Tuesday, December 7, 2010

On Grief and the Death of Elizabeth Edwards

As I'm sure most folks have heard by now, Elizabeth Edwards--ex-wife of former presidential candidate John Edwards--has died, from terminal cancer. She had only just decided to stop receiving treatment--on the advice of her doctors, who informed her that the cancer had spread to her bones. Not a day later, she was gone.

I can only imagine the sadness her loved ones must be feeling during this time. Everything that she went through, from the cancer diagnosis to her husband's infidelity and fathering an illegitimate child, no doubt took a great toll on her. From every story I have read, it seems she carried herself with dignity, grace, and comportment, despite having to experience all of this under the intense scrutiny of the public eye.

And now, this terrible disease, which went into remission once before, returned to ravage her body further. If nothing else, I am sure her family feels a sense of relief that she has been released from her pain.

But this does not change the fact that she is gone, and that her passing comes at one of the most difficult times of the year: the holidays.

I have some experience in this area, as it were.

In 2001, my one grandpa died four days before Christmas. I was home from my freshman year of college on winter break. My grandma called to tell me, and I felt my heart sink to my knees and my hands grow cold around the receiver as I said goodbye to her. What I did next was one of the hardest things I've ever had to do. I was the only one home, and I called my mother at school, where she was teaching. The secretary in the main office answered and informed me that my mom was in class.

"It's an emergency," I said softly, and told her the news. She did not hesitate to page my mom after that. The air seemed to still when she came on the phone a few minutes later, and then I heard myself tell my mom that her father had died.

My other grandpa died on Thanksgiving in 2003. My parents and I were standing in my aunt's house when my father got a call on his cell phone. He was perfectly calm as he told us, and we left immediately, heading up to his cousin Karim's house, where his side of the family would be.

Nobody spoke as we waited for my great-aunt Lollie and my Aunt Nancy to get there. I remember them walking into the kitchen--my great-aunt in a white sweatshirt with the word "Florida" emblazoned on the front, her straw-like hair freshly dyed and hairsprayed to unprecedented stiffness on top of her head, and the long bags under her eyes, set with wrinkles and stained with dried tears.

She hardly said a word--unheard of, for her--and was followed in by my Aunt Nancy. Her voice was choked as she greeted each of us, the gold Syrian bracelets on her wrist jingling as her hands shook. "He looked like he was just taking a nap!" she sobbed. I cast my eyes to the ground, ignoring the now-fetid smell of the turkey still cooking in the oven.

Last year, my great-uncle Sammy died on Christmas Eve. And though the loss was not as powerful as the previous two, I saw my other cousins swept in a tide of their own sorrow, and I grieved with them for their "giddo" (Arabic word for "grandpa").

I remember the wake. The beautiful stained glass in St. Ann's, a Byzantine Catholic church, and the colorful icons painted across the domed ceiling. I felt the blue carpet beneath my feet, and the cold from the doors opening and closing.

And Kathy, sister of my dad's previously mentioned cousin, Karim. She had been taking care of my great-uncle (her father) for the previous several months. I could see relief in her face, mixed in with the overwhelming grief. I wanted to say something to her, offer a word of comfort, for what little it might have meant. So I took her hand and said:

"I'm sorry. I know right now you're feeling like Christmas will never be the same again. The truth is, it does change your holiday forever--at first, you mourn and grieve, as is natural. But as time goes on, you start to celebrate--to incorporate the things that person stood for into your celebration. Instead of dwelling on what their death took away from the holiday, you remember all that they gave to it, all of the good that came from their presence and how much it meant. How part of them is still there, even after death, and always will be, just as long as you remember."

As I stood in the post office today, attempting to stave off the stress of a long line and only one clerk behind the desk, I thought of this. Of Christmases gone by, Christmases spent with my grandparents. I can still smell my grandmother's cooking in the kitchen, still see their tree festooned with blue-and-yellow ribbons, white twinkling lights, and numerous ornaments.

Christmas is not the same now, not as it was then, nor will it ever be--but it's inside of me. I'll be damned if I can remember a single present I ever got from my grandparents, but that love is something I will never forget. It is my great hope that in time, Kathy and my cousins and the family of Elizabeth Edwards will find their grief lessened, and that good memories will take its place, trading the cold in for the warmth.

