Judi Zazula, G82

Judi Zazula, G82, with Ayla

There was only so much the doctors could do for Craig Cook. True, they were able to keep his heart beating and his internal organs functioning in the days and months following the automobile accident that left him a quadriplegic. But their medical expertise could only go so far. Because there was something else broken within Cook, something that didn't appear on his X-rays or medical chart. Cook couldn't see it either since his focus was, naturally, elsewhere.

"I was sort of in denial after I was injured," he says. "I thought if I worked hard enough I would walk again. But about a year later, I remember looking in the mirror and realizing that I wasn't getting any return on my hard work."

Once Cook accepted the reality of his situation, he descended into what he now refers to as a mild depression. This state grew in intensity as he realized that his career as a design engineer was most likely over and that he could no longer actively participate in many of the interests he had previously enjoyed. Cook became even more despondent following the loss of two important people in his life.

"At the time of my accident, I had a fiancée, and she had a ten-year-old son," says Cook, 41. "But she ended up leaving with her son, who was like my own, two or three years after the accident. After that, I thought, 'what else more could I lose?'" Fortunately, one of the things Cook didn't lose was his friends.

"My friends could see that I was really depressed," says Cook. "One of them wanted to get me a service dog. I didn't want one, but she wouldn't give up. She went onto the Internet and sent me the link for an organization that trained monkeys to help disabled people. And I thought, 'No way! How cool would it be to get a monkey!'"

A HELPING HAND
There are an estimated 253,000 people in the United States who, like Craig Cook, are living with spinal cord injuries. This number includes paraplegics (those who have experienced loss of movement and sensation in their lower bodies) and quadriplegics (individuals who have suffered loss of movement and sensation in both their arms and legs). The range of injury among quadriplegics varies. Some can use their arms to a degree, while others, roughly 18 percent of all individuals who have experienced spinal cord injuries, have no movement or feeling from the neck down. Regardless of the extent of their injuries, though, the majority of quadriplegics require some form of daily assistance in the years following their injuries. This assistance, most commonly provided by a trained attendant and/or family member, can come in the form of help with bathing, getting dressed, eating, and several other daily tasks. Thus, those with severe spinal cord injuries lose much more than their mobility. They also lose a great deal of their independence.

And this is something that graduate alumna Judi Zazula, G82, has spent her career trying to give back through her work with the non-profit organization Helping Hands: Monkey Helpers for the Disabled, Inc.

"Monkeys can learn a variety of behaviors to help increase a person's level of independence throughout the day," says Zazula, cofounder and executive director emerita of Helping Hands. "They can help bring their partner something to eat, turn the pages of a book or magazine, or readjust glasses if they slide down their partner's nose."

Adds Becky Thompson, a quadriplegic who lives in North Carolina "When someone has a disability like myself it takes a while to get used to that new life. There is so much that you can't do. But, with a monkey, a person can be on their own and not have to call someone constantly for help. It's very difficult to have to constantly ask for things and it makes a world of difference when you don't have to."

Judi Zazula's interest in spinal cord injuries began while she was an occupational therapy graduate student at Tufts. During the course of her research, which focused on designing adaptive technology for people with severe disabilities, she met Dr. M.J.Willard.

"Dr. Willard came up with the idea of using capuchin monkeys as helpers," says Zazula. "She received an initial $2,000 grant from the Tufts-New England Medical Center's Department of Rehabilitation Medicine, which made it possible to explore the concept and to launch the Tufts Primate Project."

The Tufts Primate Project involved a quadriplegic named Robert and a capuchin monkey who went by the name Hellion. Zazula worked closely with the pair during their training and placement.

"When I joined Dr.Willard, I worked on creating guidelines for monkey helper recipients, developing training and placement techniques for the monkeys, and designing and fabricating adaptive devices with each new placement," says Zazula.

Zazula continued to volunteer with the primate project after she earned her master's degree in 1982. During this time, in addition to working toward a Ph.D. in the university's One-of-a Kind (now the Interdisciplinary Doctorate) program, she also began working as a human factors engineer at Computer Technology Associates of Burlington, Massachusetts. Zazula was at the company for two years, after which Helping Hands (formerly the Tufts Primate Project) was able to offer her a full-time salary. Zazula joined the staff soon after and, as its program director, was responsible for further developing the organization's foster family, training, and placement programs.

As Zazula recalls, the monkeys weren't the only ones learning new skills during the early days of the organization.

"We faced several training challenges in the beginning," she says. "We needed to answer basic questions like: How can we communicate clearly and effectively with the monkeys? Can they be taught to do tasks that are helpful? Can they be potty trained? Can monkeys live appropriately in a home environment? Looking back, we learned so much from our early monkeys."

Dr. Willard left Helping Hands in 1995 to launch a program aimed at matching disabled individuals with jobs they could do at home. Following her departure, Zazula became the executive director of the organization and, along with expanding the number of monkey placements, she oversaw the organization's move into a facility better equipped to meet their needs and created SCIPP (Spinal Cord Injury Prevention Program), which educates children and young adults about spinal cord injury prevention, disability awareness, and human-animal bonding.

THE MONKEY COLLEGE
It's easy to miss Helping Hands. Located on a busy Boston street, scores of strangers pass by it each day without the slightest clue of what's going on inside. If they did enter the building, they'd have trouble believing their eyes. For one, they'd see more monkeys than they ever had before. And, after this first surprise wore off, they'd see monkeys turning on microwaves, picking up pencils, and helping to scratch hard to reach itches. All these things and more make up a typical day at Helping Hands, which is often referred to as Boston's "Monkey College" by local residents and supporters of the organization.

