multiple times to attend to her cries.

However, when Haley was late to pick up Emily one day from preschool, Emily came home with a note attached to her shirt that threatened contact with Child Protective Services if he was ever late again. The emergency contacts Emily’s school kept on file were never even notified. It was clear to the Haley and his wife Paula Blair they weren’t being treated like any other new parents.

Haley and Blair are Special Olympics athletes from Butte County, Calif. Haley is diagnosed with dyslexia and learning disabilities that keep his reading at a second-grade level and Blair has a speech disability that makes pronouncing longer words difficult. Though the couple have faced some hardships, they consider themselves lucky. Not only do they have a healthy, beautiful four-year-old, but they have custody of her, unlike many parents who have been deemed inadequate caretakers and lost custody of their children.

During the past century, the number of families headed by a parent with an intellectual and/or developmental disability has increased substantially, according to the Research and Training Center of Community Living of the University of Minnesota.

Two national surveys and NHIS report more than 8 million families include at least one parent who has a disability, in the United States alone.

The lack of programs representing these parents renders them an invisible population. Only 51 percent of parents with intellectual and/or developmental disabilities are currently living with their children, according to the most recent updates in the 1994-1995 National Health Interview Survey – Disability Supplement (NHIS-D). Other studies estimate 40 to 60 percent of parents with developmental disabilities have had their children removed from their care at some point in time.

While there are various organizations dedicated to children and individuals with developmental disabilities, resources for parents with developmental disabilities are substantially fewer, to the point that they must rely on the support of family or friends to raise their children and reduce the risk of losing their parental rights. Many families without this support often face Child Protective Services (CPS) intervention.

Lesa Nitcy Hope, director of community services at All About Developmental Disabilities (AADD), has spent 25 years advocating for the rights of developmentally disabled people.

“In many ways this challenge mirrors the challenges faced by other marginalized groups historically,” Nitcy Hope said in an email. “The challenge in family courts is that those in power hold their biases and negative stereotypes as ‘common sense’ even when there is no evidence of abuse or neglect. And unfortunately they have the power to make devastating, life-changing decisions for parents and children.”

While there has been no stated criteria for why a developmentally disabled parent may have his or her parental rights terminated, according to a 2006 briefing from the County of Santa Cruz to the Board of Supervisors, an update has been made for what is prioritized in deciding whether to place a child in foster care.

“The new statute now stresses that the child’s health and safety shall be the paramount concern in determining what is reasonable, and consistent with the plan for timely, permanent placement of a child,” according to the briefing.

LETTING GO

“Getting here has not been easy,” said Dave Spicer in an email. “As the parent of an autism-spectrum kid, I had to let go of all the ideas I had about how things would work out. I had to become willing to do whatever it took — to go to any length. In my case, this meant letting go of raising my own child.”

Spicer is diagnosed with high-functioning autism and is a writer and speaker for autism. His 26-year-old son Andrew has the same diagnosis. Due to various factors, Spicer decided the best decision for his son was therapeutic foster care in 1995.

“That was the hardest thing I have ever done in my life,” Spicer said. “If someone had told me at the time how well that would work out, I wouldn’t have dared believe them. The process is not pretty or gentle.”

Dave feels a structured home setting and effective advocacy has been the right path for Andrew. Andrew has been living with the same extended family for 16 years. He is part of Buncombe County’s Progressive Education Program and is taking several college courses. While Dave lives in North Carolina and Andrew lives in Maine, they keep in touch through email and see each other once a year.

WALKING ON EGGSHELLS

Although Haley and Blair currently have custody of their daughter Emily, they are not fully at ease. Every day holds the possibility that may result in losing their only daughter. The family has been spontaneously visited by CPS, called in by anonymous callers. Though the couple say there is no evidence or reason to have CPS take custody of Emily, Blair is still haunted by the possibility.

“It’s just scary because you don’t know what’s going to happen,” Blair said. “Are you going to get your child back? Can you turn yourself around and get the support again? It goes through my mind a lot. I don’t know if there will be a knock on the door one day and it’ll be CPS.”

