There is only one crow cawing with the volume of a sharp car horn outside my window. Every couple minutes, I hear couple of melodic beeps and the hum of motorcycles, cabs and busses bouncing along the gravel. An electronic tune echoes from the elevator next to my hotel room about twice an hour. This is Mumbai, “the city that never sleeps” of incredible India. And this is the quietest I’ve heard it in the last nine hours.

http://katiecarver.wordpress.com/2013/07/01/mumbai-by-moonlight/

My journey here would have been as smooth as a mango lassi if my body did not require sleep or movement. It involved a five hour flight from SFO between two engineers on their way to the Super Bowl, a one-hour layover in New Jersey, and a 14 ½ hour flight over the Atlantic, Europe and a portion of Asia next to two kind Indian women. I was then sped into this suburb in a little grey car by a man who introduced himself saying, “My name is easy. I’m Anthony.” During our journey through places in which “Slumdog Millionaire” was filmed, he explained that Mumbai is second most expensive place to live in the world (after London). I saw a few of the 20 million residents, none of whom were more than brazed by our car weaving between them.

I can’t tell you the number of times I’ve been called either (a.) crazy or (b.) a “Brave Heart” for daring to travel alone through this country. My heart is still naïve enough to love exploring new places. I’ve had too many colorful, exciting journeys outside the US to think of travel in any other way.

I am here with three goals in mind: to better understand the way of life in Mumbai and Kolkata, to see how patients and volunteers operate within the Mother Teresa Houses, and to share ideas with researchers and clinicians around the world at the first annual International Children’s Palliative Care Network. I brought 15 lbs of clothes, 5 lbs of books and 5 lbs of protein bars to help me test the preconceived ideas of my Californian mind.

The word “pacifism” is certainly not the same as “passivism,” though I used to associate the two. The word “pacifist” stems from the Latin root pac, meaning “peace” and fic, meaning “making.” The Latin root of the word “passive” is passivus which means “capable of feeling or suffering.”

I am currently wading through a thick sea of memos (notes that I wrote during and after conducting focus groups). I’m simultaneously coding and re-coding the data in order to piece together themes that are supposed to “emerge” from it. I spent almost a solid 96 hours last weekend pushing my way through these transcripts and notes, splashing around and drowning in the words of my participants. My participants include family members of parents and other primary caregivers of pediatric palliative care patients (kids with life-limiting illnesses). There are a few things that I just can’t keep to myself. It would be socially unproductive.

The topic of my research is “Quality of life” or “wellbeing.” What makes one’s life one of high quality? Anyone who does not believe in the immediate applicability of health research only need listen to one of my brave research participants for five minutes (I’d recommend the same regimen for people who think they’re “busy” with things of importance… but I’m digressing).

Their stories highlight the importance of separating pacifism from passivism. The focus groups I conducted contained only parents who care for children with debilitating illnesses, most of which change the way the children look and act, altering the way society perceives them. Many of the kids are severely developmentally delayed, but not unaware (yes, a double negative; I’m sorry!) of what is going on around them. The parents’ words really speak for themselves, but for the purpose of keeping them de-identified I’ve changed all but the essence…

In one of my first groups, a mother spoke about the frustration of communicating with people who are not used to being around children with disabilities:

Mother 1: Some people stare at my kid like he’s from a different planet. It’s insulting. I didn’t used to have a kid with disabilities and I’ve learned so much about other people though this process. Most of them have no idea how to behave when they see people like my son. They are uncomfortable and squeamish.
Mother 2: Society only knows how to stare. They just stare and get progressively more uncomfortable. They don’t like seeing how I feed him in restaurants, but I do it anyway because they have no right to turn us away. I’m not going to leave. We’re going to stay here and eat dinner. If you don’t like it, you can leave.