The "Monkey College" is where the monkeys receive their training. It's also the place where they eat, sleep, and receive medical care if necessary. The monkeys enter "college" when they are at least seven years old, but their education begins much earlier.

"In the early years of the organization, monkeys entering the program came from research facilities or were former pets," says Zazula. "With support from Disney World, we were able to develop our breeding colony, which is now located at Southwick's Zoo in Mendon, Massachusetts. Before going to school at Helping Hands, young monkeys live with families as part of our foster family program. Foster families are expected to provide lots of love and good guidelines, while handling the monkeys in a way that creates good behavioral patterns and appropriate behavior in a home environment. Monkeys who are well-loved and easily handled are easy to train."

A typical Helping Hands monkey takes two to three years to train, and most of the training takes place in four rooms on the first floor of the organization's building. The first training room is an uncluttered, windowless area without distractions, and serves as the place where the monkeys begin to understand the merits of positive behavior (i.e., they are rewarded with a treat and affection if they perform an appropriate task), fetching, and discriminating between objects.

Each room increases in complexity until the monkeys, after a few years of training, reach the fourth room, which is known as the "training apartment." This area is meant to reflect a typical room, and features items like a refrigerator, microwave oven, audiovisual equipment, a bed, and an electric wheelchair. By the time the monkeys reach this stage, they are able to master a number of complex behaviors, covering everything from opening up a refrigerator and "fetching" a bottle of water for their partner to turning on a stereo and inserting a compact disk. The monkeys are guided in these tasks by trainers at Helping Hands.

Once their training is complete, the monkeys are ready to "graduate" and begin living with their partners. But the matching process can take some time since the organization puts a heavy emphasis on finding the right monkey for the right person.

"We know the monkeys intimately, so we know what their strengths are, what they find challenging, and what kind of personalities they have and need to be around in order to be happy," says Zazula.

A monkey, Zazula shares, might be very shy and sensitive, and would be very intimidated and insecure with a partner who had strong personality. Another monkey might be very outgoing and dominant, but if placed with someone who is equally dominant or an extrovert, that monkey may act like "the biggest baby in the program."

After a match has been made, representatives from Helping Hands descend on the home of the monkey recipient—literally. During the first few days of the eight daylong placement, staff occupational therapist and graduate alumna Jill Siebeking, G06, and a placement trainer are in the home of the recipient. Siebeking's work involves installing and modifying the adaptive equipment that the recipient will use with his or her monkey. This equipment can include everything from a wheelchair-mounted laser pointer to customized "task" equipment (including mouth sticks, hand splints, and feeding and drink container bases). For the remainder of the week, a placement trainer deals directly with the monkey and the humans who will be involved in its life to assure that the placement goes smoothly.

"The trainer works with the recipient and their attendant on helping behaviors, and on what kinds of handling and care the monkey requires," says Zazula. "After that first day, monkey care behaviors and responsibilities are transferred onto the individual who will become the monkey's lifetime partner."

Therefore, during the placement and in the months and years that follow, the monkey and its partner learn to help each other. For example, the partner may help groom his or her monkey using a brush modified for mouth control or, when it's time to eat, may have the monkey get both of their meals.

"The monkey and its partner learn to do things together that neither could do alone," says Zazula. "They take care of each other."

"Kristi is like a child to me," says Becky Thompson of her monkey. "People have a hard time believing me when I say that, but only someone who's had a Helping Hands monkey can understand the bond that takes place. Often people refer to them as 'just a pet', but the relationship goes far beyond that."

A LIFE TRANSFORMED
The calls came regularly at first, at least once a week. Then, they came every couple of weeks. And then every few months. Eventually, they stopped altogether. Craig Cook hadn't really let himself get his hopes up, but then again getting a monkey would have been nice. Then one day his phone did ring.

"Around two-and-a-half years after I had first contacted Helping Hands, I got a phone call from them," says Cook, who is now a member of the organization's board of directors. "The person on other line said, 'Hey, I hope you didn't think we forgot about you. Remember how you filled out the monkey application? Well, we think we have a monkey for you.' It turns out that they hadn't called for so long because they had been working with the California legislature to get approval for me to have a service monkey."

A few weeks later, with Judi Zazula's help, Craig Cook got his monkey. She was named Minnie, and in the months that followed Cook and Minnie did everything together. She rode shotgun on his electric wheelchair and would sit in his lap when they'd watch the Angels on television. And, over time, Minnie was able to do something that no medicine or rehabilitation had been able to. She healed what was broken within Craig Cook.

"Minnie definitely got me out of the depression," says Cook, who makes his living as a stock trader. "She gave me more confidence, too. I always felt like people were staring at me because I was in a wheelchair. I used to be embarrassed when I went out, but now I don't care because people are going to check out Minnie. I've also been on a lot of news stations around here and in a lot of newspapers because Minnie is the first monkey in California. Well, some of my old friends from high school heard about what had happened to me and they couldn't believe I had a monkey. So, they started getting back in touch with me. Now, we have an annual Christmas party at my house and I've stayed in touch with them ever since. Friends are coming out of the woodwork and I've got more people involved with my life. I feel more human again."

Learn more about Helping Hands: Monkey Helpers for the Disabled, Inc.

Article by Robert Bochnak, G07, senior writer/communications manager, Office of Graduate Studies

Photos by Melody Ko

This article originally appeared in the spring 2007 edition of Alma Matters, the magazine for Tufts Arts, Sciences, and Engineering graduate alumni.