“It’s a fine balance.”

Filed Under (Activism, Celebrity Advocacy) by Estee on 30-09-2009

Recently, John Travolta admitted his recently deceased son Jett was autistic:

Travolta recounted in last week’s testimony how he tried to revive Jett, 16, who had fallen after a seizure in a family vacation home on Grand Bahama island.

The actor also publicly acknowledged — for what is believed to be the first time — that Jett had autism. News of the testimony sparked an ambivalent reaction from the autism community.

“I ran downstairs with my wife to help my son,” Travolta said Sept. 24, according to The Associated Press. In his testimony, he said he and his wife Kelly Preston were awakened by a nanny around 10:15 a.m. Jan. 2, 2009, the day of Jett’s death. Travolta said when he went downstairs, another caretaker was doing chest compressions and he began administering breathing help.

The actor testified that his son Jett was autistic and suffered seizures every five to 10 days. He said the seizures would last 45 seconds to a minute and Jett typically slept for 12 hours after each one. “He was autistic. He suffered from a seizure disorder,” Travolta told the jury when asked about his son’s condition.

Looking at pictures of Mr. Travolta, I feel for the family deeply. Perhaps because of my own recent strain of going through divorce and watching Adam go along with us, maybe it has sparked some deeply painful feelings for me. Thinking of Adam’s future, as we must do when we go through a divorce even more so than ever, and we have to consider all the possibilities of epilepsy as well.

Going through all of this and reading stories about the Travolta family (I could not imagine having to go through this in the public eye) I have compassion for them and all the families who are not in the public eye — ABA, RDI, I really don’t care.

I care about the rights of our children. I care about not denigrating them by saying they are “less than” or “a fate worse than cancer,” because political exaggerated political sound-bites (even if there is an snippet of truth about the struggle) does not benefit anyone or any cause. We all must deal with the daily care, the worries, the strain on the family as well as on autistic people as a community. And I still believe that society does not yet have a healthy view of disability or autism and that needs real work and evolution. But I have compassion. I have compassion for those parents who are in depression because of autism. I used to be a more vocal activist (that may not change but may change it’s form), but the school of hard knocks has made me realize that my way of coping with Adam and non acceptance (of me as well as of Adam), was with activism. As I’ve reflected over the past year, activism for many people (like me) is a way of coping with crisis that might otherwise have sent me into a place where I might not have been able to function. My nature was also a part of activism — I was not about to give up on a child that, despite some hardships, is still pure joy to me. Some activism is harsh and negative, on both sides of the political spectrum. It leaves us with less energy rather than more. In real life, when we have a strong opinion, we will be met with opponents. There is a healthy way to debate and an unhealthy one. There are rules of engagement as there are in war, when the going gets really tough. Using children for the sake of angling is not okay. I prefer to read the blogs and writings of parent and autism activists who can see both sides of the experience.

I say this with the recent report on the Travolta family because I want to support what they have gone through and know the kind of love they must have had for Jett and the pain of the loss of him, in the midst of what I imagine to be an oncoming political agenda to use the family in a most difficult time, rather than a simple compassion (not pity) for them. I just do not think the time is right.

Joy Behar and others on The View talked about why John Travolta did not come out earlier about his son’s autism. About a couple of years ago, I too came out rather harshly on Mr. Travolta in my older Joy of Autism blog for not “coming out.” But Joy, I think said it right. It’s up to the family. It would be my hope (and is obviously my decision as Adam’s mother) that more parents will understand that to advocate for inclusion and acceptance means we have to “come out.” But Joy is also right by noting that the labeling aspect can limit our children to meaningless sound-bites, where popular representations and culture whittle down our children’s individuality and abilities as well as real challenges.

As far as Adam and I are concerned, we walk the fine line everyday. As his mother, it is my job and choice to advocate for him to attend any program that I believe he would enjoy, excel, or where he has a right to be with his community and to learn. He is different and it is not appropriate for people to put the onus on Adam to “be like” other children. Rather, the onus is on us to quiet our expectations, and live with everything Adam can do and offer and to pick up quietly and patiently on what he can do in order to nurture him.

So “its a fine balance,” as Joy said, between revealing and not revealing. But I’ve laid my bets on revealing for the sake of a better, more accepting world. And as I learn about autism acceptance more everyday, I also am beginning to learn how to accept myself, my evolution as an autism mom, a person with strengths and limitations, and an autism activist. More on that later.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.