Any physical therapist who has ever worked with disabled children comes to realize just how much of the specialized orthopedic equipment they use gets discarded. Gayle Edwards is one of those PTs, so in 2002, she decided to do something about it.
She sat down with her husband, Greg, who has a background in electronics and computer software, to figure out how they could combine their knowledge and experience with that used orthopedic equipment to "open the doors of access to the world for individuals with physical challenges and limited resources." The result is Mobilize Mankind, a growing nonprofit organization that has fitted more than 800 children in Baja California Sur, Mexico, with wheelchairs and other adaptive equipment. The locals know it by its nickname, "MobiMex."
Mobilize Mankind has its U.S. base in Eugene, Oregon, where Gayle worked in early intervention programs. After registering the organization as a 503(c)3 non-profit, Gayle started networking with other school-based therapists at the annual Therapies in Educational Settings (TIES) conference to locate equipment.
TIES attendees directed her to families, vendors and other organizations. She began cold-calling vendors, and scouring ads on websites, such as the one for United Cerebral Palsy. If she spotted an ad that had been on the site for a long time, she'd call the family and say, "Hey, if you don't sell that, can we have it?"
Meanwhile, Greg attended a wheelchair seating symposium to learn more about the equipment and how to fit a child with a chair. He met a vendor who, like himself, is a surfer. They connected and that vendor agreed to donate both new and used equipment to the program.
Gayle also counts her connection with Adaptive Engineering Labs Seattle-area office as a major coup. The CEO and the marketing director, Don Wanat and Ann Kenney, have been so enthusiastic that they have traveled to BCS several times to volunteer with MobiMex. They also donated truckloads of leftovers and equipment that clients had rejected.
"It's like little rivers that flow to the ocean, and it all comes in here," said Greg, waving to the big warehouse in Eugene, now filled with both new and used equipment, including bath chairs, standing frames, slings, harnesses, seat cushions, AFOs of all sizes and colors, and of course, wheelchairs and wheelchair parts.
Gayle has a less poetic description: "Stuff is not the immediate problem," says Gayle. "We are getting good stuff. We just have no place to put it."
And often no convenient way to get it to its eventual destination. Storage and transportation are two of the biggest obstacles MobiMex faces as it grows. So far, Greg has done most of the transporting, attaching a trailer to his Chevy Suburban, filling it with goods from the Eugene warehouse and driving for four or five days-depending on the challenge of crossing the border on any given day-before reaching the southern tip of the Baja peninsula, their home base for the past nine years.
Remodeling and Rebuilding
The government in BSC, though, has stepped up and now MobiMex has been provided with three warehouses. Two of them are located in older centers. One in Cabos Los Santos, where MobiMex has been based since acquiring a five-year sponsorship from the Los Cabos Children's Foundation, the other in the capital city of La Paz. The third is in Ciudad de Constitucion. Each Center also houses clinic space for evaluating clients and fitting them with wheelchairs or other adaptive equipment.
"The building in Ciudad de Constitucion wasn't in very good shape when we saw it on our way north in the fall," Greg said. "But they promised to fix it up if we would come. We were a little skeptical, but when we drove back through on our way to Los Cabos, we were stunned by the work they'd done."
Not only had the building been painted, but it now sported new bathrooms, new linoleum on the floor, doors with locks, and a roof over the paved courtyard area that now serves as the patient waiting area. Plus the government provided 24/7 security personnel to guard the equipment. They were serious about having MobiMex in their community.
When they opened the doors to their first clients, Greg was eager to let DIF-Mexico's human services agency-know just how pleased he was. "We're thrilled with the collaboration, help and generosity of DIF here," he said.
The 20 to 30 clients they intended to see during the 3-day grand opening of the Ciudad de Constitucion center turned out to be a low estimate. Before they were even able to finish unpacking the equipment they brought along from the warehouse in La Paz, a half dozen people were seated in the waiting area.
Gayle, who speaks fluent Spanish, handed intake forms to DIF staff members, who were on hand to help out in whatever way they could. The very first client was a young teenager, Perla, who had cerebral palsy resulting from a medical error.
While Gayle interviewed Perla and her mother, Greg was setting up shop in another room. He'd brought tables, stacking trays and sturdy plastic boxes filled with an enormous variety of screws, bolts, nuts, straps, anti-tippers, foot plates, leg rests, harnesses, and other assorted materials and an equally astonishing array of both power and standard tools for rebuilding adaptive equipment.
Several other rooms held wheelchairs, some complete, some in parts, plus additional loose back rests and seats, walkers, standing frames, and bath chairs.
Gayle, Greg and I met with five new clients that first day. Gayle was familiar with some of them through previous discussions with DIF staff, so she had brought along wheelchairs or other equipment to share with those people.
The next day, MobiMex was scheduled to see about eight new clients, but 11 showed up. The most memorable was a young woman named Anais.
About a year before this, Anais was a new college graduate, not something common in this rural area of Mexico. She was driving home one evening when her car struck one of the many cows that stray onto the dark, narrow highways of Baja California Sur. When the MobiMex staff met her, she was completely nonverbal and immobile, with contractures in all four of her limbs. She had a tracheostomy and a feeding tube, and she was constantly coughing up phlegm.
"She made me cry," said Laya Garza Coronel, Directora de Atención Ciudadana in Ciudad de Constitucion, a feeling everyone has when seeing Anais or hearing her story. Her family takes good care of her, keeps her clean, makes sure she is fed. But Anais could be the poster child for what happens in areas where there is little education or understanding about rehabilitation, even among those hired to help the disabled.