Does this sound familiar, my fellow observers of MLK Day (two weeks late)? Even some doctors don’t seem to get it:
Father 1: I take my daughter to the doctor sometimes and the nurses don’t acknowledge her as a person. They stick things into her mouth and body. They move her clothes out of the way and look down her. I want to shout, “Hey! Hey! Warn her before you do that!” She doesn’t understand everything, but she knows where she’s at and can sense when things are going to happen if she is warned.

I used to believe that you couldn’t be prejudiced without opening your mouth. I really trusted the quote, “Sometimes it’s not what you say; it’s what you don’t say that matters.” But that is not true. Communicating with everyone, even those you don’t feel comfortable communicating with (yet), is key. Do I know how to communicate with every child that I conduct research about? No, of course not. However, I am learning very quickly that a little smile and a positive, nonjudgmental attention is a fairly universal language of peace.

One last chopped quote: “I have a dream that my four little children will one day live in a nation where they will …be judged …by the content of their character.” – Martin Luther King, Jr.

Images from: http://www.washingtonpost.com/politics/8-surprising-facts-about-mlk/2013/01/16/c37ec6ee-6005-11e2-9940-6fc488f3fecd_gallery.html

http://www.abhmuseum.org/2012/10/the-five-pillars-of-jim-crow/

Almost one year ago, 20 children and six adult staff members were shot at Sandy Hook Elementary School, leaving the remaining 436 enrolled students to have their childhood characterized by that event to the rest of the world for the rest of their lives.

Exactly 12 days before that tragedy (in order to prove that my PhD dissertation was not written in vain), I had given one of the final lectures to my “Health Psychology” classes about Death and Dying, focusing on the topic of children’s understanding of death.

After the Sandy Hook shooting, many of my students (and colleagues) changed their personas. They came into my office hours as concerned parents, siblings and grandparents. They were worried and wanted to know how to talk about this event with their children.

The first thing I always reply with is, “I am not a clinician. I have been trained in health psychology research methods and nondirective play therapy, but I am not a doctor or counselor and cannot give professional advice.”

However, there is one type of training that I received for over a decade in the ’90s: Disney movies. I watched dozens of Disney movies over and over and witnessed the immortality of good characters (or their salvation by “true love’s kiss”), the strange causes of death of villains, and only about 9% of “bad guy” deaths being mourned by other characters (Cox, 2005).

It’s rare that I come across articles in my literature searches that would be interesting to anyone other than ivory-tower academics. However, I found one several years ago that appealed to even the “Tink128@juno.com” in me. The study was a content analysis (a study of texts) that examined scenes from 10 Disney movies (Cox, 2005). The research focused on the dying characters, the causes of death, how death was portrayed to the audience, how “dead” characters really were, and how the other characters reacted to the death. The authors found that Disney doesn’t always portray death as permanent (especially to “good guys” like “Sleeping Beauty,” “Snow White,” or the “Beast”). The deaths of the “bad guys” are not always emotionally acknowledged (who cries for Ursula? Did Mufasa or Ariel or Cinderella’s mothers have funerals?).

The article argues that “the films may serve as catalysts to introduce the concept of death into discussions between children, peers, and adults” (Cox, 2005).

“And why is this important, Tink128?” you might ask again. “Why should I interrupt my children’s warm, fuzzy associations of fairies, castles and talking deer with a discussion that might make them cry?”

Here’s why:

1. It probably won’t make them cry. Of the 141 children I interviewed over the course of a year at nine elementary schools in Auckland, New Zealand, only a handful of them got a little teary when I asked them what “death” meant (Gaab, 2013). Most of them thought it was a little funny (such as when I asked them, “After people die, do they need to use the toilet?”). The light tears came from the kids who had experienced the death of someone close to them within the last few weeks and those kids were also the ones who seemed to want to speak with me about death the most (and wanted answers I couldn’t give them).