Nitcy Hope said the concept of IQ in family court — in terms of terminating parental rights —is often utilized.

“IQ is not a predictor of a person’s ability to parent,” Nitcy Hope said. “IQ tests were established to determine how people would function academically, yet IQ tests and other psychological evaluations that focus on disability are used as evidence to terminate parental rights. Parents with DD [developmental disabilities] can do everything right and still lose their kids.”

Though the family has received support from community members and friends, in the presence of strangers in public, Haley and Blair feel pressured to meet a certain standard of behavior to continue their lives with their daughter in peace.

“When our child cries in the stores, I have to just let her sit there and cry instead of picking her up and putting her on her butt outside because then we’ll get called on,” Blair said. “We don’t let her get away with anything, but I want people to see that we’re not hurting her.”

It upsets the couple when they receive anonymous feedback from strangers in the form of CPS calls.

“If people have a problem with me and how I treat my daughter, then talk to me or get out of my business,” Blair said. “If you’re going to treat a person with a disability that way and talk about them behind their back, instead of calling CPS why not offer help?”

Cheryl Theis is an education advocate at the Disability Rights Education and Defense Fund as well as a mother of five children, two of them with special needs.

“Parents who have particular developmental disabilities are so inherently seen as less capable, so one of the things we run up against is that the child is having problems at school and the parents are in a custody dispute, so it becomes the thing that the other side uses,” Theis said. “People are less likely to be labeled and treated because they are afraid of exactly that. There are a tremendous amount of roadblocks.”

COMMUNITY SUPPORT

While Haley and Blair have found a community at the Special Olympics, many developmentally disabled parents who don’t belong to a specialized community don’t receive adequate support in terms of parenting.

Della Jackson is a 45-year-old single mother of two children, ages 4 and 16, from St. Louis, MO. who is diagnosed with mild mental retardation. Since 1994, Jackson has been supported by the Families Learning Together program of the St. Louis Arc, a non-profit United Way agency that provides support and services to developmentally disabled adults, parents and children. However, while pregnant with her first child, she had nowhere to go. Before hearing about Families Learning Together, Jackson lived in a group home that ultimately gave her a choice to either get an abortion or be kicked out.

“They wanted me to get rid of my child, so I left,” Jackson said. “I didn’t feel it was right to do. I never believed in abortion.”

Jackson explained how her parenting classes at Families Learning Together have played a large role in her life as a parent.

“All I had was the parenting class,” Jackson said. “I didn’t really have steady support. But I think I’ve done really well.”

Nitcy Hope, All About Developmental Disabilities (AADD) director of community services, stresses the challenges of parenting for any individual, regardless of disability.

“If we are honest, everyone needs support in parenting,” Nitcy Hope said. “I have a Ph.D and when I had my children, I was supported by older, wiser women who helped me learn about parenting. We should not pathologize needing support or consider it a deficit if we need people to help us along.”

The lack of established programs for parents with developmental disabilities leaves many parents feeling isolated and alone, regardless of family and friend support.

“Parents that are disabled need a program,” said Haley, who has dyslexia. “If there was a program that would help parents with disabilities who have kids and provide a place to bring them together — like a big conference that talks about what it is like to be a parent — we want to know how they do it and talk about our disabilities.”

THE ‘QUIRKY’ PARENTS OF THE NEXT GENERATION

The Coryell Autism Center near downtown Santa Cruz is a specially designed non-public school for young people with autism between the ages 14 and 22. The school is geared toward training individuals at the transition age before adulthood to ready them for the world outside with vocational placement, professionalism training and independent living. The school currently enrolls two students with severe autism and has custom-designed curriculum based on the students’ specific needs.

Kristyne Jolly, the educational director for the Coryell Autism Center, explained her hopes and observations for what could possibly be the next generation of developmentally disabled parents.

