Link-and-Twist: ethical reporting on health impacts and breast cancer

Mark had this rule we lived by, and we did our best to pass on to the kids. If something makes you mad, don’t do anything about it for at least 24 hours. Oh, The Places You’ll Go! when you don’t go to your angry place. Usually, we found that we woke up the next day and couldn’t remember why we were bothered. Or, if something was still wrong, we could think it through and get it fixed.

Editors have a rule that, when someone asks to reprint a story, they have to print the whole thing. That’s smart. It keeps people from misappropriating your work, recasting it in a shape that fits them, or just flat-out stealing it.

For a while now, when it comes to my long-ago story on local breast cancer rates, I think I’ve been applying too much of Mark’s rule, and not nearly enough of the editors rule. Here’s the rub: if a blog post is misappropriating a story, a link to the whole doesn’t fix that. In the case of the breast cancer story, there are too many of these supposed “stories-behind-the-story” and “stories-around-the-story” that link-and-twist.

Bud Kennedy of the Fort Worth Star-Telegram passed on a tweet by George P. Bush today that shows a certain level of determination by a handful in Wild West Cyber Space to keep twisting that story.

BudsReTweet

So, I will do my duty and offer my annual defense (here is last year’s) of what was a damn good story in summer 2011.

I think it started when Robert F. Kennedy, Jr. made a short reference to it in an essay on Huffington Post that summer. He didn’t boil it down quite right. It grated on me, but his heart seemed to be in the right place and I thought, who am I to call up Mr. Kennedy and say, “Dude, linking is not enough, that summary wasn’t right, fix it.” After Josh Fox referenced  the story in 2012 in “The Sky is Pink,” an Associated Press reporter in Pennsylvania got a Texas-sized hitch in his git-along over it.

How huge? I endured a week of emails as this reporter tried, but couldn’t (or wouldn’t), find the original report with the Centers for Disease Control and Prevention about the concern over breast cancer rates in North Texas and flat-out ignored the report on the uptick in breast cancers in Flower Mound. Then, he tried to cook up numbers of his own through the Texas Cancer Registry and fell flat.

That clunky AP story should not derail this important conversation about breast cancer and the North Texas environment, because it offers no numbers, just odd quotes of alternate experts a full year after the original story ran.

Meanwhile, Florence Williams masterful book, Breasts: A Natural and Unnatural History, has stepped in to keep the conversation going in the right direction. Or so I hope. She reminds us that as little as 10 percent of breast cancers are straight-up inherited. Most are triggered by something in the environment, either lifestyle, surroundings or both. If you haven’t read her book, shut up about what you think about breast cancer in the environment because, to those of us who have read the book, you will just sound like an idiot until you do.

In other words, for a breast book, it’s seminal. (You’re welcome, Ms. Williams.)

The good people of the Barnett Shale know what those breast cancer numbers meant in the original story — a friend, a neighbor, a colleague, a loved one who is suffering. One fellow in Double Oak so took to heart that spun-up criticism by the AP that he devoted a chapter in his book about it. Tom Hayden is a retired math professor, not an epidemiologist, but, Hey Martha! (that’s a dog-whistle to you budding epidemiologists out there) if he didn’t find something interesting: He compared breast cancer rates for two Texas cities about the same size, Fort Worth (shale) and Austin (no shale), and did the math. He appears to have found statistically significant differences in the rates, especially when examined by race.

I want to share one last thought for the really smart readers out there, and for those journalists who remember graduate school lessons about things like hegemony and logical fallacies.

Ask yourself this when you are reading a news story about the health impacts of the shale boom: does the underlying theme in this story assume that not just higher cancer rates, but statistically significant higher cancer rates, are necessary in order to change the course of this policy or practice?

There are scores of other health impacts, too, and they can be costly. To bring such a level of skepticism about health impacts and cancer risks to writing a story? I won’t do it. That’s just messed up.

