Monday, September 28, 2015

Autism in the Movies: Thoughts on "Jack of the Red Hearts"

On September 24th, I had the opportunity to attend the opening night gala of the Golden Door Film Festival in Jersey City, New Jersey, which included a screening of the film Jack of the Red Hearts.

I hadn't known much about the movie beforehand, but several of the filmmakers were present at the event, including director Janet Grillo, writer Jennifer Deaton, and actors Famke Janssen (Kay), AnnaSophia Robb (Jack), and Taylor Richardson (Glory). 

[From left: Famke Janssen, AnnaSophia Robb, and Taylor Richardson in Jack of the Red Hearts.]
The movie centers around teenage runaway Jack (Robb), who cons her way into the home and life of a girl on the autism spectrum (Richardson) and her family in an effort to rescue and obtain custody of her own sister from foster care. When a young woman answers the family's advertisement (placed, strangely enough, via the use of a flyer with tearaway pieces of paper at the bottom) for a companion for Glory, Jack deceives the clearly-qualified woman into thinking the job's been filled, takes her résumé, and passes herself off as this person instead.

From this moment on, I knew exactly where the film was going and what was going to happen. I knew perhaps because this particular movie trope has been used before, especially in movies featuring disabled people. I knew because this was a movie made by someone who knows autism--albeit from the outside--and needed a way to make autism accessible to those who don't. And I knew that I have sympathized and identified with neurotypical (NT) characters in movies for years--largely due to few other options--but that somewhere, a decision was made that a typical audience couldn't be expected to sympathize with a little autistic girl, thus necessitating the addition of an NT protagonist.

It's no secret that I am a fairly sensitive person, and without a doubt, Jack of the Red Hearts struck a deep nerve. I'm not sure if "triggered" is the right word, but the film brought a great many memories rushing back and elicited an emotional response from me--but not necessarily in the good way. 

In actuality, as I sat there watching this film, I found myself fighting the urge to get up and leave the theater on several occasions. One occurred early on, when the mother of the autistic girl (Janssen) was holding and drinking from a coffee mug with the words "CURE AUTISM NOW" emblazoned on it in large letters. 

Another was witnessing the abusive--and there really is no other word for it but "abusive"--behavior of Jack toward Glory. Tying Glory to a fence with a leash as though she were an animal, when not neglecting her altogether. Forcing herself into Glory's personal space and brusquely demanding, "What's wrong with you?" Despite the film's insistence that I do so, I felt no sympathy for Jack, and instead recoiled at the thought of anyone like her ever being remotely near a person on the spectrum. 

We're presented with the tragedy of Jack's life, and made to place her desperation on par with Glory's family's desperation, and that somehow they both needed each other, even if they didn't know it. But I am an adult on the autism spectrum, and before that, I was a child with autism--a little girl, not too unlike Glory. What I wanted more than anything was to have a friend, and had a Jack-like figure been part of my life and then left as abruptly as she came into it, it would have hurt me tremendously. Jack's life might have been screwed up and rife with anguish, but that did and does not give her the right to wreak havoc on someone else's--least of all, Glory, a vulnerable child who would become attached to her and view her as a friend.

There was a Q&A with the filmmakers after the movie ended, and I had hoped for some insight into the decisions made in the process of creating this movie. What I learned instead was that, of all the people standing on that stage, only one or two truly seemed to "get" autism. I managed to push aside my emotions in favor of steeled strength and raised my hand to ask a question, but unfortunately I was not called on. I did not expect the members of the cast to have an in-depth knowledge of autism, but to hear some of the crew speak as they did made me realize just how much work there is still to be done.

When making any movie about autism, or featuring a character that has autism--a character that, in this case, was not actually played by an autistic actress--it is vitally important to receive and listen to feedback from individuals on the spectrum. Had the creators of Jack of the Red Hearts done this, I can almost guarantee that the film's climactic scene would've been completely different, as what was set up to be a poignant moment was, for me, a degrading and uncomfortable exercise in cinematic absurdity. 

I wish I could say that this film moved me. I wish I could say that I am so thrilled that there is a movie about a girl with autism as a central figure, and that I wholeheartedly recommend it to any and all those whose lives are touched by autism. But I cannot separate the dramatized elements of this movie from reality, because I have lived the reality, and the film's flaws are too troubling to overlook. I have no doubt that the intentions of the film's director and writer were entirely good, but the overall execution could have been so much better.

To say I was disappointed by Jack of the Red Hearts is putting it mildly. Individuals on the autism spectrum deserve more than being portrayed as burdens on the people around us. Movies entertain, but they also inform, and autistic people 
are certainly compelling enough to be the voices of our own narrative, to be the ones informing the world about what autism is and what our lives are like. Hopefully one day filmmakers will realize this, and give us a chance to speak for ourselves on screen.

And when the time comes, I know people will sit up and listen.  

Monday, August 31, 2015

My Father, the Hero

When I was a little girl, my dad would take me to a Hostess bakery outlet in Medford. It seemed very far from our house--over and past long stretches of blue sky dotted with trees and telephone poles and signs whizzing by in a blur. Stepping inside, it was as if I'd arrived at another world, one full of bread smells and baked goods with ingredients I delighted in reading because I was the only 8-year-old who could pronounce them.

We walked together through the aisles of that magical place, and I beamed up at my father, who I thought was also magical, because he always knew how to get there.

He was my hero that way, you see.

I go back to Long Island at least a few times a month, to visit. The drive there and the return trip to New Jersey were familiar before I ever had a license, so accustomed was I to going to the Garden State as a child to see my grandparents, aunts, uncles, and various cousins. But one of the main things I've learned since I started driving is that the journey isn't always the same; on the road, anything can happen.

