Lourdes Pilco woke to the babbling of her son. Here,
so close to the equator, the sun rises early, yet it was still
dark. Lourdes fumbled for a moment, the faint light of dawn
bringing her reality into focus. Her husband started to move and so
did her gaze, now darting to the beautiful two-year old. With
powerful motherly love and concern, she checked to see everything
was fine and smiled at the boy's soft dark hair, his delicate,
playful hands, and the little feet that would soon carry his tiny
|Lourdes (right) and Rene Pilco. Photos provided by David Krupa, CP.|
Filled with happiness and pride she looked down. Her own legs did not make it to the floor anymore, amputated and disfigured just like her right arm, devoured below the elbow. All of this had happened slowly over the past few years, and both her brother Rene and she suffered the same burden. Dried blood on the fingers of her remaining hand was a reminder of the disease's unforgiving progress. Today, everything was the same as yesterday, but as the grey hue of the sky transformed to blue, hope illuminated the room.
I met Lourdes Pilco in Quito, Ecuador, on the morning of January 31, 2005. That Monday was day one of a weeklong prosthetic clinic coordinated by the Hermano Miguel Foundation and a team of five US O&P professionals, two technicians, and support volunteers titled "Próteses por Ecuador." This alliance's mission is to provide free prosthetic rehabilitation to severely poor Ecuadorians while fighting for disability rights and social reintegration of rehabilitated patients.
|Lourdes and David Krupa, CP.|
In the weeks prior to our arrival, the staff interviewed, evaluated, and selected 50 patients needing prosthetic care. Back in the United States, we raised awareness, and donations of used prosthetic limbs, critical to these projects, came trickling in. Otto Bock, SPS, Ossur, Friddles Orthopedic, ProtectAir, and the Barr Foundation supported the project with donations, components, plastics, and plaster.
Arriving at the clinic, we were greeted by a group of people waiting outside the door, propped against the wall, and lined up on chairs. They ranged in age from 11 to 75. Many were parents; half were victims of traumatic accidents. Most did not have prostheses, and amputation tended to be the sole reason they could not provide for themselves or their families. They all looked hopeful, while we were a little nervous - unsure if it would be possible to help everyone with the time and materials available.
The healthcare situation for disabled people throughout the world, including Ecuador, is troubling. The United Nations estimates that 80 percent of the world's disabled persons live in developing regions. Within Ecuador 70 percent of the population lives below poverty level, and the majority of people with amputations and their families are fated to this life. The Ecuadorian economy is built upon oil exportation, agriculture, and manufacturing - thus demanding a large manual labor force. The sudden loss of a limb in a traffic accident instantly reduces the chance that one may find gainful employment. Furthermore, most of the transportation infrastructure is poorly maintained and inaccessible for the disabled. Mobility and independence are so limited that many of the patients we saw resorted to homemade crutches, used wheelchairs, half-destroyed/ barely functional prostheses, and - in the case of one patient - using a pair of someone else's artificial limbs.
|Mike Oros, CPO, training Rolando Icaza.|
More than the dilemmas of reduced mobility and economic strife, people with amputations face attitudinal barriers within society. A common view is that they are less than human. As the week wore on, I would come to discover that even some of the patients themselves believed in their "subhuman" status.
A Way of Giving Back
I cannot force anyone to believe in the necessity of these projects, but here are my own motives. Attempting to help allows me to face two inner struggles. First, my own amputation has never been disabling and maybe never will be, because of the quality of care available in this country. Should luck of the draw sentence anyone to the hopelessness of amputation without rehabilitation? I am frightened by that hopelessness.
Secondly, despite obvious economic realities, I feel conflicted about selling my services when there are people in the world who can't buy them. Volunteer Mike Oros, CPO, said that, "People with disabilities in Ecuador are unable to lead active, normal lives, and donating my time was a way of giving back and helping those who do without the basic necessities we are able to offer patients in the United States."
