Friday, January 06, 2006

SOME CANDLES CAN’T BE EXTINGUISHED: THE LEGACY OF LIZ BIRT



The other evening, members of the autism community were encouraged to light candles and observe a moment of silence in memory of Liz Birt. Judging by the buzz on the internet that evening, a lot of candles were lit.

Candles carry such a powerful symbolism, even apart from the obvious religious imagery. They remind us of the light someone has brought to a world sometimes shrouded in darkness (and within the context of Liz Birt and autism, by darkness I mean the lack of attention given by the rest of the world and not the condition of autism). A lit candle may also symbolize the fire that true leaders may ignite in the rest of us.

I did not have the privilege of knowing Liz Birt, so I cannot speak for her as to what she would like her legacy to be. But I think she would be proud to know that she inspired people like Mary Webster and Lenny Schafer.

Mary is one of the people my wife and I have gotten to know since falling into the world of autism. Mary is articulate, dedicated, and she is determined to heal her son. The death of Liz Birt, who she never met, has moved Mary to lift her voice. She sent us a copy of an email she wrote to Dan Olmstead, the journalist who is behind the “Age of Autism” series, along with the photo that appears at the top of this post. Mary also shared some thoughts on what inspired her to write Mr. Olmstead in the first place.
What constitutes a hero or a role model in this country is something I’ve been thinking a lot about lately. (Also, what attracts our collective -- and the media’s -- attention.) The year in reviews I saw were focused on Tom Cruise jumping on Oprah's couch and the Runaway Bride from Georgia. It’s really alarming!

There’s been some discussion on the EOH and CK2 boards lately about Oprah and Bill Maher and attracting the attention of celebrities to our cause. Maybe I’m a dope, but I don’t think that's the answer, really. Do we want to live in a society where an issue MUST be addressed on a certain talk show or touted by a celebrity to facilitate social change? Gads!

So, with that in mind, I sent this message to Dan. It’s a bit like preaching to the choir, but he’s a good listener and somehow I don’t think Brian Williams is really interested in what I have to say, do you?

Peace,
Mary

P.S. This breaks my heart and I didn’t even know her.

* * * * * * * * * * * * * *

Dan,

This is Matthew Lopez. He’s 11 now, but was nine years old when this photo was taken. He doesn’t speak and has begun having seizures. Matthew’s fearless mother, Liz Birt, has been fighting for the truth for Matthew and other children like him for years. She died in a car accident recently.

If a tree falls in a deserted forest and no one is around to hear it, does it make a sound?

Now that Liz is no longer able to speak for Matthew, will anyone hear him? Liz could hear him, even though he could not speak.

Tom Hanks is an actor. Michael Jordan is a basketball player. George Bush is the president of the United States.
Liz Birt was a hero.
Mary

That’s the impression Liz Birt left on people like Mary Webster and me: people who never had the chance to really know her, but who had a little more hope in their lives because she cared.

Considering the impact Liz’s death had on people who never met her, how much harder has the last week been on those who were in the trenches with her? Lenny Schafer knew Liz as a friend. In a recent post in the Schafer Autism Report, Lenny told us about the funeral for Liz, and he gave us a glimpse into the passion with which she advocated for our kids.
“How are you doing, David?” I asked as we both walked up the stairs to the cemetery. Before he could answer I added, “Stupid question, huh?” David Kirby and I were both there amongst others in Kansas City today for the funeral of our friend Liz Birt. "It's still nice that you asked,” he answered. His face answered the rest of my question, reflecting back my own. I had to cast my eyes away.

From Liz Birt:
November 3, 2005

Dear Senator Enzi:

. . . This past summer I spent over 300 hours preparing a detailed memo for your staff in order to assist them in evaluating the role that our federal health agencies have played in the use and promotion of use of vaccines containing a known neurotoxin, thimerosal. I spent hours with your staff and arranged for many key scientists to present information to your committee.

I have been told that the investigation is ongoing but I urge you to make this a priority. Just today, a paper authored by Dr. Thomas Burbacker, an associate professor in the Department of Environmental and Occupational Health Sciences at the University of Washington’s School of Public Health, was released by Environmental Health Perspectives, a peer reviewed publication of the NIH, demonstrating in primates that ethyl mercury in the form of thimerosal is far more toxic to the brain than methylmercury. The CDC is now encouraging everyone including babies and pregnant women to get flu vaccines that contain thimerosal, a known neurotoxin. This is at best reckless behavior on the part of our public health officials.

To me it is immoral.

Fellow Californian autism activist Rick Rollens and myself arrived the day before on a direct flight from Sacramento. Rick was a good friend of Liz’s and he had called me just a few days earlier to offer his frequent flyer tickets to me for my fare out there and back. As a single parent, my attention this time of year is split between taking care of my children, producing a daily autism newsletter and fighting off the dead of winter blues in social isolation. Only now, there was a dead dear friend, too.

