The death of Jett Travolta saddened me deeply. I am very sad for his parents and sister, who lost a beloved family member and who must now bear their grief under a very bright spotlight in the public eye. I am also very sad to see that now -STILL- there is endless speculation about whether Jett was Autistic or not.
My short answer to this question is What does it matter anymore -if it mattered at all? He's dead.
But the long answer -if indeed there is an answer- is that it was ...IS nobody's business except Jett's and his immediate family. It is private information. But somehow, people seem to think that because celebrities are famous, they have to open every facet of their lives (and their children's lives) to the world. This is not the case. All people, even celebrities, have a right to privacy.
Another thing that burns me: Beneath all the speculation there was the subtle subtext -unspoken- that the Travoltas somehow never acknowledged or admitted to their son's "autism" because of their Scientology religion. There is a subtle judgment in the media pertaining to this, the unsaid words: "unacknowledged", "untreated", "ignored", "neglected". Again, their religion is their business, and no-one has a right to judge them for it.
Now some people may say that if Jett were Autistic, the Travolta's -being public figures- had some kind of responsibility to share that with the world to raise money and awareness and to make Jett a poster-child for Autism (or Epilepsy), kind of like Jenny McCarthy did with her son, Evan.
Some public figures do choose to go public with illness and disabilities. Lance Armstrong has done a lot for cancer awareness and Michael J. Fox has raised a huge amount of awareness for Parkinson's disease. But gong public was their choice as informed adults. And although it definitely helps a cause to have a celebrity spokesperson, no celebrity who has an illness or a disability owes that cause anything at all.
Especially if they are underage.
Jenny McCarthy chose to go public with her son's Autism -or Autism-that-used-to-be-but-is-allegedly-cured (and don't even get me started on that one!). I often wonder how Evan Asher -that is his name BTW, will feel about his mother's telling the world his diagnosis and plastering his face on book covers before he was old enough to object? I wonder how it will impact him when he comes of age to be known to the world as Jenny McCarthy's (formerly -OK let's not go there) Autistic Son? That's a pretty big magnifying glass under which to live your life.
Now I know there is a tinge of hypocrisy here. I blog about my own children and their diagnoses. However, I don't parade their pictures here. Heck! I don't even use their real names! I don't think talking about them to the few hundred people who read this blog is the same as pulling them out to stand in front of stadia full of people at Autism conferences, clearly overwhelmed and covering their ears against the noise. Not unless they WANTED me to (and why would they?).
And they don't
Now I know that Jenny McCarthy and Autism Speaks have raised a lot of awareness -I don't particularly like or agree with all of their messages or how they went about it. But they raised awareness.
How are they raising their children?
In my head, it all comes down to the concept some people seem to have that children are "owned" by their parents and do not exist as people in their own right until they are 18. Even worse, some people seem to think that children are some kind of communal property. It takes a village to raise a child, right? But no. That does not give the village full access. Sorry.
We do not own our children. Our children own themselves. We rent our children for a few years, and it is our responsibility as parents to ensure we damage the goods as little as possible. By the same token, we have no right to another person's child. They don't have to talk to us if we address them. They do not have to smile if we smile,. they do not have to tolerate us ruffling their hair, no matter how nice or affectionate we are. They are their own people and they owe us nothing.
I always thought that most people feel as I do. Until I almost came to blows in the obstetrician's office over circumcision. The doc was practically insisting I have a boy circumcised -to the point where I feared he might "forget" my objection and do it anyway. Whereas I took the position that I had no right to cut pieces off a body that did not belong to me. What if he grew up and wanted his foreskin back? If I left him intact, he could make the decision himself -painful as it may be- later in life. We argued -heatedly- for about 10 minutes. Finally I said "I am happy to teach him to wash, but I will not cut any pieces off him without his permission". As he was still in utero, permission could not be granted. So we left him intact.
I was kind of shocked to discover that some (many) people don't share my views on this. Some people seem to think of children -especially young ones- less as individuals and more as property. I recently fielded a question from a lady concerned that her preschooler hated people touching her. How could she change this? Well, my daughter had the same issue, but I didn't think of it as a problem. She owns her own personal space, and if she doesn't like strangers putting their hands on her, who am I to tell her she must tolerate it? I think it is just fine for a person -especially a girl- to be protective of her personal space. I am not going to teach her that it is OK to allow strangers to maul her. I made this point and the other mom was kind of taken aback "I never looked at it that way".
Why not?
Personal space is a right.
Privacy is a right.
I don't know the full story of Jett Travolta and it is none of my business, but I do think the Travoltas were right to keep his business private and to keep him shielded from the press. I do wonder maybe if he had had the chance to grow to adulthood, would he have made the decision to go public with his Autism (if any) and seizures?
We'll never know now. He won't get that chance. It is very sad.
I agree that children should not be made into poster children for disability just because their parents are celebrities. In fact, I don't think they should be made into poster children at all.
I am curious now about Scientology's stance regrding brain disorders. They aren't being exactly, um, "clear" on the subject. But if it's true that they think it is a sign of a "degraded" condition, it's still no worse than McCarthy thinking her son is an "indigo child" and that quackery has "cured" him of autism.
