Friday, January 24, 2014

The Importance of Privacy

It is very disturbing to those of us with special needs children when uneducated individuals decide what should be and should not be made public about our children. Case in point: The columnist for the Boston Globe, Jeff Jacoby's 16-year-old son Caleb went missing last week. Not only did his school in Boston, and the Boston community, turnout to help look for him, but there was alot of social media attention and a twitter storm to keep people looking for the 16-year-old. (He was later found in Times Square in NYC.) We actually saw this online advocacy when Avonte went missing in New York as well. (Sadly Avonte was recently found deceased.) Today there is a blog in The Forward ( a Jewish-themed newspaper) that basically says for the good of the Jewish community the Jacoby's should divulge what the problem was that caused their son to run away.You can read it HERE if you wish. This is what I wrote:

What selfrighteous poppycock. As a special needs advocate let me tell you, the last thing the family and especially Caleb, needs right now is the nonsensical crap in this article.It is not your business why this child ran away.There are some privacy lines that do NOT and should NOT get crossed by the public. One of them is issues surrounding juveniles.
That the community did what it was supposed to do and help search for Caleb is a good thing. But it is NOT the community's business why he ran away or what the issue happens to be.Nor is it the Jacoby family's responsibility to be the poster-family for any issues associated with this event simply because the father is a well known author. When Caleb grows up and is an adult, he and he alone will make the decision about disclosing the issues in this event. Until that time mind your own business. 


What was most disturbing to me about the article is the cavalier attitude taken towards Caleb's privacy. The author isn't interested in what really happened to Caleb. If she was, she would know that mental health, sexual orientation and even abuse in the household, are issues that are not the purview of society as a whole. Personal issues need to be dealt with on a quiet level so that the child in question can work through the causation that led to his running away. But after reading the article it plainly seems what this "author" actually cares about is scoring some kind of points against a politically conservative author, hoping to find juicy gossip to discredit his political views.

Privacy is a huge issue, the elephant in the room so to speak, when dealing with special needs children. There is a modicum of respect that is needed when it comes to mental health and developmental issues that seems to be absent in today's society. If someone can actually write about the "good of the community" as opposed to the "good of the child" (which was done in the article above) you can rest assured they are missing the quintessential element in the equation- the child his or herself. There seems to be that  "respectful wall" that is missing when talking about someone else's child, especially the child of a celebrity. At one point children were off limits for stalking and photography by the paparazzi. It is sad that that reality no longer applies.

In today's media frenzied world there is a no-holds-bar attitude toward those in the public sphere. If a celebrity, as Toni Braxton, John Travolta or Holly Robinson Peete did, wish to go public with their children's autism then that is their choice. But it is also the choice of a family to not go public with information about their children, and you do NOT have a right to know about any mental health or familial issues simply because there is a famous person in a particular family.  Ultimately a child of famous or nonfamous parents is a child, and they are entitled to enjoy the benefits of anonymity and deal with their realities in the way that is best for them, not how society decides it should be done.

Privacy in fact is why when writing this blog I use a pen-name, and acronyms for the boys. Now that they are adults and can do as they please when it comes to their autism they can tell whom they please and explain it as they see fit. But that is THEIR right to make that choice. It is not up to me to "tell" who they are, mostly because their autism is not about me or the autism community. It is, and always was, only about them. By the way I did ask them if it was OK to write this blog as long as I kept it anonymous as best I could. They told me to go ahead. Also note, I don't necessarily write everything that has happened in their lives or to them. Some things are too private, even for a pseudonymous blog.

Privacy and respect go hand in hand. Choice is a human right. Choice to tell the world about yourself is the right of every adult. No one has the right to make that choice for anyone else, including parents making that choice for their children. Strangers most definitely do NOT have the right to make that choice for another person's child or for someone else's family. I can't decide whether the author of The Forward article is simply ill informed about the legal rights of children, self-righteous about how communities work or such a political nincompoop that she can't see the really important issues in life anymore.



Elise