We arrived at the Kansas City airport early Wednesday afternoon, only there was almost nobody else there. The airport was so empty and quiet, it seemed like it was closed. We picked up the rental and drove our way a half hour into town to the Sheraton. Almost no traffic and no pedestrians. “Did some neutron bomb go off around here or something?” asked Rick, “where is everyone in this town?” I answered, “maybe we’re in the twilight zone.”

Liz continues to Senator Enzi:
I have spent the majority of my professional time since 2000 working on the issue of whether or not vaccines are related to the epidemic of autism that is plaguing our country. I have been hopeful that our federal government would take the lead in investigating this issue. I spent many hours reviewing documents provided by our federal health agencies and pharmaceutical companies relating to this issue when I was on staff for the House Committee on Government Reform and as counsel to SAFEMINDS. What I found was shocking. After seeing the text of Senate Bill 1873 I no longer have faith in our elected officials in Washington.

Rick Rollens is one of those paradoxical guys who is socially and politically popular, yet is never completely comfortable at social gatherings. Funerals have to be way down on his list of public functions to attend. Only his love for Liz could get him to be there. Rick’s political life has made him a lot of friends. From my newsletter publishing, I know a lot of people. Out of all of them between us, we agreed that only a handful are special angels. And now one is gone. The loss is immeasurable.

Liz continues:
The cost to society of vaccine-induced illness, especially autism, are enormous. We have a tidal wave of children who are neurologically impaired in this country and no one in Washington is doing anything productive to find out why. In addition, autism is now being diagnosed in huge numbers in developing countries where American pharmaceutical companies have been shipping thimerosal containing vaccines. I recently received information that China may have as many as 5 million children with autism and that this is a new disorder to that country. What will the world say about our nation when the truth comes out?

“Let’s skip the Rosary,” I suggest. The viewing and funeral are enough for me. Rick agrees. “We are here to show support for her family as well as to grieve for ourselves,” explains Rick. “Yes, but I don’t think they'll need our support at the Rosary.” We both rationalize our decision; I’m Jewish and Rick’s not Catholic. Neither of us knew exactly what was the Rosary was anyway. But we knew Liz wouldn’t mind. Neither of us could remember her ever mentioning the Rosary when she was alive. Neither of us knew she was Catholic. But we both knew she was a saint.

Liz concludes to Senator Enzi:
It is time that federal elected officials get in touch with the people who elected them to office. There is a huge disconnect between what goes on in Washington and what is happening in our communities. I truly believe that the solutions to this problem will come from the individual states who are shouldering much of the burden of this epidemic. It will only worsen as these children age and become dependent on the states for services. When the public realizes what has happened they will vote those responsible out of office. I believe in democracy and justice. In the end historians will write that in the case of the “thimerosal generation” the coverup was far worse than the crime.

The day before Lyn Redwood called me to tell me Liz was gone, I had rented the movie “Million Dollar Baby.” The Four Academy Awards! rating could not pierce my mid-winter’s night funk. Big deal. A cliché boxer movie with a gender-bender twist for a gimmick. Have the leading male role cast as an asexual female who was not too pretty and not too butch. The stupid novelty successfully bedazzled the public and the critics, I harrumphed to myself.

Liz was hit broadside by a small truck in a car wreck outside Aspen Colorado. “Liz never revived before she died at the hospital,” explained Rick. “They didn’t know until she got to the hospital that her neck was broken from the impact.” The timing and parallel to the movie was too spooky: a hero struck down in the prime of her career.

Mary Webster and Lenny Schafer had different levels of connection to Liz Birt, but they both used the same word to describe her: hero. It’s a word that we bandy about far too often, using it to describe actors whose performances we admire or athletes who make us cheer. On occasion, though, we find a real hero who inspires us because she chooses not to take the easy road; because she fights for the common good; because she leaves the world a better place. Real heroes inspire us to light candles. And that’s quite a legacy.

3 Comments:

Blogger Kristina Chew said...

And the exhort us to carry on the work still to be done, and to follow their example, however paltry our efforts.

She'll be remembered as a model of all an autism mother and, really, a human being can do.

1/7/06, 12:28 AM  
Blogger SquareGirl said...

Wade,
For someone who has never met Liz, you have honored her with a beautiful tribute...this is a tragedy and serves as a reminder, that however uncomfortable it feels, it is so important to follow Liz's example and raise my voice...

1/7/06, 2:14 AM  
Anonymous kyra said...

oh my goodness, wade, thank you so much for posting that. it made me cry. liz was a true hero and a powerhouse woman. i wish i had known her. i'm glad her life touched so many and i'm deeply saddened that it can no longer touch her son's in this world.

what a beautiful post.

1/7/06, 2:57 PM  

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