Posted by: yanub | January 07, 2009 at 12:58 AM
That the general public seem to think celebrities "owe" us information about their private lives is an issue that has bothered me for years, so I couldn't agree with you more than I do on this post.
The Travoltas, despite their celebrity status, have the same right to privacy that the rest of us enjoy. They owe us no disclosures of their son's illness(es), no justifications for their religious beliefs, and certainly no explanations for the decisions they made regarding their son's care!
It's tragic, to me, that in an insatiable desire to be "in the know," the public is interfering with the right of these parents to mourn the greatest loss they'll ever know. Now that is sad!
Posted by: Carleen Ibrahim | January 07, 2009 at 01:07 AM
I completely agree that the Travoltas have the right to believe or to not believe in any diagnosis about Autism, much the same as I believe Jenny McCarthy has the right to talk about how alternative approaches have helped her son. Do I necessarily agree with either case? Well, no, not entirely.
Having recently begun reading some blogs written by adults with Autism and their amazing ability to explain their views in writing, I can't help but have my feelings grow about the Autistic minds not being 'wrong' or 'sick' or 'bad', but merely a difference.
Perhaps the Travoltas accepted any differences their son, Jett, had and took him as he came, so to speak. Perhaps Jenny McCarthy did find some real help for her son, Evan, in complementary medicine, removing some of the greater challenges with her son's behaviour... though it was my understanding that Evan was thought less to be 'cured' than to have 'cured' the more difficult behavious, allowing him to have a more 'normal life' with things like the ability to interact with his peers.
I may be way off, I have to admit I've not read a lot about either family, nor do I intend to.
My views have come about with my own experiences with my son, who began having behavioural problems and attentional difficulties in school. It seemed clear to me that there was more than one thing involved for him and I felt those issues should be addressed before considering medication. I spent a lot of time discovering how things like artificial food additives, toxic cleaning products and differnt types of teachers affected my son. And what I found helped him enough to feel better, behave more 'appropriately' and so on. Is he still and ADHD kind of kid? Sure, I see many of those qualities in him and many of them in many other people I know. But he turns 17 next week, is in grade 11 of a regular high school program (though that's not been without its difficulties) and just held his first 'real' job - a seasonal one in a clothing store.
Also, my best friend (an adult, lol) is someone who well fits the criteria for someone with Asperger Syndrome. When I was getting to know him (and was in school studying such things) I talked to him a great deal about my thoughts that persons who might be identified as being on the Autistic Spectrum might well just be a part of life, a difference like any other, even the evolution of the human mind in progress. He came to see how many things in his life made 'sense' with the descriptions of Asperger, and I made it clear it wasn't a suggestion of diagnosis (suggesting 'wrongness') but a way to describe variations.
When I was in school, I took a course on Applied Behavioural Analysis (ABA). I couldn't help but wonder about the behaviours it was meant to reduce, such as rocking or hand 'flapping'. Unless the behaviour was harmful to the child (we were talking about children at the time) I wondered if it was more for the benefit of those around the child, to make them more comfortable, or??? It just didn't quite sit right with me... but I do believe it has its place, as do many things.
My points, convoluted as though they may be now (sorry) is that parents often must try and do what they feel best for their child as they are the ones that know him/her best. Do we segregate, label and medicate everyone who is different? Well, seems to me too often the people declaring what is different and 'wrong' display, themselves, symptoms of 'different' brains, unable to see a broader view of things, only their own, narrow beliefs, and unwilling to consider other possibilities.
Regardless of my rambling, I hope Jett had a happy life (and I gather he was well loved and cared for) and that Evan experiences great happiness in his life.
Posted by: Lisa Moon | January 07, 2009 at 05:01 PM
Why is the situation of the Travoltas and their son Jett different from that of Michael Phelps? Back in Aug 08, you urged the swimmer to come forward and admit he had EDS or Marfan Syndrome, or both. Why is it ok for the Travoltas to keep certain personal details private but not Phelps?
Posted by: beansprout67 | January 17, 2009 at 01:00 PM
Beansprout67,
The key difference is that Jett Travolta was a minor and any "outing" of his conditions should have been *his* choice to make, not his parents.
Micheal Phelps is an adult, and while I do wish he would make the choice to go public, I recognize that it is his choice. Here is a quote from my first piece on the subject.
"Now, Just because a person is a public figure and has a condition, it does not mean they have to be a spokesperson for that condition. It is not Micheal Phleps' job to be the spokesperson for Marfan or for anything else unless he chooses to do so. And I can't say I blame him for his choice not to do so..."
link to the full piece is here:
http://onesickmother.typepad.com/my_weblog/2008/08/missed-opportunities.html
My second piece on the subject was an analysis of Phelp's own words on the subject. HIS words from his bestselling book. He raised the subject himself and I claim the right question his wording.
And just to clarify: I didn't urge him to do anything: My exact words:
"Michael Phelps; I wish you could overcome your fear (of what?), stand up and be that role model. It would mean so much to so many people. You have no idea..."
Link:
http://onesickmother.typepad.com/my_weblog/2008/08/am-i-the-only-one-who-sees-it.html
Posted by: One Sick Mother | January 17, 2009 at 03:58 PM
I totally agree with you. You write very well. I hope today is a good one .
Posted by: Sue | January 19, 2009 at 08:47 AM