Mexico has no degree programs for physical, occupational or speech therapists. Physical therapists, including Adrian Orozco, who helped out at the Ciudad de Constitucion clinic, just apply through DIF or other human services agencies for the position of physical therapist. Some have been PE teachers, others have worked in special education programs, but none has any formal training in rehabilitation. What Orozco has in common with PTs everywhere, though, is a passion to help others.
Spreading the Word
On the third and final day of the Ciudad de Constitucion clinic, more than 20 clients were served-far more than expected and certainly too many for the available equipment. More than half weren't scheduled for a visit; they came because others told them about the MobiMex clinic.
"There are a lot of people who need this kind of help," said the mother of Alexis, a girl with autism who was given a brand new stroller style wheelchair. "So many disabled children live on the ranchos, and they don't realize this kind of help is available," she added.
Pepito's mother lifted her 20-year-old son who has cerebral palsy from the back of her car into an old torn-up transport wheelchair to wheel him into the clinic. She cried when she met Gayle. "You don't know how we suffer," she said.
One family exhibited that suffering only too well. The matriarch was accompanied by her son, daughter, son-in-law and grandson. Her son, known as Chico, became hydrocephalic a few days after being born on a rancho. By the time she realized the seriousness of his condition, it was too late to get help for him. Now 33, the young man doesn't speak and is so contracted he can't even sit up.
Chico's sister was healthy, but her son, Martin, was born with cerebral palsy. Martin, a sizeable young man in his late teens, was mobile until recently, when he began to have trouble with one of his feet. It hurt, so he mostly stopped walking. When his mom reached down to take his shoe off to show Gayle the affected foot, the boy hit her. While he didn't hurt anyone this time, it wasn't a situation Gayle felt she could handle, so she referred the family to the newly opened rehab center in La Paz, called CRIT, which provides many services, but also has a lot of requirements that challenge some families' resources.
For Chico, Gayle passed along an old beat-up wheeled recliner that another patient had brought in earlier. The staff hadn't had time to clean it up, and it needed some mechanical work done, but the old mother, who picked up Chico and placed him in it for Gayle to check the fit, kept stroking it. It was neither shiny nor new, but for her situation, it was perfect.
Finding Alternate Solutions
The Ciudad de Constitucion clinic was unusual in the age distribution of disabled clients who came. Many were in their mid-to-late teens, several in their 20s and 30s, and one was more than 40 years old. Fewer than five were under the age of 10. But no matter if they had CP, autism, hydrocephalus, spina bifida or muscular dystrophy, Gayle talked to them and their families, provided equipment if it was available, suggested alternatives if it wasn't. Every family was shown how to seat their child in the new wheelchair, how to fold it for transportation and storage and how to make an adjustment if something wasn't quite right. And, like one family that showed up, all were welcomed to return and trade in the chair if their family member outgrew it.
The Edwards realize that what they're doing is just scratching the surface of the need in their little corner of Mexico. Both the Cabos Los Santos and La Paz centers have focused not only on providing assistive devices, but on training staff and families at the Special Education Schools and in the DIF Clinics to measure the kids, choose the right seating system and adjust the wheelchairs. They hope to establish the same system in Ciudad de Constitucion.
They have been able to assist the Juan Pedrin Castilloin Los Cabos special education school acquire appropriate inclusive playground equipment and given enough donations, they hope to repeat that success elsewhere.
A couple times each year, MobiMex hosts an amputee clinic at their La Paz center, where certified prosthetists Brad Farrow, Paul Boe and Jim Thompson volunteer their time. They've trained some locals to make adjustments during the months between the formal clinics, and MobiMex is sending one individual to the U.S. for full-on training with a prosthetist.
Lobbying for Change
Besides their clinics, Greg and Gayle lobby local governments about other changes they feel are possible and would assist the disabled, such as opening a manufacturing facility where Mexicans-preferably those with disabilities-can put together basic transport wheelchairs built with parts that are suitable for their environmental challenges. They also hope to get local bus services to attach a platform to the back of each bus, so families can carry their wheelchair-and therefore, their child-around town.
Mobilize Mankind has a board of directors to guide their planning and monitor their donations, but for the most part, the organization is Greg and Gayle. They are always busy and always absolutely delighted when anyone offers to volunteer some time with them.
The Edwards do their best to schedule clinics to coincide with dates when volunteers are there.For example, several therapists and teachers from the Eugene, Oregon, area spend their spring breaks in Cabos each year. They eagerly look forward to seeing the children they've served grow and develop, and they've established professional ties and friendships with many of the staff and family members.
There are some special joys in volunteering with MobiMex. The lack of privacy can be a little disconcerting at first, but the families are so open, have no sense of entitlement and are so very appreciative of any little thing you do.
Another joy is the freedom with which MobiMex hands out the equipment. Greg has set up an inventory system, and Gayle keeps track of everything she gives to their clients, but there are no insurance forms, no begging for approval, no limitations on benefits. If the equipment is in the building, fits, is suitable and is acceptable to the family, it goes out the door with the client. It's all been donated, Gayle says, and it should all be used.
And what could compare with standing on a beach on a sunny spring day, watching gray whales cavorting in the water not too far from shore, snorkeling or surfing in sparkling blue water, or golfing under a bright blue sky? After all, Baja California Sur is also a terrific tourist destination.
If you'd like to find out more about volunteering with MM, you can sign up via their webpage (http://www.mobilizemankind.org/), or vist their Facebook page (https://www.facebook.com/MobilizeMankind)
Marcia Veach is a licensed physical therapist assistant and has practiced physical therapy in Oregon for more than 25 years. She also holds a BA in journalism from the University of Oregon.