A higher than average number of people in the Democratic Republic of the Congo (DR Congo) suffer from lower-limb disabilities. Conflict and instability in the region have contributed to the problem, and much-needed medical treatment is scarce, particularly in the rural regions.
To further complicate matters, DR Congo is one of the poorest countries in the world, so even where care is available, parents are rarely able to pay for the proper corrective equipment that could dramatically help their children.
"Though our beneficiaries are primarily youth who were paralyzed by polio during the first years of their lives, or who became paralyzed as a result of ill-advised injections in their hips during treatment for malaria, StandProud also supports ACDF to assist youth suffering from the milder forms of cerebral palsy, those born with club feet, and some with spinal cord injuries (all of whom were previously confined to wheelchairs for many years)." - Jay Nash, Chair
Most polio survivors have no way to move around except to drag themselves on the ground. Despite the high incidence rate of disability, the stigma associated with paralysis remains and serves as a barrier to education and employment for victims of paralysis.
StandProud and local partner ACDF (Association Congolaise Debout et Fier) annually craft braces for hundreds of beneficiaries and carry out thousands of free brace repairs. StandProud beneficiaries not only walk with greater dignity, but are integrated into the same schools as other children. As visitors to the six StandProud/ACDF centers often remark, StandProud beneficiaries are also typically avid, unselfconscious dancers and soccer-players, comfortable with their disabilities and openly manifesting positive attitudes towards life.
Currently operational in six Congolese cities—Goma, Bunia, Butembo, Kalemie, Lubumbashi and Kinshasa—StandProud restores hope and dignity to children and youth dreaming of playing soccer and desperate to dance.
The DRC's population of 72 million is comprised of 350 different ethnic groups speaking five official and hundreds of local languages.
In the poor, rural regions of the Congo, a life of disability means stigma, lack of opportunity and significant obstacles to education.
The Democratic Republic of the Congo (DR Congo), formerly known as Zaire, is found in central Africa and is home to vast natural resources. The Congo River, which traverses the country from east to west, is one of the largest rivers in the world and, if harnessed, could potentially produce enough hydroelectricity to power the entire continent. A tropical rainforest covers a vast majority of the land and is considered Earth’s “second lung,” after the Amazon rainforest. The amount of biodiversity is staggering, with new species of animals and plants still being discovered. Fertile soil produces an agricultural bounty, and deposits of gold, diamonds, copper, uranium, oil, gas, and minerals are found in abundance.
In spite of the natural richness of the country, the DR Congo is among the poorest countries in the world, where 89% of people live on less than $2 per day, and consistently ranks at or near the bottom of the annual UN Human Development Index. There are few roads or railways, and its health and education systems are significantly lacking. An estimated 10 million Congolese have a physical disability.
The discrepancy between these two pictures of one nation is caused by political instability, exploitation, and a history filled with unspeakable horrors, tragedy, and greed. The BBC notes, “its natural riches have attracted adventurers, warlords, corrupt governments, and unscrupulous corporations, and divided the population into competing ethnic groups.”
An extremely deadly and destructive conflict in the 1990s became known as 'Africa’s World War.' It resulted in the death of more than 5 million people and is the bloodiest conflict since World War II. Currently, conflicts in eastern DR Congo have resulted in more than 2 million internally displaced people and more than half a million refugees.
A Life of Difficulty
Poorly administered anti-malarial vaccinations, polio and meningitis outbreaks, spinal cord injuries and congenital defects such as club feet have all contributed to the high rate of disability in the DR Congo. And in a country where it is estimated that 82% of the population is either underemployed or unemployed, a disability provides an even greater obstacle to economic freedom not only for the disabled person, but also for their family.
While many could use a cane in combination with orthopedic leg braces, the economic situation in DR Congo practically guarantees that disabled individuals and parents with disabled children can rarely afford this equipment. The health system is unable to provide the appropriate or affordable treatments and the government has no assistance available.
Barriers to Education
Disabled persons in DR Congo have few options to them and are left to get around as best they can – many times crawling on their hands and knees – which creates severe social integration problems, marginalization, lack of access to education, inability to realize their potential and failure to fully participate in society. Children are especially impacted, and only a fraction of children with disabilities in DR Congo go to school due to discrimination and a lack of accessibility and special education resources.
The end result has an impact not only on these individual children but on the outlook for the society in which they live. Without education, future generations are unable to contribute to economic growth and stability in their countries leading to more serious societal issues down the road. Access to primary education is one of the pillars of the Millennium Development Goals, a set of time-bound and quantified targets for addressing extreme poverty in its many dimensions. When disabled children are denied access to education, overcoming poverty at the personal and state level becomes that much more challenging.
Even in the midst of such dire circumstances, there is good news. StandProud is stepping into this gap and offering the medical and social assistance needed to enable the disabled to integrate into society, attend school, and contribute to the development of their country.
