Blue. Everywhere blue. Buildings downtown. T-Shirts. Toys-R-Us and every chain restaurant in you neighborhood. Everyone is Lighting It Up Blue for Autism. "Care to donate for autism research?" Your waitress with shiny blue salon manicured nails asks. "You know autism is just a terrible disease. Those poor kids. You wanna help the kids, right?" She bats her blue mascaraed lashes.
During this month, the powers that be ask us to simply be aware of autism. Don't do anything. Well, if you've got some cash to donate for "research", you can certainly fork that over, but don't ask us who it's going to or what we are going to do with it. You probably wouldn't understand it anyway. Autism science is super complex mom and dad. You've got your hands full with junior anyway. Leave the science to the experts. Just keep the faith that the money you give us is going to help the kids. Probably not this generation, the previous, or the next even...but someday maybe someone will be helped. Perhaps. Possibly.
This, in a nutshell, is the Light It Up Blue Campaign. Celebrities, fanfare. Lots and lots of big corporate sponsors. Parties. All in the name of helping the children.
Let us have a metaphorical look at how the real autism community (i.e. activists and parents who know what happened to their kids) feel about LIUB.
Imagine your life is thrust into shambles by a hurricane. Yes, you live in an area where hurricanes have happened before. But never to you. To other folks you know, sure. Never you though. Imagine, you've lost your home, your family, and you've spent the last two days pinned under the wreckage formerly known as your neighbor's garage, screaming for help (for many of us autism parents this is a very true word picture). Finally, under all that detritus, you hear muffled voices, people working toward you. All is not lost. Someone is here to help. You are starved, dehydrated, and your body is broken in too many place to even begin taking inventory. The pain is unbearable. You cannot move or speak.
"They really did a nice job with the swags over there."
"Yeah, so vibrant. I love the way the blue shimmers when the light hits it just the right way!" You hear someone respond to the comment.
"I heard there's going to be a champagne toast at the big brunch today to celebrate all our hard work. I guess even the White House is going to put up blue light bulbs or something? It's a really big deal."
You must be hallucinating. Either that or you are crossing over. Is one of these jokers your spirit guide or is there seriously a party going on out there?
Finally several slabs of wet, damaged siding give way, and you see a glimpse of the blue the voices are talking about. Blankets of decadent azure fabric cover the carnage. Homes literally turned upside down are swathed in yards of the stuff. Are all those swags made of blue velvet? Whatever it is, it's everywhere. Floating on the snake, bile and bacteria infested waters. Hanging from the tops of damaged trees. Some of it appears to be covering bodies. A large tent made of the stuff has a sign that explains everything, "Celebrate Hurricane Awareness Month!"
A worker wearing a cotton version of the same blue lunges toward you. He seems downright affable. "We got another one here!" The first voice you heard belongs to him. His colleague yells back, "Alive?"
"Not sure." He responds. He leans in to check your vitals when an impressive looking person catches his eye.
"Hey Mr. Pharma! Good to see you!" he yells to the very important looking man who is wearing the same blue shirt, only his is obscured under a silk Tom Ford suit. You can tell it's custom. "Nice work on the buttons! You know the message really reaches the people!" Mr. Pharma squints and nods in the workers direction. He has a clipboard an iPhone and an entourage. They too are clad in blue tops with suit coats and executive bottoms. Mr. Pharma waves but doesn't bother looking at the worker. He's getting ready to motivate his people. "Now, this charity gave us $500,000, he says, pointing to a name on his clipboard. That's great, but I know you guys can do better. We are saving lives here. Children. Families. It's about the people and you need to remember that. I only put my name on things I can really get behind. So, when you think you can't possibly ask for another dime look around you. Look at all these signs, swags, t-shirts and buttons. Blue is the color of natural disaster. It's like the whole world thinks, blue - hurricane! You good people, you did this. Now, keep it up. I am working on some very important research with some bigwigs that will help us identify why so many people died from this particular hurricane. It is very complex, super-science-y, but I will dumb it down for you. My investor, I mean, scientist friends and I are trying to ascertain if the people who died directly as a result of this hurricane had a genetic predisposition to death by natural disaster. If they did (which we all believe wholeheartedly our research will reveal) how do we identify the Natural Disaster Gene? This is going to be huge guys. Everybody who's anybody wants in on this research! We need millions. So get to work!!"
