I believe in the rights of children, including the right to be loved and told the truth by those who care for them. They deserve to be protected from abuse and exploitation. No child should be used to gratify the hungers or power needs of any person. No child should be beaten, enslaved, caged, locked into closets, willfully starved, or blamed for abuses they suffer. No child, ever, should be bought or sold.
These aren’t new ideas. Janusz Korczak spoke passionately of the rights of children as he cared for orphans in Poland under the Nazis, right up until he accompanied the children he loved to their deaths. Dietrich Bonhoeffer, another Holocaust victim, argued that the character of a society can be seen in how it treats its children. If so, the character of human society to date seems a twisted, ugly thing.
I work at a children’s hospital, where I’ve met children who were beaten, shaken, neglected, abandoned, or otherwise abused. That these are terrible wrongs, my colleagues and myself agree. But regarding other rights of children, health care institutions, medical personnel and parents conspire through silence and deception to hide the truths of their own bodies from the young. Children in hospitals have no voice in medical decision-making. Their bodies and care are governed exclusively by the grownups that surround them.
A teenaged child with a pernicious tumor asks to see his x-rays; his parents refuse. He asks to go home and spend life’s end with beloved friends and pets. Told at one hospital that further treatment was futile, his parents take him to another hospital and beg for treatment. That hospital enrolls him in a toxicity study – an experimental use of drugs designed not to cure but to test what a body can endure. He does not endure long.
Actions like these occur daily in hospitals as elsewhere. Children are routinely denied control over their deaths and lives. Care conferences, at which parents, physicians, nurses, and others gather to discuss treatment options, involve many people, but not the child. Their inclusion is seldom considered.
Children understand more than we know. Even if they don’t understand all the words we grownups use, they understand and are grateful to have someone lovingly explain to them what’s happening and why. They know painful actions are sometimes necessary to restore their health. They deserve to know and have a voice in their own care.
Dying children need to complete the work of their lives, whether that means reading a favorite story or, as with a child I knew, making a beaded necklace as a farewell gift for Mom. Children deserve to know when they’re dying and to be involved in deciding how they’ll spend their days. They deserve full status as human beings.
It’s time to grant children the love, protection, truth and voice that each of us seeks in our own lives.
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