So it was that I found myself forced to take a detour on one of my most recent drives back to New Jersey. The exit I normally take off of Route 80 is comprised of two ramps--one that goes to the right, and one that goes to the left, which is where I go. On this particular day, however, the left ramp was closed, and I had no choice but to head down the road not (ever) taken. Familiarity quickly vanished as I reached a somewhat hazardous intersection in the heart of downtown Paterson. I knew there was only one option.

I called my father.

Dad grew up in Paterson, and though the landscape and cultural makeup of the city have undergone a significant shift since his years living there, some things are still the same. 

The streets.

More importantly, the map that my father has of them in his head.

It's said that some folks on the autism spectrum have the gift of a photographic memory. That they can recall the layout of a street, or even an entire city, after being there on only a few occasions. My father, the Aspie, has not lived in New Jersey for over forty years, not since moving out to Long Island after getting a teaching job--yet the street names and placements remain clear as day in his mind.

It was due to this that he was able to perfectly guide me through Paterson to where I needed to be to complete the drive home. He spoke carefully, repeating directions when necessary, never rushing or admonishing me through each turn. It was as though he was there in the car with me, steering gently, again taking me from one world to another. Not once did I get lost, and in the moments I felt most unsure, my father stayed calm.

It can't be easy watching your daughter take charge of her own life, but when you're a parent, that's exactly what you're preparing your child to do. You let go, and let them. Even when it scares you. But maybe that's my dad's gift: Not controlling the journey, or the destination, but doing the best he can to help me arrive there safe and sound.

He is my hero that way. 

He always will be. 

Wednesday, April 1, 2015

Why I Don't Like April Fool's Day

It’s that (un)magical time of year again, where an entire day is dedicated to making fools out of people. Or, if you were me in seventh grade, that was every day. 
I’ve always had a difficult time telling when people are joking. Granted, I have gotten much better at it over the years, but what I’ve come to realize is that there is a distinct difference between a joke and a prank. People can share a joke, can laugh together, be part of it together. But a prank is decidedly far more one-sided: It’s Person A perpetrating a ruse against a completely-unknowing Person B. 
I have no doubt that there exist pranks that are harmless, or “softball” pranks, as I call them. From my experience, however, most pranks are mean-spirited, if not outright malicious. And that is why, even all these years later, I still flinch when I (inadvertently) click on a hoax headline and the website it takes me to says “April Fool’s!”. I know that I’m not the specific target of the prank—I know, in my mind, that it wasn’t an attempt by the website creator to purposely fool me, Amy Gravino, a person said creator has never even met.
But when you have been the target of a prank, when you have been humiliated, singled out, and aimed at because people know you are gullible, it’s hard to forget what that feels like, in your heart. When I clicked that website, I could still hear the laughter at my expense, laughter from my classmates who moments earlier I had thought actually liked me, but who were now laughing as I stood there alone, cheeks burning with embarrassment.
So I flinch. I pause, for the most fleeting of moments, and have to remind myself that it’s okay. Even though that laughter is faint now, it never fully goes away. 
But I sure wish April Fool’s Day would.

Thursday, February 5, 2015

Russian To Conclusions: The Problem with Diagnosing Vladimir Putin with Asperger's Syndrome

This morning, I received a message on Facebook from a friend: "Did you see this?" along with a link to a news story from USA Today. It stated that a study conducted by a Pentagon think tank in 2008 concluded that Russian president Vladimir Putin has Asperger's Syndrome.

Now, after reading the article, as well as numerous posts and comments online in response to it, all I can think is:

The president of Russia has Asperger's Syndrome? You're Putin me on.

There are a number of problems with diagnosing (however roundabout-ly) any world leader with Asperger's Syndrome, never mind one who has as abysmal a human rights track record and history of sociopath-level cruelty and indifference to his own people as Vladimir Putin. 

Right out of the gate, the report on the study says the researchers can't prove that Putin has Asperger's because they were unable to perform a brain scan on him. So it makes you wonder what the aim of running such a story could be, if not to provide something definitive.

What this really is and was is a shot fired. Wars happen not only with guns and bullets, but with words and propaganda. So the shot that was fired in this instance is reminiscent of a Cold War tactic: Discrediting the enemy by saying that he has Asperger's Syndrome.

And therein lies the problem: Whether the researchers intended such or not, Asperger's Syndrome is being used an insult, a reason why Vladimir Putin makes the terrible decisions that he does, and why he should be viewed as an ineffective leader. The equation then turns to this:

Vladimir Putin is evil. 
Vladimir Putin has Asperger's Syndrome.
Asperger's Syndrome is evil

It may seem like a far leap to those of us who live in and understand the world of autism and Asperger's Syndrome, but it is not difficult to lead those who are unfamiliar with Asperger's down that path. It is a path already begun with Adam Lanza and the Newtown killings in 2012, and carved out further with every subsequent mass shooting where the perpetrator is immediately described as having Asperger's Syndrome--regardless of whether it is true.

With every unfounded assertion, every assumption and negative media portrayal comes a mountain of discrimination and fear from under which we must repeatedly climb. And when you start to feel as though no one cares if you get out, the weight of that mountain eventually becomes unbearable.

Individuals with Asperger's Syndrome are artists. Writers. Mathematicians. Engineers. We view life through a different lens, and if properly supported and nurtured, can use that vantage to better ourselves, our communities, and the world at large. But if we are continually associated with people like Vladimir Putin--associated with psychopaths, with those who are to be feared, with evil--those opportunities will never come. 

Let us hope that media outlets will consider taking a more responsible tack in reporting stories such as these from now on, because it is not just the United States' relations with Russia or public opinion that is at stake.

The lives and futures of individuals with Asperger's Syndrome are at stake. And we deserve better.