Tuesday, March 29, 2011

Autism Speaks "Light It Up Blue" Blog Post

I was recently asked to write a blog post for Autism Speaks' specially created "Light It Up Blue" blog dedicated to letters addressed to the President to get the White House to participate in this campaign on April 2nd, World Autism Awareness Day.

This post was originally published on the Light It Up Blue blog here.


"Dear Mr. President and First Lady Michelle Obama,

Every year, the same day comes. Crunch! go the crisp leaves under your feet, twirling around in the cool, late autumn breeze, before coming to land on the earth below. Children race from house to house, their sneaker-covered feet thumping across the pavement, waiting for the door to open, to see the face of whoever lives there, voices ringing out in a choir of “Trick or treat!” when the moment finally arrives.

I am, of course, talking about Halloween: the time of ghosts, goblins, bobbing apples, and mini-sized candies filling up plastic buckets across the nation. And with the spirit of frivolity and mischievous fun also comes words of caution, issued forth by parents far and wide. From elementary school onward, every kid knew the most important Halloween rule of all: Never go to a house that doesn’t have any lights on.

A light is a symbol of welcome. Come, the light says. This is a safe place. For centuries, a lantern hanging outside of a building meant hospitality, and a darkened establishment meant emptiness—a place to be avoided. Today, we still have lights on the front of our houses, and when we know company is coming, it is often custom to leave the light on.

For individuals with autism spectrum disorders, however, the houses we encounter—be they school, a disability service center, even the place we supposedly call home—are often dark. We have been outcast, shunned, bullied, pushed around by a system that itself sits in darkness. There is no welcome for us, Mr. President. Time and again, we look for the light on the front of the house, and it is nowhere to be found.

Too often, people on the autism spectrum spend their entire lives in these dark houses. We have met rejection even at the hands of our own families, whose inability to understand our diagnosis and who we are leads to prolonged emotional and social isolation—a painful reminder of how much we don’t fit in, even with those whose blood we share.

And yet, with our honesty, loyalty, and compassionate natures, the houses we build as adults stay lit. We grow up; we find our way in this world that is not built for people like us, persevering, and despite the pain we have felt and the heartaches we have suffered, we let others in, not wanting them to face the same dark houses in which we once lived.

It is for these reasons and so many others, Mr. President and First Lady Michelle, that I am asking you to light the White House blue on April 2nd this year, in honor of World Autism Awareness Day. Our voices have typically not been those that are heard in the arena of politics, but with a single action, this can change . By taking part in this campaign, you will bring hope and encouragement to countless individuals on the autism spectrum and their loved ones. Stand with the autism community, and let your commitment to our cause shine bright.

Let your house be one with the lights on."

- Amy Gravino
Self-Advocate, Writer, Asperger's Syndrome College Coach

Monday, March 21, 2011

An Exciting Announcement!

Hello, folks!

I am thrilled and honored to announce that I have been asked to speak at an event on April 6th at the United Nations in NYC! It's co-sponsored by Autism Speaks and the Permanent Mission of Bangladesh at the UN. I will be on a panel with three other speakers: Dr. Geri Dawson, the Chief Science Officer of Autism Speaks; Dr. Shekhar Saxena, the director of the Mental Health division of the World Health Organization; and Prof. Saima Hossain, the Chair of the Autism Advisory Committee on Autism in Bangladesh who is also the daughter of the prime minister.

The event will be attended by the Secretary General (who is giving opening remarks), as well as UN dignitaries and representatives from UN organizations (such as the WHO). The topic I have been asked to discuss is my perspective as a self-advocate and how international collaboration can help to deliver answers for the autism community.

This event is FREE and open to the public, so if you are in the New York area, feel free to come! Click the photo below to view the "Save the Date" flyer with all of the pertinent details (flyer is in PDF format).

Also, be sure to watch for my next blog post, which will be my thoughts on the landmark episode of the TV show Parenthood, in which the parents of a character with Asperger's Syndrome tell the child about his diagnosis.

Tuesday, March 1, 2011

Hypocrisy Rising: Why Children With Autism Don't Matter to Alec Baldwin

EDIT 3/2/11, 2:32 PM: To clarify, the purpose of the piece is actually not meant to have anything to do with Alec Baldwin, but to use the example as a lens through which to examine the systematic devaluing of people on the autism spectrum. That was truly my intention. I am aware that disability is a serious thing, as I do have Asperger's Syndrome and have struggled for most of my life just to survive, let alone thrive and experience happiness. I am not trying to make light of anything nor present this as a gossip column, as that is the last thing I would want to do. The first half of the piece is meant to draw people in and keep them reading to the second half, which is where my more salient points are. But, according to some, it seems I missed the mark here, and for that, I apologize.

In 1996, the world was a very different place. Mel Gibson--pre-Passion, pre-anti-Semitic, misogynistic drunken tirades--was still a bankable Hollywood movie star. Rene Russo had yet to disappear off the face of the planet, and it was at this time that these two starred together in a movie called Ransom.

The plot of Ransom is simple (spoilers ahead): The wealthy owner of an airline (Gibson) and his wife (Russo) have their son kidnapped from them and held for ransom by an extremely crooked cop (Gary Sinise). When things go awry with the attempted payoff, Gibson's character decides to turn the tables and offers the ransom money as a bounty on the kidnappers instead.

Recently, I managed to catch a glimpse of the film on TV, and after watching it, did what I often do after seeing a movie I haven't seen before: I went to IMDb (The Internet Movie Database) to read about it. One of my favorite sections to peruse is the Trivia page, so that's where I went, and it was there that I came across the following: "Ron Howard's first choice for the role of Jimmy Shaker was Alec Baldwin, who turned it down due to the sinister nature of the character as well as the film's theme of endangering a child."

