From the Huffington Post comes an opinion piece by disability rights advocate Emily Ladau. She discusses the recent case of a family who went public with a picture of their profoundly disabled 16-year-old son wearing nothing but a nappy. While she acknowledges the gritty reality the parents, who look after their son 24/7, must face – she believes this doesn’t excuse robbing any 16 year-old of his dignity with such an image.
I read the story of Judy, James, and their son Justin soon after NPR published it, and I wasn’t initially struck by any signs of controversy. However, I followed the responses evoked by the article, and soon became concerned about one of the featured photographs in which Justin is shown wearing nothing but a diaper while being carried by his father. The debate surrounding this photo points to some incredibly complex disability issues that simply cannot be ignored.
So many parents have responded favorably to the picture, asserting that it’s great to share such an honest look at daily caregiving responsibilities. And while I’m all about keeping it real, I cannot comprehend why so many people aren’t getting what’s wrong with showing the world a picture of a 16-year-old boy wearing nothing more than undergarment. First of all, parenting is caregiving by definition, regardless of whether they have a child with a disability or not. For children of any age and any ability, the care they need from their parents can sometimes be messy or personal; these are the moments to keep behind closed doors purely because it is the respectful thing to do to protect a child’s privacy. There are tons of other ways to show the intimacies and dynamics of caregiving while treating Justin the way every 16-year-old young man should be treated. There are tons of other ways to show the love that James and Judy have for their son. Thus, I realize the point of the photo is to capture part of the daily routine of caring for Justin, but that in no way excuses violating his basic privacy — even though his parents had no issues with it.
This is all about informed consent. As Emily notes in her article, no 16-year-old boy would knowingly give permission to be photographed in a nappy carried by his parents. While the parents have a complex and difficult job they could have highlighted these issues in a way that wasn’t at the expense of their son’s dignity.