Friday, December 3, 2010

In the Event of An Emergency

I recently became aware of a news story out of Towson University, in Maryland. A student there was interning (student teaching) at Thomas Johnson Elementary School in Baltimore City, and she reported witnessing teachers verbally and physically abusing children with autism. The principal of the school immediately attempted to discredit her claims by saying that this student has Asperger's Syndrome and was "mentally deficient and probably lying," and her advisors at Towson questioned her story. The final nail in the coffin was the Dean of Education telling her to stop talking about the incident altogether (Click here to read the full story).

As a student in a Masters degree program in Applied Behavior Analysis, one of my requirements in my first year was to do classroom "observations" at partner schools here in New Jersey.

It was a crisp Fall morning in 2007. I drove down the Garden State Parkway somewhat nervously, having just gotten my license the month before. After signing in at the main office, I made my way through the beige-painted hallway, the walls periodically dotted with the students' brightly-colored artwork.

I sat in a blue chair, the hard plastic pressed against my thighs as I surveyed the self-contained classroom before me. Small wooden cubbies containing coats, knapsacks, and carefully packed lunch boxes lined the wall, and various toys and other objects lay scattered across the carpeted floor. Several pieces of chalk sat idly in a tray beneath the blackboard, and I resisted the urge to pick one up and smell it.

The children made noise, as children so often do, sometimes so shrill and loud that I had to hold my ears. I've never felt particularly at ease around children, but knowing that they were on the spectrum--knowing that I was once them, and in some ways, still am--gave me a small measure of comfort.

Yes, in case you didn't know: I have Asperger's Syndrome.

When I was applying for graduate school, the decision of disclosing the diagnosis was one I did not hesitate on. I stated it outright, both in my written application and during the in-person interview. I believed that it would be an asset, to have a firsthand perspective that I could add to class discussions and use to help my fellow classmates better understand the students with whom they work on a daily basis.

It took a great many years for me to see having Asperger's Syndrome in such a light. To view it as a positive, rather than a negative. And here I was, walking into this completely new environment, unwilling to disguise a diagnosis that had been such an integral part of my being accepted into that environment in the first place.

I was fortunate, yes, where so many others are not. When I imagine being treated as the young woman in this story was treated--her credibility tarnished, her good name dragged through the muck--I am pained beyond the description of words. I am stirred, furious, into an ardor of righteousness, because I know that if I had seen what she had seen, I also would have been moved to report it.

So why should what she says, or what I say, or what anyone else with Asperger's Syndrome say, be so harshly discredited? Indeed, the most laughable part of this entire debacle is the school's principal saying that because of this young woman's condition, she was "probably lying." There is a sad irony to an authority figure whose charges include students on the autism spectrum completely and utterly failing to understand one of the most frequent hallmarks of ASDs, which is the near inability to lie.

People on the autism spectrum are said to be extremely honest, sometimes even brutally so, and that lying is a social event in which they will not and/or cannot engage. For me, it was simply that I never saw any point in lying. I may not have always been so tactful when I was younger, but it was never because I intended to hurt anyone or meant any harm. I have learned how to frame my honesty in a proper context, but never have I diluted it.

I do not believe this young woman would do so, either, and in fact would be more moved to seek justice for the terrible treatment visited upon these students by the very people who are meant to be taking care of them. Because how close did she perhaps come to being one of them? How close did I come? And just as I had no one to speak for me, these children also have no one to speak for them.

Except her.

The school principal and the members of this young woman's department at Towson, by their actions, sought to silence her voice--and, in turn, silence the voices of these children. There can be no defending them, no rationalizing or logic-ing their deeds away.

How can we expect these children to value themselves if the adults around them are so clearly demonstrating that they do not value them? I spent too many years believing I was not a person worth loving, or having as a friend, as a student, a daughter. Too many years believing I was not a person at all, and that vicious trap is what awaits these kids and so many others if things do not begin to change.

This young woman is one of the voices of change, one that I hope will be able to speak up loudly and proudly, rising from the ashes of the two schools' disgraceful actions. I hope she does go on to become a special education teacher and give students with ASDs and other developmental disabilities the support and encouragement they need--the very same support the education department at Towson so astoundingly failed to show her during their gross mishandling of this entire matter.

For the hope of a better future for all: Stop the abuse, stop the cover-up, stop the deliberate spread of misinformation. Let the truth ring out.