A new study suggests that nearly a third of children and adolescents with disabilities has experienced violence – defined as physical, emotional or sexual abuse as well as neglect. It's everything from being struck or verbally attacked by a family member to cyberbullying.
And they're reportedly twice as likely to experience violence as young people without disabilities.
A tremendous number of kids are affected. An estimated 291 million children and adolescents — slightly more than 1 in 10 — have disabilities such as hearing or vision loss, epilepsy or intellectual disabilities.
The review, published in the medical journal The Lancet Child and Adolescent Health, reaffirms the discouraging conclusions of a World Health Organization-backed review published in The Lancet a decade ago, focusing on high-income countries.
This time, data from low-income and middle-income countries, where the overwhelming majority of young people with disabilities live, provides a somewhat more inclusive global picture of the problem. It also included a wider range of disabilities than the 2012 WHO-backed review.
There are still limitations to the new material – only studies in English and Chinese are reviewed and just from seven low- and middle-income countries. Nonetheless, "I think this is a very important study because it shows that violence against disabled children happens in different countries of varying income levels," says Mia Ives Rublee, director of the Disability Justice Initiative at the Center for American Progress, a progressive think tank in Washington, D.C. "It gives us a framework to ask what we are going to do about this violence, including calling on all governments to provide enough resources and information to communities to help alleviate the situation."
An important part of creating lasting change will be welcoming the participation of more people with disabilities, including young people, in policymaking, says Leyla Sharafi, gender adviser at the United Nations Population Fund, who coordinated a similar study in 2018.
For more insights, we spoke with Ilan Cerna-Turoff, a postdoctoral fellow at Columbia University Mailman School of Public Health who co-led the new study.
Why update the 2012 study?
Periodic updates help policymakers and researchers assess progress toward global targets of ending violence against children with disabilities. In our work, 23% of the new studies were from low- and middle-income countries, which is a starting point in understanding what the actual scope of the issue is outside of high-income countries. We also expanded our search to articles in Chinese. Studies in Chinese constituted 11% of the included studies and provided more information on violence within China, Hong Kong and Taiwan. We lastly examined more nuanced aspects of violence than in the prior study, such as in-person and virtual bullying.
How accurate to you think the numbers are in your findings?
The numbers in our study are likely wildly underreported, considering that studies have found upward of 30% to 98% of violence is never reported in the general population. Children with disabilities may not understand what constitutes violence or have power to fully protect themselves, including not possessing verbal or mental capacity to understand and report violence.
You include emotional violence and neglect in the types of abuse. Can you explain those terms a bit more?
Emotional violence is usually understood as psychological or verbal abuse. It includes making someone feel humiliated, ostracized or less than. Neglect can be physical, emotional, educational, medical or safety-related and constitutes anything that puts a child in danger or does not fully consider the child's needs.
And it doesn't have to be in person?
Violence can occur in person or be virtual, as is the case with cyberbullying.
What are the triggers for this violence among the people who commit it?
There are a multiplicity of triggers. Past research has shown that stigma is probably the largest part of the issue. There's still a lack of understanding of people with disabilities among the wider public and oftentimes having a disability makes one the brunt of jokes or fear. Children with disabilities may, as a result, be bullied or experience physical and emotional violence.
And it's not just outsiders who are responsible, it's family members too, right?
There are caregivers and family members who might act out because of stress. Some children and adolescents with disabilities have very high care needs, whether they be physical or financial, which can put tremendous strain on caregivers and families. Caregivers may not have good [role] models for how to raise children with disabilities and handle complex behavioral issues.
How do we change norms about stigma and protect children with disabilities?
Most countries have norms that stigmatize people with disabilities. There have been extreme instances where epilepsy and other disabilities are thought of as manifestations of witchcraft, which has led to extreme abuse of children in some instances. Engaging religious and community leaders and conducting community education have proved effective in shifting norms.
Why do you think there has been so little change in outcomes between the two reports?
It is not an easy issue. We're talking about something that has multiple causes and can't be treated with a vaccine or intervention. We have to create new social norms and educational, social service, health and other systems that prevent and respond effectively to violence against children with disabilities. We need to ensure that systems are sufficiently supported financially and that personnel have ongoing training.
We also should have better parental education to support raising children with disabilities but face challenges where there are limited budgets for such work, especially in low- and middle-income countries. Then, you add COVID-19, you add the climate crisis plus other economic and social factors. For policy makers, it's a challenge. They have multiple priorities that all require investment at the same time. We need to be talking with policymakers to be sure these issues [of violence] don't fall off the agenda and ensure that programs are fully funded and implemented.
If you look at disability adjusted life years that are lost due to violence, it impacts the development of a country as a whole and hinders financial and social development. This makes the case that violence prevention is a smart and important priority that needs to be invested in. We're talking about millions of children. There's more than just a financial argument, however. There's also a moral and social justice responsibility to invest in these children within our societies.
And you'll be continuing your work?
It's too big an issue to fail or to stop. We need to make sure we are keeping ourselves accountable.
Fran Kritz is a health policy reporter based in Washington, D.C., who has contributed to The Washington Post and Kaiser Health News. Find her on Twitter: @fkritz