Moreover, good journalists are not stenographers. We aren’t supposed to sit down and re-write the executive summary proffered by the bureaucrat and call it a day. We’re supposed to be in the community, listening, watching. We’re supposed work hard to be the light on the dark corner, the first draft of history, the dot-connector, the bellwether.

That’s what I did with the breast cancer story. All kinds of people read the news to understand what’s happening in their community and to better inform their work, and that includes scientists. The really smart ones are looking for clues to the next paradigm shift.

So, after the original story ran in 2011, maybe that’s why UT-Southwestern called me and asked for reprints of it. They told me they wanted copies for their team.

Doesn’t sound at all to me like my sources thought I got the story wrong.

There is a still a lot of work to be done in Texas. Tens of thousands of wells have been dug and those of us who drive the back roads and talk to people and know the patterns of history have got a pretty good idea what’s coming next.

The rest of this breast cancer conversation has to be taken up by you smart and discerning readers out there. You need to keep it going in the right direction.

I just got back from The Mayborn Nonfiction Conference and I need to get back to work. But if I have to, I’ll be back next summer for my annual defense of the breast cancer story.

summer

 

Treatment and prevention, or blue-washing?

I don’t think we, as a nation of educated people, as a country of incredible resources, as a culture, as the ostensible leader of the  so-called free world, are very good at fixing problems.  Many problems we had when I was a young woman are still around. Some have gotten worse.

We think we’ve made progress because we talk about our problems. Families get support in the community to raise their kids with autism, instead of quietly sending them away to an institution. Women get breast exams and mammograms instead of being embarrassed to discuss concerns with their doctor. People recycle their bottles and cans instead of sending them to the landfill.

We’re being green. We’re wearing pink. We’re lighting it up blue.We’re aware.

Good things all, but they don’t have anything to do with preventing some serious and growing problems.

The occasional greenwashing we get from some environmental groups keeps us from solving problems. The Sierra Club promoted natural gas until they were against it. Can you imagine where we would be now if they, the Natural Resources Defense Council and the Environmental Defense Fund had been more worried about an ounce of prevention from renewables than that compromise for a pound of coal-powered cure?

Then there’s the Komen problem. Many have been trying to cast a brighter light on that group’s pinkwashing for a long time. All these promotional tie-ins and three-days and commercials and messages have actually confused some people into thinking that finding breast cancer early is the same as preventing it.

Uh, no. It’s time to pay for prevention. My mother had breast cancer. Let’s see what we can do to prevent my daughter from getting it.

What of this burgeoning world of autism research and advocacy? When Sam was diagnosed, we were told that he was one in 10,000 or more. Autism was rare. I didn’t know anyone else whose child had autism. Now we’re at 1 in 88. It takes more than two hands to count all the kids with autism that grew up here in the past 15-20 years in Argyle, a town of 3,000.

Aren’t you afraid? You should be afraid. I am. You should be very afraid. Your-stomach-up-in-your-chest afraid.

People who want to help are trying. (And if you know what the day-in-the-life for families of kids with autism is like, finding time for that is its own kind of miracle.) They are raising money and advocating for more research.

When I visited the Autism Speaks website to look at the latest in research, I got kicked to pop-up page, insisting that I sign a petition about insurance before letting me land on the web page I sought.

I get that. Parents need help paying for treatment. But it was in-your-face. It was slick. It was just a little too Komen for me.

I hope it’s just because they have some really good people working for them. I hope they don’t get lost. I hope we aren’t in for a generation of blue-washing.

No amount of blue light bulbs you buy at Lowe’s is going to light this darkness.

We need prevention, and we need it now.

 

Being clear about vaccines and autism

Recently, I heard from a reader who thought one of the take-away messages from See Sam Run was that I believed vaccinations caused Sam’s autism.

