A couple of days ago my oldest daughter said, “My friend is following you on Instagram.” I did’t give it much thought initially, but when I thought about the pictures I share and the words I write — especially about my children with disabilities — I felt a sudden sense of dread. These are the kids who go to school with my kids. Anything I write about them, their friends will know with as much detail as I share. It was a sobering moment of the responsibility I have to protect my children’s privacy.
My kids have reached the age where I can no longer write about them with the same oppeness parents do when children are younger. It is no longer appropriate.
If I, as a mother, want my children’s peers to treat them as friends, I must be the first one to uphold their dignity and treat them with the upmost respect. Disability does not change the fact that some things are not to be shared publicly. Ever. About anyone. Whether they understand it or not. Whether they are aware of it or not. Whether they are disabled or not.
My rule of thumb is, if I wouldn’t divulge those details about a typical child because it would be embarrassing, demeaning or violating, then they are embarrassing, demeaning and violating for a child with a disability, too.
I believe it is possible to be an encouragement to other parents of children with disabilities while still protecting my children’s privacy.
I can still tell my story and I get to choose how vulnerable I want to be about my own struggles.
My kids, on the other hand, have to be off limits because only they get to tell their personal stories. Anything I write about them through any social media channel or written word, I must assume will be read by their friends and peers. What do I want the friends to know about my kids? What picture am I presenting to their friends? Are my stories dignifying and respectful?
My kids’ disabilities are a part of what makes them who they are — and they are pretty incredible. I think this is what is most important for anyone to know about them.
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Thanks for this post Ellen! I know your friend Tonia talks about this a lot. When my family sees what a lot of other families share online about disabled children and children in general they are disgusted because they know how public the internet is. I am aware of defamation law and a lot of what people post to blogs could be considered defamation etc. My family and I were also particularly disgusted by a documentary called “Born Schizophrenic” because the parents depict their children having medical episodes and meltdowns that the kids pretty obviously don’t want filmed. There’s a scene where one of the kids says in a distressed voice “Why are you filming this?!” and the parents bluntly ignore her. Now that the kid is older she’s getting to a point health wise where she can work and date possibly but now her employers may see that documentary and discriminate against her all because her parents violated her privacy. One of the most objectifying supposed documentaries I have ever seen. Its part of why my own films like this one http://cripvideoproductions.com/astrokeofendurance.php are purely fictional stories so I can share what I have observed about life without violating the privacy or dignity of anyone. Before I post I am always aware people that I know will see it. There are always ways to raise awareness without embarrassing or defaming. So I really appreciate you being aware of this and making other parents aware. 🙂
Yes, I have watched another documentary where a child is shown not fully dressed and he is clearly uncomfortable, he tells the person doing the video not to film his body, just his face, but do you think that was respected? No. He is shown in the documentary completely vulnerable and being dismissed.
That’s really, really important. I appreciate your taking a stand in this for the sake of the kids. I know that nowadays “vulnerability” is such a buzz word and everyone wants us to be “authentic” and not wear a mask. But guess what? These kids are vulnerable enough! I just feel very strongly about this and if people think I’m boring because I don’t share much detail about my kids…so be it.
Being a fiercely private person myself, I appreciate animinity, respect and dignity for myself and others.
Blessings ~