“There are still attitudes out there that anyone who is different in any way is not a functioning member of society. It’s really frustrating,” Jolly said. “They’re craving affection and they’re craving touch. We think about that, and as they’re coming into this age they want that, and it’s so difficult to teach them how and to teach others not to take advantage of them.”

While autism is just one of many developmental disabilities, it is composed of a very wide spectrum in terms of how severe or high functioning it can be in individuals.

“Many of them are functioning enough to understand relationships,” Jolly said. “I know many that I think will grow up and have families. I always hope that they get to have as meaningful life as we have [and] as much as my own son.”

While Jolly is concerned with developmentally disabled individuals having the ability to make decisions for themselves and others, she said there are those who are capable of having families.

“Quirky people do grow up and have families, and some of them do have children with autism and you’re going to start seeing trends with families,” Jolly said. “There is a high genetic component and often times you’ll see these families and they’re super smart, and they’re kind of quirky, and you’ll say ‘OK, I see it.’ In a family, you make up for what someone is lacking in. But because of that, you can expect them to go above and beyond in many other ways.”

However, Jolly stressed that model healthy relationships for children with developmental disabilities aren’t always available, even among parents without developmental disabilities.

“With the stress on the families with children with autism, there’s a high divorce rate,” Jolly said. “[The children] don’t get too see what it looks like to be affectionate with someone that is a romantic partner. They didn’t grow up in a nuclear family, so I worry that they can’t understand that beyond what’s in the movies.”

As the capability of developmentally disabled individuals to parent continues to be discussed, the ultimate question remains: What makes a good parent?

“Love, consistency, helping your child learn skills so that they can survive in society [is what matters, as well as] making sure they go to school and showing an interest in their activities and interests,” said AADD director of community services Nitcy Hope.

While Andrew Spicer, a high functioning autistic adult whose father is also autistic, said if he does ever choose to have a family, he would most likely adopt, he has an idea of what makes a good parent.

“The main thing that makes a person a great parent is being able to be there when the child needs them,” Andrew Spicer said.

Jolly defines a parent as a child’s first teacher and stresses the importance of perspective.

“Understanding another person’s perspective [is different] than your own and being able to switch and step out and being able to say, ‘Could I have done that better?’” Jolly said. “It’s this constant moment-to-moment reflection of the choices you make for your little person. Being reflective and at the same time being able to ask for help, that’s what makes you a good parent, knowing your weaknesses. It takes a community to raise a person, too.”

FROM A CHILD’S EYES

Photo courtesy of Dave Spicer.

While developmentally disabled parents often have children who do not show any signs of developmental disability, in many cases the child has similar genetic traits to the parent. Nearly 30 percent of children whose mothers had intellectual disabilities only or both intellectual and developmental disabilities had intellectual and/or developmental disabilities themselves, according to a data brief from the Research and Training Center on Community Living of the University of Minnesota.

Andrew Spicer recalls his childhood with his father Dave before his placement in therapeutic foster care at eight years old.

“I didn’t really think of my father as different from other parents, because I didn’t really pay attention to other families’ interactions,” Andrew said. “I guess I thought of the time I spent with my father as normal.”

While developmental disabilities often are a strong genetic trait, Haley and Blair — who are dyslexic and autistic respectively — say their daughter Emily has yet to show signs of a developmental disability.

“When Paula was pregnant, they were concerned because maybe Paula’s genes and my genes would affect Emily,” Haley said. “But when she started growing up and nothing was really different with her, everyone just said things like, ‘You have a wonderful daughter. She looks like you guys.’”

CONCERNS FOR THE FUTURE

While Emily is not in school yet, the couple is thinking ahead for when Emily will be learning more advanced concepts that may or may not require them to seek assistance, raising the question: Are they worried?

“With her, not really,” Blair said. “The more I learn how to pronounce words, and with her learning, it’ll be fine. We have family and friends who’ll explain it to me and I’ll explain it to her. She’s got two aunts and an uncle who are teachers, so I’m not really concerned at all.”

Haley, however prepared, does have some concerns.