I don’t believe that. I believe Sam’s autism began during pregnancy and he showed signs of it as a newborn — so much so that my father picked up on it in Sam’s first week of life. I doubt our family will ever know what caused the autism. But I am glad that researchers are looking both at genetics and environmental triggers. Chances are, we are going to learn that it isn’t the “dose that makes the poison,” but that some women and their babies are more susceptible to endocrine disruption. 
Although, a concept in Florence Williams’ new book, “Breasts: A Natural and Unnatural History,” gave me pause. She outlined research that has shown women bodies will unload their chemical burden on their first babies. It’s awful to think that is possible, but I know what I was exposed to as a teenager, and in my 20s, and neither were ideal baby-making environments.
For parents who have read a lot on the vaccine topic, I recommend weighing all that online “research” against the summary of research in Paul Offit’s “Autism’s False Prophets.”
And, to put your mind at ease about vaccines for your baby, you can ask your pediatrician space them out and that they be given without thimerosal, that mercury preservative.
All our children were vaccinated with everything. I wouldn’t dare take a chance. I’m so sad that people aren’t vaccinating — either for fear of autism or because they are too poor for good preventive health care. Babies are dying of whooping cough. That’s just so preventable.
Really.

The bootstraps paradigm (and how Texas can’t get it up)

My sister, Chris, calls most Sunday nights. The routine started not long after Mark died. After a year or so, I told her she really could stop checking on me, but she calls anyways. We catch up and have a laugh or two. Last night she asked what’s new and after I waxed about my new shoes, I shared what I learned Saturday at a local workshop on supported employment put on by The Arc.

Chris didn’t miss a beat when I shared an eye-popping statistic with her about Texas and its Medicaid waiver programs for people with disabilities.

“Texas really means that pull-yourself-up-by-the-bootstraps thing, don’t they?”

Yes, they do.

Even if you have cerebral palsy.Even if you have a C1-C7 spinal injury. Sheesh. Even if you have no arms.

During the workshop, we heard from both the family and the supervisor of a man with autism. He has worked at the Austin Hilton downtown for nearly five years as a hotel steward. The family was incredibly inventive and determined. The hotel management is both smart and compassionate. The man is able to speak through a bit of sign language, and it has worked out fine. The hotel alluded to the story of another man on their staff who has autism (I know this story from the people at Marbridge), so this wasn’t a one-time thing for them, either.

The main thing I learned is that “social service” in Texas is DIY.

The mother of the hotel steward also is an advocate. She passed out a fact sheet that listed how many people in Texas were receiving employment services through the state’s Medicaid waiver programs. (Read the material in the link to understand the nuances. But suffice to say, if a person with a disability needs services, you can apply for help through one of these programs instead of checking into a state-supported living center.)

School officials and other advocates advised Mark and me to put Sam on the waiting list when we moved to Texas. They said it could well take 15-20 years for him to work his way up the list. If he were receiving services through CLASS, the program that would best fit his needs, he would join all the other people in Texas receiving employment services through this waiver program. And that number is …

2

You read that right. Two.

In a state of 25.6 million people, we have found the resources to help just two people with disabilities, people like Sam, with employment services.  To be fair, there are more people getting employment services in the other waiver programs, but not very many — about 500 or so, in the entire state. I would bet that most, if not all, of them are working in sheltered workshops. In other words, still some distance from a full, independent life in the community.

The hotel steward’s mother described the same problem I had last year when I called DARS, another place to find help with employment services. DARS told her, too, that she had a better chance of helping her son find a job than they did. When she called the various employment support service groups, she confirmed what DARS had told her. Most of the vendors were out of business. To get started, her son’s ABA therapist became certified as a DARS provider so he could be the job coach as he learned to be a hotel steward.

Dear Texas: I reject the notion that this is benign neglect. What does it really cost the state to neglect this pool of workers? Sincerely Yours. P

The bottom line for our family is what I have suspected for some time. I have to go along with Sam, as I have several times already, in his job search. He stands a much better chance pulling up his bootstraps if I put mine on, too.