Take Olivier, for example. In 2003, Olivier was living in an Internally Displaced Persons’ camp near Lubumbashi, having fled fighting between government and rebel forces. He lost his father in 2000 and his mother eight years later. His older sister cared for him after his father’s death, but the family could not afford to pay his school fees, much less a surgical intervention to treat his clubbed-foot. Then he met StandProud/ACDF. The organization provided him with the surgical treatment he needed and paid his school fees. Olivier now walks long distances without difficulty, plays soccer and sports a favorite pair of kicks on both feet. He is so much more than his disability. Olivier is strong, capable, intelligent and brave and wants to become a lawyer when he is older to be able to represent disabled people’s interests in DR Congo.
Steve Jeter's photo essay illustrates the power of mobility. For these children, walking means the ability to go to school, get a job, play soccer and dance. Follow along this journey and get a glimpse into lives transformed.
A Different Lens
"As we got to know this amazing community of people in the DR Congo, it quickly became apparent that they had little patience for those who see them only as handicapped, disabled and incapable. In our first discussions we found that many of them did not even want to talk about their lives before the center and the life-changing apparatus and rehabilitation they received there. After spending more time with them, playing soccer, and having dance parties, etc., it became more and more difficult for us to focus on these disabilities at all. We were constantly being shown all of the many ways in which they were capable and independent.
One of our ideas for this photo series was to convey that sense of disassociation of the individual from the disability. These shoes, worn by everyone at the center from the director to the youngest student, have been expertly re-engineered in their workshop with metal plates and bolts, in order to connect to the stabilizing leg braces."
Eventually the crutches and leg braces became secondary - at times it was surprisingly easy to look past the braces and almost forget that each of them had overcome such crippling disabilities.Steve JeterPhotographer
Standing and Proud
Every youth coming to StandProud spends a number of weeks or months at one of the six rehabilitation homes, and all are welcome back to receive therapy at any point. A few will even become permanent residents, after a thorough discernment process identifying significant barriers to their health at home. At the centers, others with experience in rehabilitation can keep a close eye out for any problems or improper healing which may not be obvious to families at home.
Excellent Treatment, Locally Sourced
The approach goes narrow and deep, tackling a big challenge with a target focused enough to make a significant impact: serve Congolese youth ages 5 to 25 using braces the organization can make itself. Their customized designs employ local materials and labor—often supplied by beneficiaries turned skilled craftsmen—so that the model prioritizes sustainability.
Beneficiaries come with a few common backgrounds: childhood polio, poorly administrated anti-malarial prophylaxis, meningitis, or congenital defects. Staff at StandProud has learned the unique patterns and needs of each of these. Their braces are designed to strengthen weakened muscles and re-train joints to support the body, rather than relying on the brace or other body parts. Slowly, gradually, legs and feet re-learn their original order and serve their purpose once again. More severe cases needing joint repair or re-straightening may require surgery or a few weeks of casting, either of which can be arranged.
In Association With
Structurally speaking, StandProud is the US, UK and Swiss-based nonprofit partnering to support the work of L’Association Congolaise Debout et Fier (ACDF). In many African nations, the legal term “association” bears rich cultural significance. It declares that a group of people have come together through some shared need, identity, or experience. It might be best likened to a fellowship, declaring publicly that we are bound together through choice or necessity, and often, both.
As an association, StandProud/ACDF is comprised mainly of those who are living with disabilities. Many have chosen to remain as part of the support network, discovering a vocation in caring for and supporting others literally walking in their footsteps.
Many of the youth they serve have become accustomed to low expectations and dehumanizing assumptions. StandProud offers a community where people with disabilities come together to share their strength with one another.
You’re new and have rarely been spoken to directly in the eye? You’re finding your new brace uncomfortable? You’ve been told that school isn’t an option for someone who will never be “normal”? Not here—not anymore. Standing proud is a way of life.
StandProud encourages students whose homes are supportive to return to their local schools and communities. Often, this means providing financial support for school fees for those whose families cannot afford them.
As they return to school, these young men and women set a new standard for life with a disability. They challenge expectations and defy assumptions. They become ambassadors for the potential of those living with disabilities and they extend this inspiring vision far beyond the walls of the homes. Those who may have been told they are cursed and outcast return to their communities with confidence.
From this shared experience, the Association advocates in schools and communities where its beneficiaries return to live. They help demystify disability and educate about common causes and treatments. Their hope is to serve as a voice for inclusive spaces and opportunities while continuing to support one youth at a time to discover their potential as whole people.
This issue is unlike any other I’ve worked on in my 4.5 years at Bittersweet. As our first ever “Reader’s Choice” feature, this story came to us, rather than us going to the story.
Six months ago, I had never heard of StandProud. I did not know that the DR Congo had a higher than average rate of disability nor was I aware of the obstacles and adversity the disabled community faced. But what surprised me most is not the hardship and stigma that disabled youth have had to endure; rather it is their strength and independence.
When I first imagined the story, I envisioned people bearing the scars of paralysis and isolation from their own communities. But in truth, these brave and resilient Congolese youth are far from what I had imagined.
These are people who are living their life — living it to the fullest, not held back by their ability or disability, dreaming of the future, of what it will bring, of what they will achieve — an inspiring example for us all.
So, I want to end this note by saying thank you to our readers. Thank you for sharing this story, thank you for opening my eyes to a community of strong and capable leaders, thank you for lending us the opportunity to be a small part of this unique and important work.
Editor, Bittersweet Monthly