How It Began
"Próteses por Ecuador" was initiated by Dino Cozzarrelli, CPO, from Asheville, North Carolina. Dino was born in Ecuador, grew up in the United States, and spent much time over the years visiting family in Latin America. Dino possesses a quality that urges him to watch a person limping by on the sidewalk and to wonder if and how this person can be helped. It was quickly apparent to Dino that for Ecuadorians, especially the poor, finding prosthetic treatment is virtually impossible.
He recognized a frontier in great need and set out to organize a way by which the amputees in Ecuador could be served. What impresses me about Dino more than his lofty ideals is the fact that he proves these ideals can be made reality with enough devotion and passion. The results over three years of "Próteses por Ecuador" are telling - with more than 150 amputees assisted and countless other lives touched.
Working and Teaching
The first day our team evaluated and cast roughly 25 patients. The office staff was a machine keeping the process flowing. Our translators worked patiently, and the Ecuadorian technicians eagerly watched the castings and modifications. After all, there is little point in doing this work without teaching for the future. One of the unaddressed factors critical to dealing with the present lack of O&P services throughout the world is education. The frustration is not that everyone in the developing world doesn't want to help the disabled, but rather they can't.
|Maria Mora; AK amputation from snake bite.|
On Tuesday almost all of the other 25 patients were seen. Our technicians pulled thermoplastic for hours and fabrication seemed endless. We all had one goal in sight: to fit, align, and deliver 25 AK and 25 BK prostheses by Friday morning. We'd get up early and finish work late, and thankfully people were taking care of us in between, getting meals together, arranging accommodations, and coordinating transportation. As a little reward, we were even set free to see the beautiful city of Quito, which is nestled in a valley surrounded by Andean mountains.
By Friday morning Lourdes and Rene Pilco were teetering around the yard on new bilateral BK prostheses and Lourdes was proudly introducing us to her son. Amputees were hanging onto each other, forming a literal support group. Meanwhile I was working with Maria Mora.
She is unforgettable. Maria is 22, a beautiful, intelligent young woman, uncomfortable in her skin and fearful of what life holds for her. She was bitten by a snake when she was 12 and her leg was amputated above the knee to save her life. She had a prosthesis for a few years but outgrew the limb. Her only option for getting to and from high school and now college was to hobble around with what leg she had left jammed into the crook of a homemade crutch. One of her worst fears was that no man would pay attention to her and no one could love the "partial human" she believed she was. By the time we finished working together all of the other patients, practitioners and staff were up in the assembly hall ready to begin a short ceremony. Maria did not want to go up there, did not want to be around so many others.
"More Moving than Church"
We were all completely worn down by the week. It was clear and sunny as Maria timidly walked by my side with her prosthesis. Overwhelming thankfulness filled me because she seemed satisfied. As we climbed the ramp up to the assembly, something surged in my chest. The room was filled from wall to wall and almost everyone turned to watch Maria walk through the door. They all were finally paying attention to her now, and I began to cry.
An air of gratitude hovered around these people, and at first I could not understand their unusual way of voicing this thankfulness. They said, "This team is a group of 'important' people, an assembly of 'high class' people, and we are thankful that they have decided to help us, such 'lowly' people."
Hope for 'Marginalized' Persons
But I cannot figure why our lives have any more value - why we are more important. We are all interconnected and dependent on one another, so why would they think this? In a moment I realized that it is because they are marginalized, unseen, untended to, and virtually forgotten by society. My only hope is that now they can be seen walking down the street, working, and living. Maybe, one by one, their visibility in society can change attitudes and help people see that "disability" is only as crippling as the barriers we let stand in our minds and in our world.
Trips to provide prostheses in Ecuador are currently organized once a year by the Hermano Miguel Foundation, www.fundacionhermanomiguel.org. To donate prosthetic materials and supplies for use throughout the developing world, contact David Krupa, CP, at 219.864.9501, or ship directly to: Scheck & Siress Advanced Orthotics and Prosthetics, 8641 W. 95th Street, Hickory Hills, Illinois 60457, Attn: David Krupa.