After receiving their marching orders the entourage quickly disperses. Punching frantically into their handheld devices many of them step in puddles of filth. One executive lands face down in some bacteria laden muck. She tripped over a body. Like the now famed Honey Badger, she pops back up undaunted, straightens her soiled skirt and gets right back to her iphone. She has blood, mud, and excrement all over her face. With a smile in her voice she reaches her intended party and inquires about monies promised to her for this very worthy cause. You think the body she tripped over may have been the little boy who delivers your morning paper. It's hard to tell because death distorts things. The voices of the other victims are now in earshot. You hear babies screaming, parents crying, grandparents wailing. So many injuries that could have been avoided if only they'd have listened to the warnings. You hear a mom plead as she balances a toddler on her hip, "Our home has been destroyed. I can't find my husband. We have nowhere to go." A smiley worker-bee responds. "No worries! We've thought of everything, hon." He ushers her into a damp blue tent with a dirt floor. "You guys can stay here! Put these on, K? I got one for your little peanut too!" He hands her two blue buttons that have a big red line through a frowny face with the caption - Celebrate National Hurricane Awareness Month With A Frown Turned Upside Down! A doctor enters as soon as the voluteer departs. He's carrying syringes. The mom asks, "What are those for?" He looks at her and her child and says, "You've been exposed to countless bacteria. You have several deep cuts. You are both going to need tetanus shots. They come with the added benefit of coverage against diptheria and pertussis. He pricks them both. A teenager and his father enter the moldy tent. The boy is sweating, bleeding profusely from his midsection. His breath is shallow and his language, incoherent. His father, whom he leans into for support, speaks on his behalf. "Doctor, please can you help my son? Glass from a window is lodged in his stomach and we can't stop the bleeding."
"Oh my Goodness!" The doctor proclaims. Yes, lay him down on the floor here and I''ll be back with my medical bag. He returns with some rubbing alcohol and a band aid. The band aid is impressive. It's blue with the NHAM acronym emblazoned in bright gold letters across it. He can't remove the glass. He doesn't know how. So, he just puts the band aid over it. "There you go son! Good as new! Here's a little something to keep you motivated!" He hands him the same blue button the volunteer gave to the mother earlier. The doctor musses the boys hair and tells the mom to see her physician if there is any swelling at the injection site. All the color drains from the teenagers face and he dies in his father's arms as the doctor exits the tent. "Good luck you guys! No need to thank me! Helping people is my passion!" The doc checks his watch and heads to the other tent. The decadent one, with the pleated blue velvet, candles, porcelain place-settings and chandeliers hung by party planners. He is hungry and looking forward to today's spread.
None of this is making sense, you think. This is all so horrible. Is it really happening? Is anyone going to tend to you? Afterall, you are dying, too.
Just as the worker who dug you out turns back to help you a hysterical man approaches him. "Raw sewage! It's everywhere! I'm housing survivors! Children! I have a supply of uncontaminated food and water that could last for days if we can keep the sewage at bay. Please, help me! These people have nowhere to go and I can keep them alive until help arrives!" "No problem. Calm down." Your worker responds. He digs into a sack he has by his side and hands the man a roll of paper towel and a Hefty garbage bag. "It's two ply for tough jobs. There you go, Buddy!"
He looks down at you. He seems annoyed. It's been a long day for him, you guess. But still, he's got you now. Everything is going to be okay. Just as he reaches for your pulse someone yells out to him. "Hey! Come on dude! It's time to celebrate National Hurricane Awareness Month!"
You can't talk. You can't move. You can't communicate. You're just another body. He looks at you. Who's going to know? No one, he thinks. Just another body in the rubble among thousands. What's one life when champagne and celebrity await?
He washes up and arrives just in time for Mr. Pharma's first toast. "Thank you all so much for you commitment to saving the lives of these poor unfortunate people during Hurricane Awareness Month. We don't know why these things happen. Why all these poor people have to suffer so. No one ever knows why. We could all drive ourselves nuts asking why, right? Well! So many have been saved because of your hard work hanging those blue swags, wearing those t-shirts and passing out those pins. Pat yourselves on the backs, enjoy the drinks created by our expert mixologists, and go take a picture with one of the many celebrities on our bank roll. Remember, Hurricanes are dangerous. Spread awareness." Clink..
LJ Goes is a Contributing Editor for Age of Autism and Co-Founder of The Thinking Moms Revolution.