“I have that worry that when she goes to school that she has reading problems or math problems that I didn’t get the education to understand in order to help,” Haley said. “When she does go to high school and has homework that I don’t understand because I had it explained to me when I was in high school, I won’t have that particular knowledge to give to her when she grows up.”

In the face of ignorance, Della Jackson encourages Daniel, her oldest child, to rise above.

“Other than the parenting class, a lot of people criticize,” she said. “They don’t know what you’re going through. They look at you funny and snicker behind your back because of the way you look. It bothered me growing up, and it used to bother my son, but I just tell him, ‘You don’t say anything back.’”

Similar to Jackson, Haley and Blair have confidence their open-minded daughter will be able to help her friends to be accepting when she starts school.

“I’m hoping Emily will know when they see us and don’t understand, hopefully she’ll let them know, ‘Hey, I have parents that are disabled. They may be different on the outside but on the inside, they’re just like your parents,’” Haley said.

While Haley and Blair may have challenges ahead of them, it is clear their individual lives with their child are just as conceivably stressful and uncompromisingly hopeful as any other parents’. As the phone interview comes to an end, Haley mutters, “Hold on a minute, I want to do something,” and holds the famous Emily to the phone. The confident girl jabbers into the speaker in a voice free of even the slightest hint of apprehension, a voice that exudes only confidence in the many joys and adventures in store for her in the coming years.

The muffled sounds of the mid-morning shuffle play out behind Erin Flannery, a third-year history major, as she sits cross-legged on a pillowed bench outside a campus cafe. She passes her drink between her hands, occasionally balancing it upon her knee. Flannery said that her sister, who struggled with anorexia nervosa, would go periods of time eating nothing, only chewing on gum and drinking excessive amounts of water.

A major factor in Flannery’s sister’s eating disorder was her experience in dance, and the expectations placed on many dancers to adhere to specific body type and aesthetic.

“In the dance world, especially in competitive dance, teachers are really interested in making you all look the same … and I think a lot of that correlates to weight,” Flannery said. “When you go on stage you wear the same makeup, the same hairstyle, the same hair clip … the same, the same, the same.”

Approximately 10 million women and 1 million men in the United States struggle with eating disorders like anorexia nervosa and bulimia nervosa, according to the National Eating Disorders Association. This does not include the number of individuals who suffer from binge-purging disorders, which can include things such as laxative abuse, as well as other forms of disordered eating.

A 2004 study published in the Clinical Journal of Sport Medicine concluded that eating disorders are more prevalent in elite athletes compared to the general population. It found that 20 percent of female elite athletes had an eating disorder, compared to 9 percent of the general female population. The numbers for male athletes were 8 percent versus 0.5 percent for the male population as a whole.

It is difficult to gauge the number of people who have eating disorders, however, not only because of the wide spectrum of disordered eating, but also because of the stigma attached to such illnesses. Many individuals do not seek out help, nor do many people recognize the development of an eating disorder or distorted body image. For some athletes, dieting, excessive exercise, and the desire to further push the physical self past its limits is not seen as a disorder, but as an undeniable part of the experience and lifestyle.

“We see a huge number of people … who have lost weight in such extreme ways through being more extreme in their exercise patterns and have really become medically unstable with super low heart rates, with bone loss, and a lot of medical complications,” Dr. Cynthia Kapphahn, medical director of the Comprehensive Eating Disorders Program at Lucile Packard Hospital said. “If anything, I think it’s worse [than in the past].”

Pressure for Perfection

For Joelle Maletis — a professional ballerina turned marriage and family therapist — the aesthetic of dance, and the pressure to surpass her own expectations of herself played heavily into her own struggle with eating disorders. Maletis struggled with anorexia nervosa and bulimia nervosa, as well as laxative abuse.

“[Perfectionism] became a huge force in everything I did,” Maletis said. “My strive for everything was to be the best — and it’s not that I wanted to be the best — but that was my role. Internally, I was numb. There was no feeling. This was a job and my job was to play a role … The standard was extremely high, and I didn’t know there was an option to not have those standards.”

