I recently read Amy Sequenzia’s “Privacy Versus Popularity” and would recommend it to all parents of disabled children. This short post asks parents to consider the consequences of how they speak about their children.
Some parents may use the experiences of their child as a platform for popularity or fame. But Sequenzia emphasizes that your child’s story is NOT your story.
She explains that there are ways to respectfully talk about your child. For example, some parents may choose to discuss their child’s life anonymously, not share personal or embarrassing details, or ask their child’s permission before speaking publicly or publishing anything in print or on the internet.
This also extends to how parents talk about their child to their friends and members of the community both on public platforms and in private settings. Because what we say about our children matters (whether they can hear it or not).
However, not all parents follow these rules. They may believe that sharing their stories can benefit the lives of others. If this is the case, Sequenzia wants us to consider the harm a lack of privacy can cause a child later in life. Additionally, parents should be able to still help others and discuss their children in ways that respect their privacy.
Other parents may have difficulty finding where the “sharing line” is. To some extent, children ARE a part of a parent’s story. For most of a parent’s life, raising children is a significant part of their stories. I think what Sequenzia and other self-advocates are saying is that parents have a responsibility to protect the privacy of their children and help them develop self-confidence and advocacy skills. If parents lose sight of this within their own visions of popularity or fame, there is a problem. This probably sounds easier to follow than it is, so I think it is a good idea for parents active in advocacy to reflect on Sequenzia’s post periodically even if they believe they are already respecting their childrens’ privacy. We have to be careful not to speak for our children. Rather, we should focus on ways to help our children tell their stories in their own ways.