On the surface, this seems totally innocuous. Good on Alec Baldwin, would be most people's reaction, for passing on a role that he didn't feel comfortable with, and for such a noble reason as the endangerment of a child. But just two years later, in 1998, Mr. Baldwin accepted a role in a movie called Mercury Rising, with Bruce Willis. The role Mr. Baldwin took on was that of the villain. In the movie, a child cracks a top secret government code, and the government decides to have him killed. Thus, the theme of the film Mercury Rising...is child endangerment.

Why the sudden turnaround? What possible difference could there be between the two movies as to warrant such a change of heart? Both involve violence, both put the welfare of a young child in danger. Both have villains who could be considered cold-blooded, two-faced, and very unpleasant. So where does the difference lie? Maybe the the devil wasn't in the plot, but in the details.

Maybe the difference was that the child in Ransom was a typically developing child, and the child in Mercury Rising...was a child with autism.

In Ransom, the villain has direct contact with the endangered child, and is actually the one who physically harms him at times, though this is never seen on-camera. In Mercury Rising (a very ironic title for a movie featuring a child with autism), the villain is the one pulling the strings, but not the one doing the leg work. Assassins trail the boy and seek to kill him, while the villain strolls about in his wine cellar while throwing soirées at his luxurious home.

Perhaps, then, it is much easier to accept the endangerment of a child when it is not going on right in front of you. When it is not your hands wielding the weapon that is meant to be used to exterminate the child's life. Or when the child is too "disabled" to know what is really going on. Why else would the endangerment of a neurotypical child disturb Mr. Baldwin, yet the endangerment of a child with autism leave him unfazed?

Of course, Alec Baldwin does not have the greatest track record with autism, either. In 2007, at the Golden Globes award show, Mr. Baldwin and several other stars of NBC television programs were seen wearing blue autism "puzzle piece" pins on their lapels.

Clockwise, from top: Alec Baldwin, Masi Oka, Steve Carell, and Tina Fey.

Mr. Baldwin took home an award that night, and spoke at a press conference afterward. Undoubtedly, the question he was most frequently asked was in regard to the puzzle piece pin. This was a great opportunity, both for Mr. Baldwin and the autism community, to really raise awareness, to make a bold statement about autism in front of an audience of millions. Instead, what Mr. Baldwin said was this:

"Uh, Bob Wright, uh, from NBC Universal, is a great supporter of, uh, autism research, and has, uh, works raising money for autism, and this is Bob's, uh, gave us this pin to wear. And as I was mentioning earlier, that when you work for NBC and if Bob Wright had asked us to wear a hubcap on our lapel, um...I'd be wearing a hubcap right now, because we are working for Bob right now."

(Full video here: http://www.youtube.com/watch?v=2tFrCdVMMY4M. The above part is at the beginning.)

In another interview, Mr. Baldwin actually stated that he "had no idea" what the pin stood for, and that his boss "made him wear it." Maybe his insensitivity to autism shouldn't come as a surprise, given that this is the same man who, in recent history, referred to his own daughter as a "thoughtless little pig." But his apathy and his ability to see the endangerment of a child with autism as different from that of a neurotypical child speaks to a greater issue, one that is endemic to society at large: the devaluing of the lives of people on the autism spectrum.

It starts out as something simple: Always being picked last for kickball. Sitting down to eat lunch and seeing everyone move to a different table. Slowly, these little incidents add up, until, without realizing it, your life doesn't belong to you anymore. One day, you wake up, and life has turned into The Price is Right. Everyone has a tag, and you look down at yours to find out what you're worth. The thickly drawn "0" with a dollar sign next to it is your answer.

I spent the first twenty years of my life believing that I was worth less. That I didn't matter as much, or even at all, because I was different, because I did not fit in. Because I have Asperger's Syndrome. I have seen others on the autism spectrum treated in similar ways. Their contributions in the workplace viewed as less. Their social standing viewed as less. Everything that makes up them as a person, as a whole, viewed as less.

One of the hardest moments in life is when the people who are meant to protect you fail in that capacity, for those same reasons. I remember the blind eyes that teachers turned towards the bullying and teasing that I experienced. Maybe they thought it would stop on its own. Maybe they thought it was just "kids being kids." Or maybe...I wasn't worth it. So many students in the halls; so many far savvier than I, far more able to "play the victim" and garner sympathy. Maybe I just didn't strike the right chord.

The weight of that dismissal carries on through the years. Even though now, as an adult, I do not believe I am worth less, I have seen how those who work closely with individuals on the autism spectrum speak of those whom they are treating. Not necessarily viewing them as less, but as different. These are not children; they are "children who have autism." Every achievement they have, every milestone they reach, will always be measured by that barometer. It'll never be, "Check out that kid, look what a great job he/she did!", but "Check out that kid, look what a great job he/she did, especially for a kid who has autism!"

Every person is a person who is able to achieve things based on their own ability, to the best of that ability. The moment we start looking at individuals on the spectrum as persons who are capable of real accomplishment--accomplishment without qualifiers, without comparing them to neurotypical individuals or even other individuals on the spectrum--is when the stigma of "different" will finally begin to fade.

By eliminating the emphasis that is placed on autism spectrum vs. neurotypical, high-functioning vs. low-functioning, the value of people on the autism spectrum will be fully realized. The notion that a person with autism is like a parcel one receives in the mail that comes damaged, whose value drops significantly because it is "defective", will be a thing of the past. And people on the spectrum, whose identities and sense of self have all but been held ransom by these barriers, will come to view themselves in a different light. A better light.

A light where disability doesn't mean less.