Maletis, who retired from the professional world of ballet in 2007, said that her relationship with her body and with dance has been continually tumultuous. Maletis, a dancer since childhood, has not completely rid herself of body image issues.

“I would never want to go back to that place,” Maletis said. “I have no thoughts of it anymore. I have no desire to starve anymore. But is it still an issue? Yeah. Do I still have body dysmorphia … ? Yeah. Of course.”

Now that Maletis works as a therapist, she has become involved with working with people who struggle with eating disorders, including other athletes. Such work has allowed Maletis to better organize and make sense of her own history as well as the way she addresses the standards she lays out for herself.

“Because I understood [eating disorders], I could not just empathize but I could sympathize,” Maletis said. “It became a kind of rehab for me … I was really doing a lot of growth, looking at my own issues with perfectionism and control.”

In her work as a therapist, Maletis subcribes to a newer school of thought, which addresses eating disorders as an addiction. Whether disordered eating is related to addiction is disputed, but Maletis enters the debate from the perspective of someone who has dealt first hand with the issue.

“It is an addiction,” Maletis said. “You get addicted to starving yourself to death. The addictive piece came in for me with laxative abuse. Eventually you have to take more and more [laxatives], eventually you have to throw up more and more, eventually you have to not eat more and more to get the same results.”

Marsea Marcus, co-owner and therapist at Inner Solutions in Santa Cruz, which offers counseling services specializing in eating disorders said that “a lot of eating disorders start with someone innocently going on a diet” and that dieting “can be just like a gateway drug.”

Marcus, who like Maletis grappled with her own eating disorders, said that the way many individuals fall into an eating disorder is the allure of control.

“It’s sort of a high to lose weight,” Marcus said. “[It] makes you feel like you’re in control and that you’re doing something good or positive for yourself. You stop looking at things with a level mind.”

Illustration by Rachel Edelstein.

The Dancer Aesthetic

Among some athletes, there is disconnect between excellence and health. In order to improve the physical self and excel, the body has to be pushed to its limits. However, when performance is placed over health and disordered eating becomes an issue, the body cannot achieve athletes pushing themselves too far, exceeding their limitations, and sometimes leading to dire consequences.

Kapphahn said that eating disorders can inflict serious damage on the heart. As with excessive weight loss, heart rate will slow down as a protective measure in order to conserve energy. In addition, eating disorders can cause health problems such as internal bleeding from purging, tearing of the esophagus from forced vomiting and dehydration from laxative abuse. For young female athletes in particular, over-exercise combined with disordered eating can cause loss of menstruation and bone mass.

“The more weight you lose in a shorter period of time, the more problems,” Kapphahn said. “[Dieting] is a fine line people walk. It’s easy to lose perspective and easy to fall into more disordered eating.”

Christine Hassel, who leads a support group for people with eating disorders, explains that with eating disorders comes a level of “adaptation.” As people with eating disorders give themselves less and less, they learn to survive on less and less, perpetuating a cycle.

“It’s an unsustainable mindset,” Hassel said, “You can’t keep depriving yourself and then pushing yourself to increase demands and [the] challenges of your sport.”

Erin Flannery and her sister were both dancers. Flannery gravitated towards tap and jazz dance styles, while her sister focused heavily on ballet. Flannery attributes her sister’s struggle with anorexia to the pressure for dancers to uphold a specific physical ideal. Ballet has become synonymous with a particular aesthetic, as lean, petite, leggy young women grace the stages of many classical ballet dance companies.

The prevalence of this aesthetic can be seen in contemporary visual art as well, such as in the photography of the Ballerina Project. The project, which started as a blog and now sells prints, captures the physical body of the ballerina — elegant and waif-like — contrasted with images of the urban cityscape. The photographs are visually pleasing, but the bodies presented characterize the “uniformity” that Flannery vehemently expresses distaste for the same “uniformity” that many dancers struggle to meet.