 

 

Ok, I’m just going to come out and say it …

When I wrote See Sam Run, I was filled with gratitude, and no small measure of awe, for the teachers and administrators of Argyle schools. It took a team to get Sam to high school graduation and we passed out nearly 250 “Team Sam” buttons to all those people who made it happen.

It started with Gaye Pittman, principal of Argyle Elementary, who turned off the school bells because they bothered Sam. She bought everyone time to figure out another way for him to get past his fixation on when the bell would ring.

What a heart they all had!

Now, again, our district is in the national news. Last time it was for that manufactured outrage over immodest prom dresses and dirty dancing. That was the class legacy my youngest took with her to an out-of-state college.

Yes, really.

This time it’s because, as far as I can tell from reading news reports —

News 9 new results for Denton
 
Texas mom accused of placing camera in locker room
Bradenton Herald
A North Texas middle school principal is accused of placing a hidden video camera in a locker room during her daughter’s high school basketball game to see how much the coach yelled at the players.
See all stories on this topic »
Wendee Long, Middle School Principal, Accused Of Hiding Camera In Girls 
Huffington Post
DENTON, Texas — A North Texas middle school principal is accused of placing a hidden video camera in a locker room during her daughter’s high school basketball game to see how much the coach yelled at the players. Wendee Long, 46, was indicted by a 
See all stories on this topic »
Texas principal accused of secret locker room video of coach
USA TODAY
Wendee Long, 46, principal of the Wayside Middle School in Fort Worth, was indicted last week by a Denton County grand jury. She posted $25000 bail and has been placed on administrative leave pending an investigation by the Eagle Mountain-Saginaw 
See all stories on this topic »

USA TODAY
Firefighters battle heat, house fire in Denton
Lexington Dispatch
DENTON | Firefighters with the Denton Volunteer Fire Department battled a house fire and temperatures in the mid-90s at a home on East Carroll Avenue on Thursday afternoon.
See all stories on this topic »
Mission Denton: Making Disciples
Dallas Baptist Standard
The Baptist Standard :: The Newsmagazine of Texas Baptists, Amber Gonzales–My first impressions of Mission Denton were not what I had imagined. It actually turned out to be much more intensive than I had originally thought—which is great!
See all stories on this topic »
Texas Principal Accused of Planting Camera in Locker Room
ABC News (blog)
If convicted, she could face a $25000 fine or 20 years in prison. Long was released Tuesday on a $25000 bond, according to ABC affiliate WFAA-TV. “The intent is to invade someone’s privacy,” Denton County Assistant District Attorney Jamie Beck said.
See all stories on this topic »

ABC News (blog)
Word perfect
Denton Record Chronicle
Music Theatre of Denton packed houses for its last show, the cheeky Avenue Q. The local music theater company could have chosen to put on the brakes for the next production. But instead, the company stayed in the same gear — irreverent comedy that 
See all stories on this topic »

Denton Record Chronicle
Texas principal on leave in locker-room recording case
Kansas.com
The principal of a middle school in Fort Worth was put on administrative leave after telling her supervisors that she may face charges in Denton County in a case involving a video recorded in a girls locker room, a district spokeswoman said this week.
See all stories on this topic »

— what another reporter once asked about Argyle ISD, really needs to be asked. One of those truths that’s hard to see from the inside, but plain as a termite swarm on the outside.

(By the way, just because I work in a newsroom doesn’t mean I know more than what anyone else knows.  On many occasions, I’ve felt, as a journalist, to be the last to know. Newsmakers know that once a journalist finds out, everyone who reads a paper is going to know. I’m not talking about Long’s guilt or innocence. That will be sorted out soon enough.)

Here is the question.

What is it about Argyle ISD that makes the adults eat their young?

Overheard in the Wolfe House #183

Peggy (talking via Skype): There’s a turkey hen living on our land.
Grandma: Oh, I saw a documentary about turkeys recently. It was called, “My Life as a Turkey.”
Michael: Was that about George W. Bush?

