“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.
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer/Curator/Founder of The Autism Acceptance Project. Lecturer on autism & the media, and parenting. Graduate student Critical Disability Studies, York University. I like to write about our journey, musings, attitudes towards autism.
I am with you on all of this Estee. I sat at my son’s IEP (was fighting for more mainstreaming time with support as he is high functioning and needs that ‘real world’ experience, negotiating the real world…) and the educators were lamenting “We have three new autism classes in the district this year” and I said, “And wouldn’t it be great if the Gen Ed teachers were equipped to take the students who are higher functioning and able into their classes so the Special Ed departments wouldn’t be so stretched?”
They looked at me like I was nuts, or just a “naive parent who doesn’t know better.”
Also – I worked with John’s brother, Joey, on a film this past Spring. Joey has a production company called “Inclusion Films” whose purpose is to empower people with special needs to learn film making skills so they can get jobs in the entertainment industry.
The film set was like Utopia to me. Everyone was respectful, everyone did their jobs without complaining – we all had a great time. After a while we all forgot “oh, that is a special needs person” or “that is a ‘normal’ person” we were all simply people collaborating, together.
We parents with children on the Spectrum need to advocate wherever and however we are best suited. Sometimes, we put the mantel down for a bit… and know others will scoop it up and carry on. I can’t stop now, I feel like every child on the Spectrum is my child.
Thanks for writing, Estee.
Julie,
Thanks for writing here and on my Facebook page. That set sounds amazing. It’s lovely when we have these positive experiences that keep us fueled, it seems, for a lifetime.
This was a great post – I really needed to read something like this today in the times of the I am Autism video
I’m disgusted with the “Hub” and “ASAN” and even Autism Speaks at times. What disgusts me is the fact that Sullivan and these others don’t like the fact that Parent’s are “warriors” to use his word. http://leftbrainrightbrain.co.uk/?p=3226 He wasn’t talking about Jenny McCarthy and her group, but about all of us. Excuse me?? Who is the lobbyist, who fights the battles, who protects them from the “real world”, who, who… You can read my comment on the post.
Autism IMO is a DISABILITY, it’s not a difference, it’s not a “cutsie” club that ignores the realities of the spectrum. That doesn’t mean I don’t enjoy my children. That doesn’t mean we don’t go to swimming lessons or karate lessons, or library programs, or…… The Gr 3’s have signed up willingly to play on the little kid’s side where there’s a fence with my youngest. There is no fear of him, they like to play with him, and they will be taking turns. He’s a runner unfortunately, so he has to stay in the fenced in area for now.
Activism has it’s place. But the Hub and ASAN want to ignore the fact that the more severe end of the spectrum exists – “just give them more services”. “Those autistics that harm others are not autistic”, Ari’s latest news release says they shouldn’t have to use social niceties… http://autismgadfly.blogspot.com/2009/09/ari-neeman-gives-input-on-autistics-in.html I’m sorry, but society has rules, and even Autistics have to learn to live with them. And, contrary what he may claim…. they can learn appopriate behaviour/social skills. They ignore the negatives and those that are diffent from them as well. They do as much harm IMO as Autism Speaks does but focusing on the negative. But I do appreciate that atleast someone does.
I also don’t pretend to understand other people’s families, their motivations, their issues…. IMO they are entitled to feel what they feel and do what they feel is correct for them and theirs.
You used the word “compassion”. During the AS spat I used it too… Compassion is simply realizing that your world is not someone elses. It means to offer a hand up, not a slap at. It’s something I’ve seen little in the Hub, ASAN land of late… Autism Speaks… well, they are, what they are.
Very well written, and I fully agree. What people do in the private sphere is their own business and, in almost all cases, whether or not we agree with the approach people take, they are probably doing their best and deserve some respect for that. The public sphere is another matter. If something is being said publicly that is likely to affect my son’s quality of life, supporting or countering that statement is a part of my responsibilities as a parent. How public we are our advocacy is, as you say, a fine balance that can change over time.
Well said, Estee. As always!
I haven’t kept up with the Travolta’s story. I’ve never felt it was particularly appropriate to dig into the personal lives of celebrities.
But, I definitely agree the choice is up to the family. For us, the choice is also to be “out,” though I admit I’ve never thought of it that way. We’re honest. If people have expectations that are unrealistic, we briefly tell them why they’re not realistic and leave it at that. It’s our choice to be open and honest.
Other families want more privacy, and they should be entitled to that. Other people want acceptance, without any need for labels. That’s okay, too.
In the case of the Travolta family, they face a situation most of us don’t. They’re going to have people in their personal matters whether they cooperate or not. I imagine if I were in that situation I would be more protective of my family and any labels that might be attached to them, too.
Sometimes we need to remind ourselves that by advocating for respect we have to give respect in return. Everyone is different, which also means they’re going to make the same choices. We deny that if we demand others to make the same choices we would make.
Julie,
This off-topic, and I apologize, but I wanted to address this comment:
“I sat at my son’s IEP (was fighting for more mainstreaming time with support as he is high functioning and needs that ‘real world’ experience, negotiating the real world…)”
I went through that last year. My son in question is not perceived as high-functioning (by which I mean he doesn’t speak or demonstrate his thoughts consistently), but I still wanted him to get more mainstream time. I suggested they invite a “regular” kid to visit Alex in his CD classroom, and they went with the idea. It became a treat for the other students to get to be the one who got to visit Alex. The whole thing was such a success that this year he’s getting more time in the mainstream classroom.
Perhaps meeting them half-way in a non-traditional way will get you more cooperation. It’s not likely that they’ll think of such a solution, but they might go with it if you propose an alternative.