Opinion: Why do millions of children live with a treatable disability?

From Afghanistan to Belarus, Venezuela to Myanmar, we live in an unprecedented time of human displacement, with millions fleeing their homes in crisis — for a better life, medical attention, or shelter from untenable suffering. Among the most vulnerable of this growing population are children with disabilities.

More children live with a disability today than at any other time in history. They experience higher rates of poor health, poverty, hunger, neglect, violence, and physical and sexual abuse. They are less likely to go to school, access health services, or find employment as adults. They face discrimination and stigma, inaccessible physical and online environments, even institutionalization, and a lack of autonomy in health and legal decision-making. Many, in fact, do not legally exist; their births are never recorded.

Despite high-level advocacy and rhetoric about inclusive development, children with disabilities have simply been left behind by global health and development agendas. Their rights — to health care and an education, to play, and to be protected from harm — are routinely violated by systemic inaction and complacency.

Migration for mobility

I recently met a mother from Venezuela, at a MiracleFeet partner clinic in Ecuador, whose story brought these issues into focus. An outgoing woman, Carolina, told me about having no one to turn to when her son was born with clubfoot, one of the most common and treatable birth defects. There were no services, no doctors; the health system had collapsed.

The crisis in Venezuela is not new and many who could leave did so. But, like so many others, Carolina had few options and stayed. When she had her son though, she realized the only way to help him was to leave her country — on foot. So she packed up and, with her infant son, walked to Colombia, becoming an immigrant.

I've been an immigrant most of my life. Born in Brazil, I moved with my parents to Venezuela, then England, and eventually the United States. As an adult, I’ve lived and worked in Bolivia, Mozambique, and Panama. I’ve been able to move effortlessly through and across borders, having the good fortune and privilege of “going through the front door,” always with the right papers and documents. When I hear the experiences of people crossing borders without these freedoms, I feel a responsibility to share their stories. Almost always, it’s for their children.

Unable to find work in Colombia to pay for her son’s treatment, someone told Carolina about a clinic in Quito, Ecuador where he could receive care. So she left again, now with a toddler on her back, and walked for almost two weeks to Ecuador's capital, where he finally began treatment. After a few plaster casts and a foot abduction brace, worn at night — that’s all the treatment he required — her son was able to walk and run.

Another mother I met, from Quito, said that her OB-GYN detected “talipes equinovarus” — the medical name for clubfoot — by ultrasound during pregnancy. Two weeks after giving birth, she walked a few blocks to the clinic where her son began the same process for correcting clubfoot.

It took Carolina a year and a half, walking 1,500 miles across two countries to find a non-surgical treatment for a leading birth defect. She’s not alone. 150,000 parents each year struggle to access this care for their newborn. A clubfoot diagnosis can completely upend their lives. 

Up to 7.5 million people worldwide live with clubfoot’s severe disability and stigma because they’ve never received appropriate care. MiracleFeet exists solely to ensure children born with this preventable disability have access to the same medical care routinely provided in higher-income countries.

More children are surviving, fewer are thriving. What can we change?

Only the highest-income countries have seen declining rates in childhood disability. One major reason is that congenital anomalies — many of which can be prevented or, like clubfoot, treated — have been neglected in low- and middle-income countries for decades. Limited investments in clinical advances, such as the Ponseti method for clubfoot, and physical rehabilitation services, means that up to 150 million children have chronic impairments that impact their quality of life and participation in society.

“70 to 75% congenital birth defects can actually be treated or managed,” said Ayesha de Costa, scientist at the World Health Organization, during a recent panel on clubfoot. “To put congenital defects on the agenda in low/middle-income countries is our number one priority.”

Surging disability among the world’s youth is rooted in health system inequities, but perpetuated by donor-led health priorities that underinvest in chronic conditions. We count reduced deaths, not improved functioning or well-being. Governments, donors, and health NGOs can shift this trend by integrating the detection and referral of major congenital conditions into child health programs and physiotherapist-led care within primary health initiatives.

Vast inequities threaten many human rights today, but for clubfoot, this is a gap we know how to close. In dozens of contexts, including conflict and fragile states, MiracleFeet’s local medical partners have proven that clubfoot treatment can be safely and effectively delivered, as well as reach populations at scale.

On World Children’s Day, we affirm our commitment to the Convention on the Rights of the Child, or CRC, joining UNICEF and a growing chorus of rights-based organizations calling on global health leaders and governments to prioritize and protect the world’s most vulnerable children. The CRC is the most widely ratified human rights treaty in history, but human rights charters are only as good as society’s ability to safeguard the rights of all — not the richest, or ablest, or easiest to reach.

From Caracas to Quito, Carolina walked part of a continent so that her son could walk. No parent should have to go to breathtaking lengths for something as ubiquitous and cheap as treatment for clubfoot or cleft lip, or a new wheelchair, a pair of eyeglasses, or a vaccine — these aren’t miracles. Accessing these is a right.