Position of trust

Emails have been flying for the past week from Riding Unlimited, although I have yet to see anything official from the board of directors. All we know in the Wolfe house is that two people who have been a part of Sam’s extended family for more than a decade are suddenly gone. And just two weeks before RU is to host regional Special Olympics, we hear rumors of a “new direction.”

Sam is upset that a place that is as important to him as his home, his school and his church now appears to be in jeopardy. Thank goodness he’s a level-headed bloke and he’s not making any big moves just yet.
I have this much to say for now. Nonprofit boards often go through periods of weakness, and so the staff and volunteers get strong, or the entity folds. It’s when boards try to right themselves that things get truly dangerous.
They forget what sustained them in the down time.
And then they do the one thing they shouldn’t. They bite the hands that kept them alive.
How did they get through a down time? It wasn’t money. Nonprofits never have enough money. Ever. Get used to it.
What sustains them is passion and caring and a sense of community.
What sustains them is people.
The things we value most in life have seemed, to me, to also be incredibly fragile. Few people are wise enough to be responsible for those fragile things.

Disappearing stairs and the washing machine

When I was a little girl, I had a recurring nightmare that always began in the basement of our townhouse (We lived in Milwaukee. Townhouses had basements.)

My mother would be sorting laundry and putting on another load, and I would be playing nearby. Then, I would become preoccupied and not notice that my mother was done and heading back up the stairs.
Now, in the rules in my dreams, I’m supposed to go up the stairs first, with my mother behind me. Because if I didn’t, then the stairs would disappear underneath my feet and I wouldn’t be able to get safely back up.
Stuck in the basement, I would have to deal with the washing machine, which would stop being an inanimate object and become a monster. That’s usually when I would wake my 8-year-old self up and try to dream about something else when I fell back asleep. Usually, it worked.
As I grew up, I learned to fly above disappearing stairs in my dreams. That felt kind of cool. Then no matter when stairs showed up in my dreams, I was always flying over them, grounding myself at the last minute, before I “fell.”
Sometimes, when you’re little, I think you have a better handle on the world than you do as you age.

Cleanliness is Next To Impossible

The problem with putting your house on the market is that people come over. And before they do, you have to clean it.

A lot.

And not that Erma Bombeck way, where you just give it a sweeping glance.

Opening our lives this way has been traumatic for Sam, but he’s getting better. I got just a little ptsd leftover from when we sold our home in California in 1993. At the time, I was pregnant and chasing two preschoolers. We lived in a 1,100-square-foot house with a forest of tubas in a “hot zip.” Real estate agents were supposed to call and schedule a visit, but they would sometimes pull up to the curb and “call.”

After a while, I gave up. They could just tour a messy house — dirty diapers, toys, dishes, tubas, and all.

Here, we live too far off the beaten path for people to take a chance on pulling up and getting permission to see the house. But I am tired of always being “on” with the cleaning. This market is a lot tougher. I’ve got the place priced competitively, so we have too many people coming through. Some rooms in the house have taken on a museum-like quality.

My mother has that kind of tidiness in her house. My sisters do, too, at least in certain rooms.

I’ve not ever been that way. It’s not like I don’t know that I should clean the refrigerator once a month to discourage listeria, but it’s amazing how long I can go when I think no one is looking.

I vowed to get better the day that Michael and Paige came running into the office — I was writing something — to announce that a spider nest hatched because there were a thousand baby spiders on the living room ceiling.

They thought it was really cool, but decided that leaving it to nature wasn’t a good idea. And there really were a thousand baby spiders on the ceiling. I vacuumed for about an hour.

After that, we worked out something called Hour of Power. We put about two dozen small cleaning jobs on slips of paper in a bowl, the kids would roll the dice and take turns picking jobs on a Saturday or Sunday morning. Mark and I would do the tough stuff, like mop the floors or address whatever disaster had been waiting all week (the refrigerator, for example.) By the time we were done, it looked good and lasted almost til the next Hour of Power.

Those were the good ole days.

Well, back to cleaning.