Flannery said that the pressure many dancers feel to meet and maintain a certain body type or a specific aesthetic and uniformity is a result of the physical expectations placed on the young women. The studio Flannery danced at in her hometown required that at a certain level, the girls only dance in a sports bra and shorts.

Although this is not something particular to Flannery’s studio, it’s a standard style of dress that allows both instructors and audience members to see the ways in which the dancer’s body is moving. Still, it results in pressure on the dancers to adhere to a certain body type.

“[The instructors] are all about making you really tiny,” Flannery said. “And ballet in general is about making you as toned as possible.”

UC Santa Cruz modern dance instructor Rena Cochlin said aesthetic adds pressure on young dancers to adhere to a certain body type.

“In dance, it’s very clear,” Cochlin said over the hum of classical music slipping in under the door from the ballet class outside. “It’s basically a performing art, and what you see are bodies which are sculpted, and in my opinion look undernourished, especially in ballet, and that became a style in ballet. It bothers me, because unfortunately, that is still the style. I don’t particularly feel you have to be skinny in order to look good.”

Joelle Maletis, a professional ballerina turned therapist, said it is important to stress that healthy and skinny are not interchangeable, and that it is possible to be a dancer or an athlete without over-stepping what is natural.

“You can be a dancer, and you can be thin, and you can be healthy and you have something that precludes being an athlete,” Maletis said.

Cochlin, who said that although in the style of modern dance, disordered eating is not as prevalent as in such areas as ballet, she is nonetheless aware of the pressure that many dancers feel when it comes to their relationship to their bodies and their ideas of consumption.

“Some of [the pressure] may be due to the fact they’re being demanded to keep… an unnatural weight,” Cochlin said. “So their bodies rebel… they’re toying with something that’s natural and making it much more difficult than it should be.”

What needs to change in dance is the aesthetic, Cochlin said. With that comes change in the perception of what equates a good or accomplished dancer.

A key factor in changing the perception of the body for competitive dancers — as well as performers in other more subjective forms of performance and athleticism such as figure skating — is changing the way in which the sport is evaluated, Cochlin said.

“What I care about is the overall feeling, if they’ve been able to present something that is artistic,” Cochlin said. “I don’t care if the [athlete’s] so-and-so turn is perfect. That way of looking at movement is invalid for me.”

Illustration by Rachel Edelstein.

Tricking the Scales

It is not just dancers who are affected by a desire to maintain a certain body type. Athletes from many other areas are plagued with issues to maintain certain weight goals, or even gain weight to add bulk.

One sport often linked to issues with body weight, binge-purging, and other disordered eating is Greco-Roman wrestling.

Coach John Corona, who works at Santa Cruz High School and the West Santa Cruz Wrestling Club, has been coaching since the early ’80s and has seen how eating disorders manifest in the sport. Corona said that over the past few years, the sport has taken proactive steps to help eliminate the prevalence of disordered eating among young wrestlers who have — in the past — turned to extreme forms of dieting in order to make desired weight classes.

“Decades ago you’d see a student make weight and that was the goal,” Corona said. “That’s why in the last 10 years we’ve worked hard to get rid of that.”

Corona called eating disorders among athletes an “epidemic” and explained his own philosophy of addressing weight in a sport that categorizes itself by weight.

“We’re really… doing a disadvantage to the athlete by demanding [that they] lose excessive weight,” Corona said. “We are not a win-at-all-costs program… All these trophies and medals go into a shoebox in the end, and it’s what you do that you take with you.”

Although she is apprehensive to say that the prevalence of disordered eating in athletes has lessened, Dr. Cynthia Kapphahn, from Lucile Packard Hospital at Stanford, said she recognizes that there are some moves to make changes in the ways weight and body image are addressed.

“I do think there’s more and more coaches who realize that it’s important for athletes to eat normally,” Kapphahn said. “I think there’s at least a lot more discussion and awareness of the issues and coaches that are striving to be encouraging of their athletes to be at a normal weight.”

Nonetheless, not all coaches share Corona’s philosophy and instead turn a blind eye to the extreme lengths some athletes go to lose weight.

