About eight years ago, on a news segment about peer support for families who have kids with disabilities, I talked about the grief that families feel when their child receives a diagnosis. A journalist who had cerebral palsy took me to task, saying that I was against people with disabilities (!), and that by expressing the sorrow that comes with a diagnosis in the early days, I disrespected my son. I felt great shame for feeling the way I felt, and for also expressing it in a public way.
I have conflicting feelings about this. As a wise spiritual care leader at my work said – you have your story others have their own stories. It is ok if these stories are not the same. So I have my story about being Aaron’s mom, and yes, Aaron has his own story about being Aaron. As he gets older, I hope to support him to tell his own story. (If he wants. I also live in fear of becoming a stage mom). When Aaron appears in my presentations, or even on my Facebook page, he is aware I am talking about him. He helps me pick out his photos. If he doesn’t want a particular picture used, I don’t. Is he truly giving informed consent? I guess that’s a controversial question for a kid with Down syndrome. I trust that I explain what I am doing in a way that he understands, and that I give him a true opportunity to say ‘no’.
Since the fall of the website The Mighty, (see this Washington Post article for an explanation) I’ve been even more reluctant to write about Aaron. There have been various edicts floating around the Internet that say that parents should not be writing about their kids with disabilities. I’ll tread carefully here, as with any ethical issues, the answer isn’t black and white.
If you are a writer who writes about your experience having a child with a disability, I’m not going to tell you what you are allowed and not allowed to do. This type of reflection is personal, and we all figure out this whole parenting thing in our own time. Passing grand judgments on what everybody must do seems in itself judgmental to me.
Being aware, participating in regular reflection, and being open to listening to my kids is what I promise to do. My eldest son asked that I not publish about him anymore, so I don’t. I check with my other two kids before I share pictures or stories. I try to express my own story (including feelings and reactions) as a mother without compromising my kids’ privacy or dignity. Such is the delicate balance of figuring out what is my story and what is theirs. I don’t believe that shaming or muzzling people is the answer – surely there are more respectful ways to give people pause to think? We all have our own answers about what’s the right thing to do, and our answers reside in our own hearts. You figure out your right answer, and I’ll figure out mine.