2. Children are generally quite literal thinkers. If you don’t believe me, go tell a five-year-old that you are 92 years old (or if you are 92, tell them you’re 29). Unless their parents are those amazing age-guessers who work at theme parks, it is likely that they will believe you. Sarcasm and skepticism are not early-developing concepts. Likewise, if you tell a child that “Doggy went to sleep” or “Grandma went away on a long trip,” they may not want to go to sleep or take a vacation with you. Will they get buried in the garden if they sleep a little too long? Euphemisms do not protect children; they protect those who speak them from having to explain things.

3. Most adults soften the severity of death when they talk about it with children (Willis, 2002; Grollman, 1990; Ryerson, 1977). However, some Disney movies shove it in front of kids’ faces with scenes of lions being pushed off cliffs and women poisoning apples for their victims.

4. There is no time like the present. Unless your child recently experienced the death of someone close to them, they probably have mostly neutral feelings about life and death right now. As an adult, you know the facts (i.e. that death is permanent and causes a loss of feeling, functioning and worldly life as we know it, and that it is not usually purposeful — as those portrayed in about 70% of Disney movies). Would you rather have your child introduced to death by a stranger or another child after the next tragedy strikes?

Cox, M., Garrett, E., & Graham, J. A. (2005). Death in Disney films: Implications for children’s understanding of death. OMEGA–Journal of Death and Dying, 50(4), 267-280.

Gaab, E. M., Owens, G. R., & MacLeod, R. D. (2013). Caregivers’ Estimations of Their Children’s Perceptions of Death as a Biological Concept. Death Studies, (ahead-of-print), 1-11.

How many children grow up dreaming of working with patients classed by the shortened length of their lifespan? Not many. However, being exposed to palliative care patients changes many people’s attitudes. I have had the privilege of working with children and families in palliative care settings for almost a decade in caregiving and research positions.

The most valuable lessons I’ve learned have come from memories captured off the record. I began volunteering at George Mark Children’s House, the first children’s end-of-life care facility in the USA when I was a child myself. The children who stayed at the house were excited, engaged, and still figuring out their roles in the world like I was.

I vividly remember watching a Nickelback music video with a boy who was just a few months older than me. He asked me to sit next to him as he clicked, “play.” The song was, “How to save a life.” He didn’t say many words, but his expression while watching it said everything. At that moment, he was not scared. He was not wise, dignified or even insightful. He was a normal teenage kid like me, watching a YouTube clip. He was only himself, a boy living his life.

Isn’t it funny how “normal” children want to be treated “special” and “special” children want “normalcy?” Though healthcare providers have been saying it for years, this can now also be backed up with scientific evidence. The theme of “special treatment” emerged from some research I did as a part of my doctoral dissertation in New Zealand last year. Siblings and patients noticed that the patients were getting more attention. Though they often understood the need for it, it was not always seen as “fair” or desirable.
One conversations struck me particularly profoundly during the last four years of interviewing, recording, listening, reading, writing, re-reading, coding , analyzing and re-writing the words of family members. It was different from my other research, which stressed the importance of being open with children when communicating about death.

A mother who had lost her toddler son told me that she had involved her daughters in giving her ill son the medicine he needed. She felt that it was important for her children because it helped the ill child feel more normal. By having siblings care for the ill child, it gave them the opportunity to be closer to him and to see him and his life as more normal. Taking medicine was a big part of her boy’s short life, and the siblings were happy to be a part of it. Though doctors might have been stunned and terrified had they known that children were handling those drugs, it was worth it to the mother. She told me that she had trained her children very thoroughly and taught them about the dangers of the medications. She had stressed the importance of them for the sick child and the risk which those who administered the drugs were taking.

And how did the sisters feel about it? They were grateful. They told me that all they ever wanted was for others to stop staring at their brother and stop reminding them that he was going to die. They wanted to be as involved in his life as possible, not in thinking about his death.

Despite all the evidence supporting communicating about death openly with children, involving them in the care of their siblings might be equally or more important. Those working in the field of pediatric palliative care might do the most good by going back to “square one:” helping “normal” children feel special and “special” children achieve normalcy.