Anthony Salazar*, a sophomore in high school is a member of his school’s varsity wrestling team. He said that he and many of his peers will skip meals, take laxatives, run excessively, and even frequent saunas in order to shed a few extra pounds and make a desired weight class.

Although Salazar said he does not think it is normal to skip meals, it is something he feels like he has to do to make weight and that he does not have a choice in the matter. Salazar estimates he skips meals about three times a week.

“I don’t eat the day before [a match],” Salazar said. “I’ll eat breakfast, and that’s pretty much it. You’re hungry, but not to the point you can’t walk, but after the match you just want food.”

Salazar said that some wrestlers will “chew gum and spit to lose weight, [because] spitting gets rid of saliva and moisture.”

He admitted with hesitation that the coaches were not aware of the lengths some of the wrestlers were taking, including not drinking water before weigh-ins.

Salazar has taken laxatives, but he said he “would not take them again if he had to.” He said that he does not think of the consequences of his actions, or whether “it’s good for him or not.”

Kapphahn, who has worked with athletes coping with eating disorders, explained that eating disorders can manifest without the conscious recognition of the athlete.

“People who are athletes are oftentimes are just expecting really high things for themselves, and they’re expecting perfection even in their eating,” Kapphahn said. “They just lose track of when that becomes something that’s not healthy for them anymore.”

Illustration by Rachel Edelstein.

Weighty Consequences

Inside the Campbell office of the Eating Disorder Resource Center (EDRC), afternoon sunlight floods through large windows, the smell of coffee filtering through the air. Kenneth McCraney’s hands shake slightly as he talks. His speech warbles and is barely a whisper. His movements are lethargic and compact. His story of relapses into anorexia, and his daily struggle to overcome what has become a behavioral pattern for him unravels.

“Once I got like this, I couldn’t break the pattern. I was stuck,” McCraney said. “When I go to eat something, I have panic attacks.”

Age is imprinted on the face of McCraney, who at 61 continues to deal with the effects of his battle with disordered eating. McCraney has grappled with his personal demons throughout the years — from drug abuse to alcoholism. And as his body continues to deteriorate, he has become completely blind in one eye. Anorexia has been present throughout his life, and has led to the demise of personal relationships.

It is a black stain, a dark cloud that looms over his day to day.

With McCraney sits EDRC founder Janice Bremis, and Lisa*, who has anorexia and volunteers at the EDRC, both of whom have battled with anorexia. Bremis, tall and sinewy, leans forward as she discusses how she hopes to bring awareness, reach sufferers, and offer aid.

In contrast to Bremis’ openness sits Lisa, who speaks directly, her slightly raspy voice is sharp and her language clear and realistic. She explains the ways in which control has affected her relationship with her body and with consumption.

“You get down on yourself [when you eat], you get angry at yourself, and you feel out of control,” Lisa said. “It’s very perpetuating. Once the ball starts rolling, you can’t just stop. It’s really easy to get back into it. I struggle with it every day.”

It is this perpetuating factor that drives people like Bremis to offer help and services to others struggling with disordered eating.

“We’re all older, we’re all matured, but when I was young, I would have been scared [to get help],” Bremis said.

But it is important that those struggling with any form of disordered eating or body dysmorphia seek out help. As Bremis explains, “this isn’t just a phase or a fad,” and it is not an issue someone should address alone.

Lisa, whose life continues to be marked by anorexia, reflects on the long-term effects her disordered eating has had.

“You’d rather die. If you had to choose between dying and being thin, you’d die,” Lisa said. “You know when you’re younger, you have dreams and aspirations, [but] you’re not going to meet any of them. All you’re going to do is survive. You’re not going to thrive at all [when you live] with an eating disorder.”

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Students interested in seeking help on campus for eating disorders should contact the Student Health Center, Student Health Psychiatry Services or the Counseling and Psychiatry Services.

For information on the Eating Disorder Treatment Program, students should contact Sheri Sobin at (831) 459-3952.

*Names have been changed.